My life as a Mommy of 4 little boys

Wednesday, March 16, 2011

My sick Haydy

It has been a long few days around here.  I'll start from the beginning though.  

Over the past few weeks Hayden has been complaining of his stomach hurting, it seemed to be cramping by how it would come and go and come on so suddenly.  He was also having random fevers but at the time it didn't seem to be due to the stomach issues because they weren't worse when the fever was there, they would just come and go.   He has been eating less and less, too.  It has progressively gotten worse and he was barely eating at all.  So on Monday I took him in to see his pediatrician and they took blood to check for food allergies, celiac and just a general blood work up.  On Tues it hit it's peak where he wasn't able to eat at all, he was crying in pain and had a fever.  I decided we couldn't wait around for those blood results, he was down to 26lbs...he is normally 29lbs which is already small for a 3.5yr old.  So we took him into Mansfield Methodist ER to have him seen to see if they could figure anything out.  

Luckily we were seen right away and they immediately started an IV which was absolutely horrible.  I was the only one there with him and they wrapped him with a blanket so he couldn't move and I had him look at me and put my head on his holding him and he was just screaming in my ear.  I was crying too, but he couldn't see.  They took some blood too to run some tests.  They gave him a bag of fluids and also some nausea medicine because he had thrown up that morning and they needed him to drink some contrast for a CT scan and they didn't want him to throw that up.  They then brought in the contrast which was mixed with apple was quite a bit too, probably about 1.5cups of liquid.  So I kept trying to get him to drink it...was really hard but we got him to drink about 3/4 of it which they said was enough.  After the first bag of fluids he was crying in pain still about his stomach and also about the IV too.  They gave him another bag of fluids to get him to pee because they wanted to test that too and also put some morphine in his IV so he wouldn't hurt anymore.  That took effect right away and he calmed down and went to sleep on my chest.  After he woke up Mark was there, he had dropped the boys with Aunt Dessa and Hayden wasn't hurting anymore so he was really hungry and wanted to eat something finally.  But he wasn't allowed to until the results from the CT scan came back and he couldn't go to the CT Scan until he peed.  They were worried about his appendix so in case he needed surgery he couldn't eat or drink anything other than that contrast.  After a lot of convincing and 2 full bags of fluid we finally got him to pee just a tiny bit, luckily it was enough for the test.  They finally came and Mark took him down for the CT scan since I couldn't being pregnant.  It didn't take very long but it really scared him since it's such a big machine.  They came back and we had to wait a little over an hour for them to bring the results.  Luckily his appendix was fine and most other organs, nothing emergent.  But they found "significant thickening of the ileocecal valve.  Enlarged lymph nodes measuring up to 1cm in right lower quadrant."  also "thickening of the terminal ileum and ileocecal valve".  We talked to a dr who said these are signs of an auto immune disease, more specifically crohn's and that's what they are thinking is going on but they can't say for sure until he has a biopsy and to do that he has to see a GI Specialist.  So they gave us a referral and some pain medication and let him go home.  Taking out the IV was almost as bad as putting it in :(  But after about 5hrs at the ER we finally were able to leave and he asked for Chickfila chicken that's what he got.  He managed to eat 2 1/2 which is great!  Then we came home and he went to bed.  

After he was in bed I started researching and Dessa also helped while I was driving home and everything we found is exactly Hayden.  Crohn's sounds VERY VERY likely down to almost every single thing about it.  And while it's not something I want him to have it's a relief that it isn't worse, that it's something that is treatable and manageable and he can live a pretty normal life playing sports, being active and just being a kid.  So it sounds like right now he's having a flare-up and that's why he's so miserable, he has every single symptom of one.  

I got up and called the GI clinic they referred us too, unfortunately the soonest they can get him in is April 21st.  That's at Cook's Children's in Ft. Worth, so I called Children's in Dallas and they won't even see him with our referral it has to come directly from a pediatrician so they can have his history from them.  Problem is he's never seen his pediatrician besides for that blood work that had nothing to do with Crohn's testing, he has no history there and his first appt isn't until April 28th.  It really made me mad they were being like that when the files they would have gotten from the ER would have been a lot more than any pediatrician would have given them, they can't do a CT scan there like they did last night, but whatever we will go to Cook's.  I'm going to call daily to see if they have any cancellations to get him in earlier and hopefully it won't really be April 21st before he's seen.   

He didn't wake up until noon today and by 4 had already fallen back to sleep a good 7x, he just couldn't stay awake today he was in pain, had a high fever and just weak from not eating.  We took his temp and it was 105.6 but he absolutely refused meds so I had to call Mark home from work to help me get them in him..that was miserable for all of us.  Afterwards he immediately fell asleep on my chest and the fever started coming down right away thankfully.  His fever is never fully going away but dropping down to the 100-102 range with meds so much better than the high temps they are going up to.  The meds we gave him that time were the ones from the ER (Tylenol with Codeine) and it really helped his pain and after he woke up he wanted to eat.  In total today he has managed

1/2 fig newton
1 mandarin orange segment
3 chicken nuggets
1/2 yo toddler yogurt with apples and cereal

Really good in comparison to what it's been.  His temp tonight came back up over 104 but we just gave him ibuprofen and it came down and he's gone to bed now.  

Also today I talked with his pediatrician's office, they called with his blood results from Monday which all came back normal except glucose and 2 other things which she said are very likely from him not eating right prior to the test.  I told her about the ER visit and they had already sent over the paperwork for it and she looked through the notes and agreed with the Crohn's probability and for now we are to assume that's what it is and do everything we can to get him to eat and keep him nourished and comfortable until his appt.  She gave me some ideas of things to give him to help so I went to Target tonight and bought some Pediasure, hoping he can tolerate it he usually can't have dairy but these are lactose free and from everything I'm reading it appears it's the lactose that usually effects Crohn's patients so hopefully that's what it is for him since he isn't truly allergic and it's not the milk proteins that bother him.  I also bought him some of the pouch baby food that have veggies and fruit because he's drinking fine so thinking he'll probably take those and it's more substantial.  Got him some V8 splash, again more substantial than just regular fruit juice.  I have contacted someone about buying some Peptamen Jr which is a supplemental drink that our pedi agreed would be great for him if he'll take it but it's very expensive at $165.99 a case but I found someone on craigslist whose daughter can no longer take it and she's selling her unopened cases for $36 a piece.  Hopefully she gets back to me tomorrow and we can buy a couple cases from her and he'll drink that too.  If we can get him out of pain and through this he will hopefully go back to eating normally and be ok to wait until April for that appt.  I just want to get him in and get an official diagnosis, see the GI and nutritionist and get started doing whatever we can to prevent these flare-ups or at least make them not as bad for him in the future.  

I have spent the last 3 days with him attached to me, he won't let me leave his sight or even put him down...I'm exhausted.  On top of that Landon woke up in the middle of the night sick too.  He's having bad headaches, high fever and congested...thinking possibly the flu.  So he's been miserable all day too.  And Casen is bored from being on spring break and us not doing much of anything the past few days.  Hoping tomorrow Landon is better and it's not the flu so he can go to his baseball practice and that will at least get us out of the house for a little bit and get some fresh air.  Hayden had to miss his 2nd soccer practice tonight since he's so sick...hopefully by next week things will be better.  

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