Each day after school the girls and I do Highs and Lows of their days.
We've definitely had some Highs and Lows lately.
Bringing Cade home from the hospital happy, healthy and nursing was a MAJOR HIGH! We are so glad to finally have him here. He completes our family.
(He better because I'm DONE!) :)
We think he was pretty happy about it as well!!
Cade was and is a rockstar. He is nursing, gaining weight and doing wonderfully.
However, at our well child 2 week appointment, our doctor heard a gallop in his heart beat. In adults, this almost always means heart failure, but in kids it isn't necessarily, but can be.
This was where our LOW moment began.
We were sent immediately to the Pediatric ICU in Wichita. It was a little crazy to say the least. Claire and I had taken Cade to his appointment so Jed met us to grab Claire, and off Cade and I went.
We saw our Pediatric Cardiologist for another echocardiogram, which showed an atrial septal defect. This means he has two small holes between his top chambers of his heart. These could close on their own, and many times do. HIGH AGAIN!
However, while there they realized he wasn't getting enough oxygen.
After 3 days... and buying a cot,
we were finally able to come home with Cade on oxygen 24/7 for 2 weeks. LOW, but you get used to it, and it's only about 2 weeks.
We were scheduled to see a pediatric pulmonologist at Children's Mercy in Kansas City, and were hoping to get Cade off of oxygen at that point.
Unfortunately we found out that Cade's lungs due to Down syndrome do not have as many bronchioles. Also, the bronchioles end in clusters of air sacks or alveoli. Cade's don't have clusters they are just a blob (like my medical terminology. :)) Therefore he's not producing enough oxygen for his body. We were hoping, because of what we had been told, that with the excellent growing he was doing his lungs would catch up. That is not the case which leads me to our
MAJOR LOW.
Cade will be on oxygen on an as needed basis until 4-6 years old. It should just get better and better as he grows, which is encouraging, but will probably need it his entire life when he gets colds or anything respiratory.
This is how we feel about that news.
Having a typical baby with a new immune system is scary... everyone is avidly washing their hands and avoids breathing on the baby.
As you may have guessed, having a baby with a deficient immune system and on top of that respiratory issues is terrifying. As luck would have it, this is the worst year ever for respiratory stuff!! It's starting earlier than ever!!
AWESOME!!
(please insert major sarcasm here)
Therefore we are on limited contact, and as much as I want Cade to stay this tiny, precious, snuggly baby, I'm ready for October when he can begin getting his RSV shots!
In conclusion, this is how Cade feels about doctors.
(and this is a good doc :))
Honestly, we can't blame him.
Don't worry... next up making the best of isolation and limited contact...
God is faithful!
