Things have been (dare I say it?) good… no… GREAT around here. Our lives have been boring, uneventful and wonderfully void of any major medical emergencies.
We had a rough start with the g-tube (PEG) placement. Ari's abdomen swelled and the tube had to be adjusted post-op. This is a simple, pain-free thing to do, however not for Ari. The clamp was stuck and it took multiple doctors many painful attempts to get it. Ari was resentful for the pain and verbalized it quite clearly to me. "I don't like my new tube." "This surgery was yucky." "Why did you make me do this?" He never said anything like this to me before and it broke my heart to hear. I hid my sadness and offered him the best answers I could.
He developed an infection before we left the hospital and after one day of IV antibiotics, we went home with strict orders to return if it worsened. We were only home two days before we had to go back and get admitted again. When this happens we have to go through the ER, which was a nightmare… Standing room only and 7 hours from the time we arrived until the time we were in a room. We were both exhausted. Here's a picture of Ari waiting to go back.
This was one of the few times Ari wasn't "sick" in the hospital… he just needed IV antibiotics, so we took advantage of some of the hospital activities. He went to party after party, dragging his IV pole along with him, making crafts and enjoying the change of scenery. Volunteers really do make a difference at Children's hospitals. The Delta Airlines party was so cute… they had flight attendants serving hot cocoa, gave out stuffed airplanes, made crafts and even had a real pilot and photographer there to take and print photos as a keepsake.
We were in The Zone, an fun area in the basement of the hospital full of games and crafts when his nurse called me on my cell phone, instructing us to return to our room immediately because the lab results came back and Ari tested positive for MRSA… again. Immediately I thought of his last MRSA infection that kept him in the hospital for over a month. From that moment on, we were on isolation and not allowed to leave the room. It was hard for Ari to understand why the rules changed when he didn't feel any different, but Child Life took great care of him. He had a Wii console pre-loaded with 17 age-appropriate games in his room and an endless supply of craft supplies. We did every single worksheet that his kindergarten teacher provided for us, hanging each one up by medical tape around the room once completed. Liv spent as much time there as she could, reading to him and playing games.
Days later, when the admitting doctor rounded, we inquired about the status of the MRSA infection. He looked at us, puzzled, telling us Ari has an infection, but not MRSA. He checked lab results and made some calls. There had been a mistake all along. This was good news for us, but oh so frustrating. So, after almost a week in the hospital, we went home on oral antibiotics and hoped the infection would stay cleared and he would not need IV antibiotics again.
We took every precaution we could, but two hospital stays meant lots of germs and Ari became sick with a cold that settled in his lungs, complete with a croup-like cough. He ended up missing most of the next week of school as well. I know I've said it before, but our school is amazing. The way they work with us has far exceeded our expectations!
Our winters with Ari are always like this, so we took it in stride, resigning to the fact that things haven't changed, but the strangest thing happened, or shall I say, DIDN'T happen… Ari has been healthy… really healthy. The strength he has gained since the addition of g-tube feeds to his regular, adapted eating has been nothing short of miraculous. His weight is still the same, but he's so much healthier. His eyes don't look as sallow and his energy is non-stop. It is a beautiful thing to see… reinforcing our decision to insert a g-tube again.
We've erred on the side of caution this entire break, avoiding travel and crowds and it's payed off. School starts up again this week and his extra strength will come in handy. We're so proud of how he helps with the feeding pump and takes responsibility for the feeds. He's playing on a basketball team and got 2 baskets (or "scores" as he calls them) on Saturday, and sings and dances nonstop. Seriously… nonstop. Liv wants to be an orthopedist when she grows up, but Ari… he just wants to sing and dance and travel with his daddy. I love it.
On a different topic, our appeal to our secondary insurance got denied again. The next step is a trial. If anyone knows of a local attorney (familiar with the Katie Beckett Deeming Waiver) who would be willing to help us, we would be so grateful. Please let me know! My personal email is jlshumbres@gmail.com. Based on our current primary insurance plan, the financial impact to us will be nothing short of devastating, especially as it pertains to his monthly catheter and feeding pump supplies. It is baffling to me why someone as medically fragile as my son continues to get denied because "he does not require nursing interventions every 4-8 hours", "Services are not required 24 hours a day", and "there are no further procedures which require hospitalization" coming up. WHAT?!? That's just some of the reasons they stated, all false.
We wish all of you happiness, success, and HEALTH in 2014- we're certainly praying for that in our home!
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