My transplant journey

I decided to use the texts and facebook posts from Levi to document my transplant and stroke journey. I added several pictures that neither Levi or I have shared. Disclaimer: some images may be disturbing.

Friday, May 4th 6:28 pm

Stanford called. They have a possible match. Since I'm in the ER they are doing a hospital to hospital transfer. I should be leaving soon.

6:40 pm

They said air med is already on its way. Just a side note: I always said May!!!!!

7:15pm

Ambulance is enroute to pick me up. Air fed team and jest are read for me at the airport.

May 4, 2018

Being loaded into the ambulance at UofU Hospital to get new heart and lungs.

The note written on a cracker box that was given to my mom while working in the Oquirrh Mountain Latter Day Saint Temple.

Aboard the life flight plane heading to San Jose airport.

In the ambulance with the flight crew who took me from San Jose Airport to Stanford University hospital.

Getting settled and prepped for the transplant.

A screenshot of number of individuals on the heart/lung transplant wait list

8:18 am

They should be taking me down anytime. They will start on the donor the same time as me. They have to see the organs before they can confirm that they are perfectly healthy. They said it's a done deal when I wake up with new organs in me.

8:24 am

Yesterday's adventures. Ambulance ride to SLC airport, flight to Sand Jose airport, and ambulance ride to Stanford with my awsome air med team (Butch and Lisa) that stayed with me the whole time.

May 5 9:23am

Joan, Cindy, Randy, Kim, Richard, Stephen I’ll use this text thread to keep you updated on Sandra. At this point we’re still just waiting for them to come get her for surgery. ETU is 9am Pacific time. Will keep you posted. -Levi

9:42 am

Dr. Poku just called to tell me he's been praying for me and wishing me luck.

9:59 am

I just signed consent. They will be getting me soon. I'll wait in the OR until clearance with the organs and then they'll start. The donor is not at the hospital. They said the surgery will last all day and possibly into the night.

10:02am They just came in and had Sandra sign for consent. She will be heading to the OR shortly. Operation probably won't start for a few hours though as they need to verify the organs before putting her on cardio pulmonary bypass. 10:26am They just took her into the OR. Next update will be in a few hours after they have verified organs and put her on cardio pulmonary bypass. At that point it’s new heart and lungs or bust. -Levi

Please pray for our dear Ward Family member Sandra Lee Ames Smith who is at Stanford University Medical Center this morning for her heart and lung transplant. Much love and many prayers.

Bishop Brosnan

1:04 pm

So we’re still just waiting for the donor verification to complete. They called me about 30 minutes ago and said it was still in process. Confidence is high though.

Levi

1:45 pm

Just got an update. Donor match is good. They are putting Sandra to sleep now to start the procedure. Operation will be a long one and will go into the late evening. Will let you know things as I hear them. #TheWaitingBegins

Levi

5:31 pm

Nothing new to report. She's been in surgery for about 4 hours now. I assume all is well since I haven't been notified there are any issues. Will continue to keep you posted. -Levi

7:39 pm

Just got an update from the docs. Sandra's surgery is going great. The heart and lungs are in. They are still working on some hookups and plumbing stuff but overall doing great. No complications thus far. They expect her to be out of surgery in a few hours and moved to the ICU. Will continue to keep you posted -Levi

10:08 pm

Her status on the surgery board just moved to closing so she should be out of surgery soon. -Levi

Saturday, May 5 11:21 pm

Surgery board was just updated to surgery complete. Guessing she will go into recovery next. Not sure yet on when I will get to see her. -Levi

Sunday, May 6

From Levi: I just talked to the doctor. She’s finally in the ICU and I will get to see her in about 20 minutes. The surgery was a success however she started bleeding just before they were getting ready to transfer her from the OR to the ICU so they had to get that under control and do another blood transfusion. They got the bleeding under control and got her chest cavity cleaned out. Doctor says everything looks great now. I’m going to see her in about 20 minutes and then head to the hotel. This will be my last update of the night. I’ll send another update later today after I’ve gotten some sleep and a shower and get back to the hospital.

Sunday, May 6

Good morning all, So, I got in to see Sandra around 2am Pacific this morning. She was under heave sedation and they only let me see her for a few minutes but they did say she was doing very good. After that, I went to the hotel to get some sleep and a shower. I got back to the hospital around 10:30am this morning. Sandra’s mom and brother flew down last night and are here this morning. Our bishop flew in yesterday and kept me company in the waiting room as well. When I went in to see her this morning she was much more alert. She can move her arms and legs and open her eyes at times. Her fingers,toes, and lips are all pink. I’ve never seen her skin that pink which is a good thing. Means she is getting lots of Oxygen. Her heart rate is in the low to mid 90’s which is a normal O2 stat for a normal person. Yay!!! Her heart sinus rhythm is a normal one. Big yay!!! The doctors and nurses taking care of her are doing a great job. They are doing some breathing tests on her now and if all goes well she could come off the breathing tube later today which will make her very happy. She more than once gestured that she wants that out. I told her you were all praying for her and thinking of her. Thank you to all for all the support. Can’t believe how quickly this has all happened. We only spent 30 days on the waiting list which is incredible. We still don’t know much about the donor other than he\she was low risk and was brain dead as of Thursday. Sandra told me Friday morning that she had a very strong feeling the donor was a young female. At some point if the donor family is willing we will be able to communicate via mail thru an intermediary. Well, that’s it for now. -Levi

Monday, May 6

Good evening, The breathing tube is out. She has a mask over her mouth and nose (Bi-Pap) now that helps her to take deep breaths and get used to those new lungs. She seems to be much more comfortable now that the breathing tube is out. She also seems to have cooled down some (she was saying she was hot most of the day). Med wise they have her completely off the sedation drugs and have weaned down her pain meds. Overall today has been a good day. Will send another update tomorrow. Have a good evening!! -Levi

Monday, May 6

I know I said that earlier would be the last update of the day but we had another exciting development. She was able to come off Bi-Pap after just a few hours. Her vision has cleared up and she can now talk albeit with a soft quite voice. Here is the latest picture of her without Bi-Pap and her current stats.

Monday, May 7

Good morning, Wanted to get out a quick update this morning. Sandra is doing really good. She has been sitting up and has even been on her feet (standing up) a couple of times. She’s really congested right now (normal) so they have her doing breathing exercisers and treatments. She is eating ice chips and has a swallow test scheduled for later today. She may also be losing a few of her chest tubes today (she has 6 right now). She is regulating her body temp fairly well today as well, yesterday she was really hot. Today she seems very comfortable and get this, she doesn’t even want any blankets on her. Her days of always being cold may be behind her. The nurses also said she could talk to Zoe on the phone this afternoon when Zoe gets out of school so she is looking forward to that. All he stats are still really good. About the only bad thing to report is that she couldn’t really sleep last night. That’s pretty normal though. She’s hoping for a better night tonight. Well, that’s about it for now. I’ll send another update towards the end of the day. -Levi

Monday, May 7

Good evening, Today’s been a bit of a mixed bag for Sandra which the nurses say is normal (usually days 2&3 are hardest). She started out the day pretty good but fell back a bit in the late morning and afternoon. 1st, she failed the swallow test which means she had to be put on a feeding tube. It’s temporary and will most likely come out tomorrow after they do another swallow test. 2nd, she’s developed a bit of a weeze and cough. This is also normal but it does require her to really work at keeping her airway clear. 3rd, the 6 drain tubes coming out of her chest still have some stuff coming out of them so they opted not to remove any today. They will reassess tomorrow. 4th, she’s been a little disoriented this afternoon. Not really bad but enough to notice. They are still working at getting her drugs dialed in plus she is tired. Now on the good front, she got to talk to Zoe on the phone for a few minutes today and she was able to sit up in a chair for a few hours this afternoon. See picture below. Well, that’s about it for today. I’ll send another update tomorrow towards the end of the day. Thanks again to all of you for your love and support. Have a good evening!! -Levi

Tuesday, May 8

Good afternoon everyone, Today has been another up and down kind of day. I got a call from the hospital at about 6am this morning. Sandra asked that they call me to tell me that she needed me. She put Sandra on the phone and she was in tears. She was having trouble breathing and was really anxious. When I got to the hospital Sandra was sitting in a chair really upset. She was still pretty anxious and indicating she was having trouble breathing. All her stats looked good so she was getting plenty of Oxygen but because of that crud that got into her lungs, it was a lot of work for her to breathe. She also couldn’t sleep much last night (in spite of getting some sleeping meds) as well which added to her anxiety. After a bit, the nurses and I were able to get her calmed down. After the doctors came by, they decided to remove 2 of the 6 chest drainage tubes, remove some of the unneeded lines (1 in her groin), and do a bronchial scope and suction to get the crud out of her lungs. She also had her first bowel movement post surgery. After all that, she started doing a lot better. This afternoon they started dialing down the EPI drip (being used to boost her blood pressure). Dialing down the EPI is a good thing as it means her heart is getting stronger and able to take over more. They also continue to wean her off pain meds. Physical and Occupational therapy came by and worked with her a bit and got her on her feet. No speech therapy yet so she’s still on the feeding tube. Not sure if she will lose that today or not. The plan for tomorrow will be to hopefully remove a few more chest tubes, get her off the feeding tube, reduce the EPI and Oxygen more, and get her walking. Doctors think she will be moved from the ICU to a regular room tomorrow or Thursday depending on her progress. I’ll send another update towards end of day tomorrow. Thanks again for all your prayers, love, and support. We really appreciate it!! -Levi

Wednesday, May 9

Good afternoon, Lots of things have happened since my last update. 1. With the help of Ambien, she got a good nights sleep last night. She only woke up once. 2. They weined her completely off EPI with no impacts to her blood pressure. 3. They have changed her pacing settings on her heart from 120 to 100 with no adverse impacts. 4. They reduced her Oxygen from 5ml to 3ml today. They reduced her from 10 to 5 yesterday. 5. They removed a few more lines and wires from her. She’s looking less and less like a cyborg everyday. 🙂 6. They indicated today they were going to remove 1 or 2 of the remaining chest tubes today. That being said, it hasn’t happened yet and I suspect it probably won’t happen till tomorrow. 7. She continues to use the commode for bowel movements. 8. They have recommended she be moved from the ICU to a regular room. That being said, one has to be available so that may not be tomorrow. Well, that’s all the good news. Now for the bad. Sandra spirits have been a little low today. She’s constantly thirsty and hasn’t been getting enough nutrition as they’ve had problems getting the feeding tube in the right spot. All she has really had is 1 ice chip every 15 minutes. Her swallow test (which was supposed to happen this morning) got pushed to the afternoon. All that got her pretty down cause she was pretty sure she would fail it anyway. A little bit ago they did the swallow test and they cleared her for liquids and mechanical soft foods (applesauce, etc..) that made her very happy as you can imagine since she really hasn’t had anything to eat since last Thursday. I’ll be picking her up a Jamba Juice tonight fir dinner for her. #CarribeanPassion I’m doing ok. I was worried about her last night so I slept in the waiting room in case she needed me. Managed to get a few hours in spite of the uncomfortable chairs\mini couches. 🙂. I’m going to pickup the keys to our apartment this afternoon as I got that all squared away, yay!! Well that’s about it. I’ll send another update tomorrow afternoon. Thanks again everyone for al your prayers, love, and support. -Levi

Thursday, May 10

Good afternoon, When I got to the hospital this morning I was greeted by a smiling happy Sandra. She had a good nights rest and was a little stronger thanks to the nutrition she has been getting both by mouth (soft foods and liquids) and the feeding tube thru her nose. They decided to leave that in as a backup and it finally moved into the right position so it could be used. Her voice is much stronger today and she has been out of bed a lot more today. In fact, she even went for a walk (with the walker) around the ICU. Below is a picture of her on the walker. She’s still got some wires and tubes coming out of her but nothing like what was hooked up to a few days ago. They also had her weined off Oxygen last night but decided to put her back on it this morning (2ml). Yesterday I said that she would be leaving the ICU today but unfortunately, they were concerned about a couple of her numbers so they put her back on EPI last night. They are in the process of weaning her off that today and hopefully she will be moved to a regular patient room tomorrow if they get her off EPI. All in all she is in very high spirits. I was able to arrange for her to talk to Zoe on the phone and a lady from the Palo Alto Ward (Suzy) came by and visited her today. Well, that’s about it for today’s update. I’ll send another update tomorrow afternoon. Have a good evening!! -Levi

Friday, May 11

Good afternoon everyone, Short update today as there hasn’t been much that has happened. Once a bed becomes available over in the patient unit, Sandra will get out of the ICU and be transferred there. We’re hoping today but it might be tomorrow. In the meantime, Sandra continues to work at eating more and getting stronger by sitting in the chair. The cath was removed so she does 1 and 2 now in the commode. She’s also supposed to be losing 1 or 2 more chest tubes (she has 3 now) that being said l, they haven’t done that yet so my guess is it won’t happen till tomorrow. I’ll send another update tomorrow. Have a good weekend!! -Levi

Saturday, May 12

Good afternoon, At around 11pm Pacific time last night, Sandra was sprung from the ICU (see picture). She was pretty excited to be leaving but sad too since she would no longer be under the care of some amazing nurses. They really did a good job taking care of her. Last night was a little rough as Sandra was having a lot of pain. They finally were able to get her pain meds dialed in and she was able to get a few hours of sleep. Today, the doctors removed another chest tube (only 2 left now), removed one of the IV lines from her right arm, and removed the bandage from her chest where they cut her open. The incisions are healing nicely. I’ll see if I can get a picture of it later. She’s still retaining a lot of liquids so they put her back on Lasix to get that off. The rest of the day has just been resting as the pain meds she’s on tend to make her sleepy. Overall she’s doing really well. Everyone have a great day!! -Levi

Bonus update. Sandra took another walk today. Here’s the video. The stylish mask is something she will be wearing for the next 3 months anytime she isn’t in her hospital room or our apartment. -Levi

Sunday, May 13

Good afternoon, Not much to report today. Sandra is getting stronger every day. They have her up and walking around the unit 3 times a day. She’s fascinated with her feet and legs being all puffy (see picture). The Prednazone steroids she’s on cause that. Hope everyone has a Happy Mother’s Day!! Will send another update tomorrow afternoon. -Levi

Sunday, May 13

UPDATE: CT scan showed no sign on stroke. They believe it was a seizure and will put her on some anti seizure meds. She's back in her room now and conscious and talking. I think things are going to be ok. -Levi

Good morning, Last night, Sandra had what they believe was a seizure. While having dinner with her I noticed she was staring off to her right. When I asked her if anything was wrong she started talking giberish. I immediately called for the nurses. As they came into the room she started shaking and foaming at the mouth. A bunch of doctors and nurses converged on her room and the event subsided a few minutes later. They quickly rushed her down to CT for a scan. The scan confirmed it wasn’t a stroke and most likely a seizure. After administering Kepra (anti-seizure meds) last night they transferred her to the ICU for closer monitoring. They don't know what caused the seizure yet. It may possibly be a reaction to one of the anti rejection meds (performa I think) that she went on yesterday. They have discontinued that for now. She didn't get much sleep as they needed to wake her up every hour for cognitive tests. This morning I visited with her before shift change and talked with her for a bit. She knew who I was and where she was that being said she still seemed confused and loopy. That could be a combination of the pain meds, seizure meds, and lack of sleep (that's the hope). After shift change neurology came in and did a preliminary assessment. They will be back a little later with the ICU primary doc and the transplant team to do a more thorough assessment and discuss next steps. They may want her to get an MRI which would involve removing some temporary pacing wires that she still has from the transplant. They haven't really had to use those for a while but have them there in case there is a problem. Will send out another update later today. -Levi

Monday, May 14

Good morning, After administering Kepra (anti-seizure meds) last night they transferred her to the ICU for closer monitoring. They don't know what caused the seizure yet. It may possibly be a reaction to one of the anti rejection meds (performa I think) that she went on yesterday. They have discontinued that for now. She didn't get much sleep as they needed to wake her up every hour for cognitive tests. This morning I visited with her before shift change and talked with her for a bit. She knew who I was and where she was that being said she still seemed confused and loopy. That could be a combination of the pain meds, seizure meds, and lack of sleep (that's the hope). After shift change neurology came in and did a preliminary assessment. They will be back a little later with the ICU primary doc and the transplant team to do a more thorough assessment and discuss next steps. They may want her to get an MRI which would involve removing some temporary pacing wires that she still has from the transplant. They haven't really had to use those for a while but have them there in case there is a problem. Will send out another update later today. -Levi

Monday, May 14

Afternoon, Things have taken a turn for the worse. All day long Sandra has become more and more confused. She also has been having trouble speaking coherently as well as a loss of strength in her right arm and leg. The neurologists ordered another CT scan with contrast to see if anything showed up. The scan revealed that since the CT scan last night, she has developed a brain bleed. They are closely monitoring her and are getting her an MRI to determine the extent of the damage. Right now they don't know much other than there is a bleed and it appears to be small. The location of the brain that it's in explains her speech, confusion, and loss of strength on the right side. Right now they have her on Adivan and Kepra to prevent seizures. Will let you know when I know more. -Levi

Just got another update. She was very agitated and unable to stay still which was impacting her O2 stats and would make it hard to do an MRI. As a result, hey have put the breathing tube back in and are sedating her for the time being. Will update you again after the MRI later this afternoon. -Levi

Monday, May 14

Here what the docs said after the MRI. They confirmed it was a hemorrhagic stroke (bleeding vessel, NOT a clot). Cause is still unknown. The bleed is significant although not significant enough to warrant surgery yet. It was in the left side of the brain which is why right side motor functions are impacted. Plan is to continue to do scans on regular intervals to see if it continues to bleed and get bigger (next scan will be at 10pm Pacific Time). If bleed does get worse, they may have to drill into her skull or remove part of the scull to relieve the pressure. We won’t know if there is any brain damage for a few days. Right now they have her sedated, on a vent, and pushing sodium via IV to shrink the brain and reduce swelling. That’s what I know for now. Will keep you posted. -Levi

Tuesday, May 15

Good morning, Subsequent scans during the night have revealed that the bleeding appears to have stopped. They believe what may have caused the bleeding is a cerebral aneurysm (weakening of artery walls in brain that balloons the blood vessel). See link below for details on cerebral aneurysms. http://www.strokeassociation.org/STROKEORG/AboutStroke/TypesofStroke/HemorrhagicBleeds/What-You-Should-Know-About-Cerebral-Aneurysms_UCM_310103_Article.jsp#mainContent The next step is to perform a cerebral angiogram. This will involve sticking a catheter up thru a blood vessel in her groin up to her neck. Contrast is the injected and pictures of all the blood vessels in the brain are taken. This will determine how many aneurysms there may be and determine if the aneurysms need to be sealed either via surgery or by a using a catheter to go in thru the blood vessels and place a micro coil in the vessel to seal it. Should know more about when the angiogram will happen in the next few hours. Will keep you posted. -Levi

Tuesday, May 15

Good morning, Sandra just got back from the angiogram. It’s a good news bad news kind of thing. Good news is there are no signs on any aneurysms so that’s good. Bad news is they still don’t know what caused the hemmorage. Neuro will be meeting with me soon to discuss next steps. For now Sandra is still sedated and on a vent. They do plan to lighten the sedation at regular intervals during the day to test cognitive and right side motor function. Many of you have asked how I’m doing and if there is anyone here to support me. I’m hanging in there and obviously keeping in contact with all of you via text and social media. The nurses and social worker have also been checking up on me. My sister Terrie will be flying in tonight to keep me company and help support me. Thank you all for you love, support, best wishes, and prayers. I appreciate it. Will send out another update after I talk to neuro -Levi

Tuesday, May 15

Just finished up chatting with the neurologist. They are now fairly confident that she has something called PRES Syndrome which is caused by some immunosupresents (which she is on because of the transplant) and a higher blood pressure in the brain than the patient is used to (her blood pressure is\was normal for a normal person but high compared to what it was pre-transplant). Assuming nothing else happens and the bleed doesn’t start up again, they believe she will be able to partially recover. She will most likely have some deficits in her right field of vision, language deficit, and some loss of motor control of the right arm. Thru therapy she can regain some of the right arm motor control and overcome the language deficit. She will most likely not get a full field of vision back from that right eye. The right leg which isn’t responding well right now will most likely fully recover. Short term they continue to strictly manage her blood pressure thru medication, give her sodium to keep brain swelling down so that the brain can heal, and monitor to her to ensure the bleeding doesn’t start back up. They have reduced the sedation meds so she is more alert than she was. They say she can expect to be in the ICU and on the vent for at least a week if not longer. After that it will be all about therapy. She’s going to be in the hospital a while. I did ask the doctor if he’s ever seen anyone fully recover from this to which he said NO. He said they can usually get a lot of it back but will most likely deal with some kind of deficit the rest of her life. So lucky her huh, she traded a bum heart and lung for a whole new kind of problem she gets to manage. I don’t expect much to change in the next day so I won’t send another update until tomorrow afternoon unless something significantly changes. -Levi

Wednesday, May 16

Good afternoon, Today’s CT scan shows that the bleed continues to be stable. Neurology comes in at regular intervals to do cognitive tests. They lighten up the sedation for that and then afterwards turn it back on. This is to keep her calm and in conjunction with meds, keep her blood pressure down. She is more responsive today when they do the tests and even moves that right arm and leg and opens her eyes. Plan for the day will be to continue to monitor and keep blood pressure down. I’ll send another update tomorrow unless something changes in which case I will send sooner. -Levi

Friday, May 17

Good morning, Since yesterday’s update there have been a few developments all so far for the good. 1. 1 more chest tube was removed. That leaves just one more left to go. 2. Brain bleed continues to be stable. 3. Heart & Lung transplant continues to be stable with no issues. Additional Immunosuppressants will need to be restarted soon, but there are others they can do in place of the one they believe contributed to the brain bleed. 4. Shane Eliason, a member from our ward (church) back in SLC was in the area on business and came by for a visit. He also helped me give her a blessing last night. 5. This morning when I arrived at the hospital I was pleasantly surprised to see Sandra awake and off sedation. She can’t talk because of the breathing tube but she is much more aware of what’s going on and recognized my sister Terri and I. She seems a lot calmer today off sedation so if that keeps up, the being off sedation can continue. It’s also possible if this continues the breathing tube can come out soon especially since the machine is doing very little of the work (her lungs are strong). 6. I was able to get a good nights sleep 8 hours. Been a few weeks since that happened. 7. Zoe (who is back in SLC with my sister in law), is starting to struggle a bit. She misses her mom and is worried. This morning she woke up with a back ache and has hasn’t gone potty in a few day. We are concerned she might have a urinary tract infection (UTI). Cindy took her to the doctor this morning and a close friend (Allie) is watching Zoe today as we have her another day off school. The doctor did see a bit of an elevated white blood count and is running some additional tests but suspects that it’s more than likely just a result of stress and anxiety. Zoe tends to bottle up her emotion. I love Zoe so much and can’t wait till I see her again. I FaceTime with her everyday which helps but it’s not the same. I’m so thankful for everyone that is helping out with Zoe. Well, that’s it for today’s update. I am meeting with all of Sandra’s doctors today at 4pm to discuss what’s next. I’ll send another update out tomorrow unless something significant happens in which case I will send sooner. Have a great day!! -Levi

Saturday, May 19

Good morning, Not much to report today. Brain bleed remains stable and Sandra is doing well being off the breathing tube. She did have problems sleeping last night so the doctors may try some meds to help her sleep tonight. When I came in this morning she seemed more confused then she was yesterday and her speech was a little more slurred. Neuro thinks that’s probably has to do with meds and sleep (ICU Narcosis) than anything else. Her NPI tests are all good. When they did the cognitive tests this morning she seemed to do better at following directions which is good. She had trouble calling out what year it is and trouble answering who was President of US. At first she said Obama and the Bush. Finally she answered that it was Bump (not a typo) we all got a good chuckle out of that one. She would really like water to drink but unfortunately speech needs to do a more detailed test than a swallow test before they will clear her for liquids. They have orders in for that but not sure when it will happen. Hoping today but with it being a weekend I kinda have my doubts. For now the best I can do is wet her lips with a swab and water. Physical therapy will be coming by this afternoon to work with her. I’m doing well. I’ve been able to get out of the hospital most nights around 7 and get some dinner and a good nights sleep. My sister Terri has been here keeping me company and will be going home tomorrow. My brother Jason is flying in today and will be keeping me company for a few days. Zoe is also doing ok. She’s struggling a bit not having any contact with Sandra right now but is working thru it the best she can. Sandra’s mom and sisters are thinking about coming down Memorial Day weekend for a visit and bringing Zoe. Would be great to see Zoe and spend a few days with her. I really miss her. Well that’s it for today. Will send out another update tomorrow. Thanks again for all the prayers, love, and support. It’s very much appreciated!! -Levi

Sunday, May 20

Good afternoon, It was kind of a rough night for Sandra. She didn’t sleep very well and is suffering from ICU narcosis (confusion, restlessness, & seeing things) most probably a result of the meds, lack of sleep, and noises\lights in ICU. She will be able to go back to the regular patient unit as soon as they can get her weined off a blood pressure med called Clevidipine, most likely sometime later this week. In the meantime we are just waiting for a swallow test (hopefully today) so she can drink and eat soft food again. Her nurse today is awesome and is also going to get her out of bed into the chair for a while. The nurse we had during the day the past few days wasn’t very good (nurse ratchet is what I called her in my head). Glad she has someone different today that seems to be much more caring. Her nurse is also going to help Sandra wash her hair and brush it for her. Overall Sandra’s medical condition remains stable. Blood bleed stable, O2, and blood pressures all where we want them, and she appears to be doing good on the new immunosuppressants they are giving her. Transplant remains stable with no signs of rejection and the last chest may come out today or tomorrow. It’s right on the border line of output so my guess is probably not till tomorrow. Yesterday they moved her to a different room in the ICU that has a window so that’s nice. Helps her delineate between night and day. Myself, I’m hanging in there. My brother Jason came into town yesterday and is keeping me company till a Tuesday. This morning we dropped my sister Terri off at the airport so she could get back home to her husband and kids. I’m thankful she was able to come down and keep me company fir a few days. Well, that’s about it fir now. Will send another update tomorrow afternoon. -Levi

They got Sandra out of bed this afternoon into a chair for an hour. She was pretty happy about it.

Monday, May 21

Good afternoon, Sandra is making progress. She still has a long way to go but the doctors are very happy with her progress. Yesterday speech cleared her to have ice chips and today we’re hoping she gets cleared for thin liquids and soft mechanical foods. She was able to get a full nights sleep last night so that’s good. Occupational therapy has had her sitting up on the side of her bed and working with her on balance. Today they just finished weining her off the Clevedipine IV blood pressure meds and just giving her blood pressure meds thru the feeding tube. They will monitor her the rest of day and most likely transfer her to a regular patient room tonight or tomorrow. They also have her weined down to 2 liters of oxygen and will work on getting her too just room air this afternoon. She’s still very week on the right side of her body but is getting stronger a little at a time. Cognitive wise she still struggles to answer questions like what year is it and who the President is. Hoping that will get better as time goes on. I myself am doing ok. Lots of ups and downs. I’m encouraged by her progress but sad sometimes too knowing where she was last Sunday before the stroke and how much work she will have to do to recover. Zoe is doing well and looking forward to coming down for a visit this coming weekend. Looking forward to spending some time with her and bringing her to visit Sandra. Will send another update tomorrow, have a great day!! -Levi

Tuesday, May 22

Good afternoon, We've had some progress today. Sandra had the formal swallow study and was cleared for regular food and nectar thick liquids. She can also have a few sips of water every few hours. They won't let her have unrestricted thin liquids yet for a few more days. Still though, I'm taking it as a win. This morning she spent a few hours in the chair and physical therapy is going on right now. She has been cleared to move to a regular patient room however, we have to wait for one to open up (hopefully sometime later today). My brother Jason is flying home this afternoon after keeping me company for a few days. Was nice to have him here to keep me company and to run a few errands. Sandra's mother & sister are coming this weekend to visit and are bringing Zoe up for a visit and a friend of mine from work is in town this weekend so we're going to meet up for lunch or dinner. Will send out another update tomorrow, have a great day!! -Levi

First time eating real food in a few weeks.

Wednesday, May 23

Good afternoon, Lots of activity today. 1. When I got here this morning, Sandra was probably the most alert I’ve seen her since the day she had the seizure. Eyes wide open, talkative, and very chatty. 2. Sandra got her last chest tube out today. This should make it even easier to breathe and had it not been for the seizure and stroke she had 1.5 weeks ago, she would have been able to leave the hospital soon. 3. Occupational Therapy worked with her this morning on cognitive exercises. Sandra gets confused really easy which makes her anxious. She has a hard time staying focused as well and her short term memory isn’t the greatest. Right now I would describe her personality as child like. That will get better over time but it’s hard seeing her like that. 4. Physical therapy came by this afternoon worked with her on balance and moving her right arm and legs. She did really good with that. When they tried to get her on her feet though, she said it hurt and begged to be put back into bed. They had the same issue yesterday. It’s weird cause 2 days ago they had her stood up and she was ok with it. They have her some Tylenol and right away she calmed down. We’re thinking the pain is more anxiety and fear based than actual physical pain. They will try something different tomorrow. Sandra is looking very forward to seeing Zoe on Friday and we’ve decided tonight to let her FaceTime with Zoe. That should be good for both of them. That’s it for today. Will send another update tomorrow. -Levi

Forgot to mention that we're still in the ICU waiting for a bed to become available in the patient unit. Hospital is really full so hoping today but may not be till tomorrow.

Thursday, May 24

Good afternoon, Well, we’re still in the ICU waiting for a bed in the regular patient unit. Hoping it happens today, but who knows. In the meantime, Sandra is progressing a little each day. She’s eating a little bit more (everything is delicious for a few minutes and then she changes her mind) each meal. Therapy is getting harder for her and she struggles to stay awake and not get anxious. Anxiety has been bad for her the last two days. They give her some medication for it but then that makes her tired. Rehab stopped by yesterday to talk to me and they want to send her to a rehab center soon for 3-4 weeks of intensive physical, occupation, and speech\neuro therapy. The downside is that there is only one place in the area that will accept a transplant patient so early in the transplant recovery process and it’s up in San Francisco (1.5-2hrs) from our apartment. I wasn’t prepared for that. Her primary transplant team doctor (Dr. Dhillon) is open to her going back to Utah for rehab (normally they would want her near Stanford for 3-4 months after transplant) as long as there is a good facility that will take her and is willing to coordinate her care with Stanford. I was on the web and it looks like both the UofU and IHC both have good facilities. I’d love to be able to take her back to Utah to recover fir so many reason but suspect it will rely on who can give her the best care, is par with our insurance, and who is willing to coordinate with Stanford. Hope to know more on that front soon. Sandra’s sister (Cindy) and her mom will be headed this way with Zoe after school today. That should put them here late tomorrow afternoon. Will send another update tomorrow. -Levi

Friday, May 25

Good afternoon, Were still hanging out in the ICU waiting for a bed in the regular patient unit. Hospital is full up. That being said, we have had some wins since yesterday. 1. Sandra got a decent nights sleep last night although she did wake up once with a really severe bout of confusion. It’s better this morning and her team of doctors is looking at making some changes in her meds and frequency of vital checks to help. 2. This morning Sandra had another formal swallow study done and got cleared for thin liquids. Yay!! No more thickened water, juice, and milk. Being on normal liquids really made her day. 3. Zoe gets here this afternoon and although Sandra is still in the ICU, they are going to arrange for Sandra to goto an area (atrium, cafeteria, waiting room, etc..) so that Zoe can see her. They are also going to try to get special dispensation for Zoe to come into the ICU if for some reason she can’t get out of the ICU. I think Sandra & Zoe getting to spend some time together will be good for both of them. That’s the good news for the day. Now for the not so great news. 1. The larger medical team doesn’t feel comfortable with her going back to Utah for the inpatient acute stroke rehab. AHHHHHHHHHH, CRAP!! So it’s now looking like St Francis (if they accept her) in San Fransisco is where we will be headed when it’s time fir Acute rehab. I did find out though that I can stay there with her in her room so that helps with the commute part otherwise, I would be looking at a 1.5-2 hour commute each way from our apartment in Sunnyvale. 2. Once we do get to a regular patient room here at Stanford it will probably be another week before she is even cleared to goto Acute Rehab in San Fran. 3. She continues to get confused and has bouts of anxiety. 4. Even after Acute Inpatient Rehab (which will last 2-3 weeks) she will most likely have to continue some type of outpatient therapy (physical and neuro) here at Stanford. That’s on top of the therapy and appointments she already would have had that are transplant related. Well, that’s it for today. Will send another update tomorrow. -Levi

Sandra standing (with some help).

Saturday, May 25

Good afternoon, Yesterday, Sandra finally got out of the ICU around 4:30pm and into a regular patient room. The timing was perfect as her mom, sister, and Zoe had just gotten here. Once she got moved over we had a nice little visit after which Zoe and I headed back to the apartment for the night. Last night, Sandra had a pretty rough night. She was really anxious and had trouble sleeping. Doctors are continuing to work on tweaking her meds to address her anxiety and help her sleep better. Today, Sandra’s mom, sister Cindy, Zoe, and I got to take Sandra outside for a bit today. It was her first time outside in 3 weeks. She really enjoyed it despite its short duration and the mask she has to wear. Sandra’s mom and sister are staying with Sandra this weekend while Zoe and I spend time together. I’m thankful to get a bit of a rest from the hospital and fir getting to spend time with Zoe. This afternoon, Zoe and I had lunch with a friend of mine from work (Chris Henggeler) who came down for a visit. Was nice to see him and catch up. Well, that’s it for today’s update. I probably won’t send another update until Monday unless there is a significant change. Everyone have a safe and Happy Memorial Day!! -Levi

Sunday, May 27

Monday, May 28

Good afternoon, This morning Sandra’s mom, sister, and Zoe headed back to Utah. It was hard saying goodbye to Zoe knowing I probably wouldn’t see her in person again till July. It was great getting to spend a few days with her hanging out. I’m so proud of how she is handling this even though I know she misses us. She has one more week of school and then she will be going to stay with my sister Terri in Blackfoot for the month of June. Sandra is doing a little better each day although she still struggles with anxiety. That will probably be her biggest obstacle to overcome in the coming weeks as she continues to work in recovering from the stroke. Transplant wise everything is still great with no issues to report. Well that’s it for today. Will send out another update in a few days. Thanks again to Joan (Sandra’s mom) and Cindy (Sandra’s sister) for bringing Zoe out to visit and fir staying with Sandra this weekend. -Levi

Tuesday, May 29

Physical therapy with Kaitlyn

Wednesday, May 30

Good evening, Well, lots of things have happened over the last few days. 1. Sandra had her feeding tube removed on Tuesday. She is now getting all her nutrition via food and drink and meds via mouth or IV. 2. We just about have Acute Rehab locked in. It’s looking like she will transfer to the Acute Rehab Unit @ St. Francis Hospital in San Francisco on Monday. It’s an intense inpatient Acute rehab facility with a program that specializes in stroke recovery therapies (speech, physical, and occupational). I am planning to stay with her there in the room and work from there during the day. I expect we will be there 2-3 weeks with the goal of getting her to a place that she could walk with a walker, groom herself, and be able to use a real toilet. Would also hope she would be able to sharpen up her memory and cognitive skills. After that, the plan would be to return to our apartment in Sunnyvale and continue outpatient neuro rehab @ Stanford as well as continue her outpatient transplant recovery with a bigger goal of returning to Utah end of August\early September. 3. Sandra is still struggling with sleeping and having really bad bouts of confusion and delirium @ night. Still working on tweaking meds to help with that. It’s hard to see her go thru this as there isn’t much I can do to help her other than hold her hand and try to talk her thru it. 4. Sandra has been able to get outside for sun and fresh air an hour or more each day. She really enjoys that time of day. Myself, I’ve been hanging in there. I started working again a few hours a day from the hospital. I’ve got a nice little cubbie in Sandra’s room with a cot and a little desk area to sleep and work in. Well, that’s about it. Will send out another one sometime this weekend. -Levi

Thursday, May 31

Sandra took her first walk post stroke today. Here’s the video.

Saturday, June 2

Good afternoon, Thought I would shoot out a quick update. 1. One of the many things they worry about after stroke is if the digestive system is working like it should. Wednesday, Sandra had a test done where they fed her some eggs that had radioactive dye in them. They then took pictures with a special scanner right after she ate and then at 1 hour intervals for the next 4 hours. We got the results of that test on Thursday which indicated that the valve/nerve in her stomach that attaches to her intestines wasn’t working as good as it could and therefore food wasn’t passing from her stomach into the intestines as quickly as they would like. They proposed 2 options fir resolving that. Option 1 involves adjusting diet and reducing the intake of foods that are fatty and\or high fiber. That plus time can sometimes resolve the issue. The second option is a procedure where they inject Botox into that valve\nerve. Since she wasn’t having trouble eating and keeping food down they and she opted to try the diet and time option. That being said, Friday morning and afternoon she couldn’t keep food down and puked not long after breakfast and lunch. Doctors decided to put her NPO (no fluids or food) for remainder of the day to give her stomach time to resettle. This morning they reintroduced clear fluids and hope to work other foods in later today or tomorrow. Should that not resolve the issue they would then opt for the Botox option on Monday. 2. If we can get the digestive issue nailed down, Sandra will transfer to Stroke inpatient Acute Rehab at St. Francis in San Francisco Monday afternoon. She’s pretty excited about that especially since doctors here are now telling her they see no reason she couldn’t walk after going to therapy. She’s getting stronger every day and doing more and more with that right side. 3. Zoe graduated from 2nd grade on Tuesday and now is in Blackfoot Idaho this month staying with my sister Terri and her family. We’re grateful for everyone that has been able to help take care of and do things for Zoe so far. Zoe wouldn’t be doing as well as she is if it weren’t for all of you, please know that we appreciate it. 🙂 4. I’m hanging in there. This week actually went pretty well given that I’m living and working from a hospital room. I managed to work a bit this week and save some of my PTO for later on down the road. The nurses, doctors, social workers, and other staff here are incredible and are doing a great job of taking care of us. Stanford is an incredible hospital and I would highly recommend them to anyone. This week I received some training on the drugs Sandra will be taking when she finally goes home (there are a TON of them each with their own quirks and side affects to be aware of). I also received post transplant care and maintenance training for when she goes home (things to avoid, be aware of, do, etc..) 5. My brother Cooper graduates from high school today and while we can’t be there to see it, were very happy and proud of him. Congrats Cooper!!! Well that’s it fir now. I’m including a picture of Sandra sitting outside today at the fountain at Stanford. It’s a 90 degree day so you know she loved being outside. Everyone have a good weekend and I’ll send another update out sometime mid week. -Levi

Monday, June 4

Good morning, Wanted to shoot out a quick update. Diet and time did not resolve the digestive issues so Sandra is having a procedure today at 1pm PAC where they will stick a camera down her throat into her intestines and shoot some Botox into the nerve. The hope is that it will relax the nerve and allow for better digestion. Since she is having the procedure, they are delaying her move to Acute rehab in San Fran at least a day. Will send out update after the procedure. In the meantime, I’m including a picture of Sandra this morning. She looks pretty good considering she didn’t sleep well again last night and is hungry and thirsty. She’s a trooper. 🙂 -Levi

Monday, June 4

Greetings, Procedure is finished. It went well. Now we see if it helps her eating and nausea. Will send another update in a few days. -Levi

Wednesday, June 6

Good afternoon, Been a hard few days here in CA. Today, Sandra was supposed to transfer to inpatient acute rehab @St. Francis in San Francisco unfortunately, she woke up with an irregular heart rhythm that they were unable to correct with the normal medication (Amniodrine). They now want her to see a cardiologist specialist here at Stanford before she goes to rehab. This may delay her going to rehab for a few days. The delay was pretty hard to hear for Sandra as she was really looking forward to leaving the hospital and getting going full force with rehab. The last few days have been particularly hard for her morale wise due to a continued lack of sleep caused by hospital fatigue (lights, sounds, sleep meds that haven’t worked, and a constant barrage of people coming into the room at all times of the day). The last few days it’s caused her to pass on therapy or shorten what she is doing. She’s also made comments that she wants to die (the shrinks and I both think that’s just frustration over lack of sleep and will get better once we get the sleep resolved) that being said, we are keeping an eye on her. She says she is just frustrated and tired but we’re being safe just in case. Here’s the plan for the next few days. 1. See the specialist about the heart rhythm and get resolved. 2. Tonight, they are going to dope her up on the one drug that has helped with sleep (Haldol IV form, pill form doesn’t work) they have been trying different things the last 4 days to get her off Haldol cause she can’t goto rehab with an IV. Hope is that + turning off some of the monitors and putting pillow cases over the other monitors and putting a sign on door to check with Sandra’s nurse before entering will do the trick and get her a night of sleep. 3. Psych will continue to see her here in the hospital. 4. Dietician working on her eating. The Botox procedure the other day appears to be helping some but still too soon to tell if it’s fixed the problem entirely. May need follow up injections down the road. Well, that’s about it. Will continue to keep you all posted. Will send another update in a few days. -Levi

Friday, June 8

Good morning, Well, after many delays and a lot of drama we finally made it to inpatient rehab @St. Francis Hospital Acute Rehab last night. Today, Sandra is meeting with her Occupational, Physical, and Speech therapists to do assessments, set goals, and put together a plan for moving forward. She’s excited, anxious, and scared all at the same time. That being said, I think she is holding up pretty well. As for her current heath status, here is where we are at. 1. Sleep wise Sandra has done better the last few nights. Wednesday nights experiment with meds, putting pillow cases over the monitors, putting her on 2 liters of O2 to keep the oxygen alert from going off, and putting a sign on her door to check with her nurse before entering we’re all successful. Sandra slept for 4 hours, woke up for a few hours, and then slept for 4 more. Best nights sleep she has probably had in a year. Yay!!! Last night wasn’t as good but I attribute that to being in a new place. She still managed to get 4-5 hours intermittently throughout the night. Still good compared to what she was getting. 2. Yesterday it was looking like we weren’t going to be able to leave Stanford as the afternoon chest X-ray showed a large mass of fluid pooling outside the lungs. It needed to be drained and Stanford didn’t think they could make that happen before 2:30pm (time we were supposed to transfer). Sandra was pretty upset and started crying when they said it might not be till Monday since the doctor @St. Francis who admits patients was leaving for day at 5pm and she wouldn’t there on Friday either. Our case manager @Stanford along with the doctors and nurses sprang into action and got the procedure to remove the fluid (1200 Cc’s\3-4lbs) done and got the doctor at St Francis to stay till 7pm so they could admit her. We left Stanford at 4:30, enjoyed rush hour traffic to San Francisco, and arrived at rehab around 7. 3. Eating wise Sandra is improving. She still vomits occasionally when taking meds but we’ve had some success having her take Zofram (antinasaue) meds before meals and pills. Seems to help. 4. Vision wise she still has issues with right side field of vision and blurriness which sometimes makes it hard for her to read, watch tv, and do other things. Eye drops help and her vision is generally better in afternoons than mornings or evenings. Some of that is drugs she is taking some of it could be stroke related. Time will tell. 5. Transplant wise all is still well. Heart and lungs are performing well (especially with that fluid off the lungs) and neither are showing any signs of rejection. 6. Sandra is retaining fluids still so she’s on lasiks which makes her have to pee all the time. She loves that. 7. Heat wise Sandra struggles again and being in chilly San Fran (60 degrees for high in June, what’s up with that?) doesn’t help. We are managing thru it with sweatshirts, warm blankets, and heat packs. Heat regulation is a common problem with stroke patients + Sandra had always had trouble staying warm. Hopefully that will get a little better over time and as she acclimates. Zoe continues to stay with my sister and her family in Blackfoot Idaho. This past weekend they all went to the Bear Lake area to visit and play. They went to the beech and Minetonka cave. We truly appreciate everything folks have done to help Zoe thru this. She’s lucky to have all of you in her life. I’m doing ok as well. I’m staying with Sandra here in her room at rehab although, I will be gong back to Sunnyvale for 1 night either Saturday or Sunday to do laundry and take care of some things. Hopefully Sandra will do ok without me for a night. Sandra’s sister Cindy is coming to stay with her the following 2 weekends so that I can take a few days break each week. I’m hoping after that, Sandra will be done with inpatient portion of rehab and will be able to goto our apartment and continue her therapy outpatient until we go back to Utah tentatively scheduled for end of August. I wanted to let all of you know that when Sandra can, she tries to read the texts, Facebook posts, emails, and other social media posts you’ve sent her. Because of her vision, attention deficit, and the large number of posts, texts, emails, it’s really hard for her to read them all or even respond. That being said she has read some and continues to read more when she can. She wants me to let you all know that she appreciates them and that she loves you all. Tears come to her eyes when she reads them. She can’t believe how lucky she is to have so many people pulling for her. Some of you have asked if you can send things to her. Below is our Sunnyvale address. My ask though is that you don’t send anything large that we would have to transport back to Utah when it’s time. We’ve already got a lot of stuff here and would prefer not to have to deal with getting even more stuff back to Utah when it’s time. 1267 Lakeside Drive Apartment #1069 Sunnyvale CA 94085 Well that’s it for today. Will send another update out early next week. Have a good weekend!! -Levi

Saturday, June 9

What a difference a shower can make. #1stShowerInAMonth

Workout time. #1stTimeOnExcerciseBike

#ClimbingStairsLikeAPro

Wednesday, June 13

Good morning, Wanted to give a quick update on Sandra. Things are going good at rehab. She did struggle a bit on Sunday and Monday with anxiety but is doing better now after having some meds adjusted and talking thru it. Sandra is also getting stronger every day. Her anxiety and vision are starting to get better and she continues to sleep good at night. She’s walking more and more and works hard everyday in therapy. She still uses a walker but at times has walked without it. Her balance is good although she tends to rely on her left side still. Doctors are estimating she will be discharged around the 26th of June to goto our apartment in Sunnyvale assuming her progress continues at the pace it’s at. She would then do home therapy for a few weeks until outpatient at Stanford kicks in mid July. This weekend Sandra’s sister Cindy is going to stay with her while I go back home to Utah for the weekend to visit Zoe and take care of some things at our house. Looking forward to seeing Zoe and being back at home even if it’s only for a few days. Thanks everyone for your continued support. Will send out another update next Tuesday or Wednesday. Have a great week, Levi

Tuesday, June 19

Good afternoon, I spent the past weekend in Utah with Zoe. It was good to spend some time with her and get some things done at the house. While I was away, Sandra continued to make progress. She's getting stronger every day. She walks more and more and even cracks jokes. She seems more like the Sandra we know and love more everyday. She has been battling bouts of nausea in the mornings and late afternoons the last few days. The doctors are going to try moving some of her meds around to different times to see if that helps. She got some good news today in that she no longer needs to have the twice daily Heperin shots. She's pretty happy about that. She still has some leakage coming from the groin where they put in a mainline for the transplant. They may have to drain that at some point as it seems to be getting bigger. For now it isn't infected so that's good. She continues to sleep well at night and when she isn't nauseous eats pretty good. Today, we practiced doing car transfers as she has an appointment back at Stanford on Thursday. Now that I'm trained to transfer her I can drive her there instead of doing medical transport. Well that's it for today. Will send another update this weekend. Have a great day!! -Levi

Wednesday, June 20

Good evening, We had a bit of a surprise development today with regards to the area in the groin that has been leaking. As you may recall, one of the main lines for the transplant surgery went in thru the right groin. A few days after arriving at rehab it started leaking. Over the past week the leaking has continued and a few times even gushed. They are now thinking she may have a pseudo aneurism. This afternoon, the Stanford transplant team asked us to leave rehab and come back to get it checked out. We are now in the ER at Stanford getting checked out. They are going to have a vascular surgeon take a look. She may need surgery. Not sure how long we will be here or if we will even go back to rehab (we were due to be discharged next Tuesday). Will keep you posted. -Levi

Wednesday, June 20

Good evening, Doesn't sound like there is anything they are going to do tonight other than admit her. The ultrasound didn't show any huge issue (infection, ruptured artery, etc..) that being said, some type of procedure may need to be done at some point to stop the draining and seal it up, Will send out another update tomorrow when I know more. -Levi

Thursday, June 21

Good morning, The doctors came by this morning and told us they are planning to do a minor surgery on Friday to reconstruct the artery in that area and also reconstruct a muscle to fold over and protect it better. As surgeries go, it’s pretty low risk and they don’t expect any complications. On the nausea front, they have ordered an abdomen scan. They suspect she is either backed up with poop or the Botox treatment she had done 3 weeks ago on the nerve in her stomach\intestine has worn off and may need to be done again. They are also working on getting her on the physical therapy schedule here today at Stanford so she can continue progressing on that front. They also see no need for us to go back to San Fran once she is done here so when we discharge from here (presumably sometime next week), we will go back to our apartment in Sunnyvale. Yay!!! Well that’s it for today. Will send another update tomorrow after the surgery. -Levi

Friday, June 22

Good afternoon all, Sandra just went back for surgery. The vascular team will remove the bad graft on the groin in the artery, put on a new graft, and then reposition the artery to a better position. The plastic surgery team will then fold over the muscle to provide protection to the artery and then do a skin graft over the area. Total surgery time is expected to take 3-4 hours + recovery time from the anesthesia in the PACU which varies by patient (typically 1-2 hours). After that, she will go back to her room and will spend 3-4 days recovering from the surgery. Will send another update out when surgery is done and she is out of the PACU and back in her room or if something goes wrong. -Levi

Friday, June 22

Good evening, The surgeons just updated us. Surgery went well with no complications. She will be in the PACU for an 1-2 hours coming off anesthesia and then will go back to her room. Her sister Cindy is here this weekend and will be staying with her. Once Sandra is settled in her room, I will go back to the apartment in Sunnyvale for the weekend. Still have some things to do and get to prepare for Sandra coming to the apartment next week. Will send another update out on Monday unless there are complications in which case I will update sooner. Have a good weekend!! -Levi

Saturday, June 23

Sandra walking this morning. #Winning

Monday, June 25

Greetings all, The last few days have had some ups and downs. As you know on Friday, Sandra had surgery on the right groin. It was successful and she was able to return to her room that night. Over the weekend Sandra’s sister Cindy stayed with her so I could have the weekend off to relax and get some things for the apartment ready for when she gets out of the hospital. I even managed to catch Avengers Infinity War (holy crap, what a movie). While Friday went well for Sandra, Saturday and Sunday were a mixed bag. Friday night and Saturday morning they had trouble getting her pain meds dialed in. Saturday night she had trouble sleeping (people in and out of room at night, leaving door open, lights on, etc..) which impacted her mood and anxiety levels. Then on Sunday, they tried to put in a feeding tube thru the nose which they couldn’t get positioned correctly. They never did get it in the right spot and then on Monday morning it fell out. Because they were waiting for it to fall into place they wouldn’t let her walk so no real exercise on Sunday. Doctors on Sunday starting feeding her info about feeding tubes thru the stomach and talk of lengthened hospital stays that got her all upset and regressed emotionally to where she was weeks ago. I’m thankful Cindy was here to help support Sandra. This morning I had a chat with her doctors and we talked about a few things which included the following. 1. No more talking to Sandra about hypotheticals, procedures, and extended hospital stays. They talk to me first. No need to get her upset and anxious about nothing. 2. Get to the root of the nasaua problem. Somethings not right and that’s why she keeps puking which impacts her appetite. Let’s get to the root of the problem rather than just do a feeding tube. Feeding tube may still be in her future but I got them to agree to hold off for now while they do another feeding study. Its scheduled for tomorrow morning and will involve her eating some radioactive toast and eggs and then tracking it thru her digestive system to see where the problem is. I believe that nerve\valve in stomach\intestine still isn’t working right and that plus some constipation has been the source of the eating and nasaue problem. Another round of Botox may be needed. 3. I asked them for a plan that allows her to leave the hospital and go back to our apartment in Sunnyvale by end of day Friday. They agree her leaving is a good thing and if we can figure out the digestive issues see no need to keep her past end of week. 4. I asked them to minimize blood draws. One day she had blood drawn 8 times. They can and should coordinate that better. They agreed and said they should be able to get that down to 1-2 draws a day. They may even add a pick line so they can just get it from there. Sandra gets really anxious when they bring out the needles. She’s been poked so much. 5. Sleep wise, I asked them to minimize vital checks at night, keep the room dark, and not schedule 4am blood draws or x-rays. After having a good night sleep she is already so much better today. I continue to work with our case manager to get a walker ordered, get home therapy arranged, and get prescriptions figured out so that when they discharge her from hospital she can go back to the apartment. Looking forward to that day as is she. I’ve also been talking to our case manager about some possible stem cell therapies that Stanford has been doing for stroke patients. https://www.youtube.com/watch?v=TxFuiwSO9A8&feature=share As some of you know, my dad had a stroke about 8 months ago and still doesn’t have the use of his left arm and shoulder. It’s possible these therapies could help him get some of that motor control back. I got the contact info and gave it to Marnie. Not sure if he will be a candidate but I’m hopeful. It’s possible these therapies could benefit Sandra down the road as well however at this time she would need to exhaust traditional therapies first. Zoe is still in Idaho with my sister and doing well. She is going to South Dakota with them later this week on vacation. She’s going to go see Mt. Rushmore. I told her I’m jealous as I’ve always wanted to see that. We miss her a ton and I know she misses us still, I’m glad she’s got people taking care of her that love her. Well, that’s it for today. Will send another update out later this week. Thanks again for all your support. -Levi

Tuesday, June 26

Wednesday, June 27

Friday, June 29

Good afternoon, Well, we’re still at Stanford. My goal of leaving to go back to the apartment today was pretty much shot in the butt on Wednesday. When last I updated you she was having issues with nausea, appetite, and nutrition. The doctors wanted to see her at 114lbs (weight she was before she got the transplant) and today she is 104lbs. After a botched attempt at putting in a feeding tube thru the nose last weekend, the doctors agreed to a new approach when I met with them on Monday. On Tuesday, they had her do a gastrointestinal eating study. That evening we found out the results of that study which indicated her stomach was only emptying at about 20% efficiency at 4 hours. Better than the 8% she was 3 weeks prior but no where near normal (90+%). This explained why she couldn’t keep food or meds down. The doctors indicated there were 3 options. Option 1: Do another injection of Botox in the Piloris valve in the stomach. Option 2: Give the Piloris more time to recover from the transplant surgery on its own. In some patients it can take months after a big surgery for it to return to normal operation. In the meantime they would insert a JG feeding tube thru the stomach so that she could get nutrition and meds via a port in her stomach. Option 3: Do options 1 & 2. We ended up going with option 3 which would result in a couple of procedures. The plan was to have the Botox done on Thursday and have the G tube inserted at the same time. Then on Friday, the G tube would be converted to a JG tube. (G part of tube goes into stomach to deliver meds and J tube into the small intestine to bypass the stomach for feeding). Wednesday morning they put her NPO (No food or water) to prepare her for the procedure on Thursday afternoon. Late Thursday afternoon she went in for the Botox and G tube procedure. The Botox part went nicely however, there was still too much food in her stomach (even after not eating for 1.5 days) to do the G tube. She was pretty upset when she found out the G tube couldn’t be done since it meant that she would not be going home on Friday and probably not Monday or Tuesday either (I’m learning you don’t get much done in a hospital on weekends unless it’s an emergency). They returned her to a regular diet and said they would consult with the larger team and get back to us on Friday morning. She ate pretty good Thursday night and kept her meds down. On Friday morning she was up 2 more pounds from previous day (102 to 104). When the doctors came in Sandra asked if she could have another chance at eating? She’s hoping that the Botox helped. Doctors agreed to let her try eating over the weekend but if she didn’t make up ground, then they would need to put her on a clear liquid diet on Sunday and Monday so she could have the JG tube procedure on Tuesday. They would then need to monitor for a few days to make sure everything was ok before they would let her leave the hospital for our apartment. Long story short we’re probably stuck here another week. Transplant wise everything is good. She continues to get stronger and gain endurance. The surgery on the groin is recovering nicely and aside from needing IV antibiotics fir a week or two and having a drain tube in still, she barely feels it. Well, that’s it for today. Will send out another update next Tuesday or Wednesday. Included in this post are a couple of pictures. One is of Sandra standing in the gastrointestinal scanner and the other is her with her new walker. She calls them her rad new wheels. 🙂. -Levi

Monday, July 2

Greetings, Well it’s been another few days of ups and downs. Eating did not go well for Sandra on Friday or Saturday. Nassau and vomiting continued, as a result, the doctors moved her to a clear liquid diet for the remainder of the weekend so that they could place the G tube on Monday. You don’t get many calories from a clear liquid diet so Sandra’s energy levels over the weekend we’re pretty low. That being said, she still managed to get in her exercise and walking. Sandra also dealt with migraine headaches on Friday. They finally got that under control on Saturday. Late Saturday afternoon she got a really bad bloody nose which continued off and on into the late night. Finally around 1am Sunday morning they got it packed so that the bleeding stopped. <=That whole thing was a cluster. I continue to be reminded that you don’t get crap on weekends done very quickly in a hospital. I was at the apartment doing laundry when that happened. I ended up not being able to sleep that night so went to the hospital around midnight. Finally, on Sunday morning we saw an ENT doctor who was able to remove the packing and do a procedure to get it too stop for good. I asked the docs if the headaches and nose bleeds were at all related to the stroke she had back in May. They said no based on the CT scan. This afternoon Sandra had the G tube placed in her stomach (procedure went well with no issue) and hopefully on Tuesday, they will be able to convert it to a GJ tube. Once that’s done, they monitor for a few days to make sure it’s working good for liquid meds and feedings. Assuming all is well, we get to go back to the apartment at end of week. I’m not holding my breath though. 🙂. She will have nightly tube feedings while at the apartment until the Piloris valve in the stomach returns to normal operation. She will be able to eat regularly during the day without any pressure and then make up calories at night from tube feeds. Well, thats what I know. Will send out another update this weekend. -Levi

Tuesday, July 3

Well, I’m not going to lie, it’s been a CRAPTASTIC day!! After being NPO (no food or liquids) all day, the GI resident came in around 3pm too tell us that Sandra’s G tube to GJ tube conversion procedure had been bumped from the schedule due to more emergent cases. Even worse was that since tomorrow is the 4th of July (nothing gets done in hospitals on weekends, holidays, and nights unless it’s an emergency), she would not be able to get the procedure until Thursday. This means we now won’t get to leave the hospital until some time early next week at the soonest although I’m not holding my breathe and am convinced we’re never getting out. Even worse is that over the last 3 days she lost 6 more pounds (she came into the hospital for the transplant at 114 pounds and today is 94 pounds). She will have to remain on a liquid diet until she has the procedure on Thursday so guessing she will lose a few more pounds. I’m concerned that by the time they get the feeding tube working, they won’t let her go home because she will be so malnourished. ITS VERY FRUSTRATING!! It’s taken all my will power to keep my cool and not start throwing things and yelling. As you can imagine Sandra is pretty discouraged as well that being said, she’s trying to drink as much liquid as she can that has protein (Ensure Shakes) even though the nasaue flares up and she usually ends up puking some up. She’s a trooper that’s for sure and doesn’t deserve what’s happening to her. Well that’s how things stand. Will send another update out this weekend. Have a safe and Happy 4th!! P.S. The healthcare system in this country is broke. Sure we do miraculous things like heart and double lung transplants but the simplest things like coordinating patient care our system just plain sucks at. Next time someone tells me that healthcare in Canada or Europe sucks because it takes so long to see a doctor or get a procedure done I’m going to tell them this story. We’re nuts if we think our system is any better. -Levi

Friday, July 6

Saturday, July 7

Greetings, Well it’s Saturday and thru some change of luck, Sandra finally got to leave the hospital today (early evening) for our apartment in Sunnyvale (see included picture). Other than being worn out from navigating the healthcare system the last few days, we’re feeling decent. Below is a recap of what took place the last few days. On Thursday we were scheduled to get the G to GJ tube conversion procedure done. We were originally schedule to have that done at noon but as our crappy luck continued, we got bumped to later in the day as they had a more emergent case come in so once again she starved for a day and a half. They finally came and got her for the procedure at 5pm in the afternoon on Thursday. The procedure was to only last about an hour but once again as our crappy luck continued, there were complications and the procedure ended up taking 2 hours. Luckily the tube finally went in and they were able to finish up however since it was so late in the day and there were complications, they didn’t want any feeding formula ran thru it until the next day to give the tube and body time to test. By this time, it was 7pm and I knew the kitchen would be closing at 9 and I also knew it would take them 30-45 minutes to get orderlys arranged to transport her back to the room and then another hour for the nurses to get the doctors to cut new orders so she can eat, and another 45 minutes for the food to arrive. To try and cut some of that time down I asked them to put in orders right away so that we didn’t have to wait till we got back to the room. Of course the response I got was the typical American healthcare system run around, “ um, we can’t actually put in orders, that has to come from your primary team.” so I then asked if they would contact her nurse back on the patient unit now and ask them to contact her primary docs to get the ball rolling. They said they would. About 30 minutes later Sandra was transported back to her room in the patient unit. Upon arriving I asked her nurse if new orders got cut so she could eat. Of course the answer was the docs had been paged and had not responded. Now I work in the IT field and when I’m on-call I have to respond within 15 minutes. It had been 30-45 minutes since her docs had been paged and no response. Interesting as a society how we value getting a server back up more so than getting food to a malnourished transplant patient but I digress 🙂. We finally did got orders cut and an order in just before the kitchen closed at 9. Food arrived at 9:45 and she was finally able to eat. On Friday morning when the docs came in I already knew what they were going to say. Because they couldn’t test the tube feeding Thursday night she would not be able to leave for the apartment Friday. The doctors said let’s shoot for Saturday. They then put in orders to start putting formula thru the feeding tube slowly and then ramp it up in the late afternoon and again in the evening. She seemed to do ok most of the day with it but had some issues around 3am Saturday morning so they turned it off for a while. In the meantime on Friday we got several deliveries at the hospital including all her meds (see included picture, one of those bags is all meds and the other is a scale, blood pressure cuff, thermometer, etc..) and the feeding tube pump, pole, and supplies in anticipation for going home on Saturday. Sandra spent the remainder of the day Friday sleeping, exercising, walking, and doing some limited eating via mouth (watermelon which she said was refreshing). Late Friday afternoon I got a call from Sandra’s transplant coordinator. She informed me that if Sandra left on Saturday that we would need to come to clinic on Monday morning at 7am. I asked her if we could do clinic on Thursday instead since Sandra already had outpatient neuro occupational therapy schedule for Monday afternoon and I didn’t want to tire her out with a clinic appointment in the morning. The response I got was again the standard American healthcare system run around of “um, our rule is that whenever we discharge a transplant patient from the hospital we always want to see them at the very next clinic”. I responded by saying that Sandra isn’t a fresh transplant patient and that she already left the hospital once for 3 weeks for rehab. I then asked if given that, could they move her to Thursday. She responded by saying that I would need to talk to the doctor about that. In my head I was thinking WTH, you’re the transplant coordinator can’t you do that? Instead I politely thanked her for her help and said I would talk to the doctors. On Saturday morning I asked the doctor if we could move it to Thursday. He said that would be fine. I don’t know how someone who is the hospital without someone coordinating things does it. I feel like that’s a major gap in our healthcare system. If I or someone else hadn’t been with Sandra thru all this, what would happen? I feel bad for some of the patients in some of these rooms who don’t have someone with them 24x7. I feel fortunate that I can work remotely and that my company has given me the flexibility during this time to help care for Sandra. As far as Sandra’s overall condition, she is doing fairly well. She does battle constipation and dry heaving sometimes so we have to keep on top of that with medication. She also still tires easily and I have to push her to get up and move more. Transplant wise everything is good. No issues with the new heart and lungs. She does still have a drain tube in from when she had groin surgery a few weeks ago. Apparently the GI docs can’t be bothered with removing it today so now we have to have a separate outpatient appointment at some point to remove that. The American healthcare system at work again. 🙂. I’m a little jaded and salty about our healthcare system in case you didn’t notice. 🙂 For the rest of the week Sandra has the following going on. Monday - Neuro outpatient Occupational Therapy in the afternoon followed by a blood draw. Wednesday -Neuro outpatient Physical Therapy in the afternoon. Thursday -Transplant clinic in the morning which includes blood draw, X-ray, and PFT test. Friday -Neuro outpatient Speech Therapy in the afternoon. Saturday -Grocery Shopping. Sometime this week - See the plastics & GI team to get drain removed. April Sorenson is also flying in Saturday night (14th) to take care of Sandra the week of the 15th while I go back to Utah to take care of some things and pick-up Zoe who will be coming back with me to Sunnyvale on the 20th to stay with us till school starts in late August. We can’t wait to have her with us again, we miss her so much! Zoe had a great time on vacation in South Dakota with my sister Terri and her family over the 4th but is starting to really miss us. I’m thankful that Terri and her family as well as Cindy (Sandra’s sister) and her family have been able to help with Zoe during the last two months. I’d also like to thank everyone that has sent cards, came and visited, took care of our pets, sent care packages or gift certificates, and kept us in their thoughts and\or prayers. We really appreciate it and feel lucky to have all of you in our lives. Well, that’s it for my update. Will send another update out towards the end of next week. Have a good weekend! -Levi

Thursday, July 12

Good afternoon, We’ve been back at the apartment in Sunnyvale for 5 days now (since Saturday evening). It was a bit of a rough start as Sunday afternoon her nose started bleeding again and we couldn’t get it to stop. We ended up back in the Stanford ER that evening where they finally decided to cauterize it. Wish they had just done that two weeks ago when it first started. Oh well, since having it cauterized we haven’t had any issues with it. On Sunday, the Meibos’s visited us from Utah. They brought cards from folks in the ward (church) and visited with us for a while. It was nice to see them and get an update on what was going on back in Utah. Sandra and I appreciated all the cards and best wishes. On Monday, she had her first outpatient neuro occupational therapy appointment. It was mostly just an assessment of where she is. After the assessment they gave her some exercises and activities she can do at home. They will be seeing her once a week for the next 6 weeks to start with. On Tuesday, she had a blood draw at the hospital scheduled unfortunately, the doctors forgot to put in the orders so when we showed up at the blood clinic, we had to wait 30 minutes for them to get it straightened out. #Frustrating #NoCoordination. The results of the blood tests showed an adjustment was needed to her daily Cyclosporine dose (immunosuppressant). On Wednesday, she had her first outpatient neuro physical therapy appointment. Like her first OT appointment, it was mostly just an assessment after which they gave her some exercises and activities to do at home. They will be seeing her once a week for the next 6 weeks to start with. Today, we had our first outpatient transplant clinic appointment which includes a blood draw, chest X-ray, as well as appointments with a number of doctors. Transplant clinic went pretty good. They made some adjustments to her Cyclosporine (immunosuppressant) and blood pressure meds. Her blood pressure has been running high the past few days so hopefully that will nip it in the bud. Doctors also said we are on track with our goal of getting to go back to Utah at end of August which was good to hear. On the not so good front, the doctor indicated that one thing we may need to have done 6-7 months down the road is a surgery on her stomach to help digestion. The Botox does not appear to be helping and if the stomach nerves don’t return to normal after 6 or 7 months, a surgery may be warranted on the lower stomach involving removing some muscle to get it to relax. We don’t relish the thought of another surgery down the road. I have this bad feeling in the pit of my stomach that she will have digestion problems the rest of her life. I hope and pray that doesn’t become the case. She doesn’t need more things to worry about. At transplant clinic it was hard seeing these old guys who are only 4-6 weeks post transplant walking around, laughing, joking, and having a great time when Sandra is slow physically and mentally, can’t see very well, has a feeding tube, is nauseous most of the time, and can’t remember crap. #LifeIsn’tFair. Tomorrow, Sandra has her first outpatient neuro speech therapy appointment. Like the first OT & PT appointments, I suspect it will be mostly assessment and then a scheduling of appointments once a week for the next 6 weeks. Overall being back at the apartment is a lot more work for both of us. Sandra sleeps a lot, still has trouble keeping solid food down (feeding tube is finally delivering what she needs nutrient wise as of today. Had to ramp up the feedings slowly to get to 100ml an hour for 12 hours a day), nasaue is a constant battle even with the Zofran, and because she is slow, she often misses the vomit bag so that creates cleanup work and more laundry. Her weight as of today is 92lbs but is trending up now (she got down to 88 earlier this week). She also gets headaches frequently and has pain from the feeding tube incision. Hopefully those will get better over time. She still has the JP Drain from the groin surgery she had about 3 weeks ago. It’s still putting out a lot of fluid so not sure when that will come out. Sandra has a follow up appointment on the 17th for that. Hopefully it stops draining by then and they can remove it. One less thing to take care of. I’m keeping very busy working, taking care of Sandra, and coordinating all her doctors and appointments which in itself is a full time job some days, that being said, I’m hanging in there. Looking forward to a little downtime next week when I go back to Utah for a visit. This weekend, April Sorenson is coming down to stay with Sandra while I go back to SLC next week to take care of some things at the house and get Zoe. Zoe and I will both be coming back to Sunnyvale next Friday. Zoe will be staying with us until she goes back to school in late August. Sandra and I are both looking forward to having her with us again for a while. Well, that’s it for this week. Next update won’t be until next weekend unless something dramatically changes. Included is a picture of Sandra taking a nap today after transplant clinic. She was pretty wiped out. P.S. Sandra wanted me to tell you all that she’s been really tired and with all the activity she has going on now, she tends to spend her down time sleeping\resting which is why she hasn’t called people as much, returned texts, or interacted on social media. She loves you all and appreciates the support, prayers, cards, etc... and asks you to be patient with her. Hopefully her energy levels will go up soon and she will be able to interact with you all more directly. In the meantime, I will continue to send updates at least once a week on her progress. -Levi

Sunday, July 15

Stanford ER visit for nose bleed

Friday, July 20

Saturday, July 21

Good morning\afternoon all, Overall it’s been a good week for the Smith clan with Sandra getting stronger every day and best of all, we are all living together at the apartment in SunnyVale as of yesterday. Yay!! The week has had a few ups and downs. 1. Last Sunday, we were in the ER twice for bloody noses. The first time was from 1:30am-4am and the second time was 6:30am-5pm. They finally got it to stop the second time by putting a balloon of sorts up her nose. They left it in and told her to follow up with ENT doc in a few days. Sunday (at 1pm) was also the day I flew back to SLC for the week to take care of some things and pickup Zoe. April Sorenson (a friend of ours from SLC) stayed with Sandra for the week to take care of her and take her to her appointments. 2. On Monday, Sandra had outpatient occupational and speech therapy. Both went really good. 3. On Tuesday morning, Sandra had her appointment with the plastic surgery folks. They finally removed the drain and staples in her groin from the surgery she had about 3 weeks ago to repair the artery in the groin. Once the drain hole closes up (about a week) Sandra can start taking showers again. 4. On Tuesday afternoon, Sandra had her appointment with the Ear, Nose, and Throat doctor regarding the bloody noses. They removed the balloon and placed a mesh in the nose to try to prevent further bleeding. They also asked her to talk to transplant team about going off the aspirin for a week. Of course they wouldn’t contact the transplant docs for her even though they are all in the Stanford system. Instead, April and I got to coordinate that. After taking to the Transplant Coordinator we got the ok to go off Aspirin for a week. They didn’t want to cauterize the nose a second time for fear of putting a hole in her nose. 5. On Wednesday evening, she got another bloody nose. It was a minor one and April was able to get it to stop using pressure and Afrin. 6. On Thursday, Sandra had transplant clinic. They told her things look good and even removed one of her 8pm heart rhythm meds (she still takes the morning dose) and told her she could completely stop taking the sodium pills. Dr. Dhillon also thought we may be able to go home to Utah mid August. He tends to be a little fast and lose with dates so I’m not counting on mid August but it makes me feel more confident about end of August. 🙂. 7. On Thursday, Sandra’s sister Kim and friend Tifani from Utah arrived. They stayed up that night playing games and watching movies. 8. On Friday, Zoe and I arrived from Utah. It was nice having us all back together again and nice for Sandra and Zoe to bond again (see included photo). Friday was also the day Sandra got some pampering. Kim and Tifani cut and colored Sandra’s hair and waxed her face (The Cyclosporine makes Sandra’s facial hair grow like crazy). Thanks Kim and Tifani for coming down to visit and for giving Sandra some much needed pampering. It really lifted her spirits. 9. Saturday morning we got April off to the airport to go back to Utah. We are so thankful to her and her family for giving us April’s time to help us out. For me it was a huge weight off my shoulder knowing I could leave for a week and that Sandra would be cared for. Thanks April!!! 10. Saturday morning, Sandra also had another minor bloody nose which we were able to stop with pressure and Afrin. I think we may be heading back to the ENT again if this continues. This coming week is a busy one as well. 1. On Monday, Sandra has Physical and Speech therapy appointments. 2. On Tuesday afternoon, she has Occupational therapy. 3. On Thursday morning, Sandra has transplant clinic and in the afternoon, a Bronc scope to check out the lungs. This is an important test as if it shows good things, our ability to go back to Utah mid August increases dramatically. Keep your fingers crossed. 🙂

Well that’s about it for this week. Will send out another update next weekend unless something big happens in which case I will update sooner. Have a good weekend and thanks again to everyone for keeping us in their thoughts and prayers. Also thanks to all of you that have sent care packages, cards, gift cards, etc.. it really means a lot to us that so many people are pulling for us. 🙂 -Levi P.S. Zoe and I saw Avengers Infinity War & Antman & Wasp (thanks Michael Sorenson for letting us tag along with you) this past week. Holy Crap!! #GreatFlicks

Sunday, July 22

Exercising

Tuesday, July 24

Thursday, July 26

Transplant clinic

Saturday, July 28

Sunday, July 29

Good morning\afternoon, Lots of progress this week for Sandra 1. We finally figured out what was causing the morning dry heaving. It’s air getting trapped in her stomach when she sleeps at night. A combination of burping and venting of the G tube before morning meds appears to have resolved this. 2. Appetite continues to be good. She’s eating 2 small meals and drinking 2 Ensure 350cal shakes a day in addition to the tube feeds at night. She’s at 100 pounds as of this morning (up another 4 pounds total this week). 3. Outpatient therapy goes well. She continues to make progress on all 3 fronts (physical, occupational, and speech (cognitive)). 4. Lung transplant clinic on a Thursday confirmed the progress being made and the Broncoscopy after confirmed there are no signs of rejection or infection in the lungs. Dr. Dhillon said end of August for returning to Utah was looking good. Last week he said mid August but I suspected that probably wasn’t true when I heard it as my experience with him is he sometimes plays fast and loose with the dates. He requested we start working with University of Utah to get her Cardiologist and the UofU Lung Transplant team signed up to co-manage her care with Stanford once we return to Utah. I have already got Cardiology on board and getting UofU Transplant team onboard is in progress. On Monday, I will work with UofU outpatient rehab to get her stroke care managed by them once we return to Utah. 5. Dr. Dhillon made a few more med changes this week. Eliminated Melatonin, added Aspirin back, upped Cyclosporine meds, and added a new med Cozaar to help with blood pressure as it continues to be a problem. Yesterday, Sandra and I took Zoe to the American Girl Doll Store. It was our first real family outing since we left Utah in early May. See included pictures. It was nice to get out for something non medical even if it was to a doll store. 🙂 Well, that’s it for this week. Will send another update out next weekend. Have a great day!! -Levi, Sandra, and Zoe

Saturday, August 4

Saturday, August 5

Good afternoon, For those of you that get these updates via text message, this will be the last update I send via text unless something goes really wrong. I will continue to post updates to mine and Sandra’s Facebook pages as well as updating our church Facebook page. If you don’t follow us via one of those methods and wish to continue to get updates, please friend Sandra or I on Facebook. Sandra will also post updates on her blog as time permits at https://leviandsandra.wixsite.com/sandrasmith Sandra (see included picture) continues to improve every day. Physically she is walking more and more without the walker and for longer distances. She is also pretty good climbing stairs although those are harder for her and she always comments when she reaches the top that climbing stairs is hard. Mentally she continues to improve as well. Her short term memory is getting better and she can carry on conversations more clearly. Her speech therapist commented this past week that she is ahead of the curve in this area compared to others in her situation. Right field vision continues to be a problem and it’s not clear yet how much more that will improve. She’s hoping enough so that she can drive again someday but, time will tell. We finally figured out what was causing the dry heaving and vomiting in the morning. It’s air getting trapped in her stomach when she sleeps at night. Once we started venting the stomach each morning via the G tube and having Sandra sit up fir a while before taking meds, the problem mostly went away #Winning. Transplant wise, everything continues to be good. We did find out from the results of her blood test on Monday that she tested positive for Rhinovirus. Subsequent blood tests later in the week confirmed it as well as her Immunoglobulin being really low. This impacts her bodies ability to fight the Rhinovirus. The plan is to get Immunoglobulin infusion therapy this week to address that. Will involve going to an outpatient infusion center for 3 hours while they do an IV infusion. Sandra also has a bit of a cough as well. Not clear if this is a result of the bronchoscopy she had a few weeks ago which is normal or if it’s the Rhinovirus. We’re keeping a close eye on it as we obviously don’t want it to escalate into something bigger. Some more good news is that we haven’t had a bloody nose in over a weekend so fingers crossed we have that one taken care of. This next week Sandra has her normal physical, occupational, and speech therapy as well as transplant clinic on Thursday and a follow up appointment with the neurology folks on Tuesday for the stroke. We’re hoping for good news here. She will also have the Immunoglobulin infusion therapy as well. Pretty full week. This past week we got things lined up with the University of Utah Lung Transplant program to co-manage her care with Stanford once we return to Utah. Our first appointment at the U is on September 12th. This is one of the things the Stanford team wanted us to have in place before going back to Utah. I also got the UofU outpatient rehab program to continue her Occupational and Speech therapy when we return to Utah although, we have a limited number of visits left that insurance will cover. Depending on her progress, we may need to spend out of pocket for continued therapy or possibly see if insurance would cover it under home therapy (not likely but worth a shot). Zoe and I are doing well although we’re all ready to come home. Being cooped up in the apartment and doctors offices all day long isn’t ideal still though, it’s good to all be together. Our return to Utah is still scheduled for end of August although we continue to push the transplant team to go sooner. If we could leave on the 17th of August, we would rent a vehicle to drive home in time to get Zoe back for the start of school on the 21st. If we have to stay longer than the 17th, then Sandra’s sister will come down and get Zoe and take her back to Utah for school. We would then join Zoe a week or 2 later. In that scenario we would probably fly. We’re all hoping for the 17th as we all want to go home. DID I MENTION WE WANT TO GO HOME. 🙂 Well that’s it for this update. I’m including a picture of Sandra’s meds for 1 week. Every Saturday afternoon I load these trays. It still amazes me how many pills she takes. This doesn’t include the liquid meds, eye drops, sinus spray, and Miralax. Keeping it straight involves an app and a lot of planning especially on days where appointments conflict with medication timing. Still, it’s better than the alternative for sure. Have a good weekend!! -Levi, Sandra, and Zoe

August

Letters and notes from family, friends and ward members.

Greetings, Been another good week. Sandra had her follow-up appointment with the neurologist on Tuesday for the stroke. They indicated she was doing well and making good progress. The only down side to the appointment was that they reminded us that we need to report her stroke to the Utah DMV so they can suspend her license. They said that if she continues to make good progress she can enter some kind of stroke driver rehab program in November (6 months out from stroke) and work towards getting her license back. UofU has such a program however, we’re not sure if we will have enough rehab days left on our insurance in 2018 to cover it. We may have to wait till 2019 or look into paying out of pocket. Neurology also indicated she should stay on the Keppra (anti-seizure meds) until at least November as well. They asked us to come back and see them in November. On Thursday, Sandra had Transplant clinic and her follow up with the medical psychiatrist. At transplant clinic they made some adjustments to her meds and communicated some concerns about fluid retention. Her latest chest scan showed fluid retention in her legs and chest area. It was impacting her breathing. The concern with fluid retention is that it can sometimes be an indicator of heart rejection\failure. They didn’t believe this was the case with her but needed to rule it out. They put her on Lasiks to get the fluid off, scheduled an Echo for Friday, and a breathing test for this Monday. They also scheduled another bronchoscopy for this Tuesday but indicated they would cancel it if the fluid came off with the Lasiks, the Echo was good, and her breathing test on Monday showed improvement. So far, the Lasiks appears to be working and the Echo was good as well. They also made another adjustment to her Cyclosporine meds (immunosuppressant) and added a new med to the mix for cholesterol now that she is eating more. They also told us she needs to look into cardiac and pulmonary rehab for when she returns to Utah as well as get a Esophogial Monimotiry & PH scan. We also saw the nutritionist\dietician who was also very pleased with Sandra’s progress. Her weight is up to 108lbs and she looks a lot healthier. They adjusted her nightly feeds to half of what they were since she is consistently eating 1500 calories a day on her own. Once she gets to 115lbs, she can stop the feedings at night and if she maintains for a month after that with no issues, we can then pursue getting the tube removed. After transplant clinic Sandra saw the medical psychiatrist who was also very pleased with the progress. The psychiatrist indicated she would like to see Sandra every 3 months. We will schedule them at the same time we are at Stanford for transplant clinic follow ups so we don’t have to make extra trips. Sandra also had her Occupational, Speech, and physical therapy appointments this week. She continues to make progress on all fronts. Well, that’s about it for this week. Will post another update in a week. Have a good weekend!! -Levi, Sandra, and Zoe

Good morning all, Earlier this week we got the all clear from the transplant team to go home. We spent the rest of the week finishing up a few remaining appointments. On Friday we swapped out our rental car for a larger SUV, packed it up, and headed for Utah. The plan was to drive to Lovelock Nevada Friday night, stay the night, and then finish the trip on Saturday. As we got closer to Lovelock, Sandra and I looked at each other and we both said let’s just go home. We stopped off in Elko for dinner and proceeded home. We got in around 11pm mountain time. I can’t tell you how happy we were to pull into our driveway knowing that our long term stay in California was over. While we will have to go back for visits on a regular basis (a few days a month for a while) we can once again call Utah our home base. We’re back and we’re loving every minute of it!! On Saturday we spent the day unpacking (we brought back a lot of crap), returning the rental car, and getting settled in. This coming week we plan to take Zoe school shopping, take her to back to school night on Tuesday, and take her to her 1st day of 3rd grade on Wednesday. We also need to get cardiac\pulmonary therapy, physical\occupational\speech therapy, and a Esophogial monimotiry & PH scan scheduled with the UofU. We also need to get travel scheduled for our for our first visit back to Stanford around mid September. Sandra is excited to see folks and visit with everyone. For those interested in coming to visit Sandra, please follow these guidelines. 1. If your sick or been around people who are sick, we would prefer you wait to visit. Sandra’s immune system is suppressed to prevent rejection so we have to minimize her exposure to things that will get her sick. 2. Flowers aren’t a good idea right now as her lungs are still healing and the pollen in a contained space isn’t good for her. 3. Before coming over, check with Sandra to see if she is available. She will still have a lot of dr. appointments and has therapy that she has to do at home every day on a regular basis. We want to once again thank everyone for all the love, support, and prayers. I don’t know how we would have done this without everyone. We are truly blessed. -Levi, Sandra, and Zoe