We had our clinic visit this afternoon as well as Maggie's orthopedic follow-up. I think I was a little too optomistic in my planning the two visits back-to-back, as we ended up not completing our clinic visit before our next appointment. Maggie's CBC allowed our minds to calm for another month as she is still right on track.
Her IGG level (an immune system test) was below where they wanted it, so that ended up being an extra 2 hour plus infusion. This infusion (along with the pharmacy taking over an hour to bring up her Pentamadine) ended up giving us a chauffer (wonderful nurse Sharon) to our orthopedic appointment while Maggie's infusion completed.
With Maggie's immune level being lower than they wanted, it has postponed her port removal. Maggie needs more time to recover her immune system. She may need more IVIG infusions in the future and Dr. French wants to give her several more months of her anti-pneumonia infusion. It is easier to access her port than it is to give an IV, so for that we will wait another couple of months. Dr. French did decide to take Maggie off of one of her prophylactic medicines that we think is causing all of these skin issues. Hopefully she will be okay minus her anti-viral medicine and being off of this medicine will cure some of these weird skin issues.
Finally, at Maggie's orthopedic appointment, they took her cast off. She was afraid of the machine that cut into the cast, but did very well. They decided to not do another x-ray and manuevered her leg and foot in a way that if it was hurt, she would have felt it. The doctor asked her to stand up and she refused, saying she would do it at home. She kept her word and when she got home, we put her shoe on her and she was up and walking once again while holding her walker. We are very nervous though that she might fall down and re-injure her leg, as she does appear a bit weaker and wobbly. We really want this vicious cycle to end.
Thank you for your prayers. We are very happy that Maggie continues to be a healthy little girl and we pray this continues forever.
3 comments:
Thanks for sharing this additional assurance that Maggie is on the right track. Both with her tests. And her walking.
Love and prayers always.
Great Aunt Phyllis
Thinking of you and wishing strong healing for Maggie's leg....you are all just so wonderful...a lesson in patience we can all learn from you:)!
xxooo
Melissa WM
So glad that Maggie is up and moving again. We will pray for healing and safety from the cold season that is approaching.
Love you all,
Nat
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