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.

The Culprit

I'm so sorry it took me so long to give you all an update, but today has been a crazy day! Dave got home at about 4 this morning. It appears that Lily was dehydrated. After a Miralax regimen and a day at the pool (at camp) plus the vomiting that she normally does, it seems that Lily just didn't get enough liquid in. They drew blood and also did a chest x-ray, and everything was fine.

While it was all quite upsetting, perhaps God does work in mysterious ways. This morning, Lily's lips looked a little dry, so I thought I'd try to give her some water through a straw. She took some of it! Yes, Lily, who fights to keep things away from her mouth, allowed a straw, of all things, at her mouth. She even wrapped her lips around it as if in an effort to suck the water out! (That would be fantastic if we could get her to take some of her liquids through a straw!) We did send her to camp, and they gave her about an ounce of water through a syringe! Again, the fact that she allowed this is amazing! And she worked hard for her therapy. Dave took her to the doctor this afternoon, and her temp was up and she was her usual, happy self!

Thank you, thank you, thank you for the thoughts and prayers and concerns! It is so touching to know that so many people care for Lily.

ER again tonight

Dave is taking Lily to the ER. She had a temp of 95.1 about two hours ago. She's been quite lethargic since she napped this afternoon and just does not want to wake up. She's not uncomfortable acting, just doesn't want to stay awake. Please say a prayer for our sweet little girl.

And by the way, I never said thank you for the prayers from earlier this week. Thank you. We appreciate every word said on Lily's behalf.

Updates and Reaching Out

We had the GI appointment, and still, no answers. Lily's feeling a whole lot better, though, and her fever is gone. After her appointment, Lily had another abdominal ultrasound and then an abdominal x-ray. Then she had some labwork done.

So it's not the gall stones. The sludge is still there, but there was no evidence of inflammation. There also was no evidence of an obstruction. There was, however, evidence of constipation. And that could actually cause the vomiting if it puts pressure on Lily's stomach. Then there's the issue of possible reflux. Apparently, reflux can cause this sinus stuff that we've been dealing with for far too long. (The only reason reflux never crossed my mind was because Lily never acts like she's in pain.)

The Rx? More medicine than I think I know what to do with for the next two weeks. If this doesn't clear up, then the doctor is going to order a scan that lets them see if her stomach is emptying in a timely manner. So, for the next two weeks, we are to give her Zantac for the reflux and some other antacid type medicine, Miralax for the constipation (beginning with a high dose for the next few days to basically clean her out and then lowering it to an easier amount), and an enema to speed the cleaning out along.

What's interesting is that I've been wondering all along if Lily's vomiting had anything to do with allergies, since it began after we moved here (adding carpet and an indoor dog with the move). But after hearing the doctor today and thinking about what all has happened in the past year, it dawned on me that maybe. . .hopefully. . .Lily's vomiting has been related to constipation. Before we moved here, Lily was nursed, and we had no trouble with constipation. Right after we moved, she got her g-tube and was put on formula. Her stools changed. If only this were the answer! (But how horrible to have taken so long to figure it out. Poor Lily!) We'll see what the next few weeks bring.

Last night, I received an email from Connie, Mallorie's mom (see Our Little Teapot under Angel Friends in the right bar) asking me to help with reaching out to a mother who just adopted two special needs children from Eastern Europe (remember my post about Shaun from Reese's Rainbow?).

Actually, I'm getting ahead of myself because when I went to this mother's blog http://wronginalltherightways-travcat.blogspot.com/, the first thing I saw was this quote and I'm still getting chills from reading it: I'd like to ask God why He lets poverty and injustice exist, why there are so many orphans and why He does nothing about it, but I am afraid He would ask me the same question.

I honestly froze! I don't know if she wrote this, but this thought, that God might just ask me why I let poverty and injustice and orphans exist blows my mind. How ashamed I would be! How ashamed I am.

So immediately, I was hooked. And Connie's plea to help her reach out causes me now to share this with you.

For time's sake (and it must be short because I'm terribly tired), I'll just share this blog that gives a brief explanation of the need:
http://covenantbuilders.blogspot.com/2011/06/family-in-need.html

And this blog, written by someone else who has gone through a similar experience, gives more specifics. This mother is spearheading the movement to help Catherine. http://carringtonscourage.blogspot.com/

If you get a chance, take a look at these blogs. They are heartbreaking. They are compelling. They dare me to move.

No Camp Again

Strangely, we were hoping that Lily had a UTI, but the results came back today, and no UTI. I know that sounds good, but that also means what is it?! She's vomiting, running a low grade fever, having trouble getting comfortable, and occasionally, making a moaning/whining sound. Last night, when I went to her room to feed her, she had vomited in bed a greenish colored something that looked like it had strings of blood in it. Then, as I was feeding her in bed, she vomited. I got her out of bed and rocked her in the chair, and she just made that moaning/whining sound and tossed and turned. We tried feeding her again, and she vomited again. Dave went and got some Pedialyte but only gave her about 2 ounces. Luckily, she kept that down. A few hours later, he gave her another ounce, which she kept down.

Needless to say, we decided to keep her home from camp again today.

We've been slowing down the feeds and feeding less each time. I started out with 3 ounces this morning and gave her two more a few hours later. Again, she kept that down, but when Dave fed her, she vomited. I know she's lost a little weight; she just feels so. . .small. But her demeanor was a whole lot better today. It's so frustrating to not know what's going on.

Perhaps we should have taken her to the doctor today, but she has an appointment with a new doctor, the GI, tomorrow. We were mainly to talk about the gall stones she has, but I think I'm going to move the conversation quickly over to her vomiting, especially this new episode of it.

It worries me a little, fearing that maybe Lily might be going through what her friend, Rebekah, went through. (You can read her story if you look in the right side panel at Rebekah Faith--Redefining "Incompatible with Life"--June 2, 2011.) What if we're dealing with an obstruction of some sort? I don't want to over-diagnose her (like I have the knowledge to diagnose her anyway), but I also don't want to miss out on some type of hidden opportunity.

She's sleeping soundly right now. She seems fine when she sleeps, but the little thing didn't have much of a nap today. She's probably exhausted.

We'll see what tomorrow brings. It's very hard to get in to see this GI, so luckily, the appointment came at just the right time. But if you don't mind, would you please give a quick prayer for Lily?

Camp--Days Four and Five

On Thursday, the day we went to the climbing wall, Lily learned about pets. She read the book Clifford the Big Red Dog and painted red dogs. She got 15 individual standing minutes, with her counselor holding her, and 25 minutes in her stander. She made dog treats. She also had music therapy. She read a book called Cat's Colors and made a cat mask.

On Friday, the theme was Frogs and Turtles. Lily got to go swimming in the mini pool that they have at the camp. She had stander and standing minutes and made a jello snack with Swedish fish. She got to look at the K9 Care Unit from afar (since she's allergic to dogs) and got to jump around like a frog on the trampoline and read the book Jump, Frog, Jump. Again, Lily tried applesauce, but didn't really eat any. And the special treat for this day was that a pony visited the camp, and Lily got to pet it.

Lily ran a fever and didn't act like she felt well on Sunday. Dave took her to the emergency room, but they couldn't find anything wrong with her. They suspect a UTI, but Lily is so hard to cath that they tried bagging her, but didn't want Dave to have to stay there until she filled the bag, so they sent him home with bagging supplies and told him for us to bag her in the morning and send the specimen to the doctor. Needless to say, Lily didn't go to camp today--just in case the fever was virus related. Plus, she's just acting like she doesn't feel well. I don't think she would have had a good day at camp.

This week, the theme is holidays. Lily missed Easter-related activities today, but if we send her tomorrow, she'll be doing Valentine's Day-related activities. Hopefully, she'll feel better.

The Climbing Wall

Today I was. . .blessed. . .to be given the opportunity to witness one of the most phenomenal sites I've ever seen. Unfortunately, it did not involve Lily--she's too young--but that's ok. She'll have her chance soon enough.

Twenty-one students from Lily's camp went to the James Island County Park climbing wall today. Since Dave knows how to belay, he offered to go and help. Gabriel, Soleil, and I tagged along.

I tell you. . .to watch these special needs children with their climbing wall gear get lifted up at least 30 feet in the air was incredible. To hear the cheers of the counselors when each child "made it to the top" was inspiring. Every time I watched a child "scale" that wall, my eyes watered and I choked back a lump in my throat. What an emotionally charged time I had!

Even talking about it to Lily's counselor brought that same water and lump back.

I now have such a profound amount of respect for the climbing wall staff for saying yes in the first place, but for also treating these special needs children with such loving dignity. But a deeper amount goes out to these kids for their willingness to get out there, try something new, and reach new heights.