Set Backs and Strides

Friday night I posted fully expecting to head home. Optimistically or irresponsibly, you pick which it is, I didn't even pack a suitcase. I grabbed some pajamas for William, but that was it. William was admitted that night after his transfusion when he was unable to keep his oxygen saturation above 92% on his own. Ideally, most of us function at 99 or 100%. Low 90s is not great and he even dropped into the 80s frequently. His high respiratory rate and the appearance of labored breathing was cause for concern and another chest x-ray was taken. No significant change. That's good enough for me. But making it to Camp Okizu slipped from our reality.

Saturday morning labs revealed an increase of hemoglobin from 6 to 7. That's unusually small after receiving a unit of blood. Hemoglobin lesson: normal range=11.5-14.5 g/dL. Transfuse at <8 g/dL. Another blood transfusion was ordered and also a platelet transfusion. All attempts at oxygen weening failed as well. This secured another night in the hospital.

At this point I left William in search of a toothbrush and change of clothes. The new hospital may still be under construction and way behind deadlines, but I'm so glad the new Target nearby is finally done.

At 3am, Sunday, the nurses woke us up to tell us William was getting transferred to the PICU for closer observation because of his labored respiratory state. I thought he seemed fairly typical to what he has been the past few days, but I guess the uncertainty of what may be going on was causing increased concern. So I packed up our things quickly and we moved rooms. Another CBC and chest x-ray were ordered. CBC showed no increase in hemoglobin since the 3rd transfusion. X-ray looked fine, but 2 more units of blood were ordered as well as an ultrasound of the primary tumor. The doctor seemed fairly puzzled why he was burning through the red blood cells at an astounding rate. He ordered more labs and urine tests. Everything seemed to check out. William was moved out of the PICU Sunday afternoon, but since his ANC dropped to zero, he was moved behind the double doors in the isolation rooms. He continued to require oxygen, but by the time he was almost done with the second unit of blood for the day, he had enough energy to walk up and down the hall a few times. (The hall is only about 75 ft long). Previously he would feel almost too weak to walk to the bathroom and would panic until he got back into bed and back on oxygen.

This morning, Monday, a new William woke up. His lips were pink, his cheeks had a tinge of color and he actually said he wanted to eat. He sat up without too much difficulty breathing and eventually weened himself off the oxygen. He hasn't requested pain meds or zofran. His hemoglobin made it to 11 (great). His platelets are dropping again, but that is only a 30 minute infusion compared with the 3 hours for blood. He are hopeful he will be able to come home tomorrow, but all will be dependent on labs tomorrow morning, continued good oxygen levels, and decreased respiratory rate (that one is still a bit high, but showing improvement.)

William has jumped back on the weight roller coaster and has become quite skeletal. He also has a wheelchair due to the tumor in his tibia. Too much weight bearing on his leg could cause increased damage to the bone since it is still growing and a foreign mass is in it. His hair is still there and getting so curly. He has tight little ringlets on the top and I love it. He's not supposed to lose it as fast with this round of chemo, but I'm assured that he will. Good thing bald is so beautiful too!

So our lives change and we adjust. Sometimes we move backwards, but hopefully the steps we take forward cover more distance.