Like the previous post said, Alyson turned 3 in September. Even though I promised myself I would never make a cake again after Olivia's cake last year, I attempted Alyson's cake because no bakery had the kind of cake she wanted. She wanted a "Wow Wow Wubbzy" cake and I found a template online with how to make it. Considering I was rushing to finish it before her birthday dinner, it turned out pretty well I think!
The day after Alyson's birthday, we went to the IHH Heart Walk! What an awesome way to help celebrate Alyson's 3rd birthday! We missed our heart friends that weren't able to make it! After the walk was over, we went to Hogle Zoo with the girls and then later met up with my brothers family to go out to eat for Ty's birthday! It was such a busy day!
Since Alyson had her appointment the following Monday from the walk, we decided to make a weekend out of it and just stayed down there. My sweet friend Tammy offered for us to stay with her on Saturday night which we took full advantage of! We had an awesome time visiting with her and her family! Her son Matthew has HLHS (Hypoplastic Left Heart Syndrome).
Alyson and Matthew
On Sunday we checked into a hotel so we could be close to PCMC for her appointment the next morning. Alyson was so excited to be staying the night at the hotel! She kept chanting in the back seat "we're going to the hotel....we're going to the hotel!" Frank was holding Alyson and put her down and asked her if she wanted to walk. She said "No! I want to ruuuuunnnnn!" She took off running really fast down the hall to our room. I ran to catch up to her and all of a sudden she stopped dead in her tracks with lips purple as can be. I thought she was going to fall over and pass out so I gave her a drink of water and made her stand still for a minute. She was panting heavy and it made me even more worried for her appointment the next day. We decided to go for a little swim before we went to bed that night and Alyson got excited over that too! Running down the hall she chanted "we're going swimming.....we're going swimming!" I know she loves Olivia but I think she really loved the one-on-one time with Mom and Dad she was getting!
The next morning I woke up at 6am to give her the morning medicines so they were in her system long enough before they had to sedate her for her echo. We were told to not give her Enalapril because it lowers blood pressure and when they sedate her it would lower even further. So I held off on that medication to give to her when we left the hospital.
Leading up to this appointment I was expecting Alyson's Fontan surgery to be this fall. If was just ingrained in my head that once she was 3 and around 30 pounds, they would want to do surgery. And since her oxygen levels were starting to be in the high 70's low 80's I was thinking it was time that it needed to be done. Anxiety started to set in little bit (okay that's a lie.....a lot!). I had to remove myself from the IHH page on FaceBook because I was getting stressed out seeing other sweet little heart kids having a hard time....not the kind of stuff I wanted to be reading about before Alyson's surgery. My heart and prayers went out to these families struggling and I felt so sad with the trials they were going through. With Alyson not having an echo in over 2 years, I had no idea how her heart was doing. On the outside she looked awesome (except for when she exerted herself too much and turned purple) but what was going on in the inside?
We got to the hospital for Alyson's appointment and we went and got the chest x-ray done before we went to the echo room to have her sedated. The nurse was taking a long time going back and forth between Alyson's hands trying to find a vein that would work. I didn't want Alyson to keep being poked for no reason if they couldn't find a vein good enough so I told the nurse to find one in her foot to use. Once she found a vein good enough, I hugged Alyson so she wouldn't try and grab at the IV they were starting. I started to cry because Alyson was screaming and crying. I am not the kind of mom that will cry when my kids are vaccinated, but it was just another thing happening that made surgery seem all too real for me and I couldn't hold back the tears. Once the IV was in place, she was given Versed to calm her down and she was high as a kite after that! Hahaha! Frank and I were laughing at her because as I held her, she would look up at Frank and I and give us a silly grin and start laughing! It was pretty funny!!
Alyson did great during her echo despite getting restless a few times. Once that happened, the nurse gave her more medicine to knock her out a little bit more. As we were sitting there chatting it up with the nurse and echo tech (who were both very nice and just plain awesome!) I felt a little bit better with whatever we were going to find out once we got the chance to meet with Dr. P. by the time the echo was done, Alyson was awake and we were taken to the surgical recovery floor for an hour so they could watch Alyson and see how she tolerated food after coming off anesthesia. Alyson was super excited to get an orange slushie and insisted that she shared with Frank and I! :)
Alyson was just barely over 27 pounds at this appointment (a 3 pound gain since March 2011!) and before she was sedated her oxygen levels were around 79-82%. Once she was sedated, her oxygen went up to 88-90%. I have noticed at home that her lips are pinker at night when she is sleeping and they have more of a purple tinge during the day when she is awake, even if she is just sitting on the couch watching TV. Dr. P. said her heart function looked great and was okay with us not coming back until March! Her medications and dosages were kept the same.....Enalapril, Amiodarone and Aspirin. I was so relieved hearing that her heart was doing so good!!! He said that he would like her to get up to 30 pounds and then at that time we will look into doing surgery. So it might be next Spring when we will do surgery.....maybe even as late as September 2012! He was also telling me about another external sigh he looks at in patients called "clubbing". The link explains in more detail what it is but he was looking to see if Alyson's fingernails were starting to get rounded and said that they still look normal. The pictures on the link looks pretty severe but there are images under the Google search "clubbing fingernails" that looked like a normal hand but you could tell the fingernails are rounded on the tops and not flat. So yet another piece of medical information I have learned.....and for sure not the last! :)
We are so glad that Alyson is doing go good! I feel such gratitude to our Heavenly Father that helps us all get through trials in our lives and gives us strength. I was a wreck before this appointment, but by saying a few prayers I was given strength and peace that I was was given to me through Him. I am still not looking forward to this next surgery but I feel so much better about it knowing Alyson, our little warrior, is doing so good right now! It also helps to hear about successful Fontan surgeries and how great the kids did afterwards. Thank you all for your love and concern for Alyson, we appreciate it more than you'll ever know!
Alyson and Dr. P! Not the best picture but I didn't want to be a pest and keep trying to take pictures until I got one that turned out! :)
2 comments:
That's so great that she's doing so well! Hooray for no surgery until next year!
what a fantastic cake! And what a sweet little family!
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