Day 112 - Wanting to Vent
Ayelet moved down to 22 from level 25 on the oscillator breathing machine and the team here is going try to move to the regular ventilator later today.
If you recall we tried this transition last week and it didnt go so well, sooo we are keeping our expectations low, but the only thing we can do with Ayelet’s lungs and her respiratory challenges is to test them - and see if they are strong enough to move to the standard vent. Only thing off is she had a mysterious fever late last night which we are unsure what the cause is of it.
Since I’ve been getting alot of emails/notes “I just heard/read about your daughter” being sick here is a quick recap: Please start this with a TV voice:
Previously… on Eye on Ayelet…..
- June 2010 - at 6 months old and 12lbs, Ayelet stops growing, eating, and has major diarrhea. GI’s galore, a-gazllion doctors visits. No one can figure it out, many blow us off with ‘its a food allergy’.
- Nov 2010 - Diagnosed with Colitis (Dr. Spivak), and her immune system is found to be partially missing.(Dr. Denson). Treatments begin for both. Few ever heard of a 6mth yr old kid with colitis. Something is missing….
- Feb 2011 - Finally, Dr Eliane Zackai refers us to CHOP and Ayelet is diagnosed with a rare disease called: Dyskaratosis Congenita by Dr. Kate Sullivan (200 kids in the US have this - extremely rare) a horrible disease that effects stomach, growth, hair/skin/nails and most crucial: bone marrow failure happens in 90% of these kids. Recommend a bone marrow transplant while she is young/sorta healthy
- March/April/May 2011 - Starts becoming sorta less healthy. In and out of the NY hospitals (sinai, sloan) with mysterious fevers, stomach issues. Many bone marrow drives, PR pushes, to help find a perfect match for her.
-June 2011 - After almost 2 months at SloanKettering (Dr Boulad) she is transported from Sloan Kettering To Cincinnati Children’s Hospital with major stomach/colitis related issues. Cincy has the best GI team in the country - so with her stomach in flux, we decide to do transplant there(hindys mom/sister live there so helpful). Sloan agrees. If we want to do transplant, now is the time.
Dr. Stella Davies, head of transplant at Cincy, takes the case….
(this is when blog begins. You need to be in the transplant city for a minimum of 100 days post transplant - hence the day count on the blog)
-July 2011 - Cincy quickly gets her stomach under control, and preps for transplant by getting her stomach out of the way with an ileostomy(Dr. Levitt), but she battled pancreatitis
-Aug 2011 - Start prep/Chemo
-Aug 30 2011 - Transplant done at Cincinnati Children’s Hospital with an unrelated anonymous imperfect match (Dr. Davies)
-Sept 2011 - Word that the engraftment is 100%! It worked new cells are growing
-Oct/Nov 2011 - Discharged a few times, brought back a few times with fevers/pancreatitis again and stomach issues.
-Dec 2011 - In pain, they scope to confirm mild GVHD (graft vs host disease) occurring in her gut, started treatment for it (Dr. Denson)
- Dec 2011 - Slowly has trouble breathing (not related to GVHD) - has respiratory failure, pnuemonia like symptons, she is sedated and be put on oscillator to help her breathe moved to the PICU.
And now the Galena original series…..Eye on Ayelet…on to the next episode