Tough Days

I have just returned home with Sammy from an emergency trip to Atlanta and I am still struggling with how to write about the emotions of the last few days. I guess it all comes down to fear and feeling helpless. I need to remember this scripture which I have heard and read many times before..

Do not fear, for I am with you; Do not be dismayed, for I am your God.
I will strengthen you and help you; I will uphold you with my righteous right hand.
Isaiah 41:10

First I should say I am always fearing any type of low heart rate/ bradycardia episode, but there has always been quite a spectrum of severity and duration of his symptoms during an event. There were pretty scary bad ones in the hospital following surgeries or during illness etc when whole teams have had to intervene and then quite a few in our home where Sam required stimulation and/or oxygen to recover. Others were completely self correcting and just the knowledge that his heart rate took such a plummet was scary. Color changes and behavioral symptoms are easy to spot when he is having a bigger one. All of them are scary for me but up until Wednesday, there had only been one or two other episodes where he actually passed out completely and only one was followed by no breathing for an unacceptably long duration in our home. That was back at the age of 2 months when I gave 2 rescue breaths myself and was on the verge of compressions when he roused.

I was not feeling well Wednesday morning, so my mom was over helping with the girls while I tried to ease into doing bills, paperwork sorting etc. I needed to head over to the pharmacy and the bank, so I popped my head in on the nurse to let her know where I was going. This nurse was a fill-in for our normal MWF nurse and it was only her 2nd day. I gather this made the turn of events even more difficult. As she turned to place Sam in his crib, I watched as his tubes were left to dangle between her body and the cribside. Then as she lowered his body, the GJ tube which leads down into the intestines, became caught and pulled out. The balloon which holds the GJ in the stomach had popped through. This has happened before and although frustrating, it is not the end of the world. The most frustrating aspect is that a GJ can only be replaced in interventional radiology under flouroscopy. For us, this can mean a trip back to Atlanta when it has entirely come out since our local hospitals do not have the tools for a mickey GJ placement. When only partially pulled, we can probably just head to a local ER to check proper placement. In this case, only the balloon and beginning of the GJ line had popped through.. at least initially.

I asked the nurse to please hold the tube against the stoma to prevent it from coming out any further. She was kinda new to this and floundering a bit so I was explaining what would need to happen next. She was holding it to him, when I turned back to the crib and found Sam's color was draining out and he was nonresponsive. He was turning grey, his eyes were glassy and his mouth, although open, was not moving air. In moments, his eyes rolled back and he fell unconscious. He was not breathing and his color was now completely grey everywhere. Words can not describe what he looked like at that moment. I thought he was gone forever. I went into pure "Go" mode and the nurse and I began scrambling for oxygen. She was quite upset to discover there was no ambu bag near the oxygen tank or the compressor. I began to panic too but as she was already doing enough of that for both of us, I moved my focus to him in the crib and tried to stimulate or bring him up somehow while she searched. He was a limp noodle..lifeless. I don't know how long this whole situation lasted but I imagine it was only a couple minutes before I realized I had seen the ambu bag below the crib the day before when our diaper supply was low. That is usually the only thing stored under there and so I remember thinking.."hmm why is that under here?" but yet for some stupid reason, I did not pull it out. Since then, the other nurses have told me that our night nurse had "cleaned" it to that storage spot. When I realized where it was I went to get the drawer open, quickly realizing the side rail had to be up to get it out... it is amazing what bumbling idiots you become in these moments. I remember myself shouting and fussing with this before I finally got to it and we started some blow by while rubbing his chest. At this point he started reviving and color came back. By the time we got a pulsox on him, he was doing much better. It was all such a nightmare.

During the course of events I had shouted "CPR.. Maybe CPR" but could not form thought about whether that should be our next move. The nurse thought she had felt a light pulse but honestly we did not know what it was or how slow it needed to be to warrant compressions. I have since learned that even if his heart rate was below 60 and he was this symptomatic, compressions might be needed to help bring up his heart rate enough to circulate the blood properly. I think I was first and foremost just thinking about oxygen.. he was just so grey.

After all this happened, it became evident that the entire tube had migrated out of his body and so I inserted an extra G tube I keep on hand so that his stoma would not close up. These can be inserted rather easily with the use of a kit and some saline in a syringe. After all the excitement, Sam seemed stunned but happy to be in my arms. I asked the nurse to hold him and read to him so I could call the Drs. Of course it was lunch hour and I had some trouble reaching people. His GI Dr. wanted us to board an angel flight and come to Atlanta's scottish rite for replacement and monitering. He did not want fluids going in through the stomach for fear that his episode was evidence of some kind of internal issue caused when the tube was pulled out. This made things more complicated since Sam can not go without proper fluids for any stretch of time. He wanted us to have an IV placed for the trip but of course we could not get that arranged quickly enough by our pediatrician locally.

So we made flight arrangements out of Destin through the amazing people at Angel Flight in Atlanta. They put it together in an hour and a half. They are true Heroes and I will forever be in their debt for the missions that have made it possible for Samuel to reach the best medical care available. I am quite humbled by the kindness of strangers. They really are angels sent down to touch the lives of innocent children. Our pilot said this was his first chance to fly someone since joining the organization over a year ago. He was so happy to be able to help. I could tell Sam was working in his life by giving him the opportunity to make a difference. God works in such mysterious ways. Even horrible circumstances have a purpose it seems. I do believe God would not let our son experience this pain without also allowing it to effect others in a positive way and also to help us not lose hope about the humanity of the world we live in. Sam makes me want to be a better person every single day. I am so thankful that others feel this power when they reach out to kids like him too.

We had some further trouble on the flight at higher elevations, both on the way and then again on the way back. It seems elevation poses yet another difficulty for Samuel. His sats dropped into the 60s and 70s and he turned a bit dusky but once our elevation was adjusted down, he quickly improved into the 90s again. I will have to keep this in mind for any future flights.

Our pilot personally drove us to Scottish Rite and we entered through the ER, where they were expecting us. Quickly, we realized Sammy was declining without much fluid intake. By hour 4, he was running fever, higher heart rates and respirations. He was hypertensive as well. With much effort, they finally got blood for labs and 4 sticks later, an IV in place. He had that in for about an hour before the whole arm puffed out like the michelin baby and he writhed in pain. This meant more and more sticks and two more bad IVs. We were about to be admitted to a room around midnight when the Dr came in and said an ambulance was ordered to come and move Sam over to the sister children's hospital at CHOA Egleston. We have stayed there before when Sam was once evaluated for the pacemaker. They have a wonderful heart center and are better prepared for cardiac issues. I was confused about the transfer but I guess they wanted to watch him for any other similar episodes. The ambulance ride was nothing short of frightening since a storm had popped up and I was in the front with the driver and Sam was in the back with the EMTs. The ambulance was flying down the interstate and I was feeling the effects of nothing in my prego tummy since lunch.

At Egleston, Sam arrived in a bad state of dehydration. They could not get any IVs in place and he was on the brink of a total crash. Finally they started a slow run of fluids through the G tube and he started perking up slowly. It was a slow day on Thursday and they held off on doing the GJ placement so he could be monitered by telemetry. He had an EKG and he bounced back and forth between the cardio service and general peds.

Those couple days back in the hospital were a reminder of why I HATE staying in the hospital for any length of time. The hard sleeper couch and constant people in and out through the night, coupled with mixing hospital food with morning sickness.. one change of clothes and no soft jams are irritating but really I just wanted to see Sammy perk back up and feel better so he could get back home to his sisters. Since getting home, he has slept alot and I have caught up on some rest as well although I can't shake the images of what took place the other day. I have an Obgyn appt on Monday and alot on my mind in that arena.

I am praying for a few others in the hospital right now. I pray for strength mainly, for them and their families. I know what it is like to feel powerless and experience a kind of helpless fear that only comes when it really is all in God's hands. I know I should not fear and God asks us to calmly hand our worries over to him.. but this apparently is something I struggle with, as it seems others do as well. I am thanking God for the help Sam had from so many good Drs and nurturing nurses this week. I seek guidance in my prayers about whether we need to go back to considering the pacemaker even with the risks of open heart surgery. I think if this level of event happens again at home, we will be forced to reconsider. For now, I am just praying his little autonomic nervous system will stay stable, that his health be good and that he will grow stronger with each new day.