We've had a very busy 48 hours. It's nice to finally sit down and have a chance to catch my breath.
The craziness started on Thursday morning...
It started like any other Thursday with aqua therapy at 8:30 am. I then took Ella to IKEA and The Container Store, trying to find some organization solutions for the giant piles of medical supplies that are accumulating around our house.
Ella and I then headed to Chicago for an appointment with her neurologist's nutritionist at Children's at 1:00pm. The appointment went very well. We discussed the new amino acid diet that Ella is on and the nutritionist was very encouraged to see that Ella is no longer sweating at all during the day (and much less at night). Ella's energy levels are also returning to what they were prior to her RSV and pneumonia. We're so happy to see that this new diet is allowing her body to digest the nutrients more effectively!
While we were at Children's, I got a phone call.
From Children's.
It was the sleep lab telling me there was a cancellation for a sleep study that night. After Ella's hospitalization last weekend, she was placed at the top of the sleep study cancellation list because we've been concerned that her BiPAP settings might not be optimal for her. But she needed to have a sleep study performed to try different settings.
From Children's.
It was the sleep lab telling me there was a cancellation for a sleep study that night. After Ella's hospitalization last weekend, she was placed at the top of the sleep study cancellation list because we've been concerned that her BiPAP settings might not be optimal for her. But she needed to have a sleep study performed to try different settings.
So I made some quick phone calls to the pediatrician's office (getting referrals in place) and we headed back out to Naperville to pack up Ella's belongings, machines, etc. After saying a quick hello to Michael when we were home, we got back in the car and went back to Children's.
When we were about 10 minutes away from the hospital, I got a call from Michael saying that the referral for the sleep study was for the wrong hospital! And it was after hours, so we couldn't call the pediatrician's office to make the correction. The sleep lab said the only way we could have the study done was to pay for it ourselves upfront (yeah...not so much). Luckily, our pediatrician gave us her home phone number a while back (she rocks!) so I was able to call her and she made everything happen for us (she REALLY rocks!).
We got to the sleep lab and Ella got hooked up with all of the electrodes and she fell asleep around 10 pm. They tried the different BiPAP settings that we requested and she tolerated them well. We are still waiting to find out the results from Ella's pulmonologist.
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| What a GREAT way to travel inside the hospital...thank you for the wagon, Families of SMA!! |
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| I showed this picture to Ella and asked her who it was and she said, "Monkey!" ha ha :) |
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| Ready for bed. |
We got up around 5 am and I had to replace Ella's ng-tube (I had to take it out the night before for the study). We gathered our belongings and packed up Ella's Bi-PAP machine and we headed back to Naperville.
Shortly after our arrival at home (and after Ella got a bath to clean off all of the goo from the electrodes), we got back in the car and headed to the New Lenox branch of Children's Memorial Hospital Outpatient center. We met with the surgeon who will be placing Ella's g-tube. She has to have an upper GI test done prior to the surgery, which will take place next Thursday (3.15.12). Her surgery will be on Tuesday, March 27th at Children's. We will plan to stay in the hospital at least one night, assuming everything goes well.
We then ran a couple of medical-related errands before returning home again in time for occupational therapy and then Ella's nap (during which time I was on the phone with doctors, nurses, receptionists, etc.).
When Michael got home from work, I was able to take a little break and go pick up my new glasses (mine broke in half the other day...go figure!).
When I got home, my mom had arrived with Ava and Henry...did I mention that my parents had them at their house since Wednesday night? Yeah, they TOTALLY rock.
Michael and I were then off to the appliance store to purchase a new range and dishwasher (we've been without a stove/oven for over a week and our dishwasher hasn't been drying very well for quite some time). We got back home in time to do Ella's cough treatments and get the kids to bed.
Finally, this morning we had an appointment at Mobility Works to get the final quote for the car modifications. Our next step will be to go to the Honda dealer to get the quote for the car. Once we purchase the car and bring it to Mobility Works, it will be another 4-6 weeks until it is completed. But we're getting close!
So that brings me here. Sitting on the couch, catching my breath. Henry and Ella are napping, my sister is making Shrinky Dinks with Ava in the kitchen, and Michael is helping my brother-in-law make an adaptation to Ella's small wheelchair that will help give her the extra trunk support that she needs :)
After I finish writing, I am going to attempt to start making room in our house for our ever growing mountain of supplies and equipment (by purging our house of anything and everything that isn't necessary...which is A LOT!).
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| Just a few of the things that we need to make room for... |
And after I start making a dent in the home reorganization, I am looking forward to hopefully having some much needed down time in the near future :)
