Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Thursday, September 22, 2011

Gator Catch up

Life at home with Gator has been busy. He was on so many medications needing time for each med  to be distributed, making sure I was cleaning my hands and the tube and taking care of regular house things was a bit tricky.(why I haven't blogged) Here is Gator just a couple of days before we are discharged playing hospital bingo!
The best bingo ever cause everyone gets a prize!
We can call into the playroom with a joke and they will tell it on TV to the whole hospital and say the name of the child who gave them the joke. He is listening to his joke... Which happened to be, "If Frosty the snowman and lady Dracula got married, what would they name their child?".........Give up?........ FROSTBITE.....hahahhaha.
They can have the playroom bring things down to do. So he painted with his two favorite colors.
The whole primary wrote him that get well card, and brought him that fancy monster truck, Monster Mutt Lego's. Awesome. We love our ward family and would not be able to do this without you! His special treat that day is the Coke!
Here we are at home.... I wanted to have a little picture to document this for him. He amazes me. We have had so many mini miracles. Like the day we were discharged, I went down to pharmacy to get his oral meds, one medication we didn't already have at home. When the lab tech came back with the hugest bottle of Rifampin I had ever seen I handed over my insurance card. She ran it past her pharmacist and then told be that my insurance doesn't cover this med because of the new way they mix it... Okay, so it would be 156.95$ I must of had a look of complete horror on my face cause she walked over and chatted again. This time she came back with a smile. It looks like there is a waiver from someone upstairs, we can give it to you for 10.00$ can you do that? Totally!!!!. Right then and there my testimony of tithing grew. You can call it whatever you wish, in my heart I know that Heavenly Father was watching over my family in more ways than helping my son to be well and our family to be united. I know that it is because we decided that we would always make tithing our first priority; then have faith that things would fall into place. They did that day!
Another mini miracle. I was so scared that I would not be able to keep up with all that was necessary of me as a wife, mother and nurse. Without training other than just the day to day living I am not a nurse. But I have learned (and prayed) that I would know how to take care of Gator so that he would get better. He continues to improve everyday. He is so much back to his self that he hates being home all day and wants to be outside so badly. I let him sit out in the sunshine on the steps as far and his oxygen tubing will let him go. Play cars in the flower bed dirt and unplug for five minutes to visit his favorite big friends, Debbie Girl and Bishop for some chocolate milk and a squeeze/smooch. He loves them far beyond words. He starts talking about visits at 9:30 in the morning and doesn't stop asking until he has had his fix of his friends.
Another Mini Miracle. I do not have to change this dressing. Dillan our awesome nurse comes to do that. Gator saw him coming this Monday while we were in the office and closed the blinds and locked the doors. I was on the phone with Comcast disconnecting our services (except Internet of course) I asked Gator to let him in and he told be NO! When I let him in, Gator threw a huge fit with kicking feet and fists. Screaming and crying. I guess it hurts. He was brave after I explained that we have to do it, that it will be fast and it will be over. He has a forgiving heart because he gave Dillan some of his McQueen stickers for his ear beep beep (thermometer). Gator calls the little white part his Airplane.
That funny little bulb is his antibiotic medicines. They hook to his shirt and are distributed through a regulator over an hour of time to his body right through the PICC. He was originally on two antibiotics; Gentamicin and Vancomicin, as of last week he is down to just the Vanco and will need to stay on that for another couple of weeks. We will get some pictures of his shower thing cause it is funny. The trucks bandage you see is not as cool as we thought because it totally sticks to his skin and dries it out. So I bought him some socks that we cut the toe off of and it covers well and breaths so much better. We did have one issue where pushing anything through his line was really hard. We ended up needing TPA, or enzymes that safely break down clots so that the medicine can keep coming. It flushes beautifully now and we are back on track.
 I thought he would be eating better by now, but I am sure it will all come in time. I also thought he would have more energy to run around. He still gets winded and tired. There are so many wonderful things that he is doing. His little popsicle feet are toasty warm and he has the nicest skin tone. I also gave him a haircut because nothing is scroungier(is that a word?) than a little man with rooster-fashion-sleep-hair. I think he feels better about that. I would. Those tubes pull his hair and it feels better to have it trimmed nice and neat.
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Angee and Thom said...

Thanks for taking a moment to update. I have been thinking about you guys a lot. I really have been paying close attention to the "fontan bunch" this year because I know it is right around the corner for Severin. I just hope to be as prepared as you are!

Elk Horn Specialties said...

You are amazing Brynn!!!! And what a blessing you are to your family. Gater, Munchie, Ry and Jeff are so blessed to have you as their mom, nurse and maid :) Love you and hope to see you soon.

Love Aunt Lisa

The Hood's said...

Sweet little guy! So glad to hear he is doing better!
I have been thinking about you guys so much lately. Keep up the good work Brynn!
Maybe one of these days I'll update my blog instead of just reading everyone else's! :)

Terry said...

You should be so proud of yourself! Brynn, you amaze me!! I am so glad my little friend is doing good. I feel really like I have not done enough to help you all out. Sorry, bad friend. I want you to know that I am very proud of you and your family. LOL