If you’re a reader of my blog, you know my daughter was born (full-term) with a long list of health problems. One of those health problems is a very rare lung disease called NEHI (Neuro Endocrine Hyperplasia of Infancy). She was diagnosed at two weeks after she wasn’t recovering from her pneumonia and they ended up sending us home with her on oxygen 24/7. We were told she could be on it until she reached school age.
Well, my husband and I found out at our last appointment, the week before Thanksgiving that the doctor’s thought Aliceana was doing great and they wanted to run a test to determine if she needed oxygen. We didn’t tell a soul though, we knew it would be tougher for us if everyone knew and was pestering us for results. We were already nervous enough the way things were, we didn’t need help!
Super long story short, she took the test last Monday. The test was performed at home, she was hooked up to a Pulse Oximeter Monitor that had a recording device. Everytime we checked on her she was doing great, but my husband and I had no idea if her numbers dropped in the middle of the night when we weren’t looking.
Starting on Thursday I was making my husband pester both the oxygen company and the doctor to see if they had results yet. It was Friday at about 3:30 when we got the call. Aliceana was clear to be off of oxygen!
Now we just have to worry about what will happen if she were to get a cold, but her doctors aren’t as concerned about that as they originally were when she was on oxygen. She still does have a lung disease and her heart murmurs, so we will still be going to the American Family Children’s Hospital quite often, but the worst part of her disease is over!
We spent the weekend telling our families, most of them we didn’t actually tell, we just let them see Aliceana and waited to see how long it would take them to realize that you could actually see her face. It was great, a weekend full of happy tears.
It’s only been a couple days without oxygen, but it’s crazy how different and easier everyday life is now. Before when she was on oxygen she was tethered in the living room most of the day, we could take her in other rooms, but you would have to unhook one tank and hook up another, so most the time if she was fussy and we had to go to the next room, we’d have to set her down and she’d get even fussier. Just the little things are so simple now in comparison; getting her dressed, picking her up, putting her in her exersaucer without getting tangled around other furniture, no longer tripping on oxygen line all the time, the dog can get around the house easier since he doesn’t have to worry about tripping on the line, I don’t have to worry about her ripping the tape off and reapplying it 3 times within the hour, getting her in and out of the car, and even just putting a bib on her is easier.
This is definitely our Christmas miracle. We were expecting her to be on oxygen for years, this is such a blessing. I was so afraid of what would happen when she got to the age of crawling and walking. I know it wouldn’t have been easy for anyone.
Written by, Brittany, the geek behind the blog. I share lots of recipes, my thoughts on the latest tech gadgets, my favorite geeky games, and snippets of life as a Work-at-home mom.