So…some wonderful news! Poppy was well enough on Monday to have her endoscopy and colonoscopy! Hallelujah!! This is what we’ve been anxiously waiting for!! Dr. Geifer found some mild abnormalalitites, but no ulcers and no visible cause for deep concern. He biopsied many areas along her GI tract in hopes of finding something treatable of which to attribute Poppy’s tummy troubles. We are still anxiously awaiting those results.
And then the not so great news…just as we were heading home, Poppy awoke with a 102 temp, and proceeded to fever for the next 2 days. She still has ger nasty upper respiratory gunk that she’s had, but a temp that high for a kid on immunosuppression is concerning. All the while, Poppy kept her same playful smiley attitude with a little more fatigue than usual. The girl’s a trooper, so we were encouraged to head home, given how she looked. Even when she’s sick, she’s pretty playful and happy! We came home to see Dr. Idzerda. Dr. Idzerda ordered tests to try to pin point the cause of the fevers. After 3 days of Poppy continuing to deteriorate, despite testing and antibiotic efforts, Dr. Idzerda and Dr. Albers (transplant) made the call to life flight her out to Seattle, where further testing and support is readily available.
Poppy is droopy and lethargic, pale and needing a little oxygen via nasal cannula. She has mouth breathing with lots of gunk in her poor nose. Her eyes and demeanor just look sick 😞
Her chest X-Rays have shown a rapid change, however still looking ‘virally.’ She did not tolerate feeds well yesterday and was clearly not feeling well, and her oxygen saturations while sleeping were in the mid 80s. Hers are usually 90s even while sick. In the past, when she had RSV last year, I remember satting in the 80s was enough to be admitted. I just sat down on he floor in her room and stared. Her resting heart rate, usually 100-115 was 155. She was satting 83-87% 😞 Even the night before her sats were beautiful….I just sat there and sat there…silencing the obnoxiously loud alarm the pulse ox sounds when something is out of range, trying not to break down. Why? Please Lord, why?
I had just hung up the phone an hour ago with Dr. Idzerda. Informing her that Poppy had spiked another 102 and thrown up again…and now this…I had to call her back, knowing admission was indeed happening….this is the life we lead…The Lord is teaching me great patience and perseverance…I am such a planner by nature and unreliability kills me. I used to not understand people who were unreliable…just be reliable…just do what you say you’re going to do, show up when you say you’re going to show up, let’s make a plan and all follow through….well, I am now tremendously humbled…my life is unreliable…I have become unreliable. It’s all out of my control. Thankfully God is in control and His hands are the best hands to be in. He is sovereign and things can change in an instant..they really can. He is always here, always faithful. Get over yourself, and give it to God! Easier said than done, but always so freeing. Please Lord, help me give it over to You.
Thankfully, my bag was already packed. It’s not like you want the worst to happen by any means, but you start to plan for it, and pack bags when things seem off, just in case. And once admitted, you really don’t know when you’ll be back. It probably sounds crazy but it’s the life we lead, like so many others here. It’s the unspoken reality of health and morbidity…Lord it’s in your hands!
So as her lethargy and sickness became more apparent. Some labs came back out of range, so the best thing was to get her to Seattle where she could be supported best should she need more support than MT can offer. I cannot say enough amazing things about Dr. Idzerda and the whole crew at Acorn Pediatrics. Their commitment to superb patient care is phenomenal. What a tremendous blessing to have such incredible care in MT!!
She and I arrived around 6:00 this morning. Poppy has been lethargic and has completely slept the day away. It could just be that she has a nasty virus and just needs supported through it. It could also be that a secondary bacterial infection is brewing, so more labs and antibiotics for today. Hoping to hear something soon. Even nurses who know her well are convinced something is not quite right. 😞
Also hoping to hear back about her endoscopy/colonoscopy biopsy results…I’m also curious if her sick gut has anything to do with the sudden down turn. Praying praying something will become clear to the team.
We are here, in our home away from home. Brad and Crosby are on their way. The ‘floor’ is full, so Poppy is in the CICU. As much as you don’t really want what being in the CICU means, they are like family. God has surrounded us with amazing people to pray, care, and support us along the way and it’s overhelmingly humbling. It’s inexplainable and yet so divine and obvious the Lord’s divine orchestration…We are praying for answers. Lord hear our prayers ❤️