Sunday, November 27, 2016
Day +40 (again)
Today is Day +40 post Rowan's second transplant. His ANC (absolute neutrophil count) is still over 2000. It has been 2000-3000 since he engrafted this time (on Day +20). This is great news! His first transplant failed and the ANC dropped to 0 (on Day +37), so we have been holding our breathe for quite some time now. How his graft is doing, is actually the least of our current worries though.
So, I have a few specific prayer requests ...
1. Please pray for Rowan's kidneys. They are not well at all. He has now been on 24 hour CRRT daily dialysis for 6 straight weeks. The only chance he has of getting out of ICU is for him to be able to switch to 4 hour a day HD dialysis. He is, unfortunately, no where near doing so.
2. Please pray for his blood pressure. His continued hypotension is one of the main reasons he is having difficulty having fluid pulled in a shorter amount of time on the dialysis circuit. He has been on and off pressors (norepinephrine drip) many times in the past few weeks. We need his blood pressure to rise, stabilize and maintain...without iv pressors.
3. Please pray for his tummy. He has gut GVHD in his colon, as well as some very distinct pin point pain in his stomach. His gtube feeds had to be stopped again after just 2 days.
4. Please pray for the fungal infection in his lungs. Fungal infections are very difficult to eradicate and can take weeks to months of treatment. The drug he is on to treat it adversely affects your kidneys, so the sooner we get off of it, the better.
5. Please pray for the blood clot in his femoral artery. They have chosen not to treat the clot right now, because of how complicated his health is. They will monitor it periodically via ultrasound, and also watch for changes to his leg, lungs and heart.
6. Please pray for Rowan's physical rehabilitation and strength. His body has atrophied, losing any muscle tone he ever had. He is also experiencing a lot of swelling/edema, making it hurt to move at all. Some days his neck looks like an infant trying to hold its head up for the first time. And he cries if we make him sit upright or move his limbs. Everything hurts him right now.
7. Please pray for his emotional state. Steroids can wreak havoc on a child's emotions (and they are), but when you add to that the fact that he is on his second back to back transplant, has been hospitalized for over 18 weeks, and 6 of those straight have been spent in the ICU, you can imagine the toll it is taking on not just his body, but his brain. The tears flow freely and frequently. The frustration and anxiety is real. He is afraid to sleep at night, and says he feels trapped. It is truly heartbreaking! He doesn't want to be like this, and he cannot control it very well himself because of the medications he needs.
8. Please pray for me. It is extremely trying and tiring. I am doing the best I can, but would appreciate a boost of energy and strength from above.
There are still good things happening, don't get me wrong. We have not lost our faith or our fight. We simply would appreciate some extra prayers right now. I hope the specific requests above help you direct your thoughts and prayers.
Thank you all for your continued prayers and support.
Can't wait until we have another miracle to report...
And we will!