Fourteen days flew by so quickly.....we were back on the country roads heading to Shands for another round of infusions. Hannah had another day at Shands that she considers one of her worse days ever. She even told me that she can't wait for "eternal life". I ask her why, Hannah says" because I will be pain free and no more needles"! So today the nurses were not able to find a good vein and searched for a very long time, recruiting other nurses opinions as to where they should attempt. Hannah got so incredibly upset after the first attempt failed. She made up her mind that she was not going to sit still or give them a arm at her will. We gave her a few minutes to calm down as I then switch over to Jake's chair to help him get his IV's started. He was unsuccessful first attempt, too. As the nurse digs and pokes around at another vein on Jake, Hannah is able to get the words out," Mommy, please take me home". There was no other place that I'd rather be than home. I knew what was going to happen next....... The nurses got Jake's IV's flowing and then I carried Hannah out of the infusion room to a private room where she was made a "TACO". Blankets were wrapped tightly around Hannah's body expect for her one arm where the IV would be inserted. Three nurses, child life specialist and Mom held Hannah down as TIGHTLY as we could until her IV was inserted. She screamed so loudly and was hysterical! My heart broke because she begged me over and over again, "Please mommy, take me home". When we got back into the infusion room, Hannah was exhausted and worn out! Bravery was not there today for Hannah!
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| Jake is my Super Star! |
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| Hannah is NOT feeling up to infusions today! |
Dr. E and the entire 4th floor heard Hannah! Dr. E could tell by looking at Hannah that she isn't feeling well. Unfortunately, we realized that the med orders didn't get picked up and Hannah didn't get her Actemra increased today like Jake did! So .... we will wait another 14 days for increase of Actemra. Meanwhile- Dr. E wants to add Leucouvorin, increase Celebrex, and add Toradol. Dr. E also wanted to add right hand and wrist MRI when Hannah gets her MRI of neck this month. The plan is also to do joint injections in Hannah's wrists when she is sedated for her MRI's. If Hannah didn't like the IV in her wrist, then I am sure she will not be thrilled to have a long needle in her wrists!! Dr. E also talked to Hannah in great detail about not using a pillow at night. Hannah expressed she can try to use her bear, Precious, to hold her ice pack under her neck, but she couldn't wear her wrist splints and no pillow at night!LOL- hard to convince a little one that these interventions will possibly help!
We were able to finish IV's and see Dr. E just in time for our surgery consult apt. We walked in the door knowing it was time for Hannah to explore getting a port. The nurses and md certainly shared with me...It was time! But I had a lot of reservations for Jake, and Jake did not want any part of discussing a port for himself. The nurse practitioner was so helpful and answered my zillion questions! Jake was relieved that he can still "work" and carry firewood and ride his 4-wheeler, and swim in Dale Hollow Lake. The surgeon was hopeful and felt it was something we needed to do for Jake & Hannah. No rough playing, no contact sports and I officially wear another hat! My hat is the Port Police hat! The md strongly stated this was the most important job-- be sure anyone who touches my kids port has experience and is not sick and using nothing but the BEST sterile procedures to help reduce infections! So..... October 24 at 7am.....Jake and Hannah will BOTH be getting a port placed. We hope the port will be on upper left chest area- but we won't know until the port is placed and Jake and Hannah are out of recovery! Jake & Hannah will go straight to the infusion room to get their infusions with their NEW PORTS on this same date!!
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| Hannah crashes in bathtub after getting home from a VERY long day! |
Meanwhile- we keep going everyday! On a positive note- Jake and Hannah both had their first body massage. They loved it and we will definitely be scheduling more in the future. Waiting for Shands to call and schedule the remaining appointments for Jake and Hannah. Looks like October is a busy month for the Sloan Siblings! Jake will be getting a MRI of his jaw and joint injections of his wrist and ankles. Hannah getting MRI of her neck, right wrist and right hand and wrist injections, too. It is so CRAZY that Jake and Hannah are so similar in so many ways! Even their sed rates are almost always the same! We will also be getting a different Hospital Homebound teacher who is able to come during the days. A little anxious about a new teacher- Ms. Nancy understood so much and I never had to explain a thing! I will still say it is very difficult to explain to others from the outside who are trying to look in. I am so PROUD of Jake and Hannah for putting a smile on and doing their best and keep going! What people don't see......is simply heartbreaking!Hannah has been feeling rotten lately, Jake has lost 2 pounds in past 2 weeks and has had severe abdominal pain and doesn't feel the greatest either! This disease is very draining and frustrating! What I'd do to have an opportunity to have 2 healthy kids! Praying we made the right decisions...... and hoping to reduce pain and get this disease a tad bit more under control! Jake and Hannah are truly my HEROES!
I am curious what dose of Actemra your children are recieving. 12Mg/Kg has done exceptional things for my daughter.
ReplyDeleteYou're blog is really heart-breaking, such beautiful children.
Have you considered Cytoxan ? I have heard that remarkable results are being acheived with it in other auto-immune diseases and that SJIA is also being treated with it in some, cutting edge practices (Dr. Lehman in NYC for one)
Hello. Appreciate you sharing your knowledge of Cytoxan. No- kids have never tried this nor has it been mentioned. Jake is on 325 mg of Actemra every 14 days. Hannah will be increased to 300 mg in 2 weeks. Hannah is 54lbs and Jake is 58 lbs. Im glad it has worked well for your daughter. Finding the right drug is tricky! We've tried most of them! I hate that we are on the latest and last drug and not seeing the results we had hoped for! We love our doctor and am thankful she's in Florida. Long days (3 hours each way but well worth the drive). Hope your daughter continues to do well on Actemra. Has she had much abdominal pain on it or other side affects?? Thanks for sharing, again!
ReplyDeleteI have heard that Lehman has tried it, can't say I know the ages of the patients.
ReplyDeleteBased on the SJIA guidelines outlined for Actemra, your children should be on doses you have mentioned.... were they doing alot less before ?
Ellie started at 12Mg/Kg right of the bat and we saw instant results. I really hope and pray the higher dose is the answer for you.
She's had some weird GI stuff, acompany the Actemra, but she was never right to begin with. Removing prevacid, and mobic, seemed to make a positive difference, as well as Magnesium, Vit C, and Calcium. Its hard to say just what causes some of the GI stuff, my suspicion is that Actemra is a contributor but not the lone agitator in my daughter's case.
You're children are beautiful. I know what you are going through. Its quite painful for me to even read.
Do they have GI issues also ? Prior to onset ?
Thank you- it's amazing they look so healthy are most always are able to keep a smile, but soooo much going on everyday that their little bodies fight hard!
ReplyDeleteHannah has always had GI issues- but weirdly abdominal pain is better in past few months. I say better- but no where are symptoms are gone! Much more manageable! She had upper/lower scopes last January, but Crohn's was ruled out! Jake has really just started throwing up, diarrhea, and abdominal pain in the past 9 months or so. Md has discussed scoping him...I am waiting until we have to!! Who wants to put a child through all that?? I try really hard to keep his weight stable- although he is underweight!
I'm sure you are the same-- keep on going and never give up!! We take hour by hour and it changes so much throughout a day! I am always trying to figure things out and understand this disease??? Such a frustrating disease and so much is unknown and no treatment!!
Yes, they do look healthy. How much pred are they on, is it daily
ReplyDeleteMy daughter was around 10Mg/day before Actemra, and it was sad what the pred was doing to her, as well as what the disease was doing. She is on 1.5Mg/day now and looked to be headed for zero until she caught the croup virus 2 weeks ago. Her hair, skin, muscles, everything is recovering day by day.
I am convinced there is an gut link in my daughters disease. All 4 of my children started having GI problems around the same time, after eating repeatedly from a malfunctioning fridge (we did not realize it at the time). Anyways, all the kids had problems, and shortly after Ellie had her onset.
Even now, every time we see a flare it is preceeded by GI abnormalities, she does this weird gulping thing, and then bathroom problems next, and then arthritis.
We are doing alot of investigating of our childrens stomach contents, and are finding concerning stuff.
I'll never be able to let go in my hope to find a root cause. We are grateful that Actemra is buying us some time. I really really pray the higher dose is the answer for your little ones.
:(
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