Yea, we made it to three weeks! Hey, I'll take any milestone that we can get! The boys actually didn't have any huge changes today which is good. We had a few little hiccups, and maybe one big hiccup. I didn't get great pics tonight, so I apologize now. They like to turn down the lights at night to let them rest. She actually had Patrick's bed open for awhile, and then she shut it, and I was like doh! Oh well, we told them we would be there for hands on tomorrow, so I will get better ones. Patrick seems a bit more comfortable tonight. The doctor seems pleased with his progress. His belly is staying soft right now which is good. He has been off of his Dopamine for 48 hours. His O2 was at 32 tonight. They looked at the 72 hour culture tonight, it said there is an infection, which may be the one that it was a few days back, but it was not final yet. We should know tomorrow for sure what the results are, and hopefully the antibiotics that he is on already are the right ones. He is still on his Fentanyl, and his TPN, which is his iv nutrition. His Picc line culture so far is negative. He is waving his hands, and on occasion he opens an eye to look at us. It looks like it takes all the energy that he has to open his eyes. He looks exhausted. He looks like he is dehydrated and his little hair is a mess. Almost like he had a rough night partying to hard. He likes his primary nurse. When she leaves him his monitor goes off, and he tries to pull on his tube. He is a little flirt I think. We told her that she can't have any days off, because he does well when she is there. The days that he had surgery, and had his issues were her days off last week. She knows she can't have a vacation till they leave.
Patrick all snuggled up. His nurse tucks him so he sleeps well.
Hi, I'm sleeping.
Brady is doing the same too. He was on his belly tonight, and sleeping really well. He likes to be spoken to. As soon as I start to talk to him he wakes up and looks for me. I love to talk to him, but feel bad because he tries to lift his head and look for me. Then his monitors go off sometimes. I get him in trouble. Now when I talk to him, I am very quiet so he doesn't get super excited. They tried to wean him down on his o2 last night, and he didn't really like it, so they turned it back up. He just isn't ready for that yet. The doctor said that she does hear his heart murmur again. I am not a fan of that. She said she is going to watch it and see how it does. She didn't seem super concerned about it. He can only have one more dose of the Indocin. After that, surgery might be the nest step. Not a fan of that either. They can only give three doses of the Medicine. It is harsh on the kidneys and liver, so they don't like to give it. We will see how that turns out later when the echo doctor looks at him again.
Sleeping before mommy woke him up.
All tucked in tight
They were going to to an ultrasound today, but it didn't get ordered. They will do it tomorrow, and hopefully the brain bleeds will be better. So this weeks prayers...No brain bleeds, no heart surgery, and no infection/surgery on any one's stomach. Think positive, they will get better!
Good night!
Em and Craig
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