We realized that it has been about a week now that Jenn has been sick. It started late on Friday and progressed from a stomach bug to Diabetic Keto-Acidosis on Monday morning.When we called 911 we found out that her blood sugar was 469. In the ER we found out that her pH was less than 6.9 and into the lethal levels of acidosis.
Since then we've been in the ICU.
After our first 24 hours things seemed to be getting worse than better. A day and a half of rapid kussmal respiration pushed us to the edge of respiratory failure and Jenn was put on a ventilator. That was Tuesday. Since then we have been in a cycle of spiking fevers and blood sugar. Just as soon as you get back into a normal range you find yourself in the middle of almost a 400 accucheck or a 103+ fever.
The various and sundry electrolytes are doing their dance of order/disorder but for the most part they are behaving themselves now.
Eventually Jenn will come out of this. Soon she will be off the ventilator and get enough drugs out of her system that she will be cognizant again. I'm sure the first thing she will do is tell me to shave.
It's been a long week. In fact, this may be one of my longest weeks. Friday night was spent in the ER and then Saturday in a room at Children's Hospital with my son. He has had a couple of inexplicably swollen joints in the last few months, and when his wrist was swollen like it was broken at 3 am it was time for another trip to the ER.
The last couple of trip to the ER have led to little more than frustration. Jack getting plenty of x-rays, vial after vial of blood drawn and no real answers. But Friday night... or was it Saturday morning now... we met a couple of Hematology Docs for the first time. It turns out that the swelling in Jacks arm was a hematoma, that for some reason he was bleeding into his joint, that one of the key preliminary tests for clotting problems, PTT/INR came back unusually high.
"Does any one in your families have a history of clotting problems?"
No. Well, my father did, but it was the other end of the spectrum...he clots too well.
It's hard to tell. He is either sitting still or moving at full speed, so when he hits something or trips, he hits it as hard as he can.
Saturday morning we were admitted to the fifth floor at Children's while they tried to figure out what to do with us. More tests needed to be run which means more blood needed to be drawn. Jack was supplied with plenty of ice cream and milk by the nurses as well as "fruity cheerios".
Eventually test results started coming back and tests were repeated. New labs were drawn and sent off to the lab for confirmation and further evaluation and coagulation studies and we were sent home to wait on the results.
Yesterday we went to the clinic to talk to the Hematology docs again. The studies had come back from the lab and they weren't good. Right now the official word is that jack has >1% of the normal levels of Factor 8, a chemical in the blood that is required for normal clotting. He has Type A Hemophilia.
Thank God I went to Paramedic school and not into accounting.
Jack is an interesting case as far as Hemophilia is concerned. While this is usually hereditary, there is no history of hemophilia in either family whatsoever. Also, being older than 2 years old at the time of diagnosis means that he has flown under the radar far longer than most.
So right now, we are working on the gut level of emotions. I've had a lump in my throat for a few days now that has gotten far larger in the last 24 hours. This is a big bad and scary diagnosis, but thankfully it has had most of it's teeth pulled in the last few years. It is uncomfortable, but very survivable and a local non-profit is going to be helping us out more than I thought possible... I still don't understand how they can afford what they are doing, but I'm thankful that they are.
Soon out first doses of Factor are going to be arriving, and in a practical, boots on the ground, sense I have alot of the skills I need already. We're going to need to do IV's on Jack a few times a week from now on and I have plenty of experience with that. Mixing drugs is no problem. Sticking my son... that is something that I expect to be difficult to get used to.
As frightening as this is, it is essentially a chronic condition now. I've spent the last few days thanking God that it wasn't leukemia or any of a number of disease with more poor outcomes than this.
I guess this means that football and sword swallowing is out. But otherwise Jack should have a pretty normal childhood. We can clot bleeds now, if we have the factor. Hopefully with common sense we can reduce alot of the risk. The goal isn't to wrap him in bubble wrap, but to adjust so that he can live a normal life.
Today things are simple. Jack and I are watching VeggieTales and in a couple of hours we are going to Moe's to get some burritos.