Day + 65

Here we are…at day 65 post transplant.  Still struggling to get the he…. out of the hospital.  Remember how naive we were, thinking oh yes, we will be home in 30 days.  That is the perfect world.  We are not there.  It must be on a planet in another solar system.  If I sound frustrated, I am.  And if I feel this way, try to imagine how Seth is feeling.  It amazes me, that inspite of all the setbacks, there are still things that still make him smile; a funny story, a good movie, and so it goes.

We did have Thanksgiving dinner together.  Homemade turkey and stuffing and cranberry sauce.  It was a time to realize how much we do have to be grateful for.

From a medical standpoint, they are still trying to get Seth off more of the IV medications.  This is very tricky and challenging for all. They tried one of the medications that he must take, but his system was not ready for the oral form, so back on the IV he went.  Even some of the medications that he has been on for a long time, sometimes become problematic and they need to be changed as his body does not do well with them any more.  The GVHD becomes active as soon as there is a change that the body does not accept so it is a very slow process to make this transition.

Seth asks that you continue to share your comments on the blog.  While he does not always have the energy to write, he does love to read what you say.  It is a wonderful way for him to keep connected with all.  Needless to say, it means so much to me as well.

Mom

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Day + 58

This has been quite a week It started off with some of Seth’s numbers going totally out of control and gave us quite a scare, requiring some tests to find out what was going on.   The good news is that these things have seemed to have been resolved and Seth is back on track. The stubborn bacterial infection is finally gone! I have a feeling that he will soon be on the blog again. As an indication of progress, Seth has been working with PT.  It is very slow but steady.  He is off IV food and has been doing a credible job of eating.  It seems that they have improved the food service so that it now rates as edible.   As I watch Seth, I realize how much energy is expended on just the very things we take for granted.  I am encouraged by his determination and look forward to his continued progress.

Seth and I look forward to your comments.  They are such an important part of the healing process.

With love and thanks for all your continued support.

Mom

Twins :)

Heart
Ultrasound of my heart from yesterday.

Day 50

As I’ve been learning through most of this illness, whatever complication can be simply described is usually not quite as simple as it would seem. Same thing for side-effects. Come to think of it, describing these outcomes in only the most simplest of ways is common-place and probably easiest to do because the manifestations of variations on what can happen are probably so numerous – they’re certainly unpredictable – that to get specific about anyone one thing before transplant could take an entire day’s lecture in and of itself, unlike the kindly 4 hour lecture we got before this whole process started.

Good morning! I finally decided to write something for the blog.

It has been an incredibly hectic time. But I am astounded that I now have someone else’s immune system in me. Of course my own immune system and nouveau-immune systems are not loving each other and I have had complications – nothing life-threatening, but serious. This is called Graft vs Host Disease and actually it’s not a bad thing to happen as it helps to establish my new immune system and help the body adjust. I’ve been fortunate that I haven’t had the most serious of complications, but complications just the same that have made the past several weeks somewhat unpleasant.

Not important to get into the details here, but in general, my GVHD has complicated my diet, my skin, body strength and I’ve had some fevers and bacterial growth. All of which are being handled and with the exception of bacterial issue, the issues are clearing up nicely (if slowly).

Mom has been doing a stellar job keeping up the blog and with calls and such. She went back to NYC to take care of things for a day or two and I think promptly collapsed and napped for most of the day — a well deserved respite. And although I know it’s taxing on her, I have to ask that we still go through her for a lot of communication – I’m simply not strong enough to email everyone or to talk on the phone just yet.

Many thanks to everyone especially for the comments – I read them regularly and just love them so please keep them up!

Strength and love to everyone,

Seth

Day + 48

Seth has asked me to give an update. This past week was one with lots of steps forward and back and forward and back and finally forward. This has been so trying and difficult for us. It was almost as if each day had another surprise. He developed an infection in his blood but that seems to be under control of an antibiotic. The swelling in his arm is slowly going down. His numbers are doing OK and his doctors are beginning to lower the doses of some of the medications and take him off IV food. The goal is go get him off all IV. This needs to happen so that he can go home. Tonight was his last IV food. This is “good” but now he has to deal with the hospital dietary shortcomings. He has been trying real food for the past few days and today they increased his variety of choices. He has been down this road before but his body was not ready for real food. Now it seems that he is able to tolerate it much better. His diet is still quite restricted and he often talks about the things he would like as soon as he gets the OK. This list gets longer each day. Finding out that he can order off the limited menu helps somewhat. He has been out of bed and PT has helped a great deal to get him moving. He is still very tired and weak but that will improve. His mind set is in positive gear. While he is not yet up to blogging himself, he does read the blog and loves hearing from all of you and so do I.

Love and thanks for all your support.

Mom

Day + 42

Just to let you know that Seth made it out of bed, did a walk down the hall and back.  It was a huge effort but he did it.  He is now on the BRAT diet. (no nasty comments, please)  This is Bananas, Rice, Applesauce, Toast.  If his body continues to respond positively, he will progress to the next level.  I don’t know exactly how the hospital defines the next diet.

The  clot is still being watched as it has caused his arm to swell up but as of right now, the doctors are not planning to do anything more.

He keeps asking the doctors when he can get out of the hospital.  They have explained that he needs to get off all IV meds, be able to eat enough to sustain himself and be mobile enough to have a sense of independence.  This is a huge goal but attainable and Seth is working hard at it.  There are times he feels so weary but he is determined to get home just as soon as possible.

Please continue your wonderful support.  It helps so much to have you with us.

Mom