On the Feed and Grow Plan Again!

Posted by Erin Wilson On Sunday, August 16, 2009 0 comments
Josiah has spiked a fever a couple of times over the past few days, so we are currently taking cultures to rule out an infection. He has spiked the fevers usually within an hour or so of when he next pain meds are due and so the thought is that maybe Josiah is going through some withdrawals because we have been weaning the amount of pain meds he gets. Ruling out infection rather than just assuming it's withdrawal sound good to me.

Josiah sort of hit a wall early this week as far as weaning on his ventilator support. We were on week 2 of a 4 week plan to wean off the ventilator and try to extubate again. But Josiah put a stop to that this week. He started not being able to keep his O2 sats (the amount of oxygen in his blood) up high enough and so we had to go back up on support. With this happening this week the MD's have discussed it and it seems like the new plan is to find the least amount of support that Josiah can tolerate comfortably on the vent and just allow him to feed and grow. We will continue to feed and grow until Josiah is big enough to have his 2nd scheduled open heart surgery. He needs to gain at least 2 more pounds (hopefully more) before he can have his Glen (the 2nd surgery). So in order to monitor that we are now have an order to weigh him twice a week to check on his progress. What does all this mean... well, Milo and I are preparing for at minimum another 3 months. That doesn't bother us in the least because if we are still here in another 3 months that means our little love is still with us. I wish everyone could meet Josiah. He is just amazing. He has captured the hearts of many of our nurses as they have become such an amazing part of our lives.

We are now trying to figure out how to make a new normal here in Charleston. One of our nurses suggested getting permission for our family to be together with Josiah a couple a times a week. The rules are usually no more that 2 people at a time and no children under 12. So that would be awesome. She suggested that we could schedule a couple evenings a week where we would bring the girls in to help with Josiah's bath or read him some stories. She even suggested us all watching a movie together, a short movie that is. I know the girls would love that and it would help Milo and I feel like we are a family of five. I'm hoping to find a pre-school for Daylia a couple days a week to give her some outlet. It is so so hard to plan though. I talked with a mom whose daughter has HLHS and just had a heart transplant this week and she explained to me that for 5 years now they have only been able to plan a week at a time and sometimes that doesn't even work. We are still working on what new normal looks like.

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