November 19, 2018

I can’t believe I have had an opportunity to sleep and I haven’t taken advantage of it. Finding time to get good sleep in the hospital is basically nonexistent. Even when I’m able to sleep well, I wake up regularly after dreaming an alarm is going off or of Annadelle calling my name. Now I find myself creating an entire blog and watching Forensic Files rather than getting some much-needed sleep. Can you imagine when we finally make it home and have an opportunity to actually sleep in? In our own bed? It’s crazy to think about it right now. I feel like I don’t remember “normal” life before TM.

When I spoke with our BCBS case worker, she mentioned speaking to a mental health professional. I thought she was referring to Annadelle because of everything she has been through already, but the case worker said, “No, I meant for you and your husband.” I was shocked at what she said, but now that I’ve had a chance to think about it, she’s right. All of this has taken a toll on our emotional self and even our physical self. Initially holding strong in our marriage, I will admit Chris and I have argued much more the past two weeks. We seem to be unraveling at the seams due to the stress and uncertainty of what the rest of our journey with TM will look like. We know we have to stay strong in our faith and are consistently asking God to grant us patience and comfort, and most of all complete healing of our sweet girl.

On a side note, dealing with all of this has caused me to take a step back and re-prioritize my goals. Things I thought were important to me two months ago are suddenly not important and I’ve managed to look at life in an entirely different manner. I’ve found myself suddenly not concerned about petty arguments on Facebook or gossip about someone I barely know. I had asked God to make me a better person, and I’ll be damned if He didn’t do exactly what I asked. Be careful what you pray for because God might just grant your wish! 


11:00am

I got a call from the Kennedy Krieger Institute in Baltimore this morning regarding inpatient rehab. The rep that called me was super sweet and took time to answer all of my questions. She told me they won’t have a bed available until mid to late December and they highly recommend we go to Children’s of Birmingham if a bed is available now. She explained that we could always come to KKI later for inpatient or outpatient therapy and explained how all of that worked with insurance. If anything, I was glad to be speaking to someone knowledgeable about Annadelle’s condition who would easily explain how we needed to navigate everything. The conversation with her inspired me to put some helpful information for other parents seeking help on this blog, so I’ll update a page on that at a later time.

Right now we are waiting to hear whether or not Children’s of Birmingham has a bed come available over the weekend. If so, there is a possibility we could be leaving tomorrow morning, probably early since the ride in the ambulance would be around 5-6 hours. I was told they like to get a patient there as early in the day as possible so that PT has a chance to evaluate her upon arrival. Otherwise we may “eat” a day of paid inpatient rehab.

Speaking of rehab, Annadelle did well in PT and OT today. Miss Kelly, Kaelin, and Aly we’re back today and Annadelle was a lot more playful and cooperative than she has been with other PT’s. All of the PT’s and OT’s have been wonderful, but Annadelle has been with today’s staff more than anyone and tends to “show off” around them. We sure will miss them when we are gone.

Dr. Maertens came by to check on Annadelle. He stayed for a while which is pretty unusual, but he seemed pleased with her progress. We talked about the possibility of going to KKI in the upcoming weeks and he was happy that we had chosen to go there. He believes she will have the best chance of recovery at that facility, not only because of the staff and equipment, but also because of the possibility of stem cell therapy. He wants us to keep him updated with her progress in the upcoming months.


5:30pm

I am so dumbfounded right now that I really don’t even know what to say.

We got word from Children’s of Birmingham today that we have been accepted, but they can’t tell us if they will have a bed available tomorrow or not. They will not let us know until around 7:30am tomorrow morning.

In the meantime, our social worker is trying to arrange transport via ambulance from Mobile to Birmingham. Our insurance requires us to use an in-network ambulance service. There are 3 services in the network but none of them travel more than 25 miles outside of Mobile. Blue Cross basically wants us to arrange for our own ambulance service, but we can’t do that until we know if we have a bed tomorrow or not.

The kicker is the craziest thing I have ever heard: Even if they do have a bed tomorrow, they won’t wait on transport. For example, if we are able to arrange transport in the morning but it would take a while for them to get to Mobile and then to Birmingham, COB could give our bed away!

I’m simply confounded. My head hurts.

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