Photo by Becky Abernathy at Abernathy Photographics

Wednesday, January 5, 2011

I was with jack through the night and here today. He had a pretty good night. He coughed every hour which made the oxygen machine go off because he dropped below 85%, but he never woke up and he would recover when I changed his position in the bed.

This morning was a little more involved. I couldn't get him to sit still, so the machine would go off all the time. He is still coughing this morning...but they say that is just the course of the virus.

During rounds this morning the doctors said we can leave!!! Yeah, we get to go home!! We are waiting to see Dr. Pearce and get our plan for follow-ups, but that is fine with me as long as we get to leave.

Thank you to everyone for all your prayers and support. Now, a new challenge begins...keeping jack and Evie away from each other so neither one gets sick. Jack needs to heal completely so his body can fight off all of these things.

Tuesday, January 4, 2011

Brian stayed with Jack last night, so I don't have all the details. But I do know he had a pretty uneventful night except for the O2 machine going off all night because jack changed positions or the probe got pulled or the nasal cannula came out of his nose. This morning when the doctors did their rounds they said Jack to remain above 85% on no supportive oxygen for 24 hours. I am determined to see this happen so we can go home tomorrow. The problem is Jack loves to play with his trains all over the floor, which causes his levels to drop. Because of the hole left in his heart after his open heart surgery his levels are naturally going to drop when he moves, coughs, holds his breath, or anything. So, keeping his levels up is almost impossible!

So here we sit with Jack off oxygen and at 88%.

Long day

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.

Sunday, January 2, 2011

I haven't even had time to upload the pictures on the camera from Christmas to show everyone. But need to update that Jack is back in the hospital. Two days ago he started coughing...something Evie has been doing for awhile. Last night Jack ran a temperature of 102 and his oxygen dropped to 81%. Brian and I packed a bag for the ER, but talked to the cardiologist on call and we decided to wait until the morning (who wants to go to the ER at night...on a holiday weekend). So after a very restless night for everyone, Jack got up around 8. When I checked his oxygen it was down to 77%. I made another call to the cardiologist on call, who told us to come to Children's Hospital ER. And here we still are, except in a room under observation. They do not know why his O2 is so low. It took all day, one negative flu test, and an X-ray that showed a little fluid on his lungs (probably still from surgery but nothing significant) for his O2 to be 90% on a nasal cannula. Tomorrow they are going to test him for several respiratory viruses and possible an echo. I am hoping and praying that they figure out what is going on and that we get to go home tomorrow!! I am so very sick of hospitals!! I know Jack is too. I hate seeing him so miserable!!

Monday, December 20, 2010

Looking back...

I have uploaded some pictures that we took while on our adventure to Boston for Jack's open heart surgery.  It is a review of our experience.  Some of the picture show off the handy work of the skilled surgeons, so be aware.  It is amazing to look back and remember...both good and bad from our experience.  It was a trying time for our family, but we came out of it on the other side!!  I can not thank everyone so much for all the prayers and notes of encouragement!!  I truly believe that it got Brian and I through this time.  Jack is an amazing, strong, and brave little man.  He is such a trooper!!

 Jack on the plane watching Toy Story as we fly to Boston.
 Jack checking out the bathroom on the plane.
 Jack in my lap while flying on the plane.
 Jack before his heart cath.
 He was a little scared...but did great!
 We took Jack to the aquarium...he loved seeing "nemo".
 It was a great day as a family!!  (we missed Evie, though)
 The night before surgery.  

 Scar free for the last time...
 The dancing...
 In the CICU,  on Dec. 6th, right after surgery.

 Breathing tube gone!!
 Playing with woody
 Standing up for the first time, Dec. 10th

 Chest tubes gone...and playing in the play room.
 Time to go home...
 Jack with his "mended" little heart
 Ready to go
Jack loved all the stickers he got after every procedure.  It got us through each one.

It is hard to believe it has been two weeks since the surgical team took Jack from Brian and I to have open heart surgery.  It seems like yesterday, but at the same time it seems like so long ago.  Brian thinks that Jack is getting more oxygen to his brain because he is talking like a 5 year old...very complex thoughts...:) 

Thursday, December 16, 2010

We are home! Both kids are asleep in there beds...I don't know if it will last, but it is nice for now!! Brian and I ate dinner and are hanging out watching TV with just the two of us.

We have a follow-up appointment with cardiology at UAB on Monday at 1:00. I am hoping that we will get off some medicine. Jack takes lasix twice a day, blood pressure medicine once a day, potassium medicine because of the lasix twice a day, and a baby aspirin once a day.

Wednesday, December 15, 2010

Our adventure is almost over. We head home tomorrow. The plane leaves at 10am. We head to Atlanta to pick up our car and Miss Evie and then drive to Birmingham. Jack has has a pretty good day. He hates taking all of his medicine, but does it anyway. I think he just needs a normal life back...don't we all!!