What a week

What a week we had in Cincinnati. So much so that I need a week to recoup. Well as I had mentioned, Sophia was going to Cincinnati to have some diagnostic testing done for the A-team. We started the week with a trip to the OR. She was being put to sleep to have all three doctors evaluate her airway. In their words, they've learned that each doctor sees differently and each knows their field particularly. Also, while under they were going to possibly dilate her nasal passage and put a camera up through her nose and into the stomach. This was to be left for 24hrs under hosptial observation. Well, once in the OR and the doctors started to look around they realized that one, the dialation would not be beneficial for Sophia because her airway in her nose had reduced so much they couldn't pass anything of the left side and the right side was tight. Big problem. Dilating simply wouldn't do. Secondly, They also deduced her tonsils and adnoid tissue was so large that on a scale of 1-4, they rated it a 5! This extra tissue as well as the nasal passage prevented the doctors from being able to pass the camera for observation. The only perk meant we didn't need to stay over night in the hospital. The down fall.. Two more surgeries. Can we ever catch a break? On the whole, the doctors felt that from trachea down her airway looked good and promising. The problem is all upper airway. The next morning we were back at it at 7am for another round of evaluations and test. This time it was a video study in which they put a small camera up Sophia's nose and down into the back of her throat. Not pleasant for most people as I'm  sure you can imagine. Sophia was a trooper to say the least. However, again this procedure was cut short due to a copious amount of secretions blocking visibility as well as the tightness of her airway made  camera angels difficult. The doctors were beyond impressed with Sophia's patience and tenacity. The only perk of these appointments being cut short was we were able to take Sophia to the aquarium. She totally deserved it. The best part was Sophia was selected to be the penguin grand Marshall! She led the penguin parade and got to go with daddy to met the penguins on her own. Totally precious! I will adore that memory forever! The next day we were back again for a couple of swallow study appts. These appts went as predicted. Still aspiration. Still no food by mouth. The next day we had the afternoon before Sophia's overnight sleep study, so treat number two- the zoo! It's sad when a week at the hospital is kinda like vacation. A little hospital, a little fun. It's needed. One would be bitter without a little laughter and fun mixed into all the medical jargon and procedures. Overall, I am still pleasantly pleased and hopeful with cinci. I think we've made the right decision in switching our care to a hospital that has a focus and speciality in Sophia's needs. We just now have to put our faith in their knowledge and decisions to help Sophia continue to grow and strive. As on now, we are in the waiting process before we schedule the next surgery. Until then, my big girl is starting preschool. I know it seems like an off time to start, but we and Sophia live by our own agenda :)

a new journey

I can't believe I haven't written in soooo long. I guess in a way that is a good thing because that means I do not have anything to report. For the past several months, we have been in a holding pattern. I talked last about Sophia possibly needing tonsil surgery and we had received mixed consults from various doctors. This left us confused and unsure as to what  next steps should be taken. With one doctor telling us no and another telling us yes and another doctor we weren't comfortable left, it left us twisted. My husband is huge on research. So he did his. He discovered that Cincinnati Children's Hospital was possibly starting a CHARGE syndrome clinic amongst also reading studies from some prestigious doctors from cincy. So we consulted one more time with our pulmonary doctor at Riley (back in October) and she confirmed that Cincinnati Children's would be a smart move for Sophia. She spoke highly about a program called the Aerodigestive team. The A-team we are calling it. Believe it or not, but it consists of a team of doctors working TOGETHER. Communicating together. What the What? The team is made up of ENT, pulmonary, and GI doctors that specialize in their areas. That in itself had us convinced to make the switch. I have spent months with insurance, communicating with doctors, filling out paperwork, and so many phone calls to try and get us our initial appointments with the A-team. Finally, in January I received a call the insurance was pending. A few more weeks later-approved. Finally, last month (after several more phone calls)- a schedule. I owe a huge thank you to my husband for encouraging us to pursue the switch!

Last week, we made our first trip to Cincinnati Children's Hospital. The first day was a formality really. Sophia met with anethesia first to go over her history before taking her into any ORs. Then the girl had an ECHO and EKG. Poor thing wasn't allowed to eat all day because normally they put small children to sleep during these procedures because they can't sit still. Not Sophia. She's a pro and didn't require it. Lastly. we met with the cardiology doctor to confirm she in fact has a bicuspid aortic valve (we already knew this) that was mild and she was clear for the OR. Day 1 of 7 complete. The next morning we were back again at 8 am for a sedated chest CT scan. This went well. A little upset with some cold /procedure-oriented bedside manner but nothing to get excited about. Sophia went right to sleep with a giggle and giving mommy a tickle:) She came out grumpy. We fed her and then walking down the hallway she lost her fed..ick. I have never been anywhere were people are so eager and willing to help you clean up vomit. I literally had two hands over my shoulders handing me napkins instantly and people throwing down puke pads. Poor girl. But do not fear because Miss Sophia was monkeying around a mere thirty minutes later. After some time to kill, we went to meet our first A-team team-member, ENT. Dr. Choo had me at hello so to say. He walked in an shook John's hand, my hand, and without a beat Sophia reached out and shook his hand. He was impressed. In fact on more than one occasion, he repeated how great she looked and how smart she seemed. What got me, literally crying was when he mentioned is end goal is communication and how he loves when his patients come back years later and say "Hi, Dr. Choo". Oh, how we long for that day. Its emotional. Sophia communicated fantastically with sign but to hear her will make me speechless.
What sealed the deal for my husband was the fact that even though clinically her tonsils looks like they need to be removed. He is a totally picture guy. He wants to know how everything is functioning before he makes any decisions to remove her tonsils and is aware it is in fact a major surgery.  Especially with complicated children like Sophia. The best part though is that Dr. Choo asked us to be apart of the CHARGE syndrome clinic. This means we will have a person contact us regularly to set up all of Sophia's appointments and we will meet them all on the same day. More over- THEY ALL SPECIALIZE IN CHARGE syndrome and research. Worth its weight in gold. Victory.

After the meet and greet with Dr. Choo we went on to meet the pulmonary partner in our A-team. Dr. Wood. He is a seasoned doctor who believes his patients are guilty until proven innocent. He end game is to make his patients tax payers. Dr. Wood went over the chest CT with us. He was pleasantly pleased with the anatomy of her lungs. Nothing alarming or concerning popped up considering her history. He used the world optimistic. Next we looked over Sophia. I didn't realize right away but he covered her trach with his gloved hand for a few minutes. While doing so, he looked over at me and mouthed, ''Oh my, this might be a quicker process than we think". WOOT WOOT! He said again that was very reassuring but everyone's guilty until proven innocent. End of day two.

Next week, we are back to Cincy for 6 more days of investigative procedures. First, they are going to put little miss asleep for the 12 time for a flex bronch. All three doctors from the team will each take their turn looking into Sophia's airway. The admitted their previous faults and realized that each doctor see things differently and more eyes are in fact better than one. After each looks around, they will put a camera up through Sophia's nose and down into her airway. They will leave that over night in the hospital to observe her breathing and reflux and gather more information. The next day we will have two types of swallow studies. We will meet with the A-team the following day and lastly we will have a sleep study. This will be an exhausting week. The doctors are doing all of these diagnostic procedures just to get to know Sophia before they make their game plan. You know what I really like, they have already had two conferences discussing Sophia before anyone laid eyes on her. Amazing. The ultimate goal (like is has always been) is to get the trach removed, her eating, and speaking. I am so far pleasantly pleased and very hopeful for what these new doctors have in store for Sophia. Its the total package really. And no one deserve a better package than Sophia. That kid has a heart of gold and willpower to envy. I mother and see her daily and yet I find myself looking to her in awe. The girl even signed to me the next day after the appointments that she had fun with mommy and daddy at the doctor. smh. what kid. Mine of course. She is one of a kind.

Please pray and send good vibes as we continue to embark on the next leg of our tremendous journey with Sophia Kay.