I feel like this is a new beginning for Jaclyn. It's interesting that this is Easter and a time of resurrection. I see it as a time of rebirth, it's a new start for Jaclyn. Last week was tough. Jaclyn was admitted to the hospital on March 28th and we are still here on Easter. She has a bad sinus infection and Paratitis in her left cheek. Once again, due to a wiped out immune system, it seems that every bug is attacking Jaclyn.
Jaclyn was in much pain March 29-30th and was getting the pain med, Dilaudid through an IV drip. On March 30th at approx 4:30am the Dilaudid pain med was changed out for a new bottle. Within 20 minutes, Jaclyn stopped breathing....CODE BLUE and the Crash team surrounded Jaclyn giving her oxygen. Finally, Jaclyn started breathing on her own. Watching Jaclyn "Code Blue" was an absolute nightmare. The bottle of Dilaudid pain med was pulled and sent to the lab for analysis. Since Jaclyn had been receiving that pain med all night without any problems until the bottle was replaced, the most likely explanation is that the med was mixed incorrectly.
This is worse than any nightmare I could have ever imagined. Too little pain meds and my poor daughter is in agonizing pain....too much and she stops breathing. Time to check out of this nightmare.
Good news.... Pet Scan on Monday was PTLD FREE! I have so much respect for Jaclyn's amazing ONC Team. Dr. T and Dr. G are the best! Creatinine is coming down now that Jaclyn's mouth infection is resolving. I know that Jaclyn will be back home this month for her birthday, April 30th.
We plan to pack up and check out of this joint soon as Jaclyn has had all that she can possibly handle. In the very near future, we are checking out and headed................
Can you believe it?
Are you ready?
I am going to say it.....
I really am...............................................................
HOME
definitely prior to April 30th.
It's our time to be healthy and happy in Colorado again.
Thank you to all of our heaven and earth angels. May you and your families have a very blessed Easter.
Peace, love, good health and much happiness to all of you.
Susan, mom of Jaclyn