A Day in the Life of Madison

Thursday, May 10, 2012

Day 3 Birmingham

We had our last appointment this afternoon. It was with pulmonary and was not until 12:45. We took advantage of the late appointment and slept in until 9:00 this morning. We all slept 12 hours last night and it felt wonderful!

The pulmonary doctor went over the sleep study and just did a check up. He was pleased with how well she did with the sleep study and the results were good too. Normally, Madison sleeps with 1 liter of oxygen. During the sleep study they turned her oxygen off completely just to see how she would tolerate. When Madison's oxygen levels dropped below 88, they turned her to 1/4 of a liter. She did not drop any on that amount however she never got in to a deep sleep. The doctor agreed that we should keep her on one liter so she will rest better. 

Madison has also started a wheeze but there is no consistency to it at all. One day she will wheeze while in her walker, the next it will be in her car seat. It is never always in the same thing and it is not everyday. He wants us to do breathing treatments for a month twice a day and if we see a difference then that will become permanent. Overall, it was a good appointment. 

It is 6:50 and all three of us are already in bed. Mom and I are both on our iPads and Madison is out. We will be getting up early in the morning to go and get the newest member of the family: Madison's new puppy which is a teacup poodle.

We are ready to get home. We have missed Shane like crazy. I hate that he can't come on these long trips with us, but I love that I have a Mama that can come with us and we enjoy all the time we get to spend together.  She is such a huge help on these trips. This was our first visit without Dad and it has been so different. He was always our comedian and kept us in stitches the entire time.

There is no way I can thank you all enough for lifting our family up in prayer this past week. We will do this all again in another 6 months. I will post again after we get the new puppy. We still haven't decided on name yet. Our picks are Charlie, Bo or Bentley. I am sure though that Madison will end up calling this dog just "puppy!"

Wednesday, May 9, 2012

Day 2 Birmingham

Today was the day we had to do a lot of walking downtown. We woke up to rain that was expected to last through lunch time. Out of all the times we have come up here, we have never had to deal with rain. Our first appointment was at 9:00 with the genetic doctor. Due to the rain, Mom dropped Madison and me off at the front of the genetics building and then waited for us to finish. This way we didn't have to park in the parking garage and walk 3 blocks.

The genetic appointment went very well. The doctor was very pleased with how healthy Madison has been able to stay and her growing vocabulary. After that we went to cardiology. This appointment always makes me nervous. The past 4 visits, we have been monitoring a minor leak in the mitral valve. Today, that leak looked better! However, the cardiologist did notice that the aortic valve is not opening properly. It is still opening well enough for the blood flow to and from the heart is not being affected. He said that it is still considered VERY mild but still something we need to watch. He also said that this is probably a sign of the disease progressing. Right after that statement he added that we might not ever see another change in the way the valve is functioning. We are praying that we won't see a change for the worse.

Our last appointment this afternoon was with the ENT. Madison had tubes put in December 2009. One of the tubes had already fallen out, but the tube in the right ear was still in there. Over the past 6 months, Madison has had a lot of drainage coming from the right ear. After he examined the ear he said that the tube needed to come out because it was infected and that was the cause of all the drainage. He tried to pull the tube out and Madison was screaming so hard, I asked them to stop. The doctor then asked if she was going to be put under anesthesia anytime soon and if so, he would pull it out then. When I told him we had no plans of such he decided to try one more time. He finally got it and it only took about a minute for him to pull it out. Madison was screaming so badly, but once it was out she stopped. The tube looked DISGUSTING!!! Hopefully now that the tube is out she won't have so much drainage and ear infections. We will have to wait and see. Tomorrow is our last appointment and that is with pulmonary. We will also get the results of the sleep study then.

Tuesday, May 8, 2012

Day 1 Birmingham

It is only Tuesday and it seems like this week has lasted forever. We left yesterday morning to come up to Birmingham.  I had pretty much packed everything Sunday night but just needed to pack the stuff we needed for Monday morning. I couldn't sleep at all Sunday night. My mind was racing thinking of things I needed to remember. Finally at 3:30 Monday morning, I woke Shane up and told him I was getting up. As soon as I snuck out of the bed, Shane moved over and snuggled with Madison. She has to be touching you while she sleeps. I turned on the baby monitor shortly there after only to hear Madison crying for Able (a.k.a me), and Shane saying, "Hold on, I'll go get Able." Well, as soon as I got in the room Madison yanked her oxygen off and started laughing. I guess it's safe to say that if I'm up, she's up!

I was actually thankful we were both up early. She had plenty of time to play in her walker and I wasn't rushed getting the last minute things packed. We left the house at 8:30 and pulled in to the hotel at 4:30. We had to get everything unloaded, eat dinner, and then check in at the hospital by 7:00.

I was very stressed about how the sleep study was going to go. We have attempted 3 in the past with only 1 going well. Our pulmonary doctor wants to do one once a year! God has a way of putting things into perspective. All the stress that I had been having and losing sleep over seemed minor when we got to the third floor of the hospital. As soon as we stepped off the elevator we saw the Critical Care waiting room. The room was packed and quiet and the look on those parents' faces said it all. My heart broke for all that were in there.  Suddenly my stress for this sleep study seemed minor.

I am thankful that the sleep study went well. Madison was such a trooper. She cried the entire time they were hooking everything up. We were able to sleep beside each other and we held hands all night. We will get the results of the study on Thursday when we meet with the pulmonary doctor. Today we met with the orthopedic and it was a good appointment. We were supposed to meet with a nutritionist at 2:00 but we we exhausted and my brain was fried. I canceled that appointment and we came to the hotel to nap. It was the best nap! Tomorrow we meet with the genetic doctor at 9:00. If she thinks we really need to see the nutritionist we will before we leave. At 10:30 we see the cardiologist and then at 3:15 we see the ENT. I will post updates tomorrow from those appointments. Thank you for all the phone calls and texts to check on us, but most of all thank you for all the prayers that you have said for our precious Madison. We love you all.

Last night before they got Madison all hooked up, we were able to FaceTime with Paul, Amy, and Aubrey.  We all enjoyed the laughs!