Sunday, May 16, 2010

Todays update

These past couple of days have been really rough and scary. Noah was on the verge of needing to be intubated. They believe he is having so much trouble breathing because of the inflammation due to the para fluenza. He has been on a steroid for a couple days now and it is helping the inflammation and he is also on highflow. Two days ago, I was holding Noah and he was sleeping in my arms. Then he started to fuss a little so I was changing positions to see if he would be more comfortable. He started getting even more mad and started to retract so I set him in his crib to try to soothe him. He started thrashing around and screaming so I went out in the hall to get his nurse to see if she could help me calm him down and I turned back around and he had already started turning blue. Then a bunch of doctors come rushing in and started bagging him. His heart rate was elevated and his O2 saturation level was below 40%. VERY VERY scary! And because his IV had come out the previous day, they started trying for an IV... I think I counted 8 or 9 times and no success! So they decided to let him calm down and later send him to get a PICC line. After his PICC placement, they made him NPO (meaning he could not eat) for the rest of the night for if he needed intubation, his stomach would already be empty and would not risk aspiration. By morning, he was very hungry and fussy so the restarted his feeds. We gave him his first bottle and he chugged it! First time in a very LONG time that he has taken his whole bottle by mouth! Ever since then he has been asking for a bottle every 2 1/2 hours and has been drinking the WHOLE thing! This is amazing and I hope he keeps the momentum going! Sometimes he will still ask for more so we have started offering him an extra ounce and he finishes that too!

So... after rounds this morning, they are starting to ween him off the highflow and steroid. And as long as his breathing becomes more stable, they will not do a broncoscopy and just let this virus finish its course. Please keep praying for continued healing and that our little Noah returns to his happy spirits and health. Thank you!
Thursday, May 13, 2010

The good and the bad.

Today has been a good day and a not so good day.
Good: Noah is back on his full feeds today and for the first time.... he took all three feeds today BY MOUTH!!! I did not have to put any of it through his tube! YAY!!! AND he did this while he is still not feeling 100%! I am so proud of him!
Bad: Noah's fluoroscopy showed narrowing in his trachea. This could be inflamation due to the paraflu or it could mean that some sutures from the airway surgery he had done back in January have broken from all the hard coughing he has been doing. Their plan for him is to wait out the virus over the weekend and possibly do a broncoscopy on Monday to determin if they should re-do the surgery. I am really nervous. His breathing has gotten a little worse the past two days. Doesn't he know that his FIRST BIRTHDAY is NEXT MONTH?!?!?! He sure knows how to make me jump through hoops!
Anyway.. sorry for the short update.. I am exhausted from lack of sleep and I can't remember eveerything from today. I should start writing notes through out the day ;) lol Good Night!
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!

About Me

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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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Me and my boy :)

Dec. 6, 2010

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

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