Day 210 of Transplant.
Day 30 of the current Hospital Admission
Day 2 back in the PICU
Andrew was placed back into the PICU yesterday afternoon. His oxygen levels continued on a slow decline throughout the day without any signs of improving. His chest X-ray showed a worsening from the early morning X-ray. The Bone Marrow Unit is actually not apart of Blair Batson Children’s Hospital (a story for another day) and it roughly a 1/4 a mile walk from the PICU (pediatric intensive care unit) which takes an easy 8 minutes to walk when pushing equipment. So, it was a pretty easy call to be proactive and get him back to where he could receive the extra attention. All signs at this stage point to this being an issue of fluid overload and his inability to get rid off it quick enough. His blood counts dropped some more over night so today he has been receiving blood and blood platelets. He looks good and feels not so bad. He has been extremely scared throughout the process. The long trip through hospital hallways and elevators were pretty traumatic. However, for almost 24 hours he has had visits from nurses, doctors, and medical teams who had served him for all those days he was on the ventilator. He had no idea that that he was loved so much in the PICU like he has been on 3C and the Marrow Unit. He was never truly awake before. He is feeling well enough now to trash talk a doctor who was eating a Girl Scout cookie. Andrew hasn’t been able to eat since yesterday so he basically called him a wimp for being hungry. Looks like he might be able to officially break in the PICU crew this time.
We haven’t been posting much lately primarily because there hasn’t been anything to report. A simple explanation is that just about everything in his body right now is not working in the way it ought to be working. To help one organ you do something that hurts another organ. His recovery is going very slowly and will probably continue to go slowly. We spoke with the therapist who has worked with him the most and she confirmed to us that the process of gaining strength is going slower than normal and slower than she expected. He just isn’t gaining the strength back. He has made real gains from where he started from but they are still limited. He can create muscle tension but he can’t lift his legs or arms. He improves a little one day and then the next day he takes a step backwards. At times, his left arm responds much like what you would see from someone who has suffered a stroke.
This is why we hesitate to say that Andrew is doing good. He is significantly better. He is doing fine in the big picture. But he is just NOT ok yet. His primary cancer doctors and nurses have coined the phrase “Andrew weird” to aid in the process of caring for him. A reminder that great doctors do not merely follow protocols or numbers but apply the protocols, research, and test numbers to the actual patient they are treating. We are fortunate to have that kind of care.
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