Today KZ had a Bronchoscopy to try to figure out why he is having a hard time breathing and why it is so loud. He is already diagnosed with Mild Laryngomalacia (floppy throat) which they said 95% of kids grow out of but he is just burning so many calories trying to breathe, they just wanted to make sure it wasn't anything else. He is on very little oxygen and his oxygen numbers are staying up where they should be (95-100). They have discussed with us the option of a Tracheostomy but since he isn't showing that he can't keep his oxygen level up that isn't something that we need to decide and do right away, only if it gets really worse and his oxygen levels drop a lot. For right now he isn't struggling too much.
His weight is continuing to go up a little everyday so that is good! They switched his NG (nasogastric) tube to a NJ (nasojejonal) tube. The difference is the NG tube goes from his nose to his stomach while the NJ tube goes from his nose to his small intestine. They switched because the likliness of him refluxing is lower with the NJ tube and they don't want him aspirating on any reflux. He was able to eat nector thick formula a couple days ago but we had to stop when they decided to transfer him to the PICU for monitoring while he had a high flow nasal cannula in. They did the high flow to see if maybe it would open up his lungs a little more. The reason they wanted to try it was because they did a test to check his CO2 levels and they were higher than they should be which tells them he isn't releasing it like he should be but the test also told them that his body is making up for it and that his PH levels are perfect. We tried the nector thick formula yesterday for the first time in a couple days and he wasn't very happy about it so we are going to try again tomorrow, hoping that he will want to eat it. They aren't sure if his breathing issue is a nerological thing or if it is just a blockage.
He also had another spinal tap today to try and test for a few things. We won't get the results from that probably for a few days. They have started winging him off the steroids and started him on a medicine called Topomax which is an anti-siezure medicine to see if that will help. He is still having spasms but not frequent at all so that is good. He is starting to act like he did before the steroids where he isn't so fussy all of the time and he is starting to smile and laugh like he used to as well! It's so easy to get him to giggle again! :)
The annual Pentz reunion was held in Downey, ID. at the Downata Hot Springs. With lots and lots......and lots of encouragement both from our families and the hospital staff, Josh and I decided to go and spend the weekend with my family. I think the whole hospital staff knew about the reunion because every doctor, nurse, etc...that came in really encouraged us to go. When we first got to Downey.....I was sad. I didn't like not having my baby with me. It was a little hard filling all the family in on what was going on so Josh did most of the talking about all that. I wished he could have come with us and I wish I didn't have to miss him. I can't believe how much I think about him. All of the time it's him, I really don't think there is room for any other thoughts in there. And I'm ok with that. I don't know what Kaizen's future looks like, I don't know what his lifespan might be. So I am gonna think about him all of the time, and be happy about it because I am. I know I have said it a lot and you know I'm gonna say it a ton more but that baby, that sweet little boy, he has a hold on me. I have so much love for him it's ridiculous! It's like on his way out of me he grabbed a piece of my heart to take with him and keep forever. When we are apart it literally feels like a very very important part of me is gone, missing. I am so thankful for Josh working so hard so that I can be home with him.
So at the reunion my family really tried to help me have fun, laugh just a little. And I did. I still called the hospital a lot to check on that missing part of me and was always reassured that he was doing perfectly fine and that I should get some rest. Josh's mom came and stayed with him for a long while on Saturday and I was thankful for that. While it was hard to be away, I did manage to loose some anxiety, laugh and play....even just a little.
The cabins a couple of us stayed in
swimming area, the heated pool you can't see here, but Kaiz would have loved it.....I just know it.
The volleyball area! And did volleyball we play! It was fun, I wish I could have got some pics
of the game in action....
pretty good looking couple if I do say so myself
This was funny, I was trying to sneak a picture of him so I turned it towards him
and then looked away and snapped it.....not knowing he was looking at it. Lol
You might of had to be there I guess......
He is holding his hand like that because of the game we were playing...
he was a gnome lol. The game is called Quelf, you should play,
really.....it's hilarious!
We celebrated our 5 year anniversary on Saturday, my mom thought it would be fun if we had a
little picnic of our own....:) It lasted.....hmm... about 5 minutes until we were uncomfortable and
wanting to sit at the table but it was fun while it lasted. Happy 5 years! This life lately has been tough but without this guy in my life....I would falter. He means so much to me and to Kaizen I know. I am thankful for the hard work he does so we can have the best life possible, I am thankful for how
much he has helped me with Kaizen. He helps so much I sometimes don't realize it until
he is gone. We may be going through a hard time in our lives, but I can't help to feel
so incredibly lucky to be dealt this "card of life".
The men and boys of the fam decided to play a game of football with another family that was staying
at the springs as well.......
It looks like they are all just standing around but they weren't.......there was some serious "footballing going on!
They got their very own cheerleaders!
We left on Sunday and went straight to the hospital where I was so excited to see our little bundle doing great. I came in the room to the side where he was looking, when he saw my face he immediately had this great big smile with eyes so wide......he was so happy to see me! And I him. O it brought tears to my eyes......I could just feel right then and there the power of the love we have for eachother!
I would love to end this post with a poem that Josh wrote. I am learning more and more about him as the time goes by......he can use words very well.
The sleepless nights, the rainy days,
Looking out of a window to see the glooming haze.
The feelings of hurt, happiness so far away,
Just taking this day by day.
The thought of wonder, The feeling of hope,
The test of all tests, life is not a joke.
This is so surreal sitting in this hospital room.
We have the strength, the power of prayer,
Looking up wondering is He really there?
I know He is listening, just hoping it's His Will,
To give us............the power to heal.
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