The question I get asked most often is, "What does Johnny have to do to come home?" Well, here it is for everyone to see. He has to do these 4 things in order to come home:
1. Breathe on his own for at least 7 days. (which has done since birth)
2. Keep his temperature in a crib. (which is is doing now)
3. Eat on his own and consistently gain weight while eating on his own. (he is gaining weight but he isn't eating on his own at the moment, he has a NJ feeding tube)
4. KJ and I have to learn baby CPR. (which we will do has it gets closer to discharge time)
So, there it is. He doesn't have to get to a certain weight. They would have sent him home at 3 lbs. if he was doing all the stuff above. The thing keeping him in the hospital now is feedings. After doing a swallow study (take x-ray pictures while he bottle feeds) we found that he is aspirating (inhaling) milk into his lungs when he eats by mouth. He also has moderate reflux. So, at the moment he is not getting any food by mouth, only through a feeding tube that passes his stomach and goes into his small intestines (NJ tube). We have to wait for 4 weeks until they do another swallow study and see if it improves. The problem was most likely caused by intubation during his last eye surgery (stupid intubator!!). So, we wait and pray that his muscles and vocal chords will heal by April 8th so he can protect his airway and come home! There is a chance that he will be sent home on a feeding tube but I really, really, really don't want to have to do that. Pray we survive these next few weeks. I'm getting EXTREMELY sick of having a child in the hospital. I hope and pray that no one ever has to go through this same (or similar) experience!
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5 comments:
You are so strong Macie and you have the best attitude. We will continue praying for your cute family.
oh macie my heart goes out to you! that has to be so hard :( we are praying for you guys and little johnny. i wish i was there to help out! let me know if you need anything from az! love you lots.
ps- phyllis, we have a landing :)
I just came across your blog the other day and I have been thinking about you ever since. I have been praying for you guys and I am hoping that you get to take your little guy home soon and that things keep progressing the way they have been. He is so cute and so precious.
I'm so glad to hear that little Johnny is making such good progress! I'm so sorry that you and your family have had to go through this. My heart goes out to you guys!
I found your blog on one of my friends blogs. President Stratton is our stake president and he was giving a talk and telling little Johnnys story...and I was praying for Johny immediately. My heat goes out to you guys & I will be praying for Johnny & your family. Our 2year old will be having brain surgery soon, so I know how scary and overwhelming the future might feel, but with the Lords help it becomes bearable. I will be checking on your blog everyday to see how Johnny is doing.
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