Back on the regular floor. Thank God. We were not super happy with the PICU experience.
Waiting on a follow up swallow study. If it shows Oliver is aspirating on all liquids we can't leave until he gets a G-Tube. The study needs to happen tomorrow, because there is another holiday weekend coming up. Sigh. Happy New Year
Depending on what the MRI shows and what the neurologist says, there is a chance we could get out on Saturday...but we are facing some major challenges with Oliver's care being more complicated than it already is.
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| Sweetness |
So we are aggressively planning for getting all the tests we need to have done in the next 24 hours, since the hospital, in essence, goes into holiday mode yet again. We also need to figure out how we are going to deal with significant changes to Oliver's diet, food and drink prep, diapers, catheters, weekly colon clean outs, ongoing dehydration concerns, pulse oximeters and perhaps even oxygen. We are learning how to use the catheter on him ourselves, since we'll likely have to do this when we get home. Andrew and I have gotten some serious medical training this go round.
At this point, most everyone is coming to a similar conclusion: what is going on is neurological. This is not good news. There are no easy fixes.
Per the recommendation of one of the doctors I have laid all of this out visually to try and make sense of it all. Some friends came to see us and ran to Staples to get me some post-it notes that you stick on the wall. I think this could help all of us as we try to put together this puzzle.
And side note: try not to get sick over the holidays, it not only stinks to be away from the fun festivities with friends and family, but you also will spend vast amounts of your time waiting. And waiting. And meeting the new residents that are young enough to be your children. Boo.
So we will see what tomorrow holds. We are stressed and tired, we feel utterly overwhelmed at what we are probably going to have to do moving forward, but we are remaining a great team. Oliver has tolerated all of this SO well, but he is beginning to hit a wall. He is no longer smiling at every person that comes in and withdraws when someone reaches towards him. We are amazed at his resilience, but we all have our limits.
1 comment:
I remember so well spending last December- March in NICU at MUSC with my grandson. His parents were physically and emotionally worn out to say the least. The hospital might be open 24/7/365 but during the holidays they run a skeleton crew because the regular staff is on vacation. The waiting game gets even more intense when you are watching your critically ill child just lay there at the mercy of the scheduling gods. I truly feel your pain and frustration and my heart goes out to your sweet Oliver. It's also so overwhelming to get a crash course on medical procedures that you will have to provide yourself when you get home. Just take a deep breath and exhale when you feel this way. Your precious boy is in your excellent care and God's angels are watching over him. Prayers for the entire family.
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