Here are the last 2 updates from Quinn's Caring Bridge site starting with the one immediately following what we posted yesterday.
Saturday evening, 6/25:
Day -6 (Day #2 of Chemo) - Part 2
Thank you everyone for your prayers for us and Quinn. Quinn is doing better now. His blood pressure has come down REALLY well. It is actually at a good level right now. It appears he still does not have any active bleeding. The CT scan showed that lungs DO have quite a bit of liquid and likely infection. He has been on 3 antibiotics since last night so that should take care of that over time.
They put him on a CPAP machine for breathing and it is really helping. His CO2 level (normal: 35-40) was 62 this morning then 75 by the time we got to ICU. It has now gone back down to 65. The next test they run at 10PM will be key. It needs to at least stay the same if not go down. If it starts to go back up they may have to put him on a ventilator.
He finished his round of chemotherapy (Cytoxan) today. He got nausea a lot more quickly today and threw up again. He feels crummy but pain wise the morphine works very well. We were able to give him a sponge bath to wipe off any of the chemicals he is secreting. I had touched one of his tears with my finger earlier and it burned. We have to wear gloves while touching him just to keep the poisons from affecting us.
The ICU doctor said we should expect him to stay here 2-3 days before returning to our suite in the Transplant Unit.
Thank you to Jenn Polliard for watching the kids today so Rosalinda could be at the hospital with us. Thank you to Susan Shipp for spending the night at my house tonight so Rosalinda and I can take turns sleeping in the Transplant Suite and staying in the ICU with Quinn.
Sunday afternoon 6/26 Update:
Day -5 (Day #3 of Chemo)
Quinn's stomach is more bloated than yesterday. It could be air in his stomach forced there from the CPAP machine and/or fluids from all the stuff they are giving him in IV's in his guts - probably both. To help with the air in his stomach, they put a small tube down his throat. Some air did come up initially along with some fluid but then it stopped. It could be there really isn't much air in there or it could be clogged with a blood clot. A small amount of not-terribly-old blood did come up in the tube.
His oxygenation has been gradually falling, which is bad. Yesterday it was 98% when asleep and 100% when awake. Today it is 93% when asleep and 95% when awake. Another chest X-Ray didn't show anything worse than yesterday so perhaps it is because his guts are pushing up into his chest cavity there isn't as much lung capacity. His CO2 levels are still in the 60's like yesterday so that is acceptable for now. If the pneumonia is bacterial, it should be covered. If it is Viral, we just have to wait. If it is Fungal, it would be very very bad. He is on some anti-fungal medications so hopefully it is not.
They are giving him a diarrheatic as well as the Lasix to help him urinate out a lot of his liquids. He took in far more than what came out yesterday so they are going to be aggressive today to get the fluids out.
We have to move his body around every couple of hours to help him try to work the gas out of him one way or another. They have stopped all narcotic pain medications (i.e. Morphine) because it can inhibit him from working the gas out. He is on a liquid tylenol as needed.
In the ICU we had a dedicated full-time nurse named Amy yesterday and today and Renee last night. They have been AWESOME. There is one area that OU Children's Hospital has been outstanding at is their nurses. I think of all the time we have had here there are only 2 or 3 nurses that we did not care for. There have been another couple of nurses that come in and help during periods when there is a lot of activity. Quinn has his trusty PICC line that he got put in a couple of months ago in addition to a 2-port Central Line that was put in last Wednesday. With 3 accesses, it is a lot of juggling for one used for continuous platelet infusions plus about another dozen medications in addition to his chemotherapy regimen. They have talked about putting in another PICC line on the other side if things get more complicated but everyone is hoping we don't have to go there.
As for his Chemotherapy, today is a BIG DAY. He still gets his one big dose of Cytoxan like he has had the past 2 days. Today he also gets 3 doses of Busulfan. He had one this morning that he seemed to do well with. He gets another one this afternoon then another one tonight.
Our HEMONC doctor (Dr. Crawford) was unusually quiet this morning. I am not sure we fully understand how serious things are right now. Quinn needs to get this fluids out and his lungs clear so that he can breath on his own. That will allow him to go back to the Stem Cell Transplant Unit.
I appreciate everyone's prayers. I feel great comfort knowing so many people are praying for Quinn and for us. We knew the journey was going to be long and hard. We just weren't prepared to be slammed so hard on the very first day.
"And the prayer of faith shall save the sick, and the Lord shall raise him up; and if he have committed sins, they shall be forgiven him"