Day 70-77: T 70-77

Today makes a week with Eric back at home! It's been a busy week, but it's been good to have him home with me.  Nothing makes me happier than to have him next to me again.  I'm a lucky girl.

Eric was discharged on Thursday, April 3rd.  It came as a HUGE surprise to all of us.  We thought he was at least a week out of going home.  We captured the departure on video, check it out here:

https://vimeo.com/91654273

The day you leave the hospital is always an overwhelming one for everyone involved, but especially the patient.  We got Eric home and got him a good nap right when we got home.  

Home has been healing for Eric.  He's slept better than he has for a while.  Uninterrupted naps are a regular occurrence everyday.

Even though Eric was discharged from the hospital, it doesn't mean that he gets to stay away for long.  We had to go in Friday and Saturday to check his platelet levels and make sure they were staying high enough (above 50). Good news is that they were! Since both days Eric's platelets were falling slowly we didn't have to go in on Sunday (Yeah!).  Monday was our first visit with the doctors since we left the hospital.  Eric's counts were still falling slowly (and his lungs were sounding good!) so he didn't have to come back into the clinic for labs until Thursday.

Eric is healing well at home.  He's looking better and stronger everyday. It's not without it's challenges, but so much better than being in the hospital.  Thank you to all your support and love.  We continue to feel it and appreciate all that each one of you do for us!

Jamie

Day 69: T+69

We can and are going home tomorrow! This was the BIGGEST surprise EVER!! I had made a friendly bet with everyone when they thought Eric would be coming home. We had to had a second go around, because we thought there was no way he was coming home this week. But, after the nurse went to rounds (where the doctors, nurse, pharmacist, and everyone else involved in Eric's care meet together to talk about what's going on and what to do) she came back and told us we were being discharged tomorrow! I wish I had that moment filmed on video. We were SoOo amazed!! Granted Eric has to come back every single day to the clinic to make sure his labs are good- especially his platelets- but he gets all the comforts of home back. Better yet is I get my husband back!! Woohoo! I've never been so excited in my entire life. 

I asked Eric how excited he was on a scale of 1-10 (of most exciting things to ever in your life- well besides anything to do with me-proposing, getting married, you know...) and he said 7. My answer was an 8 or 9. I'm just so excited that he will be able to relax and heal better at home. Even with coming to the clinic everyday, it'll still be better. Uninterrupted nights. Uninterrupted naps. Not having to answer the same 10 questions over and over again. It's going to be great.

Our goal is to have at least 3 days at home this time instead of a day and a half. Pray that we can have a good amount of time at home. Eric really deserves it. Funny thing is that one of his doctors the other day asked how Eric was doing. Eric answered his usual 'doing ok' with his tired and exhausted voice. This doctor said to keep up the good work and that he was impressed with how Eric was doing and how he has handled all this. I commented an agreement to what he said. Then he said 'I would've died, no really I don't think I could make it.'

It was a nice moment for me. When a doctor is understanding it makes all the difference. How nice to have doctors who care. 

Eric also had his first session of physical therapy. The doctors were worried he was losing his upper body strength. He got some good ideas of simple things to help strengthen his muscles. 

Here's to busting out of this place tomorrow!!  

And extra good news is that Eric got his peripheral IV line out! Yahoo!! 

Day 68: T+68

Our conference with the Dr. Petersen was just what we needed. I feel so much better now knowing what we are doing, where we are headed and what Dr. Petersen thinks of Eric's progress. 

Dr. Petersen said he's happy with where Eric is how he's progressing. That he's done better than any of us could've thought. He told us he's very optimistic about Eric continuing this trend forward as we continue through this first year. 

He gave us the chimerism for Eric:

The chimerism is how much is Eric's bone marrow and how much is the donors (Jordan's). It was first tested on day 28 after transplant and it was 49% it was again tested on day 56 after transplant and he was 81% of donor cells and 20% his old cells. 

This is all so exciting!! So exciting and yet scary too. Keep praying that Eric's body may accept the new cells, that they may heal his lungs and gut and Eric can be free of GVHD. Both of those organs were affected by his common variable immune deficiency (CVID). 

I am so grateful for modern medicine and all the good it can do. I'm hopeful that this long and difficult journey for Eric will be worth it and be something positive. I am prepared for the time it will take to get him to where we hope to be. I hope and pray that I can be the supporter he needs. It's so, so, SoOo hard to watch someone you love go through something so hard (especially when I've been in a similar place myself). I remember feeling frustrated that I couldn't find the words to explain to anyone how I felt. And even if I could, there was nothing they could do to change any of it. We really have to learn to rely on Heavenly Father. As we have prayed together, I feel that peace and comfort I always long for. I know that our Heavenly Father understands. That's what makes the atonement so beautiful. Through the atonement we know that we are understood and can be comforted through sincere prayers. 

From here the GI doctor is the one heading up the show. Eric's on two 24 hour drips: a protonic drip (controls his stomach acid which helps his biopsy sites continue to heal and not bleed) and octreotide (helps with bleeding and diarrhea). Today the GI doctor said we have to get Eric at a stable place with his platelets so he doesn't need daily infusions. So in coming days we are looking for platelets to stay above 50 on their own. We also have to discuss where to go with the drips as well as Eric's eating.

We are closer than ever to the H word, HOME!!

Jamie

Day 67: T+67

Monday came with some changes. Eric's platelet parameter was lowered from 75 to 50 as well as moving the platlet and Hermatocrit checks to every 12 hours instead of every 8. All this could be done because Eric has not had any more bleeding, and the traces of blood in his stool are less and less. Eric still has extra fluid on him, so they are continuing with the dieretics to help. 

Eric's lungs are holding up well and improving from the pneumonia that was found recently. 

It continues to get harder and harder to stay in the hospital. It's hard for his caretakers but especially for Eric. The interruptions makes it impossible to have any decent rest. Eric's feeling more tired and exhausted than ever. Please pray that he can have the strength,  emotionally and physically, to make it through this challenging time. 

We don't have any concrete answers on what we are looking for to know Eric's ready to go home. We have scheduled a conference tomorrow with one of the program director doctors to get answers and directions. Until tomorrow I know this has and is happening:

Jamie

Day 66: T+66

Another weekend day. Another day where not much happens to move forward. The surgeon did recommend to the BMT doctors to start Eric on a medication called octreotide. It is supposed to help with the last bit of bleeding as well as his diarrhea. It was decided to start him on the octreotide. In the first couple hours I could see a big difference because Eric didn't have any diarrhea. Yahoo! 

Other than that, Eric felt exhausted so he:

 

And I:

While the rain turned to snow! What a crazy weather day. 

Jamie 

Day 65: T+65

Moving rooms is fun to do, fun to do, fun to do!

We got offered the best room back (the one we had when we got discharged the first time), so we took it! Eric's first words when we walked into our new (old) room were "wow, this is really big!" And that's the truth. Our old room was so small and cramped that it makes this room feel like a mansion. The bathroom alone is at leat twice as big. We are sure lucky to get this room back.

We also upgraded Eric's bed. His hips had started to hurt him (only took 65 days...I would've had problems after one night). Kim and Vicki came to the rescue and brought up a memory foam pad and Eric's in sleeping heaven now! Thanks Kim and Vicki!

Other than that it was a normal uneventful weekend day. Nothing changes on the weekend (well unless something was to happen with Eric). Eric did get a two hour nap, which is rare. 

Keep hanging in there Eric. I feel the end of this hospital stay is around the river bend!

Jamie

Day 64: T+64

Eric's billirubin has gone down. Yesterday it was 3.6 and today it's 2.5. We hope the trend continues that direction and that we can put off surgery to take out his gallbladder. 

Another day and another chest X-ray.  Another day of answering the same questions to every doctor who comes in. Eric is toughing out the hardest part of the hospital: the repetitiveness of the whole experience! 

Hang in there, boy! You are doing so well. You will get over these obnoxious hurdles and into the next phase of recovery. I love you!!

Eric enjoying the gourmet delights of jello while catching some basketball. 

Jamie