An update

The last two weeks were rough, I won’t lie.

Samuel’s blood numbers would get a bit better, get a bit worse.

Wednesday of last week, things were “better”; we left the hospital feeling fine. We had a family meeting scheduled for Thursday morning with his doctor, his nurse, the social worker. We were looking forward to it because the last meeting with his previous doctor was informative. When we arrived, the NICU director told us she wanted to attend, then we found out another case manager wanted to attend as well. We balked, said no way. Maybe the additional people wanted to be there because they knew we had a consult with another hospital??? Who knows, but it was a good decision.

The meeting quickly degraded into a word vomit fest. Bad news, bad prognosis, nothing but bad. The doctor said they were providing Samuel with maximum support already, his outlook wasn’t good, there wasn’t much they could do. We argued, we fought, I cried. Right before the meeting, Samuel was on 80% oxygen, maximum dosage of dopamine for his blood pressure; his CRP had risen from the previous day, he was even more swollen. We asked the doctors to try, that if there was even a chance something might work, try it.

After the meeting…

His oxygen started coming down, they gave him hydrocortisone (a steroid) — his blood pressure started rising, his dopamine started dropping — he started peeing out excess fluid.

By Sunday evening…

His oxygen has been between 25 and 35 since Thursday night; his respiratory rate on the ventilator has now come down to 45; he’s lost weight (for once this is a good thing b/c he needs to get rid of the excess fluid); he’s completely off the dopamine; his CRP number is 1; everything is getting closer to being in the normal range; he’s got gas patterns in his intestines again. His doctor is discussing starting to wean him from the ventilator, his feeds should resume tomorrow.

I’m cautiously happy. I’m hoping most of the sickness is behind him, that he’s fought off whatever he had. He’s been very sensitive recently to touch, desating whenever he’s handled. Not in the last two days. He was even able to get a bath this morning, and for the first time he seemed to like it!

Sebastien is being his normal self. He’s starting to be weaned from the CPAP. He’s so incredibly strong. Yesterday during k-care, he actually lifted up his own head and turned it. Today he pulled out his feeding tube twice! The stinker. His nurse took several photos of him without all his equipment. My boys are going to be heart breakers!


9 thoughts on “An update

  1. Dan B says:

    Wow, what a crazy roller-coaster ride… Your heads must be spinning at this point… So glad things are looking up currently!

    Hang in there, we’re all thinking of you!

  2. Rebecca from FF says:

    Oh my goodness!! Those photos are just the sweetest things – what amazing kids you have! Praying that Samuel continues is great progress and that Sebastien gets “unwired” as soon as possible! Our thoughts are with you!!!

  3. Also so glad Samuel is doing better right now. If only the staff there could be a bit more, I dont know, creative? Positive? I’m not sure what word to use. But I’m so glad he has again proven them wrong!

  4. Leslie says:

    Jeez…it’s crazy what a similar course to Bobby Sam’s seeming to take. So glad they tried the hydrocortisone! When dopamine did nothing, that’s the only thing that got Bobby back on the right track. Still thinking of you all of the time!

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