Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, April 26, 2015

The week that Dean left town

Audrey and Abel had their surgery on April 7th.

On Saturday I took Angela shopping for her prom dress.

On Sunday Dean went down to Arizona. His parents own a condo there and that's where they spend their winters. Dean was helping them pack up then help them navigate the airport and fly home.

On Monday morning Angela got up from school very pale and running a low-grade fever. She's had a bit of "Monday-itis" several Mondays in a row, only she is truly not feeling well. (Its very odd and makes me wonder if there is something in the house she's reacting to.) Anyway, I kept her home and she ended up sleeping all morning. About 10:00 Axel's teacher called and said he wasn't feeling well, and neither was his interpreter. Around noon Angela woke up saying her head and neck hurt really bad, and she didn't want to turn her head at all. She also didn't want to wear her glasses, I think because of the migraine. It was time for us to visit Dr. Mary.

On the short drive over Angela started acting very strange. She was moving her hand in front of her as if she was wiping off a window, "My eyes is foggy." she kept saying. I took this to mean her vision was blurry. Then she started talking NONSENSE and doing a weird shaking with her head. I asked what she was doing. "I don't know. I'm shaking my head but I don't know why."

When I got her out of the van we started walking to the clinic door when she dropped to the pavement. I tried telling Axel to run in and get someone to help but he didn't understand what I wanted. After a few seconds she was able to stand back up though I was supporting a lot of her weight. I waived at the receptionist and said, "We're going straight to a room!" and kept walking.

In the exam room we got her up on the table so she could at least lie down. Her temp was still 101 with Tylenol and still she complained about her head and neck. We did some blood work and a strep test, which was clear. However, the doctor looked in Axel's throat and he had a real mess going on in there. He tested positive for strep. Given Angela's history the doctor wanted me to take her to the hospital, and she called ahead to let them know we were coming.

She was in bad shape when we got there. Her blood pressure was down to 60/40 and she was extremely dehydrated. (The ER doctor later told our ped. that we should have been transported by ambulance but her blood pressure wasn't that low in the clinic.)

We ruled out all kinds of things, including leukemia since her white count was at 28,000, in order to arrive at doing a spinal tap to test for Meningitis. Although three doctors had listened to her chest by this point, and all said she sounded clear, the ER doctor decided to do a chest X-ray to rule out a sneaky case of pneumonia.

And he wins the prize!

Unfortunately that hospital had no beds open so Angela was transported by ambulance to the partner hospital. Angela is all about medical stuff, and ambulances, etc so she was thrilled to get a ride!!! When I arrived there a short time later two doctors were in her room. That's when I was informed she not only had pneumonia, but a quarter size "pocket" of something they could not identify. It did not look like a mass, but some type of fluid. They asked if she had been exposed to anyone with TB. They also asked how long Audrey had been home. It was one year last month. Both doctors exchanged looks then wordlessly left the room. When they returned a few minutes later they were fully gowned, had face shields, gloves and booties. They didn't *think* she had TB, but it was possible and they weren't taking any chances.

So let me recap a bit: Angela is admitted to the hospital at what ended up being 2:00 in the morning. I had four kids at home, one of whom tested positive for strep. Dean was out of town. Luckly of all the kids to be hospitalized it was Angela this time. The one who always says, "Just drop me off at the door" and is disappointed when she doesn't get admitted!

As it turned out all the kids ended up testing positive for strep. I had my pre-op physical and begged my doctor for antibiotics so I wouldn't have to cancel my upcoming surgery. Dean came home in the early morning hours on Friday. On Saturday Angela was very disappointed to discover she had missed her prom, and on Sunday she came home.

The final verdict of this hospital stay is this was a bad episode of aspiration pneumonia. Angela's swallow has gotten MUCH worse, and we need to get her back to Boston to visit Dr. Nurko. He is the only doctor in the country who will treat Angela and her Cricopharyngeal Achalasia. The pulmonologist here, who works with people who have achalasia of the LES, doesn't want to touch her because she is high risk. The Pulmo here, who trained under Dr. Nurko and now has a manometry clinic here said no, Angela needs to back to Boston. ASAP.

Insurance says no.

I spent the past week both recovering from surgery and arguing with the insurance provider about getting Angela back to Boston. Guess what I'll be doing more of this week?

Long overdue updates

I don't know how many times I have come to update, only to realize I have no idea where to start. There is SO MUCH going on in the Garden!

I guess I'll start where I left off.

Here we are, 4 1/2 months into 2015 and our life is not looking the way I pictured it. There are already surprises, changes of direction, and "Oh my gosh!" moments that cannot be anticipated years in advance. Thankfully Dean and I are pretty "go with the flow" people!

In February I posted about an upcoming surgery Abel and Audrey would be having. The same exact surgery for both of them. Audrey needed one knee and both ankles fixated, and Abel need both knees and both ankles. The surgery went well, the recovery a bit interesting.

Abel's surgery was done first. Given his history of being very combative when coming out of anesthesia the staff had Dean and I go back to the recovery room long before he was awake. Ours were the first voices he heard and the first faces he saw when he opened his eyes. He didn't complain much about pain (and he is one of our kids who DOES tell us when he is in pain.) A short time later they told us Audrey was starting to wake up in the next cubicle so Dean went to be with her, since she is a total Daddy's girl!

We had driven separate, thinking that one of us (probably me) would go home with Abel who was ready first. It is always good to be flexible with your plans! HA! Abel said he had to use the bathroom so Dean and I wheeled him over. The dr. said there were no restrictions and he could stand and walk if he tolerated it. Dean and I each stood on one side of him holding him under the arms as he stood up pretty quickly…and promptly fainted. And then threw up.

There was no walking after that.

When Audrey was done and ready to go home she was not at all willing to bear weight, so we wheeled them both out to the van and got everyone loaded in. Abel constantly looking like he was going to pass out or throw up. It took both of us to get Abel into the house and to the couch, but it didn't take more than an hour before he started hobbling around, and throwing up anything we tried to give him. Within a couple of days he was walking normally again.

Audrey was another story. It took her nearly a week before she was willing to put weight on her legs. Her right ankle was swollen for days, but even when it went down we couldn't get shoes on because they rubbed on the incision.  Her foster family in Serbia had sent Serbian house slippers along. They are much more flexible and zip up the side. They are cut just right so they didn't rub on her incision at all. Three weeks out there are still some mornings when she's a bit stiff and sore but once she's up and moving she's fine.

The kids have check ups with the orthopedic surgeon this week for X-rays and to check progress. I'm curious what he has to say about the occasional swelling that Audrey has. With all of this I decided even if they're ready at the same time, there is NO way we are doing the four weeks of casting ankle to hip at the same time. Having two, simultaneously, who could not bear any weight was too much for this mom. Lesson learned!