‘Off’

Thanksgiving was many emotions all wrapped up into a big heavy ball of glorious wonder and joy. It was happy, humbling and heavy. Thinking about all that Poppy has been through, the miracles we have seen, the trials and victories our family has faced, and God’s amazing provision through it all. And then the humbling realities of what Thanksgiving was probably like for Poppy’s donor family, and the families of Poppy’s friends who have gone on to be with Jesus. Needless to say, they were all heavy on my heart that day especially, and at the same time feeling deeply humbled by their bravery and thankful for our forever friendships. Here we are, with our family, in Montana for Thanksgiving. Many times we wondered if this would ever be…pretty amazing and so so humbling. Thank you Jesus!!

In the last update, I shared about our concern of Parvovirus as Crosby had just come down with it, as well as Poppy’s shunt adjustments that occurred at our last trip to Seattle. Crosby’s rash and symptoms resolved in just a few days and Poppy never got Parvovirus!! Thank you Jesus!!!

Poppy though, has been ‘off’ since her adjustments. In the immediate days after her adjustments she was irritable, droopy posture, flat affect, and just plain old acting weird. I called Neurosurgery and we decided that if she didn’t improve overnight, that we would take her in for a head CT. Then she had a few good days after that, so we thought maybe she was just settling in to her new settings. Great! She’s back! Only not really. Then she started flailing and became irritable and saggy again, so we ran her to Great Falls for a CT. The scan showed her ventricles to be small. Her neurosurgeon was happy! So this is good right? This is what the doctor wanted and it also means that her shunts are working!! Only since then, she’s had some more pronounced nystagmus (strange eye movement) of which I called Neurology about. They were confident it was just a sign of the injuries she’s had to her brain and that was that. On top of that though, she’s not been quite as interactive, and has started moaning every time we put her down for sleep (ok, this girl hardly ever cries and always loves to be put down to sleep).

Over the weekend she had increased vomiting and diarrhea, and was running a higher temp than usual. She also decided to throw me a new rhythm one night when I was taking her vitals. This prompted some lab work, an EKG, and some further monitoring by a holter monitor (stays on for 24hrs and monitors heart rate and rhythms) just to be thorough….on the way home from all of that (yesterday), she decides to vomit 3 more times, despite slowing down her feed rate (a feed rate she’s been tolerating for months, now all of a sudden she isn’t). Because of the vomiting and looking back at all the calls of concern I’ve placed in the past few weeks, Transplant team also suggested contacting Neurosurgery again just to keep them informed. They were great, and also reviewed the last few weeks of complaints and said, ‘if you lived here, we’d have you come in either tonight or tomorrow.’ ‘It looks like numerous issues have transpired since we adjusted the shunts, and it seems she’s not liking the adjustment. ‘ And so we packed our bags and jumped in the car despite the questionable weather, in hopes of preventing an emergent situation and most of all, hoping our girl can feel better soon. She will also see Transplant team and Opthamology as well.

You may be thinking, ‘whoa! Isn’t that a little extreme?! Sometimes babies are ‘off’ just like you and me-we all have off days!!’ And I completely agree, until you have a medically fragile child. Details matter all of the time…they matter even more when you’re rural. A life flight is just not the desirable mode of transportation for many reasons, and so we do everything to safely avoid it.

When you learn about heart transplant and rejection and all the other health risks associated with transplantation, they educate you on what to be looking for. I take Poppy’s vitals twice a day at a minimum. I am watching for changes and trends. I record every diaper, what it was and how big. Heart rate, respiratory rate, and temperature. Changes in these things, along with flu like symptoms, irritability, sleepiness and such can indicate possible rejection. We are taught to do all of this because it really can be subtle and so signing up for this type of commitment is really a huge part of transplant-if anything changes, we are to call the Transplant team. That is not to say that sometimes when these things vary, that Poppy is just being a baby or in her particular case, she could be having shunt related issues. For us with Poppy, it really is a guessing game all of the time, and any concern must be looked into for obvious reasons.

But we truly believe that ‘as God guides, God provides.’ He has ALL of this in His hands. He never leaves us nor forsakes us. All of this is part of what He’s called Brad and I to do. His grace is sufficient and his provision, humbling. We ask for prayers of protection over us as we travel, wisdom for the doctors, and relief for our dear girl. We also ask for prayer that we seek Him in all of this, and do so with a joyful heart. ❤️

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5 thoughts on “‘Off’

  1. You are truely an amazing family, you and I had only a handful of meetings, I now know there is reason. Stay well and strong and may light shine bright over you and your family.

  2. Praying everything goes well for you guys in Seattle and for a safe trip back home!!! When it comes to our children, everything is emergent!!!! Take good care of that sweet little Poppy. Hoping for a great report from you after all in adjusted!! 🙂

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