Friday, July 29, 2011

Bi-pap Blues & Other Goings On

Gosh, it's been a whirlwind of a month! Lily finished camp, we prepared for moving, I got sick, we moved, and now we're trying to get the house settled. Dave and Gabriel have started school, and I've been spoiled because Dave's parents are here helping. Sadly, they leave on Sunday.

I feel as if we've dealt with more with Lily this past month than we have her whole little two years. First, she had the unsuccessful sleep study where they decided to put her on oxygen. It made her so sad to put it on, and the tube kept falling out in the middle of the night when she turned on her side. By that time, Lily had another sleep study where they decided she needs to be on Bi-pap, so I decided to do without the oxygen for a few nights. A few nights turned into a few weeks due to paperwork. Apparently, the FDA doesn't approve Bi-pap for children as young as Lily, so extra paperwork had to be done. But one paper was looked over, so we had to wait for it to be completed and filed. On Thursday, we got the Bi-pap.

My grand dreams of Lily doing so well once more oxygen entered her little body while she sleeps have been crushed. Lily HATES the Bi-pap. It's bad! To the point where she makes herself vomit, she gets so upset. Then, the other morning, I got her out of bed to put her in her feeding chair and she stayed asleep. So I put the mask without the cap against her face. She immediately woke up and got extremely agitated. Her heartrate went up to 191! I took the mask off after about five minutes. It took her another five to calm down after I took the mask off. Then she vomited her feed. That was it for me. So now we're playing another waiting game for the doctor to call and see if he'll lower her flow rate to the lowest possible setting so we can increase it in baby steps. We're also looking for a mask that will fit her better. This mask touches her top lip and pulls it up against her teeth. The company is ordering a MiniMe, but they're saying it's bigger than the one she has. May, Vera's mom, recommended a different mask, and it looked like a good fit, but this company doesn't ship to the US.

In between all of that, Lily has been cutting teeth and had a bad diaper rash to accompany it. It's from the rash that she learned she can make herself so upset, she'll vomit. Little devil! She's been running a low grade fever since the beginning of this week, but it spiked to 102 last night. All along, I was thinking teeth, but I took her to the doctor today because of the spike, and it looks as if Lily has a UTI.

We had a pretty good time during camp with a whole lot less vomiting (even though her counselor, Lisa, had to deal with more blowouts), then we moved, and Lily started vomiting again. We're hoping it's because of the UTI. When you have a child on medicine to try to keep her from vomiting, and then she vomits, you wonder why you even bother with the medicine. Especially when you're waking up at 6:30 in the morning to give it to her. But yesterday was a vomit-free day, and today was looking good until the doctor made Lily gag on the tongue depressor. Lily's third feed was fine, and she's got one more to go. I'm really hoping for the best.

Something did dawn on me today, though, while at the doctor. They brought in a throw-up bowl when Lily was vomiting. My first thought was Why am I ruining my towels? All I need is one of these things. Maybe I'll pick up one from the store tomorrow. What took me so long to think of that one?

I've been horrible not posting, especially since I have some really cute camp pictures to share. But my goal when we moved was to not have any boxes in the house. So I didn't totally reach my goal, but I didn't do that bad of a job. Unfortunately, I'm a prioritizer, so when getting everything unpacked is one of my main priorities, it's hard to allow myself to stop and post. But I do have some really cute camp pictures to share. I'll get to it soon, I promise.

In the meantime, if you have any ideas how to get my little girl used to this Bi-pap machine, I'm listening. I can't make myself put it on her right now because I'm afraid if I leave the room she'll vomit with it on. In my mind, that risk outweighs Lily's need for oxygen.


  1. From our experience, the right mask will make a difference to acceptance of biPAP. does her mask have to cover her nose or both nose and mouth?

    If just nose, the maskmedic is your best bet.

    I could ship one to you, it may be costly though. But our hospitals here use it as standard for pediatric bipap cases.

  2. What setting is Lily on?

    Vera is on 13/7. If we up it to 14/8, she just can't sleep cos the pressure is too much. So finding the optimum tolerable setting is key as well.

  3. Vera thought we were trying to suffocate her with the mask, that's why she struggled against it. It does take a while for them to realise it actually helps them breathe. I remember Cathy telling me that it would get easier, and it's true now Vera loves her mask and would 'demand' it when she's tired.

    Persevere and don't give up trying (best on an empty stomach and when she is not tired and cranky...the day will come, and Lily will breathe better and sleep better.

  4. I'm a nanny, and I've been reading your blog for a while. I wanted to share this tip for clearing sore bottoms. I cared for a little boy who had constant diarrhea, and always a raw, bleeding bum-bum. I added one full cup of baking soda to his baby bath tub, leaned him back so his bottom was exposed to the water. His bottom went from raw and bleeding to just red in three days of two baths a day.

  5. Wow - you all have had so much going on! I'm so very sorry that Lily needs oxygen while sleeping. My Lilly does too. For at least the first month of it she would scream and cry for about an hour whenever I put the cannula on at night. (And she never cries like that!) I hated it and she did too. But slowly she got used to it and now she just gives me a really annoyed face when I put it on her. She sleeps on her side and I pin her upper arm down so she can't pull it off. But still, sometimes by morning, she's rubbed her face against the mattress until the cannula has come off. I can't imagine dealing with the bi-pap as it's bigger. I'm so sorry she's throwing up so much. Lilly has been doing that ever since her g-tube placement in May. Frustrating problems but we love these kids soooo much! We'll pray for your Lily and your trying situation.

  6. So sorry to hear about sweet Lily's problems with sleep/oxygen, etc. I regret I don't have practice advice, but I can pray to the One who is the source of all wisdom!! Glad you're getting settled into your beautiful new home. Can't wait to see Lily's camp pictures! Love and prayers, Momma Ray