Gavin's new diagnosis

Sorry I didn't update the blog when we were in the hospital with Gavin. The connection there wasn't the best and we were very busy. I will give you a brief summery of what happened.

Day 1. Tuesday~ Gavin was admitted to Shands Hospital January 4, 2011. As were waited for his room he got a solumedrol infusion at his rheumatologist office because he was not walking. Once admitted and we met will ALL the dr's he had a feeding tube put in to prep him for his endoscope and colonoscopy....it was a looooong and rough night!!!! And he hated the feeding tube! But he cheered up a little bit when he got a surprise gift from my friend Stephanie...a bag of fun stuff and a balloon :)

Day 2. Wednesday~ Tyler came up and then we had to switch rooms. Once settled in the new room Gavin was transported to the OR for his procedure. It was very quick and the results were not good. They saw tiny ulcers in his belly and his colon was covered in ulcers and it was swollen and bloody :( They said that they were not able to see the whole colon because they didn't want to irritate it anymore so he would have to have a CT Scan on Friday (day 4). Gavin knee was also so inflamed. He was miserable so they gave him another solumedrol infusion. He also got a surprise present from my friend Amber...a stuffed dog and balloons :) Gavin also got an IVIG infusion because his protein was low.

Day 3. Thursday~ Today was a chill day. My parents came up with our younger boys and we all just hung out and relaxed. We also had some other visitors...the Lentini family and the Googin family stopped by to say hi and hang out with us (they are part of our JA family). I want to thank the Googin family for bringing Gavin and I breakfast...you guys rock :) It was a day filled with love, friends and family!

Day 4. Friday~We started the day prepping for Gavin's CT scan. They had to put a feeding tube in him again. This time I asked for him to have the zofran before they put it in and something to relax him. The last time was an awful experience for him!!! Gavin did much better this time but had a bad reaction to the Adivan. He was such an emotional mess and pretty much cried for 8 hrs straight. It didn't help that they gave him another dose before his CT scan. We felt so bad for him. He had NO control over his emotions at all. The scan results came back as expected and he was diagnosed with Ulcerative Colitis ... not something we wanted to hear but glad to have an answer. Later that day we had another visitor...the Wiliams family (another JA family) and they brought Gavin a doggie pillow pet :) Thank you. The rest of the day we waited and waited for the Adivan to wear off but it didn't....he had to sleep it off. He also got a remicade infusion along with methotrexate to treat his Ulcerative Colitis.

Day 5. Saturday~ Gavin's Dr's came in and went over what his treatment plan would be but also informed us that it could change at anytime because it's not 100% that it will work. So, he was put on daily solumedrol infusions (at a low dose) along with oral sulfasalazine 3x's a day and Prilosec 2x's a day...along with his other meds and infusions to treat his JA and Uveitis.

Gavin got a hall pass and we were cleared to leave the hospital for a few hours. We took Gavin to the park with his brothers. My parents and Tyler's parents joined us as well. It was good for him to get some fresh air and he had a great time but got tired quickly so we went back so he could lay down. Everyone went back home and Gavin fell asleep. My friend Amber came up and stayed the night with Gavin and I in the hospital. It was nice to have her there and it was a good change for Gavin.

Day 6. Sunday~ Gavin got his infusion and Tyler came back up as well as my sister with her husband and two kids. We got another hall pass and all went to the Butterfly Gardens. The kids had a great time and Gavin loved the museum because it had Mammoth skeletons there. It was a nice day and it was good to see Gavin's smile coming back :)

Day 7. Monday~ Gavin's Dr's came in and discussed his treatment with us again. He got some blood drawn and they said his protein was low again so he got scheduled for another IVIG infusion along with his solumedrol. We spend a lot of time in the playroom and took him out to a pet store to look at animals...he liked the snakes the best. then we went to the store and got another dinosaur movie and a dinosaur toy that he picked out. Then we went out for a late lunch. It was a nice day. When we got back we just relaxed and watched movies. That evening he got his IVIG infusion.

Day 8. Tuesday~ The Dr's all agreed that we could take Gavin home and be discharged :) They said that typically they like to keep their GI patients there for 2 weeks but felt that I was more then capable and experienced enough because of his other disease to make sure that he was on the right path. I assured them that we would do our best and call if anything changed at all. they gave him one more solumedrol infusion and early afternoon he was discharged....we were all so happy. But, we couldn't leave yet. We made our way to the infusion room for another infusion for his arthritis and uveitis. He got another pulse of steroids and his Actemra infusion. Finally, at 4:45, he was unhooked and free to go home :) He was so happy and exhausted. Gavin's little brothers were so happy to see him home but Gavin just wanted to go to bed and sleep.

~We have been home for 2 days now and he is doing a lot better. He still gets tired easily but is getting stronger and eating better each day. They say it will take a few months for him to get better. There is no cure for this ...or any of his diseases... but we can learn how to control it.

I want to thank all of you who have been there for us since day 1. We need you all more then you know and it is very much appreciated!!! Thank you for the prayers! They are being answered and our little Angel is getting better :) Thank you, thank you, thank you xxooxxoo

We will keep you updated on his recovery :)

xoxoxo

The Smith Family