I love this picture. He looks like he's going scuba diving. He hated the CPAP but he was happy to be held!Sorry it's been awhile since I last updated. Johnny got pneumonia last week and had to be put on the CPAP (it blows air and helped him breathe). I'm SO glad we avoided the ventilator and having him intubated! He has a couple more days of antibiotics but he is doing really well. He's now only on 28% oxygen which is way better than the 100% he was on. This sickness wasn't as bad as the last one but it was still lame. I just want him to be healthy. Part of the reason he keeps getting sick is that his heart defect shunts extra blood to his lungs which makes it easy for fluid to get in his lungs. Cardiology refuses to do his surgery soon because he's still small (7 lbs. 7 oz.!) even though every other doctor thinks he needs it done. The main signs that means he needs surgery are respiratory problems (check!) and problems growing (he does ok but he's slow down lately). It's SO FRUSTRATING! I have never had a more frustrating experience. I just want SOMETHING "fixed"! Oh well. We have his next swallow test on Thurs. morning so we can recheck how his vocal chord/swelling/aspiration is coming along. I hope and pray that he will pass and we can get him off his NJ tube. He's outgrown his glasses and will get a bigger size on Thursday! Also, I think we're going to have him wear a helmet. It's for "vain" purposes. His head is getting little flat and funky and we don't want him to have a weird-shaped head for the rest of his life. It's lame that there will be another stinkin' contraption to deal with but I think it will pay off in the end. Might as well do it now while he won't remember! :) And if anyone needs any advice on childhood issues/doctors/specialists/etc. let me know. Pretty sure we've done/will do about everything Primary Childrens has to offer! :) How did we get into this mess?!? Anyway, I think that's everything. Thanks for the prayers and outpouring of love for our little family during this difficult time!
5 comments:
I put his name and yours and KJ on the prayer roll yesterday in the SL temple. Macie I keep Praying for you and your little family. Much to be learned through all this. Hard I know. But God loves you and is in charge. Keep the faith. Love you!!
What a cutie! I love the picture!
He is getting so chubby...love it!!! So my friend's kid had a helmet for awhile, and now she paints and sells them. She paints the cutest little designs on them, you should totally have someone (or you) paint it with some fun little design. Just picturing a cute helmet with his glasses makes me want to die from all the cuteness!
He's seriously so cute. I look forward to your updates and am glad this was a positive one! Keep up the good work, Johnny!
I'm so sorry you guys are still in the hospital. Our longest stay was only eight days and it was the most exhausting thing I've ever done. I don't know how you're doing it. We'll be praying that he gets to come home soon. Oh, and make sure your insurance covers those helmets. If we didn't have insurance we would have had to pay $20,000 for ours.
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