Last week I got a surprising phone call from the neurosurgeon’s office, telling me that they’d received the referral paperwork regarding the baclofen pump and wanted to schedule an appointment for the 26th. I assumed she meant January 26th…nope, they were able to get us in yesterday! I was shocked and gladdened to be moving forward so quickly.
I did not have anyone to go with me to pick Ray up on the way to the appointment. For the first time in all these years, Abbie was having a major respiratory event while I was driving to town. I was able to turn her oxygen up to 3 liters while driving, but I could not suction her. She was dipping down the the mid-80s on the pulse ox as my blood pressure rose, and thoughts of pulling over on the freeway rapidly filled my head.
Stopped at a light a block from Ray’s office, my heart was groaning from the stress of Abbie’s condition and from disbelief that it “had come this”…checking out a baclofen pump. God spoke to my heart and said, “You are not putting the pump in today, just go gather the information, go spy out the land.” That last part, about spying brought to mind images of the twelves spies sent to the Promised Land. My stress-induced retort was, “Well, Lord, this sure doesn’t feel like I’m looking at the Promised Land!” I promise, I think I heard a heavenly laugh, and then heard, “Well, what exactly do you think those twelve spies thought as they peeked down on giants in the land??” Oh yea….gotcha! I could almost hear Joshua exhort me “Be strong and courageous, be very strong and courageous.”
Dr. M, the neurosurgeon was wonderful, and spent 45 minutes with us assessing Abbie, answering questions, and giving detailed explanations. He was concerned about Abbie’s need for oxygen, but I just didn’t have the stamina, and did not want to consume appointment time to explain her healing cycles that come at specific times of day as a result of the many things we are doing. He does think Abbie is a great candidate for the pump, and that it would offer much more relief than oral baclofen with significantly fewer drug side-effects.
The oral form is starting to really kick in as far as loosening her muscles, but I do think she is starting to become a little more glazed and less responsive. Dr. M. has placed about 100 pumps, and when I asked how many families who had had a good trial (where they inject a dose into the intrathecal space to see if the medication will work), were then dissatisfied with the pump because the results were not as good as the trial. He thought long about that, and then said he didn’t have any patients in that category, and that all the families were very happy with the outcome.
Ray and I both really liked Dr. M, and agree that the pump is the best option for Abbie right now. Dr. M. agreed that it may be beneficial to have it placed before her hip surgery so that she is as comfortable as she can be during the recovery. So, in the next couple of weeks he will be determining the best physician to do the trial with us, as well as the best one to manage the refills and dosing after the pump is placed.
I am excited and relieved, which surprises me. I guess I should have known that sometimes the Promised Land lies underneath some intimidating obstacles with ugly faces. I also realize that what God promises is not taken by force, but by faith. In that faith, with much reassurance, we are going to move forward to the next step in Abbie’s journey. I don’t have any sense of when we could actually do this procedure, but I am hoping to have it done by February.
Please pray for Abbie who will be very busy cat-sitting over the next few days to allow the rest of us to go to New Orleans for the Sugar Bowl. We are THRILLED for the chance to go support our beloved Warriors, but Abbie was getting kind of sad with all the excited travel talk flying around. Once I “got it”, I realized we had to turn the situation into a positive for her. Taking care of Grace was the answer. I mentioned this to her physical therapist a couple weeks ago, and she responded by giving Abbie a “Kitty Sitting Survival Kit” for Christmas. As I would pull each cat toy out of the stocking Abbie would grin and cluck. She also bargained hard with her Daddy, working him all the way up to $5 per day — talk about a push-over!!
Please pray for her nurses and friends who will be caring for her in our absence, and pray especially fervently that she stays healthy. Times like this give me temporary schizophrenia…I am so excited to experience this with our boys, but I hate to leave her here and wish with all my heart that she could go with us.
I didn’t write much about Christmas because it is a very tender spot for me. Still painful. Still blessed. But, I hope that you had a wonderful celebration of the Savior’s birth with your family and friends. I prayed much during Christmas, mostly simple short prayers of “Help me” and “Hold me together”. I marvel at the fact that without God’s willingness to become that little baby, I would never have had a bridge over which to carry my prayers, no matter how feeble, to the foot of God’s throne. I cannot fathom surviving without that relationship.
Will update after our return from New Orleans. So, “Hau’oli Makahiki Hou” from the entire Vara Ohana. May you be abundantly blessed in the New Year. And, GO WARRIORS!