06 November 2013

Lessons Learned

A host of missteps led to Liam being in the ER for over 6 hours last week. Simply because of a pulled g-tube.  I've learned from my mistakes, the school has learned from theirs, and nothing like what occurred will ever happen like that again.

Liam pulled his gtube out at school while he was being fed. It's not a big deal, you use a syringe and easily deflate the balloon and pop it back in. The school nurse, however, failed to notify me until 2 hours had passed. That is still not a big deal because Liam has had his g-tube for four years and there is no way his stoma is going to close up that fast. I was about a 30 minute drive away from school when I found out and I assumed when I was notified that it had just popped out. They didn't say it had been out for hours. I didn't bring anything with me to school to put it back in and figured I'd just take him home and do it there in privacy.

When I got to the school I wanted to put everyone at ease about it not being a big deal. When I walked in the door I immediately told them it was ok, no biggie, and that I could just pop it in myself. They were thrilled to hear that all was good until I told them it had to be put back in within an hour. At that point their eyes got huge. They told me it had been out for over two. I grabbed Liam and headed out the door telling them we were probably on our way to the ER. 

I got home and was unable to get his used gtube in. I didn't have a spare (thanks to my med supply company) but I did have a foley catheter. I put the foley in with no problems. I just couldn't get the squishy old gtube to push through his stoma. Liam looked uncomfortable and I didn't want to inflict too much pain on him. So, I figured, I would just go to urgent care, have them numb his stoma and then push the gtube in. WRONG.  Unbeknownst to me, urgent care was useless and they don't help you at all if it involves a gtube.

When I got to urgent care they checked Liam's O2. He was satting low because he was coughing on his spit. The check in nurse got nervous at his low levels even thought I told her he doesn't require oxygen, he wasn't sick and it was just his spit at the back of his throat. She put him on O2, called for the ER nurse to come get us, and they whisked us to a bed.
Doesn't he look cute satting in the 80's?

And all I wanted was numbing cream.

Pulse oxes are pointless-just get me some lidocaine peeps.

Once in the ER, we were checked and spoke with the nurse about what was needed. Of course, we got the standard response, "The Dr. will be in just as soon as he can." 

I'm not going to go into all the details because it's a very looooong story of me getting mad at the nurse station because we had seen no one in hours, demanding my own foley to put in myself along with numbing cream, getting mad at the nurses station again when we still didn't get the supplies I needed, and then finally a Dr. coming in who had never seen a gtube like ours, had no idea as to how it went in and stayed in and was essentially no help at all. FIVE HOURS LATER!
Spongebob is the bomb.

If you all don't believe in God yet from reading the miracles that have taken place in our lives, let me show you one more:

A friend happened to get called in. He checked the admittance list for the ER and saw Liam's name. He came down to check on us and see why we were there. When he saw the situation, the stupidity of what needed to be done and what wasn't, that I was about to lose it after being there now for SIX hours, he said he had a Dr that he could call who could get us fixed up and out of there in minutes.

This guy did in a few minutes what the stupid ER couldn't in over six hours: get Liam's gtube in. All I needed, at hour ONE was some lidocaine.  That was the only reason I went to urgent care. I was trying to make it a bit easier on Liam to get the gtube back in.  What that ended up costing me was 7 hours at the hospital, a few lessons learned, and a little boy with a bloody gtube site. But what a gift it was when God sent a friend in after hours who knew exactly what to do. He does take care of us when you look to find it.

Holding Liam's stoma open with a lidocaine covered swab.
Liam's gorgeous, non leaking, perfect little stoma is now suffering from granulation tissue problems. I had to put silver nitrate on it last night and now the whole area is black from the application and red from the chemical burn of it.  I'm praying that the tissue issue gets resolved quickly and his little stoma gets back to looking perfect. We may have to have a session of myofacial release to get everything back to normal. Every Dr who has ever seen his gtube site comments on how fantastic it looks but right now it's ugly and raw. Luckily, Liam is such a trooper and other than the initial discomfort of trying to get the old one back in he hasn't complained a bit.

What lessons did I learn?

1) Make sure the nurse knows to notify me immediately if anything occurs like that again. 

2) Always have a back up gtube on hand. I had quit getting them because I don't change them out very often. They were just piling up in our closet. Once I went through the supply I had on hand I called to order more and they would only give me one even though I hadn't received one in a year. That left us with no back up. So, instead of saving insurance and medicaid money, I will just have them deliver them every 3 months whether I change them or not so I never have to worry about having a back up.

3) Urgent Care and the ER are of absolutely no help if you are dealing with a gtube issue. Urgent care doesn't even touch them. The ER carries no gtubes, the Dr's have no idea how one goes in, and if you don't have your own supply of equipment you will get a foley and get sent on your way to your gastroenterologist. None of that is helpful to a mom who has been changing out her own son's gtubes for 4 years. I can do all that myself with out them.

4) Even at times such as these, when nothing is as simple as it should be, when nothing is going right, and your anxiety is mounting over a banal issue, God is there, seeing that you are covered, watched over, and provided for.

Some lessons are learned the hard way. While we might wish the lesson didn't require of us what it took, nevertheless they are lessons that won't require repeating.

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