GI Issues start Again

Looking back...

This time the GI issues started on the 8th but at that point only mildly. On Monday I was at the school for a 504 meeting concerning the treatment and care plan for Ellie while she is in public school. We discussed her medical and feeding needs and how these tie into her academic abilities. On Monday Ellie was still ok and not much was going on that we really noticed.

Tuesday September 9th, however, everything changed. I got a call from the school letting me know that she was venting everything out as fast as it was going in and that not only was she venting her formula, but she was also venting green and brown gunk as well. She also had nearly filled her 2nd ferrall bag in under 2 hours, and by the time we arrived. 

A call to Dr M ( the peds office) and her GI team and both said ER. In the ER they determined that she was seriously backed up and a good clean out was needed. Back home we were and we started to the best of our ability the clean out as instructed. Then we were to follow up with GI and Dr M.

When we saw the GI on Friday September 12th during an emergency appointment we were one of our best chances of keeping her out of the hospital was to keep the pedialyte running with 6-8 caps ( up to 1 cup of powder) of miralax in every 500ml (2 cup bag) and if possible he wanted us to have a bag running in both her j and g tubes as long as she tolerated it. (I later discovered that due to my exhaustion I heard wrong. I was supposed to have 1 cup of miralax per liter of pedialyte. Still a lot of pedialyte for her age)

Yes, this is an insane amount for a child. In fact, this is the prescribed amount for an adult to take prior to an endoscopy. For such a procedure, an adult prescription call for 4 cups of liquid to 1 cup of powder, drink, deal with the effects and repeat 12 hours hours later. Normally, for most people, their system is cleaned within 18-24 hours of starting this process. This is not working the same for Ellie though...

We have now been doing this since we returned home from her appointment yesterday morning. The GI doctor told me to just keep going as long as we need because if she was in the hospital they would do the same thing anyway and a large amount will not hurt her as long as I am able to keep her fluids up like I had been working on.

During her ER visit she had an xray take to check her j-tube placement, it was clear that she was extremely backed up again and needed cleaning out ASAP. (TMI part) In the beginning, we thought the process was working and cleaning her out because the diarrhea hit hard and heavy. Well only for about 18 hours. Mind you by this point we had gone through maybe 4 or 5 cups of miralax powder in our child who is barley 60 lbs.

However, now we know things are finally moving through and it looks like things may actually be starting to work through finally. After 2 1/2 large bottles she is pooping normally now? Hopefully, we are able to get her nice and cleaned out for once. If things are not running clear by Monday, despite everything we are trying here at home, she will still have to be admitted for a much stronger clean out.

Monday the 15th we were back to see Dr M. After the KUB came back showing that we had made no progress I stopped the MIralax to give her body a break. Within a couple hours the diarrhea had completely stopped and by Tuesday Ellie was begging for more Miralax because her tummy was hurting and she was feeling sick again.

Wednesday the 17th took us to the GI clinic once again. The decision was made to admit her for the help she needed. However, as soon as this decision was made, it was also cancelled. There were 6 children in the ER waiting for beds on 10S and 3 had waited all night. Ellie was now child #7. Knowing this and knowing she was not in immediate danger, the decision was to send her back home for one last attempt to keep her home. 

New game plan: Make sure to have fluids running at a minimum of 60ml's. Start formula at half strength and run at 30 ml's through her j-tube and pedialyte through the g-tube. If she started vomiting or venting the formula out into her g-tube then we were to take her right back to the ER and have her admitted.

We waited until Wednesday afternoon to take her back. I had a dental appointment that I had to make (and stop rescheduling) and I also had an MRI I could not reschedule again.

Sadly (and as expected by her GI team) she was not able to escape hospitalization. Friday the 19th we had to return to the ER once again and from there we waited until they had a room for her. She had to have the hospital strength Golytely to clean her little body out.\

While she had a short stay this time, the purpose was to clean her out enough to send her back home. The best part of this stay besides the length, is the fact that the staff, her doctors, and those on call could tell that Frank and I know what we are doing with her and trusted us to send her home before she was even tolerating formula. We were given the instructions for working her formula back up to full strength and the rate. How long to work this over so her body is not taxed forcing it to shut down again.

Being treated like someone who not only knows what is best for your own child, but who also understands medical talk means more than many will never understand.