Idan in the SCCA House Play Room
So we got our schedule for next week. The good news is that Idan will not be admitted to the hospital except for the day of his DLI and it’s only a day admission so we can most likely go home that night. The bad news is that next week is going to be a living hell for the three of us.
Here is a summary of our week:
Monday: Kidney Test: We have to be at the hospital at 8:00 a.m. for a kidney test. This requires Idan to fast the night before, and he can’t eat any solid foods until after the test is over —- 8 hours later. So for approximately 16 hours, Idan will not have anything to eat. During this time, they will be placing two IVs, one in each arm, and taking blood from one arm while infusing a solution into the other arm. This test is required to measure the dosing of the pentostatin, the chemo drug he will get on Wednesday.
Tuesday: Picc Line: Another day of fasting all day. The only slot available was for 3:00, and Idan cannot eat anything after 7:00 a.m. We have to be at the hospital by 1:45 p.m., and will have to endure over an hour of waiting before the procedure starts.
Wednesday: Chemo infusion at 10:45 a.m.: 5 hours at the clinic during which Idan will receive a continuous infusion of liquids and the chemo will be infused a couple hours into the visit.
Thursday: Break. Whew.
Friday: DLI: We’ll be admitted to the hospital first thing in the morning, Idan will have a couple hours of hydration and then the DLI. After he will be monitored until late in the day/evening. We should be discharged by nighttime.
The following week we’ll have a couple clinic appointments to check for GvH, but they don’t expect to see anything for a couple weeks. He’ll have his picc line removed some time that week (or potentially after the DLI friday, but we have to see how many pokes he has lined up for the following week before we decide when to remove it).
If anyone has any ideas of how to keep a starving two year old who is confined in a room and attached to IVs happy and entertained, we’re all ears.
Some ideas for entertainment while in the hospital bed-
building towers with disposable plastic cups
hiding small objects in bed for a scavenger hunt
puppet shows, costumes and acting with different voices
shadow shows behind a screen with a flashlight to guess the object
dominoes- building and matching
bubbles
tracing outlines of toys, hands…
internet songs and games-Muffin Songs, Clifford, Dr. Seuss’ Seussville…
magnets
pretending to be in different locations
Our prayers are with you,
Rivka