Thursday, March 27, 2014

And though he be but little he is FIERCE

I have to think back to where I left you... It was Tuesday... Yes?

Jack never tried any Pedialyte that night. He spent half of the night (starting at 10:30pm) in discomfort and eventually we had to intervene with Zofran and Tylenol. He quickly calmed and eventually slept...at 4am.

Wednesday morning Jack awoke at 7am to vitals and then labs and then doctors... Boy was he mad! I would be too! Wednesday was a good day in terms of how Jack is feeling. Isolation was lifted. We ventured out into the hallway a couple of times. The first trip took us to the playroom. Lots of stuff to do there. We only stayed for a couple of minutes, long enough to get a puzzle. Jack wheeled himself back to his "hospital bedroom." The second trip took us to a small library. We found four books to bring back and read.


Pedialtye was started back up that afternoon. This time we started extremely slow. So slow, he only received 1 tsp per hour for two hours and then took a two hour break, repeat. 


We upped to 2 tsp per hour Wednesday night but had to stop due to discomfort. Then... The feed stopped completely at midnight. No, not for belly trouble. Jack was NPO (no food by mouth) for an upper GI in the morning. 


Why the upper GI series? Jack's GI doctor finally came by. She's been out of town. Boy am I glad that she's back. She is on the same page as me. Dr. Utterson ordered a new medication for Jack's face. His cheek is all burned from stomach acid from the vomiting episode and hasn't been healing with the current medications. She is also concerned that Jack's belly isn't recovering as quickly as it usually does. She mentioned something called an intestinal pseudo-obstruction. She discussed the possible need for a G-J tube (gastrostomy-jujunostomy) where the feeding tube bypasses the stomach and feeds the intestine directly. We are especially hopeful that we can start nutrition soon because Jack hasn't eaten since Friday. If we run into too many problems we might need TPN (total parenteral nutrition fed through IV) while we figure this out. 


So it's Thursday. Day 6. Jack had the upper GI series this morning. I am awaiting word on the results. We've started the pedialye at 2 tsp (10ml) per hour for two hours then a two hour break. We'll go to 15ml the next time if he does well. 

Jack is sucking all flavor from some bacon. It's absolutely disgusting and he is happy. He has a ton of gas. 



Next time you hear from me I plan to share good news. 

Tuesday, March 25, 2014

Chop chop chop chop chop chop...

Well... Jack is in the hospital... Again.
Same story. Vomit. More vomit. And more that doesn't stop. It started Friday night. Ok. Actually, Jack vomited once a day since the Sunday before and a few times the week before that. He tested positive two weeks ago for Strep, only because Evelyn came up positive and the pediatrician wanted all siblings tested. We didn't even know he was sick. No signs. Ok. Well, vomit and a nap before the positive strep test. Yep. Jack napped! The day the episode started Jack napped again. Yah. A nap! 

Back to where I was...
This time, I was able to get it a little more under control before taking Jack to the hospital with some dissolvable Zofran (anti-nausea) tablets. The cycle of vomit was every 30 minutes. When I administered the second dose 6 hours later, the cycle quickened to every couple of minutes. It was time. We headed to the Emergency Room on Saturday morning. I brought the lab orders from GI with and they were drawn before IV fluids were started.

The fluids were then started, Jack's belly was hooked to a bag to collect the stomach fluid, a call was made to GI in St. Louis, plans to admit in Springfield were made and then next thing I know, plans change. "This time," the hospital decided to transfer Jackson to St Louis Children's Hospital...by helicopter!

I don't think that was necessary but then again, I'm at the point where I don't think of Jackson's medical history as serious, when apparently it is, according to the many doctors I've seen since Saturday. The plus to being at SLCH: Jack's GI doctor is here. I do to want to knock the care we receive at smaller hospitals, but the care at SLCH is great and I feel very comfortable here.

I arrived at SLCH about an hour after Jack. By this time a second IV was placed, labs were drawn, as well as the same orders from that morning (probably a good idea), and he was resting as much as his body would let him. I could tell that he knew I was there. He opened his eyes slightly and his heart rate slowed a bit.


We spent the first 24 hours in the PICU (pediatric intensive care unit). Jack had a nurse watching him and only one other patient. The nurse's station was right outside of his door and there was a window for her/him to watch constantly. Jack spent most of the time in the PICU in pain. He fussed, cried, and retched quite often. The medicine, Zofran, that we've used many times before, wasn't helping the nausea. Jack also had a fever and tested positive for Rhinovirus, a viral infection. Of course, there isn't any medicine for that. his chest xray came back clear as well as the abdominal xray. I'm going to play doctor here: I really do believe that Jack is suffering from another Cyclic Vomiting Syndrome episode as well as Abdominal Migraines. The abdominal migraines would explain the continuous discomfort that Jack has been experiencing (You'll have to look those terms up since I'm writing this from my phone an can't place hyperlinks right now). His nausea and pain seems to be slowing from 30 minute cycles, to an hour, an hour and a half, two hours, three hours...


Jack moved to a regular floor Sunday afternoon. His room is private. Everything has been going well but we've had some setbacks. The IV in his foot, used for the Zofran for the vomiting, kinked and had to be removed. Within 5 minutes, the same thing happened to the IV in his hand ( fluids). IV therapy came and placed a new line in Jack's other foot. Yippe! Jack seems happy to be able to use both of his hands. They have spent most of the time in his pants. "Typical Jack! Typical boy!"

Monday was going smoothly. Jack sat up. He asked to play. He asked to eat chips. We cuddled on the couch for a few minutes. He talked a bit...


Monday afternoon, the decision was made to try a small amount of Pedilyte. The Dr. Wanted to do a faster rate and a larger volume than we've done in the past. I let him know. He backed his theory up. I understood and agreed and figured if it doesn't work, maybe next time they'll listen to me. Well... It didn't work. Jack started having discomfort during the 30 minute feed and vomited as soon as it was over. And then again an hour later. We gave Zofran again. And then again an hour later. By that time, Jack was showing more exhaustion and as very weak. We hooked his belly up to gravity and started draining the fluid again. Lots of fluid. Bile. Nasty.  Jack slept hard Monday night.

So now it's Tuesday. The morning went well. Jack hung out on the couch and tasted Froot Loops. He spent a long time playing with toys brought by Child Life. 


He tasted more chips and pretzels. We discussed trying to feed a small blend of Pedialyte and baby applesauce. We checked Jack's stomach fluids and gave him one of his medicines. He's been in bed for about an hour and a half. He's acting like he doesn't feel good. He looks like he doesn't feel good. Guess it's good we didn't try any food yet. We're about to give a dose of Zofran to see if it helps before he try some blended food. 

I'm hoping when I write again, we're home! 

Tuesday, March 11, 2014

Amazing things with a side of strep...

Amazing things are happening around here! Sickness pursues as well.

Jack was supposed to have his MRI and muscle biopsy today, 3/11/14. Long story short but most likely long: Evelyn went to the doctor for a fever and came home with a positive strep test. The doctor wanted Jack and Katie tested. Katie came back negative. Jack came back positive. Positive?! 

We didn't even know he was sick! Actually, he had vomited two Saturdays ago, then Wednesday, Saturday, and Sunday. Two Saturdays ago he went to bed at 6pm with no meds! I figured he might be sick but he didn't have a fever. I also assumed the vomiting was due to recent constipation. It's not like a fussy Jack would tell me something is off. He's always fussy. He can't tell me that his throat hurts or that he feels sick but he can share all of the different types of equipment in a doctor's office as well as which office had what theme and which test had a sharps container. 

Anyways, off to amazing things...

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