Saturday, May 14, 2011

Into the wild blue yonder...

My mind is in a fog going into this weekend after quite a busy week. Samuel's peg GJ feeding tube began giving us some trouble early Monday and by Tuesday I knew it was on it's final legs. Our local hospitals don't carry the GJ button tube he needed so we made the call to have it changed out up in Atlanta where we also hoped to get established with a new GI that is somewhat acquanted with complex kiddos. If the tube completely blew, we would be in bad shape as he can't go more than 3 hours without fluids or formula due to his metabolic issues. The tube is a lifeline for him at this point.

This is the old PEG GJ tube that has both a jejunal port for the intestinal track where we put all his feeds, and also a gastric port for the medicines and pedialtye that go directly into his stomach.

By Tuesday, we had to arrange a mission trip with Angel Flight as it appeared to be breaking down fast. They had someone already on call and I had approximately 1 hour to get together all of Sam's medications, paperwork, equipment, syringes, needles, diapers formula etc.. and make it all fit into one bag at a low weight requirement. In doing so I managed to miss bringing his power chords which made things stressier once we arrived in Atlanta. Angel Flight is this amazing organization dedicated to helping kids get to the healthcare they need in a hurry. The kids have to be stable and able to fly so our Dr had to sign off on those details and within an hour or so it was all arranged and they sent a pilot out to pick us up in Destin. Many of these pilots are students trying to gain hours with an instructor along for the ride. Others are more seasoned and are flying their personal aircraft.

One big snaffu that morning in making everything flow smoothly was this all was happening on same day as Sofie's first gymnastics performance. I caught a few minutes of it but Jason had to come and take over for me so it was tough knowing she would be wondering why I had to jet off so quickly. Here are some pics of her performance. For a tiny little thing, Sofia is built solid and this sport seems to really utilize her natural physical strength and agility. I hope it also helps her to learn to follow instructions and have more patience and focus. She sure is pushing our buttons lately and this type of positive activity seems to divert her a bit. Best of all, she loves doing it and I hope it will be something she continues as she grows.

Sam and I later boarded a tiny 4-seater plane... this was totally new to us. If you are one who gets scared flying on a commercial plane you would probably run from this experience in a flash! But it was actually a relatively smooth ride and Sam tolerated it well. I was a little concerned about his heat tolerance issues as the two doors were mainly full windows and without AC at 8000 ft on a sunny day, it felt like a greenhouse on the surface of the sun :) but we arrived safely and I can't put into words how thankful we were for the service of these generous volunteers. It is an organization that truly makes a difference in the lives of children with serious medical concerns.

In Atlanta, after much ado and some hiccups in the ER process, we were able to check into the ronald mcdonald house for the night. We met so many families there with children and babies over at the hospital and undergoing procedures. If only I could help others to see how when your children are healthy and you have never faced the traumatic experience of watching your child struggle, you are blessed. I hope people take time to consider their blessings and pray for those not so fortunate.

I will be praying for one particular family that I met this week. They have a 5 year old daughter who is fighting for her life in the PICU. She accidentally put the car into neutral after moving into the front seat of their car parked in the driveway. The car rolled off the driveway into an embankment and she was paralyzed from the neck down. Her name is Jordan and her family is devastated. Every time I meet a family going through these type of challenges I am struck by how many of them seem to be staying so strong in their faith and have courage that only God could supply. It is in the hard times that it becomes clear what we really believe. I also have a prayer on my heart for a good friend who just experienced a miscarriage after a long journey to become pregnant. I know she is dealing with alot of emotions and I hope God gives her peace in this tough time.

As for the rest of Sam's trip, he met with a new GI specialist and received his new GJ Mic-Key button at the hospital. He did have some periods of low o2 levels while sleeping prior to the procedure which I attributed to the NPO factor of going hours without food or fluids but overall the procedure was uneventful. We were able to return home within 24 hours and are planning to go back in 2 months for follow up. It looks like we will be setting up a team in that area for certain specialties. The new MicKey button is great since now we can remove the extension tubes during bath and floor time for therapy and such.. Here is a pic from a recent therapy session. He is working so hard on weight bearing. He is rolling all over for the first time and is getting chest off the floor consistently without help. His pediatrician says he is gaining alot of strength. Today the Dr. actually had an incredibly hard time checking his ears as Sam pushed him away over and over again. I love the fight in him!

One big positive to the trip was finding out Sam has yet again put on more a miraculous rate. He is 18 lbs and gaining! Everyone is pretty excited about this change since starting the hourly extra pedialyte and MCT oil. I think it may be the reason Sam is also making alot of progress in therapy. He actually now scoots around in his crib. Before, he always stayed exactly where you laid him down. What changes we are seeing!

It was wonderful that we got a chance to head back so soon after the procedure as the girls were not expecting it.. a happy surprise for them. Angel flights leave from private airports and I think we may have even spotted a few celebrities as we waited at the signature private airport in atlanta. Neat to see the fancy way some people fly.. I should have taken some pics of the hospitality staff in tuxedos and limos dropping off passengers to some of the fanciest jets I had ever seen parked not so far from our little prop plane. Our pilot said Sam was their VIP and was "riding in style."

We have done this once before but this time I was more relaxed and able to take a look at the views. Here are some shots on the trip home. What a beautiful view it was at sunset returning to our home on the gulfcoast.

Pre-Flight Check..Sam was completely done after a grueling day..

Leaving Atlanta

In that last shot I was getting a shot of the wheel as there were a few missing screws and I was feeling a little nervous about that..

As we began to make our descent, Sam had some issues with the pressure.. he had some color flashes that made me nervous but his heart rate maintained a safe range.

Funniest part of the trip home was the pilots searching music on their ipods, taking pictures with their cell phones and having to look up our airport on yahoo maps cause they could not visually find it.

Wow..beautiful.. almost home..

Our Angels.. the pilots who got us home safely. We will be forever grateful for your gift!

1 comment:

  1. Angel Flights are awesome! What a great organization. But kinda scary if some are students in those itty bitty planes..... Glad you made it safe and sound!
    Sofia is too cute!!! From the pictures you posted on Mother's day, I think she looks a lot like you as a child. She's going to definitely be a beautiful adult like you!