Last night was a hard night (1/2/11) for me at the hospital with Jack. We got to our room on the 5th tower at Children's Hospital in Birmingham around 6pm...after being in the ER since 11am. One thing that is good to know, Jack gets taken right back because of his history and recent open heart surgery at the ER so we did not have to wait at all. He was able to stay on the nasal cannula last night, but his cough was terrible. Every time he coughed, he would react like an addict going through withdrawal. He would scream, kick his arms and kegs against the bed, and hit the crib sides. It was awful!! After a couple hours of this, I just broke down. I felt completely helpless to my own child. Was he just in pain? Did he just not want to be in another hospital? I hated that I didn't know what was going on with him. He would,however, fall back to sleep after each "fit". Sometimes it only happened once a hour and other times it happen 4 times a hour. It was just a really long night for me...and him. If he wasn't coughing and getting upset, his oximeter would go off due to low oxygen levels. I remember counting down each hour until it was morning and telling myself tomorrow will be a better day.
The morning (1/3/11) consisted of alot of tests and blood work. Every time someone walked into the room, Jack would start yelling, saying "leave me alone, please!" It was so hard. I am a medical professional and know how important each test was, but as a mother I just wanted to wrap Jack up and run out off the hospital. The cardiac echo confirmed that nothing "heart related" is going on and that it had to be lung related. The cardiologist did say that his ventricle is still pumping low-normal. (which I hate!! I want this one ventricle to last forever) but a call later from Dr. Pearce said that the ventricle looked "a little" better then it did at his check-up on the 20th of December. The cardiologist did allow his O2 levels to be as low as 85. Which was great because after he woke up he had to be moved from the nasal cannula to the mask (with 6L support) because he could not keep his O2 above 90%. With the new range at 85%, jack even went 3 hours on just room air before he had to put the nasal cannula back in with .5L support, which he is currently still on. After the results came back from the viral testing it was conformed that Jack has RSV. So, now we ride it out... He will have to stay in the hospital until he can come off the oxygen.
The poor boy laid around all morning like someone had druged him...he looked so bad. But when Brian came to take over tonight at around 7, he was out of the bed for the first time and playing with his trains and tracks.
Brian just called to give an update, and they need Jack to have more urine output. The nurse keeps telling us that Jack is cutting it really close. Please pray that he starts drinking more and has more output because I don't want any IVs. I just want to go home!!! I have had my fix with hospitals. I sat up at 4am reading posts from "heart" blogs that I follow, and I tried to gain strengthen from these amazing families that are going through so much more then we are. This path is not one that I would wish on anyone, and there are so many days that I want to throw in the towel...but God has blessed me with this little boy. And I want to make the best ot if...for however long I have him!!!
Here is a really bad picture I took of Jack laying on me in his bed tonight.