Frustrated with Rheumatolgist

Up until this point I have been so happy with Jackson's Ped Rheumatologist. A few months back Dr. Vehe had said that Jackson's albumin levels in his blood have been slowly dropping at each blood draw and were now below normal and he was going to monitor this very closely. I was told it could signal a GI system problem. We are suppose to have labs drawn every 8 weeks but its been 3 months. I have asked Dr. Vehe at the infusion in March if he was going to get labs to re-check the albumin and he said no well do it next time, ok fine. So we go for next infusion which was yesterday and I have the doctor on the floor call Dr. Vehe and ask if we are going to get labs today because its way past the 8 weeks and he told her no!!!! I am beyond frustrated. First off he is suppose to get them no matter what to make sure the nasty meds he is on aren't harming his organs and second I thought we were monitoring the albumin levels. So I think I am going to just call Jackson's Ped here and ask her to do it, she is awesome. For quite a few months we have noticed Jackson's left knee to have a little bit of fluid and swelling. He has also been complaining about it a lot in the last few months. At our appt in March Dr. Vehe confirmed the presence of fluid and said if the swelling didn't go down we would maybe up the remicade dose. Well the swelling hasn't gone down and it causes pain for Jackson. So yesterday after telling Dr. Vehe this and telling him about the night it hurt so bad Jackson couldn't walk he says that Jackson is hyper-mobile and he probably just gets sore from being so flexible! Seriously!!! Then he says depending on Jackson's eyes on the 20th (which had cells in them in Feb.) we should maybe switch his infusions from 4 weeks out to 6 weeks. Yeah great I hate the infusions but this is completely opposite of what he said the month before and his disease has not improved. I wonder if he just has to many kids he sees and forgets what he says and then has a different opinion?! I feel that if he keeps up changing his mind about treatment I may have to find a different Ped Rheumy. We see Dr. Bothun (eye doc) on the 20th and I will probably voice my concerns with him about Dr. Vehe and see what he thinks. Dr. Bothun has been awesome and was the one who actually finally got a diagnois for Jackson. So April marks the 1 year anniversary of when we started being sent from specialist to specialist having test after test done to find out what was wrong with our baby boy. We were told everything tumors in the lungs, neuroblastoma, horners syndrome. 1 year ago this was the worst month of our lives, I was so scared. It would take until the middle of May and our first visit with Dr. Bothun before we got a actual diagnois. Still scary and sad but it sure beats the tumors and neuroblastoma that they had thought and tested for at one point! What a year it has been and everything my little boy has gone thru! He is such a trooper though and just full of life! It broke my heart yesterday when they put his iv in and I had to hold him down as he is screaming "please don't." Then when he saw his blood on his hand he got scared and started crying so hard. On a positive note a week and half ago we got our dog back!!! She had been missing for 20 days. I am so happy to have her home and so is Jackson. He keeps saying he missed her so much! Thanks for checking in! Sara

Mourning the loss of our Marley!

It has been way too long since I have updated this website! So there is lots to talk about.

Last blog post was right after Jackson's surgery which he recovered from 100 percent! Since then we have had 2 iv infusion treatments. I started scheduling them early in the morning in hopes that we would get home sooner but for some reason we are still getting home at 9pm! They say its because of pharmacy and mixing the remicade but it gets longer everytime, I just don't understand! Our last iv treatment was awful, we had the roommates from HELL!!! We will have 1 more treatment in this hospital on April 6th and then its off to the new hospital. I am sooo excited! All the rooms are private and everything will be brand new.

Jackson's last eye appointement was the very end of Febuary. There were no cells in the left eye, which was usually the one with the most. However there were a few cells in the right eye. I assumed there would still be cells, his eyes have been such a battle!

We saw the rheumatolgist a week and half ago and there is still fluid in left knee which has slowly started to bother Jackson more and more. This is discouraging as I had this hope that we could be in remission by now but it looks like its going to be awhile if ever. We will continue to monitor this. Dr. Vehe said there is room to move up the dosage in the remicade treatments if the knee or eye don't improve soon. They are also monitoring the albumin levels in his blood since they are continuing to go down every blood draw. They are currently below normal level right now. That can sometimes signal a GI system problem so we are hoping for a good outcome.

We also found out a couple weeks ago that we are having a baby girl!!! So happy and now we are done having kids. I feel like we will have our perfect family now. I have talked to my OB doctor about the possibility that Jackson's disease is genetic and she thinks its a very slim chance that we would have another baby with JRA. I am still a little worried about it but the fact that Mike and I don't have any family history of JRA, RA, or any autoimmune disease makes me think this baby will be perfectly healthy!

On a sad note, our black lab Marley ran away 10 days ago. We still haven't found her and I am so sad! She was my first baby (before Jackson) and we have had her 5 years. I am not giving up hope for her yet! Jackson and Marley were buddies too so he is missing her also. He opens the back door and calls her name. Everytime we come home he asks if Marley is home yet. Today it was warm enough to be outside for a little bit and Jackson wanted to ride his bike so we went a block down the road. Jackson said I am going to look for Marley and called her name the whole way. It breaks my heart to think we may never see her again. I am praying and hoping she is still out there!

We finally went on our trip to Wisconsin Dells for a few days this week. It was a lot of fun and Jackson loved it! He played so hard that by the day before we left he couldn't even walk his knees were sooo sore. I felt bad but he deserved some fun for once. Just another constant reminder that my child is not a normal child and it's just not fair. Its not fair that in order for him to enjoy something really fun he had to suffer for it in the end!

One good thing is Jackson had managed to stay cold free for about 2 weeks now, which seems to be the longest all winter! Hope it stays this way!

Thank you for all the thoughts and prayers for Jackson and his battle with this awful disease! Please also pray for 2 friends of mine who have children dealing with awful diseases and medical problems. Jackie, her sweet little Nash who is a only a month older than Jackson had brain surgery on Wednesday. Reene, sweet little Neveya who will be in the hospital for awhile for iv nutrition. And of course prayers and thoughts to all who suffer with JRA!

Sara

Jackson's Surgery

I feel like it has taken me forever to post a update! Jackson has been doing very well! His last eye appointment in Dec. the eyes were clear and we have another eye appointment in the next couple of weeks so I will be anxious to see if the eyes stayed clear. I am however not counting on it since we postponed the remicade infusions for 3 weeks and methotrexate injections for 2 weeks because of his surgery. Jackson had hernia repair surgery almost 2 weeks ago. I was very nervous because he is high risk of infection because of all his meds supressing his immune system. But he is great and so far no infection! Coming out of anesthesia was rough, Jackson was not happy and cried a lot. I finally convinced the nurse that he would be much more comfortable at home so they let us go. After we got home things went well. He walked hunched over and holding his stomach for only 2 days. I kept him home for the entire week and had him watch movies to make sure he would rest. I still have yet to see the incision because its covered with a clear dressing and there is blood under it that I am not suppose to touch! We go back to the surgeon on Monday morning to see how he healed. Then Wednesday we go to Childrens Hospital in Minneapolis for his infusion. I also have my own doctor appts next week too, so it will be a busy week for me.

I am also happy to announce to those of you aren't friends with me on facebook that we are expecting baby #2 in the begining of August! We are very excited and Jackson is excited to be a big brother. He thinks he also has a baby in his belly too, lol! I am a little nervous about having a new baby and dealing with all of Jackson's medical issues but it will all work out. And it gives us something exciting and positive to look forward to!

Surgery in 3 weeks

So last Wednesday we saw Dr. Vehe (ped rheumatolgist). We talked about Jackson's hernia and the need for surgery. Dr. Vehe wanted the surgery done in between infusions because he doesn't delay or post pone any infusions. However when we had the surgical consultation the next day with the surgeon he seemed to disagree and wanted to wait longer than 2 weeks and said he takes priority over the rheumatolgist. So surgery is set for January 17th! He said that because of Jackson's disease and the meds he takes he is high risk for infection! So I am sooo nervous. The week before surgery we will skip the methotrexate injection to help cut the risk down a little and the remicade infusion will be post poned until 2 weeks after surgery.
We also had a infusion on the 22nd that didn't go so well. I have never been so upset as I was that day! To sum it up without going into detail, Jackson was admitted to the hospital at 1pm and they didn't start the iv until 5pm!!! All I got was lame excuses and I can't wait to tell Dr. Vehe's nurse about the crappy care we got that day!
Jackson has been doing ok except he has had a cold for over 4 weeks now! I am going to take him tomorrow because that just seems too long! I know for a immune suppressed kid it probably isn't but we need him to get well so we don't have to post pone the surgery. Since we are already postponing the infusion by 2 weeks, postponing the surgery would just post pone that too and we just need everything to work out! Easier said then done, lol! He has been rubbing his eyes and knees a lot lately. His knees were red today but not too badly swollen. Mike and I also think that Jackson has gone deaf in his left ear. He had a ear infection in that ear 2 months ago and the infection got better but the fluid hasn't drained. Everytime they check it they say oh its just fluid but we have been down this road before! In 2008 Jackson had quite a few ear infections and fluid that would never go away but the doctors would say it was fine. Then one night his ear drum burst but they still didn't think he needed to be refered to a ENT. Finally I decided to refer him myself and the ENT doctor did a hearing test and he was sooo hard of hearing that his ear drums didn't have any vibrations from sounds at all! When they did surgery to put tubes in he said there was sooo much old fluid in there that he could tell was really old and yucky! They also found his adneoids were very large so they took those out too. After his surgery he didn't have any ear infections until 2 months ago and on Christimas day Mike and I noticed something coming out of Jackson's ear and it was his tube. So after tomorrow if the fluid isn't gone I will be asking for a referal to the ENT again!
Were suppose to see the eye doctor in 2 weeks but since I haven't made the appt yet and they book up pretty fast it might be 3-4 weeks. Next appt with rheumatolgist and infusion will be at end of January because of surgery.

Update

Oh what a terrible couple of days it has been for Jackson. Yesterday he had a eye appointment at The Childrens Hospital and that came with some bad news. The pressure was coming down but the cells were back in the left eye! So I guess coming off the pred forte and going onto FMX was not a good choice. However Dr. Bothun did not want to go back on pred forte because he thinks that is what was making the pressure go up in his eyes. He really believes Lotamax is the med he needs but our insurance will not pay for it. The pharmacy had previously called and they weren't willing to budge so now Dr. Bothun is writing them a letter. We are scheduled for a iv infusion next Wednesday, however Jackson has had a cough and runny nose for 3 weeks now so I don't know if he will be able to get the iv infusion next week or not.

To make my day worse yesterday when we got home my Grandma and I found a hernia in Jackson's groin area. He has been quite uncomfortable the last few days. Not sure if its due to cold, JRA, or the hernia I don't know. He also hadn't pooped in 2 days which is not normal for him. So I got him into a ped right away this morning. And to confirm my fear they said he is going to need surgery! I am so upset, how much can one little boy have to endure! It just doesn't seem fair especially at 3 years old! It just breaks my heart. So we meet with the surgeon next Thursday and will schedule the surgery shortly after that.

Thanks for checking in!

Sara

Happy Thanksgiving!

Hope everyone had a great Thanksgiving! We did! We went to Mike's family dinner first in the afternoon and then went to my familys at 4. Jackson had a great time playing with his cousins. on my side of the family Jackson is one of three boys that are within 1 year of eachother and they have the best time together! So this Thanksgiving I am soooo thankful that although my child is sick with this awful painful disease I am thankful that it isn't cancer or anything that he could die from! While he was in the hospital yesterday I saw a lot of sick kids and kids with cancer. In the room next to us was a baby that was probably about 3 months old and it was crying so hard for a good hour. So although I am mad that Jackson is sick and has to suffer with JRA and Uveitis I am extremely grateful that it isn't worse. I have so much to be thankful for this year! We have only been dealing with this disease for 9 months but it feels like it has been forever. Jackson is such a trooper, he runs and plays and you would never be able to tell by looking at him that he is sick. He continues to amaze me everyday :).

Yesterday was infusion day so we spent the entire day at The Children's Hospital in Minneapolis. My Grandma came with us, thank god because the weather was not in our favor when we left. The roads weren't terrible coming home til we got into Eau Claire. In Minneapolis we only had snow but in Eau Claire they had freezing rain and snow! We saw Dr. Vehe (Rheumatolgist) before the infusion and he checked out good. Dr. Vehe was a little stressed, he had another JRA paitent across the hall that was having heart issues and he was trying to decide if he should admit him to the hospital. Ahhh, these poor kids that deal with this disease. I love Dr. Vehe, he is so great and you can tell he truly cares about his patients! The infusion went good except for it taking forever to get everything going. But that won't change because he has to be admitted to the hospital so its a process. When they went to put the iv in the child life specialist tried holding the book in front of Jackson's face so he couldn't see what they were doing. Well Jackson kept trying to look and they kept being pushy for him not too. But I told her that he likes to watch and that he doesn't cry or get upset so they put the book down. And they were all impressed that he just sits there so calm and quiet while they insert the needle. He is such a good boy! He had lunch after the iv started and pretty much passed out sitting up while he was eating! So he slept almost the whole time. We had a shared room this time, last time we had our own. And the kid in the bed next us had 4 adults and 4 children crammed in our little room and they were being sooo loud. But what do you do! All in all the day went well!

Next appointments are in 3 and 4 weeks.

Sara

Good news and bad news

Jackson had a appointment with the opthlamologist at the Childrens hospital today. We got some good news and bad news. Good news is his eyes are CLEAR, no cells!!!! Yay I was so happy and relieved I could have cried! Bad news is the pressure is high in his eyes which puts him at higher risk for glaucoma. We were told that glaucoma and cataracts were a risk the longer your on the steriod eye drops. I am not pleased with this but sooo happy about the cells being gone! So as of now we are decreasing the steriod eye drops and hopefully getting off them completely soon. We will be re-checking the eyes again in 4 weeks and I am already nervous! I am a little nervous about being so happy because we have tried weaning off the eye drops before and they flared. But last time he wasn't on remicade or methotrexate so hopefully this time will be different.

I drove 3 hours round trip today for a 30 minute appt. We were in there for such a short time that the vallet hadn't even parked my car yet. So you would think since they didn't touch my car I wouldn't have had to pay but of course I did! Rip off that they don't have any free parking! Seemed like such a waste of afternoon but with the good news it was well worth it! Traffic seemed to more crazy today then others and we didn't even hit rush hour either way!

Next Wednesday is Jackson's remicade infusion which will be a 7 hour day since he has to be admitted to the hospital. But my Grandma is going with us so that will help keep me company since last time was pretty boring by myself with Jackson sleeping most of the time.

We are headed out to eat to celebrate the good news!

Thanks for checking in!

Sara