My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Sunday, November 6, 2011

Port surgery, MRI's & Joint injections, sedation twice in a week x 2 kids = DONE

I have lots to be thankful for and am so appreciative of our nurses and doctor's coordinating Jake & Hannah's appointments together.  But wow-- it was a hard week to have both children go through port surgery, sedation for MRI's and joint injections all at the same time!  We did it, the week is over and we all have bounced back like nothing occurred at all! Thank you to those who checked in on us during the week.

Port surgery overall went very well. Jake & Hannah both got their ports in the exact location we were hoping for and on the first attempt.  We had shared with the team that we don't want a port for Jake if he had to use right side- upper chest area! That spot was off limits. Jake is a hunter and the shot gun kicks back hard on this area! So when they both came out of recovery- we were pleased first attempts were it!

The nurse had determined Hannah was going into surgery first. This was fine for both of the kids. Neither of them were too nervous and understood this port surgery was going to help make treatments every 14 days much easier. All went smoothly in the pre-op, lots of questions to answer to the team. Amazing how many health professionals had no idea what JRA was and a zillion questions as to how we had two children both getting ports! As soon as Hannah got her first pre-op meds, she got sleepy and the TEARS turned on. I knew it was the meds- but it was still difficult to watch her get soooo restless and cry harder and harder each minute. I was able to go with her in the operating room until her eyes rolled back, body limp and surgeon arrived. I looked at the team- kissed my baby and said, "please take good care of my girl".  Walking away was hard, but I had to stay strong as Jake was waiting for me to come back!  Surgery was to take an hour and half....... Bobby and I entertained Jake as much as we could while watching the clock anxiously for Hannah to come into recovery. 

Surgeon stopped by in pre-op and shared with us , "Hannah is done". But we waited and waited until I can get my eyes on her. When I was able to be with her in recovery- O MY GOODNESS!! She was a complete mess! Her lips were purple and swollen, eyes swollen, and had very unclear speech and was crying uncontrollable while kicking and thrashing around hospital bed! Nurses very calmly tried to explain that she will come out, give her some time! We gave her lots of time, once she was able to speak, everyone heard what she had to say. " Mommy, please take me home, I want to go home, and I want Jakee". But as more & more time passed, she started to talk about pain while thrashing in bed, screaming & crying.  Nurses gave her morphine, then another pain med. Meanwhile, the anesthesiologist brings me my fancy blue jump suit/hat/shoes/mask and says, "it's time to go to O.R. with Jake".  I couldn't walk away from her just then..... I felt so torn to leave Hannah, but I knew Jake was waiting for me to go with him in surgery.  Thankfully, Bobby stopped by and said he'd take Jake and Jake was ok with that!  awhhh.....I slip away to run down the hall to find Jake on the stretcher on route to operating room. I give him a kiss and wish him good luck! I'm wondering about now-- why did I schedule 2 surgeries on the same morning? 

Bobby returns and shares with me Jake was a pro. Closed his eyes and curled up in a ball to go to sleep! Bobby just walking into seeing Hannah a complete mess- he's wanting to know whats wrong with her?? There was nothing we could do to stop her screaming & yelling and thrashing herself all over the bed. Nurses decided to move us to another area- as we wait for Jake in surgery.  As more time passed- Thankfully Hannah came out of her drug induced mess and then fell asleep for about 2 hours. Perfect timing for her to sleep- this allowed me to be with Jake in recovery room.  Jake woke up so calm and peaceful with some pain. Nurses gave him morphine and he was just full of questions about his port.  Jake had a drink and then we went to other area to be next to Hannah and Bobby.    Whew-- surgery done and now being escorted to infusion room for Jake & Hannah's treatments and rheumatology  appointment.

Jake & Hannah bounced out of their wheelchairs as they entered the infusion room to greet their friend, Gavin. It's always so nice to see familiar faces and share your journey with friends who understand it all too well! Assessing ports was a piece of cake! IV's were hooked up and it was by far the easiest day in the infusion room. I'm so happy I took the nurses advice and scheduled IV's immediately after surgery.  We kept kids ports accessed all week and they had plenty of pain meds in them to help with discomfort!  Hannah got her increased Actemra, Solumedrol and added Torodal today. Jake got his higher dosage of Actemra, solumedrol and Methotrexate.  Met with new physician, he was very kind and shared his thoughts of where Jake & Hannah might be heading.....  Discussed possibly adding another biologic to the current meds. He gave us two choices and wanted us to think about it as we pursue joint injections and wait for MRI results.  Today- he wanted to do multiple joint injections based on inflammation in Jake & Hannah's joints. He is wanting to do both kids wrists, ankles and knees.  We agreed to consider on Friday based on amount of inflammation. But we choose not to tell kids all week- they were already anxious about wrists injections.

Bobby went back to work- Kids and I stayed in Gainesville for the week.  We tried to do a little bit of fun and school work while recouping and waiting for Friday's appointments. We went to Natural Science Museum, Butterfly Garden, and Build-A Bear. Jake & Hannah both bottomed out very quickly and our outings were short. Jake was very nauseous, had absolutely no appetite all week and was not feeling well at all. I always try to figure out, WHY? I am thinking he had his methotrexate within 5 days of last dose and it may have made it sooo yuky! The highlight of the week was Build-A-Bear. We were able to get a port from hospital and make our own bear friend with her own port! The sales associate, Michelle,  was so nice and also has a friend who suffers from JRA. So we spent most of our time in hotel, snuggled up with our bears!

Friday has arrived- MRI's with sedation and joint injections should be no biggie!! Bobby has come back to Gainesville to be with us.

Hannah again was selected by staff to be the first to start MRI's. She was getting MRI of neck/spine/wrist and hand. All was good- UNTIL the anesthesiologist gave Hannah versed! Hannah immediately became relaxed and out in my arms. Carried her to the bed with Bobby and Jake following. Within seconds, Hannah began crying, thrashing around on the bed. The team began to watch her closely and added more meds through her port.They asked us to say bye and they'll get her settled.  I was giving her a kiss- and Jake was feeling like he was going to throw up. He made it to a chair and told Bobby he was dizzy and couldn't see. I walked into the room to catch Jake from falling out of chair. Yes- he passed out cold!  So there we are--- on the floor in the MRI room and Hannah a few feet away..."reacting" to her anesthesia meds! The anesthesiologist later came by to apologize and check on Jake. (He said he wasn't expecting her to respond that way.) Jake was scared when he came around. he told us that he was blind and he couldn't see it all. As he  layed down in a hospital bed and rested, tears began to flow..... He didn't want to be put asleep like Hannah and he was scared.  He also shared with us that "he went to heaven just for a bit." We assured him, he didn't go to Heaven and that is how it feels to pass out! And...most of all, he is going to be ok! He was full of questions- so we then had to explain that Hannah  reacts differently to anesthesia meds, and he will be perfectly fine!

Jake had tears rolling down his face, his face got red spots and before we knew it.....He was asleep and wheeled off for his jaw MRI. Bobby and I were escorted into the waiting room.......waiting for Jake & Hannah to finish their MRI's. Somehow-- joint injections were suppose to be coordinated while kids were still under sedation.  The rheumatolist and 2 nurses came passing by with their bucket of sterile goodies and shots! We were able to be present for Jake & Hannah's injections! Inflammation was down today- so Jake got both wrists injected and Hannah got both wrists and right knee injected. Joint injections were a first for us!! WOW-- didnt prepare myself to see kids JUMP and react even while under sedation! The team was great, very thorough and left us with Toradol script for both kids for 5 days.

Jake woke up pleasant, but in wrist pain. Hannah did not awaken pleasant and was totally out of control, AGAIN! Here we all are in the small MRI recovery room. I warned nurses and anesthesiologist....but they got to see it all first hand! A few nurses were patient, a few tried to calm her down and my husband simply thought I should be able to control her! Needless to wasn't a pleasant experience.  Jake was starved and had enough of her screaming, crying and kicking! So much for not using the injected joints......they were thrashing non-stop and hitting bed rails! I knew Hannah was not really there yet! Her speech was slurred, eyes not focused and talking about silly things here & there! I knew Bobby was embarrassed......I needed more time and she'd snap out of it!  Before I lost my mind.....Hannah came around and was pleasant as can be but in a lot of pain! We loaded the kids up and got pain meds filled as quickly as we could. Pharmacist I was reluctant to fill RX because of a counteraction with Methotrexate.  He called into Shands, but no return calls on a late Friday afternoon.  Finally, he gave us the toradol but made sure we understood the possibilities and to go to the emergency room if any symptoms occur.  Toradol  taken every 6 were hurting indeed!

Saturday- a new day! YEA!! Ports were no longer assessed and on their way to complete recovery! Injection sites were much less painful and we were headed back to home, sweet home! Happy to have this week DONE! It's a learning curve- and I will definitely schedule Jake and Hannah on separate days anytime Hannah has to have sedation! I am really hoping Hannah does not need any type of sedation  for awhile!  Now we await for MRI results, wait to see if joint injections will help decrease inflammation/pain in wrists and Hannah's right knee. Jake has his appointment in December7 for oral/facial surgery for jaw injections. And.....we're pondering around the thought of adding another biologic medication to the mix of current medications!

Thank you for those of you who follow The Sloan Siblings on their JRA Journey. It's a ongoing journey, always things a happening and always wondering "why". It simply never ends.... Hannah has now build up Methotrexate and she gets to deal  with severe nauseous/headaches/poor appetite and vomiting days after her weekly chemo med(.methotrexate). Zofran only helps so much- it's just heartbreaking to see her loose her spunk!  Jake continues to have his days were he simply isn't doing well , hurts all over and is a challenge to even eat! Jake's fevers were fewer for the first several weeks of starting Actemra- but they are back to several days a week, if not daily.  I am so proud of Jake and Hannah that they are capable of putting a smile on and not let this disease get to the best of them!   They both have huge hearts, eager to learn and love life itself! We don't know what the afternoon has for us or where this journey will lead us, but we try to remain positive despite the obstacles our family deals with everyday! Thank you for those of you who have kept us in your prayers, checked in on us and show our family support. You know who you are- and THANK YOU!  Our family strives to live life to the fullest and know better days to come! Right now, we are counting the days until we make our first road trip to Sparta, TN.

1 comment:

  1. I am so glad that this week is now in your PAST and I so hope and pray that the week's events somehow improve Jake's and Hannah's quality of life. They are two of the most beautiful children I know with equally beautiful parents. Your strength is remarkable and I am so glad to have you and your family in our life as we journey down the winding path of JA.