If you don’t have anything nice to say, sit in the corner with me. Wait that’s not it. But really, we’ve hit a few snags in Isabella’s care the last few weeks and I didn’t want to dwell on them here. Maybe for my own sake I need to focus on the positive and the success stories. But I think we are back on track so here is catch up! At a high level, outpatient IVIG setup was delayed, she started to regress again. After possibly 40 phone calls she ended up getting admitted again at her follow up appointment. She received two treatments inpatient and thanks to our benefits contact at work the outpatient mess was worked out.
The plan is weekly for four weeks. Every other week for 3 months, then revisit frequency depending on how she is doing.
She had her first of four weekly treatments on Good Friday. It went great!
We traveled to Kentucky. She woke up at 2:00 am with a fever spike. We were unsure if she was just two year old sick, or reacting to the treatment. We spoke with the on call Dr at her hospital as well as the Dr from the outpatient clinic. Both said it sounded unrelated and to just treat the fever, but to call the hospital back if it persists. (We are always supposed to let her team know of a persistent fever, this just happened to be her first one.)
Sunday morning the fever kept returning, was less responsive to meds, AND her lymph node was swelling. A quick phone call while packing and we headed to her hospital.
Between the out of whack immune system and the daily steroids no one was sure how her body would react to what now appeared to be an infection. Long story short she had a retro pharyngeal infection unrelated to the IVIG which might have been more manageable under different circumstances, but for Isabella it escalated quickly.
She was admitted. Again. Imaging and IV steroids to help fight it. Infectious Disease and ENT monitoring, Neuromuscular and Rheumatology also weighing in. Since this was her first instance and it responded well to antibiotics we were able to get her home by Wednesday. If these reoccur, we may have to test for Sjogrens and consider if another autoimmune is compromising her salivary glands.
HOME! This involved a long list of helpers because at one point the 5 of us were in 4 cities in 3 states. We are a mess to see up close and probably exhausting to love. But thank goodness for our network near and far. All hands were on deck.
Isabella continued to improve and was able to go to her second weekly outpatient IVIG Friday. She came home happy and healthy. And no signs of reactions or fevers this time. AND SHE’S GETTING STRONGER!
Today is a new day. A hopeful day. We can’t wait to watch her grow, and can ride the ups and downs. The good news is we’ve learned no matter what comes we can get through it. With a little humor and a whole lot of helpers!
Peggy Buis said:
God bless your family!
Joyce Manson said:
Continued prayers for all of you! 🙏🙏🙏
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Betty Cooke said:
Amazed at your faith, which God is using in many lives, so thankful the insurance issue has been worked , and thankful for all your helpers….here in Florida, your prayer support team is active and we support you and all of the fsmily❤️💙💚💜🙏🏻🙏🏻🙏🏻🙏🏻
Donna Costanzo said:
So glad that all finally went well. God has a plan. What a trooper she must be, to go thru all of this. Prayers continuing for her.
Amy McClung said:
I have been following your story and wanted to let you know I pray continuously for you and your precious family. You had already been through so much with the twins and my heart aches that you have to go through all this with Isabella. I think God Blessed you with these special children because only YOU would have the unending fight, strength, and Faith to help them!! You are one amazing woman and the ultimate Mother!! Though you must be mentally and physically exhausted, you soldier on for answers……for you and for your children. Please try though to take little pieces of time for yourself….. a bubble bath, a pedicure, reading a few pages in a non medical book lol! You need and deserve these times!
Continued thoughts and Prayers are with you and yours daily.
Ps Your wonderful Sister In Law Brittney was my Aquatic Therapist back in Morgantown, WV
Bless you all Your precious babies
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Lisa Lockhart said:
You always have such a great attitude during such a stressful situation! So very thankful that you have angels here on earth to help you with your precious children:)