Praise God!! Poppy is finally feeling better enough to be discharged!! Her labs came back looking hugely improved from when we arrived!! Thank you Jesus!!
When we left, we knew we were dealing with the nasty adnovirus, but her high fevers, energy level, labs and a chest X-ray left much in question. It was such a great relief to see her labs so greatly improved, and to have rejection, shunt infection, and EBV ruled out!! After speaking with the docs and respiratory therapists at SCH, it sounds like it’s been a rough season for viruses, and apparently adnovirus has the potential to be pretty bad. We are beyond grateful for the Lord’s hand in orchestrating Poppy being right where she needed to be at the right time.
She seems to be regaining energy daily, and starting to get back to her spunky playful self!! Hallelujah!! She is still requiring oxygen while she sleeps, so she has been sent home on oxygen. It seems as though she’s is possibly having some obstruction when she sleeps, as her oxygen saturations while she sleeping have been dipping as low as the 40s and bouncing right back up to at least 95% (Most people’s oxygen saturations are 90-100%) Hence Poppy’s need for oxygen. She will also have a sleep study once she is well to better figure out what exactly is going on. Her tonsils are ‘massive’ as the ear, nose and throat doc put it. Since she was admitted, the floor docs were able to have ENT swing by and do a quick evaluation, instead of waiting until May. He is interested in seeing her well, and repeating her hearing test, as well has seeing what the sleep study shows before we plan anything.
This isn’t our first rodeo with oxygen…she was sent home on it last spring after spending a week in the hospital with RSV. Thankfully this time she is only requiring it for sleep. I have the utmost respect for those on oxygen constantly…it’s so cumbersome.
The pathology report from the biopsies taken at her endoscopy and colonoscopy also came back. So far, things are pointing to gastritis as well as some indicators of a possible drug allergy or infection. Dr. Geifer (GI doc) spoke with Dr. Hong (transplant doc) about the possible med allergy as well as having Infectious Disease weigh in and test for possible infections that could be wreaking havoc on her poor tummy. If it is in fact a drug allergy, Dr. Hong says it would be the MMF (Cellcept). It is one of the anti rejection meds that she’s on and it’s a nasty one. She is on the MMF and cyclosporine twice a day for antirejection, and by the grace of God, has had no rejection on this combination! If the team must switch her off of the MMF to help her tummy heal, they will, but first want to rule out other possible infections, as this kind of med switch is a big deal. There are other antirejection meds out there, all of which have the potential to have nasty side effects, and all work slightly differently.
While we were there, infectious disease came by and determined what tests to run. We should hear the results in the next weeks. It has been such a blessing to finally find possible reasons as to why her gut is so sick. Now just praying for a treatable answer.
Dr. Hong recommended Poppy to take it easy for the next week in order to continue to recover. Her annual cardiac cath/biopsy to check for rejection and MRI have once again been rescheduled for June, in hopes Poppy will be well enough to go under anesthesia by then. The girl has a busy summer of hopefully getting things figured out!! Praying she continues to feel better ❤️
Thank you all who continue to pray for us. It is such a roller coaster ride at times…it is such a comfort to know so many are praying for us. We can definitely feel the Lord’s hand in it, every step of the way…though we are weary and anxious, He is faithful to see us through. Though we were there because of Poppy’s illness, it was apparent we also were there for reasons beyond our understanding and comprehension….Thank you Lord for Your divine orchestration.❤️