I think I jinxed myself. Two days ago I remember thinking that it was so nice that Josh had no doctor appointments this month, only therapy. Oh why do I say or think these things?
So anyway... I had to take Josh to Primary Children's ER last night. I really never envisioned we were going to end up there. Here is the reason. Two weeks ago or so, Josh started this clear runny nose. There were no other symptoms that were concerning or out of the ordinary to me. On thursday I started noticing him playing with his ears. It has never failed for him to get an ear infection with a runny nose. So friday afternoon I notice he is playing with it still but at that point I knew we could not get into his doctor until monday. I figured I could use his ear drops and ibuprofen until then.
Well yesterday morning rolls around. I get him up at 8 and get him ready for the bath. I notice his diaper is not as full as normal, but didn't really think much else of it. I got busy getting Trevor and Jordan ready to go tubing with my sister-in-law and then going grocery shopping. Around 2:45 I realize I have not changed his diaper, nor is it leaking which it should be. So I lay him down to change him and the diaper in bone dry. No pee whatsoever. Now he is on continuous feeds... so he soaks diapers in a couple hours. I call my mom at work to get her opinion on whether I should wait or take him to Wee Care to be seen. She suggests calling and asking. I do. They want to see him (big surprise). I make an appointment for 6pm. I get going on some laundry and the phone rings... a doctor from Wee Care calling. After talking to me about Josh, his history and what is going on he tells me I need to take him to the ER. He said that what is going on with him is above what they can do for him. So I sit for a few minutes wondering if it is REALLY warranted to take him in. Because of his special medical needs I can only take him to Primary Children's.. an hour away. I call a couple people to ask what they would do (thanks Jessica and Raeanne for listening to me) and get packed up and head out.
I check before I leave, the second I get there, and about every 10 minutes after that for some pee. Nothing. I am worried at this point, but figure he probably has a UTI or something like that. After many hours of waiting they run some labs, cath him and get some urine and we wait some more. The PA we had when we first arrived was not taking this serious. I tried to tell her that at this point this kid has not peed in 10 hours and his feedings have not stopped. At once point she said... 'well I guess I better ask the obvious... did you forget to turn his pump on?". I was a little offended. Um... no and I have added formula every 4 hours when the bag is empty just like normal. I call my mom to check in and she tells me I should ask for a 2nd opinion. I decide that the next time I get the PA in I was going to do just that. Well about an hour after they told me the results of his labs/urine would be in (love the ER waiting time) the ER attending came in. She just informed me that she looked over his file and decided she better take it over. So she does another exam... much more thorough by the way.... and informs me that he has a heart murmur and his bladder is empty. So what I was thinking was a bladder problem was dehydration. She said the labs showed signs of it, but it is not severe. She also listened to his heart (the PA did not) and detected a heart murmur and that tells her something is not right. So since we can't increase his G-tube fluids because of his reflux, he got an IV and some hydration that way. I think every doctor there last night got involved because nobody could figure out how a child with a G-tube and continuous fluids got dehydrated. I just told them... welcome to my life with Josh. He is always stumping the doctors. He also did have a bulging ear drum but they decided to not treat that and have us follow up with his doctor tomorrow morning.
So the summary of all that? Even a slight cold can make Josh take a turn for the worse with no warning. So they suggested I keep him home and away from groups. Oh... wait I already do that. They had no other suggestions for keeping him well since we already do everything. They just told me to keep an eye out of his urine output today and take him in to have him checked tomorrow and to follow up with his GI doctor. Even though he is doing better today... the reason behind how he got dehydrated in the first place is still a mystery. Oh good... I was wondering what I was going to do in my spare time this week. LOL.
Happy Easter! (a little late)
5 days ago