Plot twist: it looks like we'll be here until the end of the week for at least 3 reasons:
1- He is probably withdrawing from a benzodiazepine taper that we did too quickly so we have to address that
2- He is not tolerating the g-tube feedings as well as hoped and is vomiting daily. We can't leave until we make sure he can get proper nourishment. He got so dehydrated this morning that he had to have an IV put back in after some scary unresponsiveness and a sunken eyes.
3- The neurologist we saw today (the 3rd one and the original person that diagnosed Oliver in 2010) wants to do a spinal tap to make sure we have not missed anything (before we just go home and treat all these bizarre symptoms). We have agreed this makes sense.
All three of these issues = we are likely here until Thursday/Friday.
In good news, he is continuing to have somewhat consistent bowel movements and (mostly) wet diapers on his own!
At home, we'll be working on getting a hospital bed and setting up nursing care. They will help us manage his symptoms and G-tube feedings, and support us through this journey with a very unknown ending.
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| Hoping to get some meat on those bones soon! |
All of this feels heavy to us as I am sure it does to you as you read it. We feel like Oliver has turned into skin and bones, and his puzzle of symptoms that pop up like a whack a mole game make proper diagnosis very difficult (even for the most skilled physicians). On the bright side, when we get out we'll get to be patients at the Complex Care Clinic that has physicians on call 24/7 (so you get to call directly to their cell phones). The clinic is devoted to care of the most fragile and complex children, where multiple specialists are involved, and they can help facilitate communication across the care team.
I have packed and unpacked twice. I have decided I won't pack up until I actually have the discharge papers this time. Now that we know we'll be here a bit longer, Andrew and I will begin to trade off nights again as we've gotten pretty sleep deprived the last 4 nights.
Thanks for being on this crazy ride with us. The world is a noisy place, and there are all kinds of ways you could use your time or focus your prayers. We feel so deeply grateful you've chosen to share in this season of unknowns with us.
We are not meant to do anything alone, especially the hardest things in life.
And of course for our sweet Ollie we will always give everything but up.
4 comments:
I have a baby diagnosed with TS that had us in the hospital nearly six weeks after he was born. I have been following your journey and I don't know you, but I love you, my heart breaks for you and I know so well the pain of the never ending hospital stay. Yours must feel even more hopeless as there is so much up in the air. You write very beautifully, I feel the pain beneath your gentle positive spirit and I wish we could be fast friends. Your posts have made me cry so many times. I am in your corner all the way in Seattle. You are in my daily thoughts and prayers. One day at a time.
My family has been and will continue to pray for you. The Johnson Family
Praying for all of you. We are here to encourage and hope with you for Oliver to feel better soon and strength and peace in all circumstances.
Jesus Knows. HE is absolutely aware. You are on my heart and in my prayers. I feel HIM as HE is with you there, in this minefield.
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