While I realize I always "promise" to be a better blogger and keep you updated on Wyatt's progress, I have come to accept that this task may be impossible. We go to PT, OT and Speech Therapy three days a week and between those days, we generally have doctors appointments littered here and there. On top of that, his TEIS teacher comes once a week. To say that a stay at home mom has the easy life is nothing but a big fat lie. We are constantly on the go and I find that "me" time is a sacred event, happening on Thursdays and Sundays (when Mike is off of work and forces me to leave the house).
So, to catch you all up on our latest developments, I will go back to our last appointment with Dr. Fazili (our pulmonologist). You all know that I praise the doctors I love. Well, Dr. Fazili is one of those doctors. He makes fun of me, which I really adore. He sees my tendency to overreact with Wyatt and laughs at it. Then he reminds me of these overreactions, every single time we see him.
Anyway, at our last appointment with Dr. Fazili he wanted to try and wean Wyatt off of the vent. It really started as a trial to see how he would do. And of course, Wyatt was a rock star! So, at that time, he ordered Wyatt to be off of the vent every two hours during the day. Also at that time, we were afraid that Wyatt was apneic. At night, or any time he was in a super deep sleep, he would "ride the vent". This meant that his breaths per minute rate was exactly the same as what the vent was set at. Dr. Fazili didn't feel that he was experiencing true apnea, but he wanted to make sure, so he ordered a sleep study.
We spent three nights in the hospital to see if indeed Wyatt was having sleep apnea. While I would love to go on and on about all of our friends in the hospital and how incredible it was to see them all, I won't. Suffice it to say that it was nice to just be "passing through" on our way. I had forgotten (thank goodness) how the PICU felt. It is a very sick place. And even though the only reason we were there was because of Wyatt's vent, I found myself sinking into the same depression as before.
Anyway, the long and short of it was that Wyatt was in fact being over ventilated. Meaning that the vent was doing too much work. It was not allowing his body to accumulate co2 thus he had no reason to breathe. (From what I understand, your brain tells your body to breathe in order to get rid of the co2 in your body. That's why you breathe.) We were sent home with instructions to allow Wyatt to begin breathing on his own during all awake hours, on a trach collar (a compressor with humidified air) and on/off in two hour sprints at night. With all of this being said, Wyatt has conquered everything set out for him.
Next, we took Wyatt to the CADET clinic at Vandy. CADET stands for The Complex AeroDigestive Evaluation Team. http://childrenshospital.vanderbilt.org/interior.php?mid=7310 . The gastroentronologist really had no reason to see Wyatt. Other than the G Tube, Wyatt has no issues. During our extended visit in the hospital, they told us that he had reflux. However, all babies have reflux to a degree. However, because of Wyatt's tracheomalaysia, they wanted to treat him as if he had reflux. Anyway, we saw this doctor for all of 5 minutes. There is nothing for him to do except to check on him.
Next, Dr. Goudy, Wyatt's ENT, came in. It's so great to see doctors that have not seen Wyatt's growth. It's really remarkable! He was so pleased to see how big he had gotten. Dr. Goudy checked Wyatt's stoma and said that it looked good. His ears were also looking good. He did say, however, that we would need to look into a longer trach in the near future. All of Wyatt's growth has necessitated a longer one. Other than that, he gave us a clean bill of health.
Dr. Fazili was the next to come in. As you can tell from above, we ADORE Dr. Fazili. He was overall very pleased with Wyatt's development off of the vent. He recommended that we try nap time off of the vent with the prospect of coming off of the vent at night as well!
Dr. Fazili also recommended that we start trials with the Passy Muir. WOWZA! A Passy Muir is a valve placed on the trach that allows air to come in through his trach and then forces the air out his nose or mouth and over his vocal cords allowing him to talk. www.passy-muir.com So Gwen, the speech therapist, came in to show us how to use it and to check it out on Wyatt. When she first put it on him, he lasted about 30 seconds before desating. He did, however, find out what it did.
I need to take just a moment to tell you how incredible the sound of your child's voice is. I haven't heard Wyatt really talk since April. Sure, I have heard him babble a little hear and there, but not really talk like a child his age should. The Passy Muir has been the most incredible device introduced into my life in ages. I am now able to hear Wyatt "talk" to me. He LOVES to scream. I can't explain what my heart does when he screams. It sounds so silly, but when you are use to a silent child, his screaming is like music. Here is a video of Wyatt talking. It's rather long, but you have been warned!
Anyway, fast forward 2 weeks. We finally went to see the geneticist.
If you have been following my blog, you will know that I have had a fear that Wyatt has Moebius Syndrome. http://en.wikipedia.org/wiki/Möbius_syndrome . Anyway, Dr. Bircher, his geneticist, said that she does not feel like he has Moebius. Can you imagine how happy I was to hear this news? It was like a Christmas present for me. She said that Moebius generally effects the lower extremities and Wyatt does not exhibit that. She also feels as though his smiling issues as well as his lateral eye movement issues are all related to his low muscle tone. She then went on to say that he will probably walk before his crawls due to the lower upper body tone.
I realize that it has been a really long time since I last blogged. There is so very much to catch you up on other than everything above.
During speech therapy, we have been introducing foods to Wyatt, in very minimal tastes. Ms. Jill, our first ST, was wonderful. She was very encouraging and always praised the work I was putting in at home. Unfortunately, since we live in Music City, Ms. Jill was married to someone in the music industry. In order for their family to be together more, they moved to Las Vegas. While I am happy for them, I am very sad to have "lost" Ms. Jill. I wish her nothing but the best in Sin City!
Anyway, Wyatt LOVES blueberries and apples. I can't tell you the brand right off the top of my head, but it's an organic brand and he simply adores this kind. He also gets sweet potatoes, carrots and peas. We try to give him foods that we are able to see when we suction his trach. If we suction and it is clear, we know that he actually swallowed the food and that none went into his lungs. If we get back a color other than clear (or white) we know that he is too tired to continue or that we gave him to much.
He really loves to eat, which he comes by honestly. He holds the spoon himself and will chew on it for hours if we let him. Ms. Jill also recommended that we get Wyatt an electronic toothbrush to help stimulate the muscles in his cheeks and mouth. Needless to say, he LOVES it. This is Wyatt at speech with his toothbrush.
During these last months we have been battling our first illnesses. We started with a double ear infection with an upper respiratory infection. While it was not fun, Wyatt further proved that he can tackle anything. The first round of antibiotics weren't enough to take care of if, so we had to take another ten days worth. On top of it, I am not convinced that he some of it might not be allergies. However, because he has been sick, we have not been able to take him off of the vent as much as we did before. This has caused a little set back in his weaning. We still take him off during the day, but not like we were doing. I don't want to push him too hard and cause something worse to happen. So, we go off a little during the day and for now, that's going to have to be good enough until he is back to himself!
There are so many things I want to share with you, but I feel like I have gone on enough. I won't promise to try to be better about blogging, but I want to be better. This outlet was so incredible for me when we were in the hospital, and as of late, the same blackness is seeping back in. It's hard. I wish I knew how to explain it. Some days are better than others, of course. But it's the same depression. The same feeling of uselessness. The same feeling that you are just going through the motions of life instead of living. I really want to change that. I really want to be a better person, not for me, but for my precious angel.