Friday, September 3, 2010

Dear Madelyn Kate,
The last few days have been quite the whirlwind for you. Despite that, you have been just as happy and sweet as ever. You have met so many new people since Tuesday and have stolen all of their hearts. That comes as no surprise to Daddy and I. Your sweet smile and personality is magnetic!

Tuesday morning we woke up early and made our way to your first doctor's appointment with the Pulmonologist. All of your grandparents really wanted to be there with you, but we convinced them that there was no need and that we would be sure to tell you that they were thinking about you. We were the first patients of the day and we didn't have to wait at all. In fact, we were in and out in less than an hour! Dr. G was very nice and was concerned about your episode from the week before. After talking for a little while, and saying that he didn't think that it could be related to reflux, he ordered a sleep study. He has a sleep center at his Plano office so he put in a referral to set you up there and told us to go on to the GI appointment to see what Dr. A had to say.
We had a little time to kill between your appointments. You were VERY sleepy because you woke up at 4am that morning. Daddy thinks it was because it was so quiet in our hotel room. Whatever it was, you just sat awake in between us for two hours playing before you fell back asleep. Needless to say, you fell asleep pretty quickly after the first appointment. We parked under a shade tree to let you sleep. It just happened to be in a Super Target parking lot so I had to go in while Daddy watched you. Thanks for napping so long...I needed that hour walk around my favorite store.

When you woke up, we went to a mall because we still had an hour until your next appointment. It was your first time to ride one of the little rides in a mall. You loved riding Clifford!
Your appointment with the Gastrointerologist went just as well. Dr. A was SO nice and was also concerned about what happened last Wednesday. He said that most of what has happened with your breathing troubles up until that point could have been attributed to your reflux. He didn't think the last episode could (or it would be VERY rare) be attributed to reflux though so he ordered an EGD (to look at your esophagus, stomach and small intestine) just to make sure there wasn't another cause. At first we were going to be able to do both the sleep study and the EGD at the same facility that both the specialists' offices are in, but for some reason the "Sleep Institute" on site didn't feel comfortable doing yours (which still baffles us because I would assume they deal with lots of patients with apnea??) so it changed all of the plans.

Since I had reserved a hotel over a month ago (for free thanks to all of us sitting through a 3 hour presentation for a time share) for mine and Daddy's anniversary (you were going to stay with Grandma) we made arrangements to have the EGD done Thursday morning. It worked out perfectly. Grandma was already off. We already had the hotel (which happened to be around the corner from the hospital where the procedure would be done). So Wednesday afternoon we picked up Grandma and hit the road to Dallas.
You were excited about your back seat buddy.
We made it to the hotel by early evening and let you relax and have a semi normal routine. We sat you up in the office chair in our room for dinner. You looked pretty stinking cute and it worked out great!
You ate some goldfish, dried fruit, and a couple of banana cream cheese cereal bars.
After that Grandma convinced Daddy and I to go to dinner for our anniversary since it was that day. We had some yummy Mexican food at Matittos right across the street from the hospital. The back of the hospital was literally on the same street as our hotel. When we got back from dinner, you Skyped with Gigi and Papa for a little while.
After that, we called it a night so that everyone could get some rest for the next morning. We needed to be there at 7:30am so made sure to get up and ready in plenty of time. We just took you in your pajamas so you would be comfortable. Here we are before we left the hotel.
You were SO good all morning. You talked to everyone, smiled and showed off your silly face. You even told the nurse "thank you" which really sounds more like "annk ooo". Grandma worked in a GI lab for over a decade so I knew that the EGD was going to be fast and painless, but it was still hard to see you be put to sleep with the anesthesia. Dr. A, the nurses and the Anesthesiologist were all awesome though. They let us go back with you until you fell asleep.
That was definitely the worst part. You looked so out of it and so much like you did the day you were not breathing last week. From the time we went out to the waiting room until you were done and we were able to go back and see you was only about 10 minutes! The doctor came out and showed us pictures of your perfect esophagus, stomach and small intestine. They also did a biopsy that we will get results from some time next week. By the time we walked back to the recovery area you were awake and all the nurses said you woke up clapping and smiling! They had prepared us that the anesthesia usually causes children to wake up screaming mad for 20+ minutes so we were relieved that you were so happy (so were they)!!

We were able to leave after about 15 minutes. You were a little out of it, but still as happy as ever!
We went back to the hotel, ate some breakfast and went back upstairs to load everything up. We had the hotel for free for one more night but there wasn't any reason to stay another night so we were going to head home. We had been told the earliest sleep study appointment was next Tuesday night, so we just planned to come back up then. We called just to make sure there was no way to get you in that night, but they said no. Right as we were about to get on the elevator to leave (bags in tow) the phone rang. They got you in for that night!!

We went back to the room and laughed/smiled just thinking of how perfectly God had worked everything out for us. From a (free) hotel reservation made a month in advance at a hotel around the corner from Medical City Hospital, to the people at the Plano clinic feeling "uncomfortable" doing your study, to the sleep center at Medical City getting a last minute cancellation...I am not sure why I was "surprised" at His provision for us...He is good and faithful and has gone before us in all things.

We spent the rest of the day at the hotel and a quick trip for Grandma and I to Super Target while you and Daddy took a nap. When we got back from Target Grandma took you on a long walk all over the Westin and the buildings that connected to it.
She worked hard to keep you awake so that you would sleep well that night for the sleep study. We gave you a bath at the hotel before getting ready to make our way back to the hospital.
By the time we got there, you were SO tired. Daddy worked hard to keep you happy while I filled out all of the paper work. I am thinking you definitely get your silly face from him!!
Grandma bought you a new set of pajamas for your sleep study and you looked SO cute in them.
Once the technician started hooking you up to all of the leads for the sleep study I was beginning to think that there was NO way you (or I) were getting ANY sleep. You had SO many wires coming off of your head and face. It was so sad. You were so good the whole time. You didn't scream or cry at all. You did try to pull a couple off so she covered your hands with diapers. You looked like you had on little boxing mitts but surprisingly enough that didn't seem to bother you at all.
You fell asleep in my lap after a few minutes. I was in total shock. It was so terrible looking at you with all of that on, but I knew that it did not hurt you at all! If anything, it was going to help you. Seeing your head wrapped like that reminded me of the days just after you were born when you had IVs in your head and they wrapped them. Pretty soon we were both asleep.
You slept so well until about 2am when you looked down and saw your toe glowing from your pulse ox monitor. You pulled it up to your face and said "Oooh". It was so funny! After that you stirred a little off and on. We gave you a bottle at about 4am when Daddy and I switched off and he got in the bed with you. You stayed asleep until the technician woke you around 5am.

You were still so sleepy when we woke you up! You were happy as could be though and never fussed when we were peeling off all of the tape and leads. You did start clapping when we took the diapers off of your hands though!
I asked the technician if she thought it went well. You didn't really have any trouble (and your alarm had not gone off the two nights before either. Even though she said that "she couldn't tell us anything" she said that there was "definitely something going on in your REM sleep". Now we just have to wait until Dr. G gets in touch with us towards the end of next week to find out what that something is (if anything).

Once we made it back to the hotel at about 6am, we told Grandma how everything went then got in the car to head home. We made it back before 9am which was really nice because we were all worn out.

Maddie Kate, you are such a precious little person. You are so resilient. Your smiles are contagious and you handle what comes your way so much better than anyone could ever expect. Hopefully we will have some sort of answer to what is causing all of this soon.

For now, we just wait and trust that Lord has gone before us. As I was reminded the other day, none of this is a surprise to Him. You are His.

Love you sweet girl,

1 comment:

  1. Kathryn, Madelyn radiates absolute beauty and joy and happiness, even through the monitor. I pray that all is resolved quickly and easily and that Madelyn is restored to complete fullness of health today.


Thank you for the comment love! :)

Friend Counter