Tuesday, May 11, 2010

Once again... :/

We are back up at Children's again. Noah is not doing so great. His respiratory virus is way worse this week. The antibiotics he was on did not doing anything to help him. He does not have pneumonia, thank God, but his cough is really raspy and congested. His breathing is labored at times and he struggles a little. When he is sleeping he breathes better and is more comfortable, but when he is awake he moans and has quite a bit of discomfort. He is still showing signs of hunger and thirst which is great, we just need him to get over the vomiting. We are giving him pedialyte when he "asks" for a bottle and he drinks it right up! So far, so good... I think when he "asks" for his next bottle, we can try half strength formula. He is currently getting maintenance fluids through his IV.

This morning during rounds, Noah had just got done with a breathing treatment (done by a therapist I was not happy with) He was breathing really heavy and was limp and pale. The doctor on this week, took a look at him and said that if his breathing did not improve in an hour, he would need to be intubated. But as soon as I got him to relax and calm down, he was breathing better. They also took viral swabs and cultures, which means we are in isolation. They put him on helium to help dilate his airways... he sounds like a little itty bitty baby... or a baby chipmunk :) it is cute!

**update-- about 3 hours after I started writing this** ... Bad news is: one of the viral swabs came back positive for parafluenza so we will remain in isolation. Good news is: we now know the source of his sickness and can wait it out in the hospital and help keep him fluid balanced.

Pulomnology came by earlier today to talk to me about his airways. This was before the viral swab came back positive... The pulmonologist was concerned that the sutures that are lifting his trachea and PA's from the pexy surgery in January, have broken away from all the coughing and retching he has been doing this past week. They were planing on doing a fluoroscopy (which is a series of chest x-rays) to determine if his trachea is floppy. If it is, they will most likely do a scope down his throat to look at his airways. If they come to a conclusion that his sutures have in fact broke apart, then they will discuss with Dr Mitchell (his heart/airway surgeon) whether or not to re-do the pexy surgery. It is a strange feeling that she would be concerned about that because just last week I kept getting the feeling that some of the sutures did break! But because she told me this before the viral swab came back positive, I don't know if they will be doing the fluoroscopy anyway.

I am exhausted.

I feel like there is more information I forgot to mention... but I can not think right now. Just please pray for Noah and I, and Aaron too. Thank you so much!

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Welcome to Noah's blog! We thank you for following us on our God-led journey and thank you for all your thoughts and prayers! Noah was born June 22, 2009 with many anatomical birth defects and underwent his first major surgery when he was just 4 days old. He has been in and out of the hospital since day one and has had a total of 4 major surgeries to date, with his latest one being the most extreme and difficult - his first open heart surgery on November 4 and December 17th, 2010. He is a warrior and this is his journey...

He is getting so BIG!!!!

He is getting so BIG!!!!
Getting a short break from his O2 :)

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Dec. 6, 2010

Dec. 6, 2010
I got to hold Noah!!

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