The Results (Sort Of)

We finally got the call for the doctor's office about Lizzie's sleep study results. The doctor has cancelled her decanulation (trach removal) procedure set for next month. We are all very bummed because we want the trach gone for so many reasons, but on the other hand, we understand that Lizzie needs to be safe while she is sleeping. They found that when she sleeps with her trach capped off, there is some obstructive apnea occurring. This is where the "sort of" part comes into play. Obstructive apnea can have several source, like enlarged adnoids or tonsils, or the tongue falling back too far in the mouth to block the air passage. The source of her obstruction is unknown at this point. It may be related to her partial vocal chord parallesis. It will take more time and tests and procedures to determine exactly what is happening there. And, the main point is that the doctor did not feel that she was safe enough to remove her trach.

I spoke only to the nurse whose job it was to report their findings and conclusions to me and had very few answers to all of my questions. They set us up with an appointment on the 18th of August to see the doctor, and I plan to come ready to ask a lot of questions. My fear is that the appointment to remove Lizzie's trach was cancelled pre-maturely. I sure hope the doctor did not forget that Lizzie already sleeps with bi-pap at night which can be a solution for obstructive sleep apnea. I guess we will find out soon enough.

Go-Go

This is footage we took during Lizzie's family party for her second birthday at the end of June. It was one of her first times to roll around the house after our wood floors were put in about week and a half before her birthday. We call her wheeled stander her go-go, and she has gotten very good in it. Thanks to the wood flooring, Lizzie is able to wheel herself around the whole house as she pleases. The other day I caught her rummaging around our silverware drawer while standing in her go-go. She was licking each spoon and putting it back in the drawer!

Sometimes It's Good To Read The Paperwork

Every time we go for an appointment or procedure with Lizzie we are handed a stack of paperwork. Mostly they are patient's rights and privacy policies which end up in my "to be filed" pile on my desk without a second glance. However, for some reason this time David decided to look through all the paperwork from the sleep study. He knows I have been really feeling impatient about not hearing any news from the doctor about the study results, and I've been threatening to call in myself instead of waiting for the call as we were instructed to do. So, David found an interesting page in the packet of paperwork which he very sweetly placed on my side of the bed. It is a letter from the sleep study clinic that said we would receive a call about the results about 14 days after our appointment. 14 DAYS?! AHH! We have a ways to go yet. I'm trying my best to hang in there. So much is riding on the results of this study.

But, for today I'm off to Scottish Rite for a full day of appointments. We are going to start the wheelchair process. Maybe I should make sure I read all the paperwork today.

Waiting For Results

This past Thursday afternoon the sleep study clinic called me and said that someone else had cancelled their overnight study for Friday, and we could take that slot if we wanted it. Although it was really short notice, I jumped at the opportunity. If we have to potentially squeeze in two studies before the 15th of September, I figured we'd better get started. We were on the waiting list with the clinic because they were already booked until October when the doctor set the dates for everything.

So, Friday night David and I packed our hiking day packs with travel blankets and pillows, a change of comfortable warm clothes including wool socks and Keens and Dave's computer with a bunch of movies to watch. We looked like we were ready to go camping! Our nurse Deborah teased that maybe we should take our fire starting kit and a rug to send her smoke signal messages. But, we really did need all this stuff and were very grateful to have it and use in a new context. Parents can sleep in the same room as the child being tested, but I was concerned that Lizzie would not sleep well with us in the room with her because she has her own room at home, and I wanted to make sure that the study went well. So, while Lizzie slept, David and I "camped out" all night in the waiting room. It worked out well.

During the study, two things were done. First of all, after hooking Lizzie up to all these wires and bands all over her whole body but mostly her head, they had Lizzie sleep with her trach completely closed off for about three hours. Then, they took the cap off her trach and had her sleep with it open. I'm not too sure for the reason behind this part of the study. Maybe they needed data points to compare. Anyway, the tech said that Lizzie slept well, and they were able to get some really good information. However, only the doctor is legally allowed to interpret the results.

So, I am sitting here on Monday morning waiting for a call from the doctor that I am not certain will come today. I will keep you posted on the results as I hear them.

Pray For Non-Healing

I know I have not blogged in like, well, forever almost. I made a personal determination not to blog again until I cleared off all the old picture files I have on my computer that are really slowing it down. Well, between a family death, two birthday parties, a minor surgery, and four trips this summer, it just hasn’t happened. So, my new determination is to not post new pictures to my blog until I clear off the old ones. That will happen soon, I hope. : )

So here’s what’s the most recent thing going on with Lizzie. The ENT doctor would like to de-canulate Lizzie. In laymen’s terms, take her trach out permanently. WOO-HOO! HOWEVER, several things will have to fall into place before this could potentially happen on September 21st, or we will have to wait a full year to start the process over again. (They will not de-canulate during cold and flu season.) Number one, we have to find out if she still needs to sleep at night with a bi-pap machine for a form of sleep apnea. Number two, if she still needs it, can she tolerate a bi-pap facemask. She currently sleeps with the bi-pap connected directly to her trach, no mask needed. This means we will need one if not two overnight sleep studies to determine all this. I loath sleep studies. We’ve had several the past two years, and they are nothing short of torture for child and parent. A necessary evil I guess.

If it is determined she still needs bi-pap, the trick is how to get her used to a mask between now and the 21st of September. Bi-pap masks suction hard to your face in order to function properly, and to ask a two-year-old to suddenly accept that is near impossible. I don’t think we could just one night suddenly strap in on her head and expect her to be all right, but on the other hand, if we show it to her and play with it too much ahead of time and she doesn’t like it, she may see it coming and never learn to tolerate it. And, we can’t practice a few hours at night and take it off and switch back to the tube connected to her trach, that might confuse a sleeping brain and potentially cause her to stop breathing altogether. AHHH! Please pray for wisdom and insight for our good but very big dilemma.

Now here’s the other part. If we are able to get the trach out, we will go overnight to the hospital for the big event. The doctor will place a special bandage over the whole in her neck and will give it three months to heal up on its own. If it heals on it’s own during that time it will leave an ugly scar on her throat, and Medicaid, Lizzie’s secondary insurance, will not pay for plastic surgery to make it look pretty. If the hole does not heal on its own at the end of the three months, the doctor will do a surgery to close it, and while he’s at it, he can make it look pretty. Go figure. So, for this reason among everything else, we are praying for non-healing. : )

Baby Steps

These are Lizzie's feet. No, she is not pointing her toes on purpose. Her right foot is somewhat clubbed, and the muscles around that ankle are atrophied. Next Wednesday, April 8th, she will have a minor surgery to hopefully correct the problem. The doctor will make an incision on the really tight tendon on the back, and skillfully cut the tendon in such a way that it will allow her foot to move into a neutral position. The doctors will then make a mold of both of her legs to use for making her first set of leg braces, and then put a cast on her right leg while it heals. I think the doctor said that she will be in the cast for about 3 months. (This is not her first time to wear a cast. Check the posts from last summer.)

One interesting thing about this surgery, is that Lizzie will be completely awake the entire time. Because she does not have any feeling in her lower legs or feet, the doctors will not knock her out. They will, however, give her a local anesthetic just to be on the safe side. I will not be allowed in the room while they are doing all of this, so Ms Deborah, our favorite nurse, is going to come on her day off to be with Lizzie in the OR. This is a huge relief to me. I know that Lizzie will freak out in a room full of strangers holding her down. Ms Deborah's presence will be a huge help.

I am not too sure how I feel about all of this. I am in tears just writing about it, and I don't know why. She has had seven previous surgeries, and they were all more serious than this one. She has had one surgery on her spine, four in or around her brain, one to put in her feeding tube, and one tracheotomy. I think i just hate the thought of any surgery for my baby girl. I think also that I am so used to seeing her foot like it is now, and I am mourning the change even though it is a good one. We have a terrible time getting shoes to stay on so I mostly put her in socks that look like mary jane shoes or ballerina slippers. This surgery will ultimately provide Lizzie with more independence and normalcy. Maybe it is because soon she will be able to practice standing up which means she is growing up. Lizzie is my baby that has stayed a baby in my heart for a long time because she can't walk. (Her mental development is on target the most part.) We carry her or stroll her everywhere like a baby even though she is almost 2. I am so grateful that David will be taking the day off to be at the hospital with us. Ms. Deborah will be there for Lizzie, and David will be there for me. He is my rock.

Please be praying that all goes well.

Jesus and Hot Dogs

I've already shared this story with a few of my friends. I thought that I'd post it to my blog because everytime I think about it, it makes me smile.
The other day David took Becca on a little Daddy daughter date to McDonalds. She was so excited that it was her turn to go on a date with Daddy instead of Mommy. Anyway, on the way there David told Becca what a beautiful girl she is and that he loved her very much. Becca quickly replied with, "I love you too, Daddy." (Aww!) Then David asked Becca if she loved Jesus. With out thinking twice Becca said, "I love Jesus and hot dogs!"
Hope that made you smile!