I’ve been looking for my camera cable for two weeks, to download all the pictures and video this update merits (don’t tell my husband, please.) I’m giving in and will just use words for now, and do a photo update later.
It feels like we have been in a wind tunnel for the past eight weeks. The high points have been record highs, while the challenges have been more pressing than our “normal”. We are hoping that calmer waters and lighter breezes lay just over the horizon.
The Good Stuff:
Isn’t this always the best place to start?
One week after turning 10, on August 23rd, Abbie received her first car. Well, it doesn’t have a license plate, but it was more expensive than my van…so I think it counts. And she relishes the idea that she got her own car way before any of her brothers did.
Her first power wheelchair is a sight to behold. As the technician from San Diego was putting it together, I said, “This is like the BMW of wheelchairs!” He answered, “This is like the BMW M3 of wheelchairs…I’ve never put one together that was this nice!” See what I mean about really needing pictures to do this justice?
The seat was custom-molded to her body, and is made of material that passes air through it, so it is really good for both her posture and her skin. The fine-tuning of both the seat and the chair were no small undertaking, however. Over the course of three days we spent 20 hours at the rehab department, making adjustments, checking the results, and making further tweaks. The programming of the electronics alone took a couple of hours.
The head controls on the chair will allow Abbie to drive her chair, but also to control the tilt and recline functions independently. She will be able to elevate the chair 14″ to be at appropriate heights in varying situations, and she will also be able to elevate her leg rests to give her legs and feet a break.
Abbie will be able to use the head controls to use a computer mouse, and to change the channel on the TV (she was excited about that one!). And, the wiring is in place for a future voice output computer that will allow her to more freely and completely express her ideas, thoughts and opinions (watch out!).
It seemed like a dream, seeing her in the chair. I guess I worked so hard on containing my hope during the requisition process, that I’m not sure I ever really believed she would get such a wonderful chair. The seating alone is going to change her life. Healthwise, it keeps her in a much better position for her spine and lungs. Breathing is better, alignment is more proper, and she gets all the support she needs not to “droop”.
Socially, though, it’s even better. Instead of sitting in a semi-reclined position in what looks like a stroller, Abbie now sits straight up, looks straight ahead, and looks every minute of her ten years. She won’t ever again have to hear “Mommy, look at that baby” when other children walk by.
It has a joystick at the rear of the chair that allows me to drive it. Using the chair independently will be a developmental process for Abbie. She hasn’t moved on her own in over seven years, and will have to learn how to maneuver once step at a time. I must admit, even for me, there is a learning curve to driving the chair. I am very thankful that the speed is variable, and you can usually find me dialing it to the “turtle” setting!
Loading Abbie, in her new chair, into our van…seeing her looking straight out the windshield at the wide world before her, instead of at the ceiling…an incredible high.
Things began to change the next day.
The last day of adjusting the chair was a Wednesday. Much of it was geared toward programming the electronics, so it involved a lot of just lying around for Abbie. The flow of the day masked the fact that she was not feeling very well. She finally got to drive the chair for the first time in mid-afternoon. She seemed a little tired to me, but was so excited by the chance to roll down the hall that she rallied remarkably. (I do have video of that first drive…will post it…someday)
As she was driving I noted she was a little flushed, but since she was so engaged in what she was doing, and it was so thrilling to watch, I pushed my concern to the back of my mind.
When we got home, her temp was 101.4. Rare for her to have a fever. By 7pm it was 103. It was a difficult night for Abbie, but around 4am her fever seemed to break, and I was hopeful this was a 24-hour bug I’d been hearing about.
By noon the next day we were at the ER, with Abbie on 5 liters of oxygen and a fever of 104. We rarely go to the ER, but when we do it’s usually a “rule-out” visit. I want to make sure she doesn’t have a UTI, or a junky chest, and get whatever she needs so that I can take her home. Hospital admission isn’t ever really my plan. This time however, I packed all my things to stay, because I knew, no matter what the diagnosis was, we weren’t coming home.
The doc on duty was the one we always see during our “rule-out” visits, and he breezed around the corner like it was another one of those. Upon seeing Abbie, he stopped, his faced changed, and he said, “Wow…she is really sick.” A few tests and pictures later….pneumonia. Admission to the PICU soon followed.
Abbie’s only gotten pneumonia once independently (2006) and once after a long surgery (2008), so I was disappointed in myself that I’d allowed this to happen to her, but even more so, I felt the ocean of fear lapping at the shore of my faith. ”This is what ‘these kids’ always die of…” swirled through my brain. I hate it when people say that — as if we need reminding, and as if, when the challenges come, the dark predictions are of any assistance.
The intensivist told me she was either going to get a lot sicker, requiring intubation, or she could possible just get better from here. Not a lot of assurance, but at least a flicker of hope.
Nothing could stop her fever from breaking through, and it stayed near 104 through the night. Blood work came back indicating it was most likely a bacterial infection. IV antibiotics were started, and sometime near dawn they took effect and the fever abated a bit.
I must tell you, though, as a woman generally ambivalent about Facebook, this experience changed my outlook on that and reconfirmed my esteem for you. I posted updates on FB frequently, beginning in the ER…and I have not experienced anything like the results since Abbie’s initial injury. As friends began to post their prayers, I could literally feel electric shocks starting at my head and running through my body. I would awake feeling it, and knowing we were being prayed for. I would be praying over Abbie, and feel it, and know we were being joined there. It was incredible, powerful, and humbling.
Thankfully, our strong, feisty, motivated girl chose Path B: the “Just Get Better” plan, and never needed intubation. She was discharged after 10 days, and went home with a new friend, The Chest Vest. This device, an inflatable band around her chest, hooked to two air hoses that connect to a box with programmed speed, pressure and time settings, has helped her chest become “clearer than it has ever been…ever” in the words of her pediatrician today. Woohoo.
A great recovery marker happened yesterday. Abbie finally got to ride Lizzy again. She had missed “her” horse so much! Her little body just melted into Auntie Pattie as they rode along, and I don’t know who was grinning more.
So, Abbie is in a good place again, with much to look forward to. I took Kyle to college at Seattle Pacific on 9/22, so it’s down to just five of us at home now. It is strange for us to all fit so easily into the van, but the twins are loving having their own bedrooms for the very first time.
Ray and I are off to Santa Clara tomorrow night for my college reunion. I absolutely can’t wait to see so many special people I haven’t seen since graduation…and two nights “off-duty” for both of us, with the added bonus of a visit with Chase.
More to come soon….with photos, I hope. So sorry for the long lapse. We were once again learning, in vivid color, about the faithfulness of God in the storm. I hate the situations, but I do love feeling Him nearer than I can when it’s sunny.
May His blessings be upon you today!