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How the Seitler Family Spent Their Weekend
Nicole and I went to a cute little B&B in Lancaster County for our fifth anniversary, but we had to come home a bit early because Joshua was running a fever of 102°F and wasn’t sleeping. That was Friday, and he was still the same all day Saturday. Round about midnight, Nicole and I were talking over our options, and decided an emergency trip may be in order because his wet diapers left us with the impression that he might have something serious, like a urinary tract infection. However, there’s another reason for this sort of thing… one we didn’t really consider (nor did we want to):
The hallmark of Alport syndrome is blood in the urine (hematuria). In boys with X-linked Alport syndrome, hematuria first appears in early childhood and their urine always tests positive for blood. [...] The hematuria of Alport syndrome is usually microscopic, meaning it can only be detected with a microscope or a urine dipstick. Sometimes children with Alport Syndrome have brown, pink or red urine (gross hematuria) for several days, associated with a cold or the flu. This gross hematuria eventually stops on its own. It can be frightening, but it is not harmful.
Source: Inheritance of Alport Syndrome & Your Child (Renalife)
If only we knew this before taking Joshua into the emergency room on Saturday night. It was especially stinging because:
- we were there till 5:30am Sunday morning,
- Joshua got a catheter so they could get a urine sample,
- they told us to come back Sunday afternoon for antibiotics only to tell us at 8:00pm (following a three-hour wait) that it was a 24-hour dosage and they wouldn’t be giving him any then,
- we had to follow up at the doctor’s office the next day,
- he needed a 10-day antibiotic prescription,
- the doctor wants a renal ultrasound this week, and best of all?
- We have no health insurance. (In a touch of irony, we just couldn’t afford it this year.)
So now we’re weighing our options—all of them. This was also a bit of a wake-up call for me personally, because I’ve been living in this sort of “we don’t know if he’s got Alport Syndrome or not” limbo of blissful ignorance. Now I’ve got to wake up and be the responsible daddy, because this is going to be a lifelong battle: the only options for an Alport Syndrome sufferer are dialysis and kidney transplants. There’s no cure (yet).
I’m going to be a sporadic blogger for a while (it’s already started, I guess, but this makes it official). We’ve got some things to take care of before I can focus on this blog the way I was for a while there. In particular, we need to secure prayers, health insurance and a good pediatric nephrologist (preferably nearby, like at Johns Hopkins).
Right now my greatest temptation is to pull back from everyone around me and just sit quietly in a little bubble of depression and fear. Feelings of inadequacy (a distortion of Phillipians 2:3’s “count others more significant than yourselves”) lead to my believing that people either don’t/wouldn’t care, or that they’d see this as petty compared to what they’re dealing with. Either way, I feel like I’m just whining if I talk about this and I’m honest about how much fear and doubt I’m living with right now. So I just don’t talk about it…and all that does is make things fester inside me.
And then I go to work and make comic books, and it all seems so surreal. It’s like amusements are the “important” part of my life (my career), while what are quite possibly life-and-death matters (searching out the latest AS research and good doctors) are relegated to hobby status.
We live in a screwed-up world, and some days it leaves me in the fetal position.
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Tagged: Family · joshua felix
Travis, we’ll be praying for you. Don’t forget that God is sovereign and He will care for you and your family.
Thanks, Steve. The hard part isn’t trusting in God’s sovereignty… it’s dealing with those times when what I think is best and what He thinks is best don’t match up.
Wow, Travis…our family will be praying for yours, especially little Joshua. Please keep us updated…
Praying
wow…nothing petty about that. I can’t even imagine going through that with one of ours. I’ll be praying for Joshua & your family
Prayers for your son and family, Travis.
Hey, it’s been a while, but I was just thinking about you and your family. I was looking at your pictures and can’t believe how much your kids have grown. I hope things with Joshua are better now; I can’t even imagine how scary that must be for you and Nicole. Blessings and prayers!
LJ
I’ll be praying… thanks for the update.
Wow, a catheter for a urine sample? Yehoshua had to give a urine sample when he was still in diapers, and they had a little baggie thingy that was adhesive. So the urine all went into the little plastic bag, inside the diaper. That seems so much less-invasive… Poor little Joshua!!
Thanks everyone!
@Tammy L: We tried the baggie; that’s the main reason we were in the ER as long as we were. We waited for about three hours and he wasn’t peeing… but yeah, they tried to be non-invasive. Joshua just wasn’t cooperating.
Oooh, what? I thought babies peed every 30 minutes. Only when you’re busy in the kitchen, I guess.
Too bad the baggie didn’t work! I was able to take Yehoshua home with the baggie and then bring it back in later. Much easier. Of course, his wasn’t an emergency situation…
Hey dude:
[1] I can’t decide if I’m offended or flattered by you knocking off my old shekinah gravatar.
[2] It will help me to decide if you e-mail me.
BTW, what’s up? You haven’t posted in 6 days — I’m hoping that it’s because you’re busy and not because this post went from bad to worst.
Praying for you, dude.
Sorry to hear about your interrupted trip, and even more sorry to hear about the medical problems you all are facing. Will keep you in our prayers.
I just found you when googling “head coverings” as i am new to the tradition. I see you’re in Balti (we’re not far here in Annapolis).
anyhow I just wanted to extend my thoughts and prayers out to your family. I hope you find peace over it all. and see some light, though I realize it is very difficult when it’s your child that is sick.
You are not whining at all. This is a serious, serious disease and you need to ask for prayer over and over. For Josh, for yourself, for Nicole and Katie. I am much more impressed with daddies who express their gutwrenching honest need for prayer than daddies who put on the “got it all together cuz I’m the protector” face. Praying for you right now;even though the post is old, the issue is ever current.