Gavin's Story! Living With Juvenile Arthritis, Uveitis & Ulcerative Coli...

Surgery cancellation #4

Well, as most of you know...Gavin had his pre-op on Friday the 25th. They tested his eye pressure and his left eye tested at 54! This is way too high! The normal range for eye pressure is 10-20. So, this means that his eye is not well enough for cataract surgery :( This also means we need to worry about Glaucoma. UGH...just what he needs. His eye drops have changed...they added some and stopped some. His oral meds will most likely change...just waiting on his rheumy to decide what to do there. My guess is that she will want us to back off on his steroids. He is on the steroids for his JA (Juvenile Arthritis) and UC (Ulcerative Colitis) but there are always side effects and cataracts and glaucoma are some of those side effects. He is still getting an EUA (Exam Under Anesthesia) on the 4th and she has asked a Glaucoma Specialist to do the exam with her so he can help prevent Gavin's eyes from getting any worse. Don't know when the cataract surgery will be but she has asked a Retina Specialist to assist her with the surgery because of the way it needs to be done. I will keep you updated on how his EUA goes and what his rheumy decides on what to do with his meds. Thank you all for the prayers and kind words! xxooxxoo

.......

I am having a rough night tonight. I don't know why but this just happens sometimes. Gavin has been doing great but yet I sit here crying...thinking about the future. Praying that Gavin will be healed so he can live a healthy and very long life. Hating that my sweet boy has these diseases. But knowing that he is a very strong boy and will keep fighting.

The next month is going to be busy for us. Gavin has his Remicade, Solu-medrole & IVIG infusions on Thrusday (that is the same day as his class picture so thinking about changing his infusion to the day before. He is a BIG part of his class and I don't want him to be missing from the picture). He will also start his first round of antibiotics to prep him for his cataract surgery. Friday is his pre-op appointment for his cataract surgery. April 2nd we are having his 6th birthday party :) April 4th is his surgery date then post-op the next day. April 7th is his actual birthday. The same day he is scheduled for his Actemra & Solu-medrole infusions. Then the following week is another eye appointment to follow up with his surgery. The week after that is another infusion Remicade, Solu-medrole & IVIG. And so on with the infusions like normal. On the 25th of April we are finally meeting with the Nephrologist...then we will find out what they are seeing on his kidney from the ultrasound...I am so nervous about this!

I guess all of this is starting to hit me and reality of his surgery is becoming just that...a reality! Although I am so excited about finally getting this done...I am just as scared. Gavin has been under anesthesia more times then I can remember but it never gets any easier. Signing that paper everytime before his procedures gives me such anxiety. UGH!

So, please keep Gavin in your prayers for a successful surgery and quick recovery! And please pray that he stays healthy enough before, during and after. We will keep you updated on how he is doing.

Thank you all
XXOOXXOO
Julie

Infusion Day

Well, it is now 2:50pm and we have been in the infusion room since 8am. Gavin has been such a good boy...mainly because he has slept most of the time. He was up very late last night.

Todays infusion is Remicade, IVIG & Solumedrol. His Dr came in and examined him and is happy with his joints (no flares...YAY). So, she lowered his oral steroids again (another YAY). She is going to mail all of his medical papers from his eye Dr in Miami to the new one here so she can "study" Gavin's history.

Gavin had to get stuck twice today for his IV :( The problem with him is that when they put it in the bend of his elbow the machine goes off every 10 minuites because he won't keep him arm straight. Today they did it in he wrist and it blew :( so they had to do the underneath of his forearm....it looks so painful but he didn't cry once :)

He was so happy to see that Jake and Hannah were here getting their infusions when he woke up. Hannah let Gavin play with her iPod Touch and now he is addicted...lol...he loved it.

Anyways, it has been a great visit at the Dr's today. Now we are going to try and get this splinter out of his finger.

Thanks for the prayers and love! It's working :)

xxooxxoo

2 days of Dr visits...

Today Gavin had his first appointment with his new eye Dr in Gainesville. He/We likes her a lot. She was very nice, compassionate and understanding about Gavin's medical issues. She is also understanding of our feelings and reservations because of the past issues we have had with other Dr's.

Anyways, Gavin was very good for her and she didn't see any cells in his eyes!!!! This means that his eyes are clear....NO INFLAMMATION!!!!!! This is awesome news! So, we scheduled him for his cataract surgery/EUA!! We are very excited and nervous about this. One thing we made sure was that she would not (under no circumstances) do the surgery if she saw any cells in his eye! She agreed and hopefully she is the Dr...the one...that is meant to do this surgery on Gavin. The surgery is scheduled for 4/4/11. Please keep him in your prayers that everything goes perfectly!!! xxoo

After his appointment we took Gavin to Toys R Us and he picked out a couple toys for being such a good boy at the Dr's.

Right now we are resting in a hotel room. Tyler went back home to take care of the other two boys. Gavin and I are planning on seeing a movie tonight "Gnomeo & Juliet" and go out to dinner. Then we have to get lots of sleep for his big infusion day for tomorrow.

Days like tomorrow I dread. It's going to be a long one...Remicade, IVIG & Solumedrol :( I hate putting all of these meds in his body but I understand that (as of right now) it is the only way. At least we will get to see our friends in the infusion room tomorrow. Gavin is going to be so happy when he sees Jake in the infusion room :) I haven't told him that he will be there yet... ;)

I will update you all tomorrow to let you know what his rheumy says and how his infusion goes :)

Thanks for all of the prayers and kind words :)

xxoo

So Far...So Good

Gavin had his Actemra and Solu infusion yesterday for his Juvenile Arthritis and Uveitis. The day started off great :) We ran into some great JA friends, the Sloan's, when we got to the hospital. Being with friends and family always make infusions a lot easier.

Gavin's rheumatologist is very happy with the way he is improving. He has gained more weight and has almost gained the 10lbs back that he lost last month because of the ulcerative colitis. She lowered his prednisolone again down to 6 ml's. His steroid puffiness is starting to go away and his familiar features are starting to come back. The infusion went well and as expected. He watched two movies and before we knew it...he was done. It was a short one for him.

We go back in two weeks for his remicade, solu and IVIG infusion. This is the long infusion...it takes about 8 hours just for the infusion. But, the Sloan family will be there again so that will make it a little easier :)

Gavin's ulcerative colitis has improved a lot! Being back on the remicade has done the trick for him. He is so much happier and full of energy these days. He has an appointment with his GI doctor in two weeks. I am hoping they will lower the doses of some other meds.

We are meeting with a new eye dr for him next month. Gavin's uveitis has been under control...as far as we can tell. At home his vision has seemed to improve. He doesn't have to get as close to things to see them like he used to. This is a good sign...but, he still needs to have his second cataract surgery and hopefully this new dr will be the dr that we have been praying for.

So, all in all, February is off to a great start for Gavin and I hope that he continues to keep improving everyday.

Thank you to everyone who has kept him in your prayers and thoughts. And thank you to our family and friends for everything! Having a child with a medical condition doesn't just effect the immediate family. It effects the WHOLE family and our friends as well. So, to all of you that go out of your way to help Gavin and us out...weather it's watching the other boys or something as simple as a phone call or card...it means a lot to us and Gavin loves the love :)

XXOO
The Smith's

Just little update...

Gavin has had a great week! He went to school and did awesome! He was nervous about going back to school because he had missed almost a whole month (Christmas vacation and being in the hospital). He was also worried about having an accident :( Because of the ulcerative colitis he has to go to the bathroom right away!

He got another ultrasound done on Friday of his Ureter, kidney & bladder. Hopefully they come back with better results this time. He cried the whole time he was getting his ultrasound done. He was scared that it was going to hurt him. I kept telling him that he will be fine and I will be there with him the whole time. When we left and got in the car he said, "You were right mom, that didn't hurt at all." So I asked he why he was crying if it didn't hurt? He said, "Well, it hurt a little." Hahaha...he is such a trip!

Last night we took the boys to the local Motocross. The kids loved it...especially Gavin. He wants to do it and he is old enough now but we don't think it would be a good idea for him. We don't want to hold him back from what he wants to do. We don't want his Arthritis top run his life, but we don't want him to get hurt (because it takes longer or him to recover) and riding motocross is hard on the joints...........UGH, decisions! We will see how he does on the little motorcycle that have.

After that we went out to dinner. Sitting behind us were 3 college girls. Brigham (our 2 yr old) was a trip and kept flirting with them. When Gavin introduced himself to them he told them that he was in the hospital. I have never heard him tell anyone this before. I was very interested to hear their conversation and his version on why he was in the hospital. When the girls asked him why...all he said was that he had to get some shots and it hurt :(

Monday is Gavin's follow up with his G.I. doctor where we will hopefully have the results from his ultrasound and then we go to the infusion room for his infusions...remicade, solumedrol & IVIG. It will be a long day.

Thanks again for all of the prayers and thoughts! They are working!!! He is doing great and recovering much quicker then we were told he would.

xxooxxoo

Juvenile Arthritis...it's no joke people!!!!

The following is a link to a story about a young lady who lost her battle with Juvenile Arthritis at the age of 26. It is told by her father. I wish all of the "skeptics" could read this! I am so sick of people thinking and saying, "Well, he doesn't look like he has arthritis." or "Isn't arthritis just sore joints?" My heart goes out to this family.

http://2011aworlando.kintera.org/faf/home/ccp.asp?ievent=424535&lis=1&kntae424535=688661AD8D1A46C3B244147F5B749B23&ccp=109188

Too many medications for such a little guy :(

This is just to show you what my little Angel takes and had to take for his arthritis, uveitis and ulcerative colitis. The bold print medications are the ones he is currently taking...

*From Day 1 (oral, injection & infusion)...
Naproxen (January 2007~January 2011) stopped
Prednisolone (January 2007~present)
Tylenol with Codeine (January 2007~January 2009) as needed
Methotrexate~injection (July 2007~present)
Enbrel~injection (2007) failed
Humeria~injection (2008) failed
Remicade~infusion (2008) stopped
Solumedrol~infusion (2008) stopped
Zantac (April 2009~January 2011) stopped
Humeria (April 2009) failed again
Remicade~infusion (June 2009~present)
Solumedrol~infusion (April 2009~present)
Rituxan~infusion (November 2009~November 2010)
IVIG~infusion (May 2010~present)
Iron (2010~present)
Vit D3 (2010~present)
Calcium Carbonate (2010-present)
Multi-Vitamin (birth~present)
Tocilizumab~infusion (December 2010~present)
Prilosec (January 2011~present)
Sulfasalazine (January 2011~present)

*Eye drops for Uveitis...
Presnosolone (2007~2010) on and off
Timolol (2007~2010) on and off
Atropine (2007~present)
Durezol (2010~poresent)
Dorzolamide HCI-Timolol (2010~present)

*We also give him liquid Fish Oil and powder form Acidopholis.

*Then there are the numerous antibiotics he has been on (because being on double immune suppresents means he gets sick a lot) and because of that he has become immune to a few of them already :(

We hate that our little Angel has to be on all of these meds but pray that they will continue to help him feel less pain and suffering that comes along with Juvenile Arthritis, Uveitis and Ulcerative Colitis.

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

Praying for answers!

Gavin is being admitted to the hospital tomorrow morning. They are worried that he may have another chronic disease. We will meet with infectious disease and GI doctors. They will do a scope on him. Not sure if it will be a stomach scope/rectal or both.

I am actually happy that this is happening. I want answers and I want them now! I also want my baby to feel better. I hope that we will get the answers that we need so we can get him on the right track to recovery!

Please keep him in your prayers! Thank you all so much! We will keep you posted on how he is doing!

xxoo

1.1.11

Happy New Year Everyone! I hope that 2011 will be full of Heath and Happiness for all of you!

Sorry I haven't updated you about Gavin's cataract surgery. It has been a very trying couple of weeks for us. You see, Gavin ended up not getting the surgery! Yes, I know....AGAIN!!! I guess 'Third times a charm' is just a figure of speech. Anyways, we had our Christmas early as planned and everyone was able to make it (except for my brother who lives in Hawaii). It was pretty much perfect! The kids had a great weekend and so did the adults.

Monday came around and I took Gavin in to his eye Dr here to check and make sure his eyes were clear for surgery. He passed with flying colors :) I called the Miami Dr's office twice...first to confirm the surgery date and second to schedule his pre-op for the surgery.

Tuesday we packed up the kids and started our 5 hour road trip to Bascom Palmer. The kids were amazing... never complained and just enjoyed the ride. As we were sitting in the waiting room and trying to keep our bored kids occupied with lollipops, movies and games...Gavin finally got called back to the exam room. Tyler took him and in 10 minutes they were back out. They just asked questions. A few minutes later they called Gavin back again. I took him to the exam room and we played some word games while we waited for his Dr. His Dr came in and asked her questions...how is his health, medications and so on. Then she did her pre-op eye exam and was very delighted to see how 'healthy' his eyes were! No cells floating around...this means no inflammation!!!! This is the best she has ever seen his eyes and said that they are perfect for surgery!!! I was so happy and relieved and thought that we had finally done it...all this hard work of trying to keep him healthy enough has finally paid off and he will be able to have his surgery.....not so much.

The Dr walked to the other room and told me that she has good news and bad news. Good news is that his eyes look great...bad news is that he can't have he surgery. Wait! What? I was speechless! I literally had no voice...it was like my vocal cords were paralyzed. I was in shock and just stood there staring at her. She then told me that when she called to schedule his surgery (that day) they were booked already. Well, I don't think it takes a genius to figure out that scheduling a surgery the day before the surgery is risky! Honestly, I think that she plain forgot because she proceeded to tell me that she was booked that day with surgeries.....hmmmmm?! Someone needs to get their story straight! I asked her if she could do it the following day and she said that would be a great day because it is not a busy day in the OR...but...she is going out of town. Again, I was left speechless! So, we left the office with a new surgery date of January 6.

The drive home was painful. I think I cried most of the way. I didn't understand why this kept happening to Gavin. My husband and I felt lost, confused, upset, angry...but... a little part of me was kinda relieved. I didn't understand why I felt this relief. I kept praying for an answer as to why Gavin hasn't had his surgery yet.

A lot of things have been falling into place ever since that day. When we got home I had a package waiting for me in the mail from my Aunt Gloria. It was a Rosary with a letter from her. I broke down into one of those -good but ugly- cries! It was perfect and just want we needed. A couple days later the kids and I drove up to visit with my sister. The next day Gavin started to take a turn for the bad. He was not doing well at all and was constantly going to the bathroom and stopped eating and drinking... for the most part. Tyler got up there Christmas morning and we called his Rheumy. She suggested that we take him to the ER...so we did. They gave him fluids, steroids and antibiotics...ran some labs and took a culture. His labs came back good (well, good for Gavin) and he was feeling better so we were sent home.

Gavin is still having the same problems. Not much of an appetite, always going to the bathroom, the occasional vomiting, tired....

He was scheduled for his infusion on December 30th. Tyler took him and let me rest at home since I ended up getting sick. The infusion did not go as planned. Because of his symptoms they decided not to give him his Actemra infusion because it is an immune suppressant and if he has an infection the infusion will only make it worse. But they gave him his steroid and IVIG infusion along with more labs and another culture.

That leaves us to today 1.1.11
So, now I see why Gavin was not meant to have this surgery yet. It's just not the right time. I really don't think that he is strong enough and his body has a lot more healing to do before it can handle the stress of surgery. God has answered my prayers and I am now shifting my focus. Before I was angry with the Dr's and staff at the hospital where he was supposed to have his surgery. Now I am thankful that the surgery didn't happen. His body would not of been able to heal with how it is now.

So, I ask you for your prayers for our son! I hate watching him suffer like this...it is so hard! Please pray for healing and strength....he needs it.

Good news is that he still has that awesome smile on his face and it gives me comfort knowing that he is not going to let anything break his Spirit and Charm! He is an amazing little boy...our little Angel :)

Sorry this was so long. I actually left a lot out...I didn't want to totally bore you ;) I will keep you updated on how he continues to improve.

Love to all
xxooxxoo