Wednesday, June 9, 2010

Day 66-70 (May 16-20)

DAY 66--

Martin is still on the low flow and he's doing really good on it. They stopped the steroid, which is great. They think it had a positive effect on him, since he was able to wean down to the low flow O2.

He gained some weight, but I don't remember how much. He's just been losing lately because of the diuretics that I was just happy to hear that he gained! I was able to try to breastfeed him twice, but the scale said he didn't take anything.

DAY 67--
When I came in this morning, the nurse told me how Martin has been having diarrhea. Because of that, they stopped the extra calories they have been putting in his milk. I was so worried that something would happen with the increase of calories. I was only able to try breastfeeding once, that's all the nurse would let me. He did take 8ML though, which was better than the day before!

They did one of their standard blood draws to check his electrolytes. Depending on the levels of everything, they give him medications to help the levels. Like sodium. He's had low levels of sodium pretty much his whole life and they have been giving him sodium to help increase the levels to the 'normal' range.

Uncle Glenn and Aunt Natalie came by for a visit as well. Natalie loves to come visit, because she's an LPN and dreams of working with babies. ;) and she can explain things to me in terms I understand! since only one other person can be there at a time (besides me or matt) Nat came in for probably 2 hours, while Glenn slept in the waiting room. Then he came in for about 2 minutes, commented about how tiny Martin is (although he seems huge to me!) and that was it. Boys are funny that way.

DAY 68--
You know it's not going to be a good day, when the hospital's phone number shows up on the phone. I got a call at 6:30am today, from the NNP on duty. Martin's tummy is distended again. It's like a deja vu of last time. Start an IV, stick an Anderson tube into his belly to help get air out, and make him NPO.

It's so hard to have to go through this again. He still has the diarrhea from yesterday, and the nurse had to give him a catheter because he wasn't producing enough urine. She was so understanding though, and close the curtains around us while I held him. And then I had one of the many breakdowns I had today.

The nurse had to move his IV, which is good and bad. The IV started in his head, and she moved it to his hand. It's always hard to see an IV in his head, and I hate how I'm not shocked to see in there anymore.

Martin is also back on the high flow. Things like this are just hard on his little system. Shoot, they're hard on me!! I can't imagine being the one actually having to go through it all.

They decided to do a spinal tap. I completely lost it then. They wanted to test the spinal fluid for meningitis. I don't think I would have made it through today if it wasn't for Becky--the Parent-to-Parent rep and the nurse. They were very kind and understanding. It's hard to watch someone so tiny go through something so hard. Actually, they wouldn't allow me to watch the tap, not that I wanted to. I just wanted to snuggle with him and make him healthy.

DAY 69--
They took a few GI xrays today to see if they could see anything, like a blockage or something. The NNP said that the first one looked bad, so they were consulting with some surgeons to see what they though. They want to put another picc line in. As the nurse was examining him, she mentioned that the other nurse who put it in didn't want to take it out because it took her over 3 hours to put it in!! I couldn't believe it. My poor boy had to go through 3 hours worth of someone sticking a needle into the side of his neck.

They took another xray later in the afternoon and said it looked better than the first one. Hopefully this doesn't last as long as the last time he got sick. he was NPO for 10 days with that one! in two days they have him scheduled for a GI tract xray with the barium. That will check his stomach and intestines. He's already had a lower GI xray, and now he gets the upper GI. Hopefully since they'll have now seen the ENTIRE GI tract they can figure out how to help him, and what's causing everything.

DAY 70--
We're still playing the waiting game on Martin. We went up late today and went to the CPR/Discharge class. Now when Martin is ready to come home we'll be ready on our end!!

You can see how much he's grown in the past 2 months. I swear, he looks twice his size! But still tiny with dad's hands on him.

The doctors decided to cancel the picc line, so they're just moving the IV as needed, and they stopped the antibiotics. Right now he's getting fluids and fat so he doesn't lose a lot of weight. Not that he HAS a lot to lose.

This is Martin in the warmer bed, as I'm getting ready to change him. Matt thought there needed to be some more pictures of me with him, so he took this one. :)


Amy R. Nelson

Sounds like a rough couple of days! He is an adorable and strong boy! I'm sorry this has all been so hard on you and your family!


Hope that things start looking up for you guys! Your hair cut looks cute, if that helps any. Have a great day!


So did they get a picc line in on 28 April - 1 May and then take it out? Now May 19-20 they want another one but cancelled it? I agree with that nurse who said not to take it out. I am furious for you. You said it could stay in long-term but they took it out. Who would do that?!?! (unless he is coming home that day) I am sorry he has to go through so much.

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