Thursday, July 8, 2010

Days 86-90 (June 5-9)

DAY 86--

As you can see, martin is still on the CPAP. He's actually doing quite well on it, but it's hard to hold him. It's hard.

They decided to discontinue the diuretics. It's turned everything into a vicious cycle. The diuretics cause him to pee more, and by peeing more, he loses sodium. So they increase his sodium. And it just goes back and forth. So they stopped them.

His electrolyte levels will be retested in a few days, and hopefully things will level out. One of his Primary Nurses was working today. I'm always so grateful when they're working because they know him so well, and I've come to be so comfortable with them and can sit and chat. It's nice!

DAY 87--
No real changes with Martin today. His oxygen is at about 40% on 7 liters. I would really give just about anything to be back on the high flow. As hard as it is to have him be on the high flow, right now I would be grateful for it.

DAY 88--

HIGH FLOW!!! I never thought I'd be so thrilled to see Martin on high flow. He's on 5 liters, which is the most I've ever seen him on the high flow. But he's on about 40%, which is normal no matter what his flow level is.

His calories were increased to 26 calories, which still terrifies me. Every time they mention increasing the calories I cringe, and wait for a phone call to come in the middle of the night.

I went and did the survivor beads today with the Parent Support Group. Now I have a cpap bead in the middle of the cannula beads. That's Martin for you though.

They also decided to start the steroid dexametha-something today. He's been on it before, and it helps get his oxygen needs down. So they're hoping it works again. It's hard, because it is a steroid, it can have serious side effects. They have to weigh the benefits against the risks. In Martin's case, the benefits outweigh the risks.

DAY 89--

FIELD TRIP DAY!! OK, so it's not really a field trip, but it's the farthest he's been. Also, it makes the transfers to the Children's Hospital next door not seem so traumatic. They're actually not very traumatic anymore. The first time was VERY hard, but now it's just another thing. They took him over today for a sweat-test for cystic fibrosis. Although he has already had a negative blood test, they can't figure out anything else. I googled about it, and he has almost every symptom of CF. It's scary.

You can see them packing up Martin on the life flight incubator for the transfer. That's Allison in the background. She's one of the Martin's Primary Nurses. That pretty much means, whenever she's working she gets to take care of Martin. She knows him REALLY well, which is great.

We had some difficulties with this transfer. You see, Martin is on 5L of O2, with the high flow. The transfer team doesn't do high flow. At all! And the highest they go is 2L. So guess what they decided to do?

A trial on 2L of 100% oxygen. Because Martin's eyes are fully vascularized they can do that. High levels of oxygen can cause setbacks in eyes that are still developing. I was freaking out a little bit, and I was NOT comfortable with their decision.

He did ok, so they packed him up and we went over. While I was filling out paperwork getting him registered and everything, since he was an out-patient, they got him started. First they put little electrodes on his arms to stimulate the sweat glands. Then the cloth to collect the sweat, then plastic-like saran wrap stuff, then gauze, then about 100 warm blankets. I could barely get my arms around the kid!! We had to wait for about 20-30 minutes. They unwrapped him, collected the gauze and told us they'd call the NICU in about 10 minutes to let us know if they got enough.

So we packed up and went back to the NICU. They called us, and said they had enough on 1 arm, but not on the second one. Therefore, they couldn't test. Annoying!! We went through all the troubles of trying to find a way to get him there, and make sure he had enough oxygen just to have it not work out, because he's probably not old enough to make enough sweat. They said they'll probably test again when he's older.

DAY 90--

Today is the last day of the large doses of the steroid dex. Then they'll decrease it for a few days, and then decrease it again.

I talked to the NNP and the Doctor about the future plans, and it basically sounds like they're just working on getting the O2 under control. They weaned his O2 down to 4 1/2 L, but it doesn't look like 4 1/2 L on the gauge, and it doesn't sound like 4 1/2 L (O2 that high is pretty noisy). It looks like 1 1/2L and sounds like that too. But he's doing just fine on it, wherever it happens to be.

He started being cranky today. It sounds like he's in pain though, not like he's just unhappy. THe nurse tried to swing, and that helped a little bit, but it's just a heart-breaking cry.



I happened to stumble upon your blog awhile back and have been thinking about you and your family - happy to hear an update. Your son is beautiful and you are a testimony to others around you. Remember God won't give you more than you can handle and Martin is in the wonderful hands of a God who loves him. The journey is long but soon you will hold him in your arms between the walls of your own home. Hang in there!

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