Day 90: Preparing for Transition

Duplicated on our CaringBridge site for permanent record here.

February 15, 2021, written by Mama

90 days in the hospital: 63 in PICU, 27 in the Oncology ward

Day 90 is a milestone day just by virtue of its number! Twenty-five percent of a year has been spent living in this hospital.

It is with only some trepidation of unforeseen complication taking us down from our blind spot that I announce that this is Thomas's last night on the Oncology floor. On Tuesday he should be onward and upward--well, he's actually moving down seven floors--to In-Patient Rehab!

So, today we noodled through the hospital in the wheelchair and even ran into Dr. A----, one of our Resident Surgeons from the bad, early days in PICU. He had come to visit us and almost missed us, so it was great to run into him and let him see Thomas's vast improvement.

Today Thomas played a matching game and with Playdough for OT and then got to ride his tricycle for PT. He also watched some Winnie the Pooh before melting my heart by inquiring, "Mama, do you think there are any holy movies about Jesus on Amazon?"

Eating Well

Thomas has for days been meeting his goal of consuming 50% of his daily calories by mouth. Therefore, today the team reduce his J tube feedings by two more hours (only 8 hours overnight instead of 10), which represents 200 more calories he must eat by mouth: a goal total of 900 calories per day instead of the 700 he has been averaging. 

Spleen Statistics

Today we learned more from Infectious Diseases about Thomas being asplenic (the state of lacking a spleen or lacking a functioning spleen): For an organ I knew nothing about except how to spell it, it turns out the spleen is quite important. On one hand, I'm told he'll live a normal life as long as he keeps up with his vaccinations. On the other hand, I read helpful information, such as the fact that he could develop asplenic sepsis, with "initially flu-like symptoms, followed by rapid deterioration within hours with fever, severe malaise, signs of sepsis, and meningitis," all of which has a 70% mortality rate without treatment, but only a 10-40% mortality rate with early treatment. (Source)

The spleen removes encapsulated organisms from the blood stream, so in particular those are influenza, Haemophylis, Pneumococcus, and Meningococcus. Therefore, today Thomas received his Pneumovax vaccination (normally reserved for those 65 years and older and those who are asplenic) and his Menveo vaccination (normally given to teenagers). He will have to keep up with boosters and also get his Meningitis B vaccination after he is 10 years old. He was a champ and didn't blink an eye when receiving the two injections.

Any time Thomas develops a fever, I'm told I don't have to rush him to an emergency department, but I do need to call his pediatrician who will ask questions. For example, if all the kids have a respiratory bug with fever, that's one thing, but if Thomas is the only one with a fever, then he might need to be brought in for blood cultures that day. 

A Special Visitor

I was delighted today to see Dr. S---- walk in our door, as he was the Resident Surgeon through the worst six weeks in PICU. He participated in nine of Thomas's ten emergency surgeries. He visited Thomas three times daily at a minimum. As he arrived on site around 5:00 a.m. each day, with his backpack still slung over his shoulder, he visited us . . . and every day I got up out of bed to converse and confer because Thomas's life hung in the balance then. (In contrast, now when a Surgical Resident makes his or her early morning daily visit to look at Thomas, I wave cheerfully from my sofa-bed and go back to sleep.) Each day, Dr. S---- visited later with the big surgical team. He visited again every single day as he left for home, his backpack slung over his shoulder again. I've always suspected we were his first and last visits of the day. Most of Thomas's emergency surgeries happened at inopportune times, such as the middle of the night, and just like our head surgeon Dr. B----, Dr. S---- zoomed in from his family at home, arriving to the OR within minutes. I wish I could thank his wife for her sacrifice, too.

Once a Resident gets moved to a new rotation, the patient doesn't get to see him or her anymore. I've been fortunate that most of our Residents have come back from time to time to visit Thomas socially. Dr. S---- remembered all the details about Thomas, asked me many specific questions, and was very moved to see Thomas sitting up, talking, his hair grown back, and to hear of his adventures.

I trickled tears for the whole visit until the flood gates opened at the end as I thanked him for helping to save our son's life.

As I can anticipate that we are within weeks of going home, it is that much more special for me to see our old "war buddies" from the trenches so I can say goodbye.