We have been out living life! Summer has been in full swing and we have been soaking it up.
Sleeping in, fresh peaches, swimming, parks, no school ... ahh, this is the life.
We have been pretty low-key. Just like I like it.
But we did do a week family reunion with Dan’s family over in Orlando. There are 10 adults and 12 kids (ages 1-16). And miraculously we all get along famously! (Two of the adults couldn’t make it this year so we were even MORE outnumbered than normal.)
Unfortunately, the trip had to be cut a tiny bit short as Manny got quite ill. He went to bed fine one night and then woke up in the middle of the night unable to breathe. We think it was another mucus plug (that’s what made us call 911 back in May). But this time, we better knew how to handle it. It was quite scary for a while and there was no sleep as Dan and I watched over him.
And just for fun, in the middle of this crisis, his TPN pump had a Human error malfunction. (sigh). It got quite severe before we noticed it as he was sleeping. Then we noticed something wrong but thought it was the respiratory stuff. I kept saying, “We’re missing something!” And sure enough, eventually Dan said something to me that triggered me to check his pump. It was off. (It’s in a backpack and attached to him so no reason to even THINK to check it.)
He was so non-responsive at this point. Scary. I gave him a glucagon shot in his butt. he didn’t even flinch. For my long time readers, you’ll remember Denver. This was WORSE than that! On TOP of the respiratory issues. And back then, all I needed was the shot but no one would give it to us. Now we have it. It’s with me all the time. In fact, I’ve had this shot for over a year and never needed it. But this night, I did. It likely saved his life. Yes, I got the prescription refilled.
The next day, he was still having some troubles with the respiratory stuff. He was awake off and on but only for a few minutes at a time. He was needing to be on his bipap constantly. So we packed up to head home. That’s where I have more machines and medicines to handle such things. (We only took the basics on vacation.) But because we are experts now at handling his illnesses, we were able to stay home and not be admitted this time. It took a good 2 weeks to fully recover but he did.
Meanwhile ... because I didn’t have enough medical things to do... Jacob started having issues. So the back story there: Jacob was fine. Age 12 had a routine urinalysis. Showed huge amounts of protein in his urine and elevated creatinine in his blood along with a few other issues. His blood pressure was normal to low. Biopsy revealed it was a kidney disease known as FSGS. (Focal Segmental Glomerulosclerosis). The nephrologist told me this is the diagnosis she most dreads giving to families. And the worst case scenario for prognosis is African American, male, teen. Jacob is all 3. Prognosis is usually less than 5 years from diagnosis.
So imagine her surprise that 4 years later, he is not progressing in his disease! We have been on medications, nutritional support, dietary restrictions and lots of prayer. She says there has only been one other person in her practice of nearly 3 decades that has been anywhere close to Jacob’s level of continued health (and they eventually died)! I tell her we pray hard.
One morning this summer, Jacob woke with his one side of his face under his eyes VERY swollen. This is a bad sign. Then we took his blood pressure and it was through the roof. For his age, height, weight, etc ... his blood pressure should be near 110/65 and his has been. Anything over 120/80 is a problem. Anything over 133/92 is an emergency. And his was over 160! An immediate call went out to the nephrologist. Blood tests taken.
His results are showing that his kidneys are in a slight decline but nothing that would explain his very high blood pressure. We are doing even more restrictive diet, more nutritional support, etc. And we will recheck labs this week. But I can tell you, his blood pressure is still very high so we are in need of prayers for healing for Jacob’s kidneys.
Between all this ... I need it to be low key!
But alas, that’s not the life I chose. Ha. More about the rest another time.
The kids are growing up as I type this blog. And I don’t want to miss a minute of it. (Ok, maybe the whiney parts I can do without.)