Surgery, improvement, confusion, crazy and chiropractics

Kotah had her tongue tie and lip tie fixed a few weeks ago. I went in expecting a little tiny blueish laser pointer. I was sorely mistaken. Imagine a tiny barbie sized welding iron that just burns/melts away the flesh. It was quick, no blood, no risk of infection, but definitely NOT painless. Poor Kotah! I had nightmares about it! She recovered ok and her eating improved somewhat, but more so cuz she was in pain and didn't want to eat as much as she usually did. After she felt better it was back to old patterns. The doc wanted her off her monitor as we hadn't had to stimulate her for over three weeks. A week later we had another blue cold baby episode. Back on the monitor. Last week the doctor, in as nice a way as possible, told me I was crazy. Even though this has happened at the hospital. Even though others have seen it. Because she is 20 lbs and no signs of obvious mental delay it must not be a problem. If it was really happening, she would be a failure to thrive. I was pissed to say the least. Yes, I may look like a mom who is loosing it, but its because of what we're living through. I am not making it up.
I spent hours looking things up in ty's medical dictionary. Then I went over to a friends house and got some ideas from online. I called a chiropractor. I wasn't even sure if they would take our insurance but I didn't care. Finances can be so important and they are. We stayed up late last night trying to figure things out. But when it comes to your child, no expense is too great.
The chiropractor was will to work with insurance. We got in that day. She knew what I was talking about! She deals specifically with infants and children. It is called near-miss SIDS and it happens when there is pressure on the brain stem from vertebra being off line. She warned that as she worked on Kotah, there may be more episodes at first. Yesterday was no exception. It was a bad one. I was scared. But the thing that is just a little worse than reviving my child is knowing that if I had called 911, we would be in the hospital with nothing being fixed. So the chiro called a friend who works with these specific cases. One where, after finding nothing wrong with the baby, the hospital sent the parents home with the instructions to shake the baby when it stopped breathing. That was the only thing they could find. I almost cried. Those parents need a hug! They sound just like us! So we are headed to Draper for the next few days to have her taken care of.
I hope this works. Yesterday the sleep specialist called and said it was her understanding that this was an ent issue. The ent has washed his hands of it, the GI clinic also. I need to find new doctors! Something is wrong with my child, but the only one who seems to believe me is a chiropractor (for which I am entirely grateful for) but yeah, try to explain that at the hospital.... I will be called crazy a thousand times if it means finding what will help Kotah. This is becoming so hard. I am quicker to loose my positive attitude each time. But the blessings and miracles still abound.

Third time around

We are in the hospital again. This time was just for a 24 hour PH probe study. The two nights prior Kotah didn't have any apnea spells. But she was right back on track last night. After about the 8th time the monitor went off, as the nurse and I sat there watching her waiting for her to self correct or change colors, the nurse turned to me and asked "do you seriously do this every night?" Honestly though, I think I got more sleep here than at home. Something about having a whole staff full of eyes and ears that are also watching out for her.
We are still waiting for medicaid to come through to get her tongue tie and lip tie fixed. (and hopefully help out with all the other expenses as well) So far our insurance has saved us over 25 grand, but its the amount they didn't cover that is a little stressful.
This time around we were a bit more prepared and I think we have avoided any emotional breakdowns with Katie. And we were well versed on all the support the hospital has to offer, so we've kept well feed and entertained.
We get to leave here in 2 hours and head home to continue life as we know it. Our normal for now. The results of the test will be in in 5 days and we will go from there. I have to count my blessings. I have met two families today that have been here over a month. One waiting for a heart for their baby and one waiting for a son to be recovered from a car accident. But with both these are their only children. I can't imagine what I'd do with Katie if we had to stay that long. Even though they still haven't figured out what is wrong, I am grateful Kotah is healthy enough to stay home most of the time. We'll just keep enjoying and be thankful for each moment.