Things seem to be improving slowly but surely for our sweet girl.
She was able to get a little sleep last night, although we did wake up a few times to do some inline suction. She is growing very tired of the suction now. Initially she was doing well with it, but now she cries each time it is done. I know she is ready for this ordeal to be over, as are we. We don’t know how to describe how awful it is to see her in such pain and not be able to help her.
Last night Nurse Mary let her “push” her meds into her duo tube in an attempt to raise Annadelle’s spirits...and it worked. You have to remember she is very weak so she isn’t doing much actual pushing, but she feels like she is. Not only is she “pushing” her own meds through the duo, she is also suctioning the spit out of her own mouth as needed. The nurses and therapists can’t get over how well she is doing being minimally sedated and alert on the tube and, moreover, how independent she is regarding her own care.
Chris and I didn’t get much sleep last night, so we are showering and “taking a break” while Dorothy Faulkner Selke, Brian Selke and Hayden Faulkner help Annadelle in the room. I asked Dorothy for an update prior to writing this post and she told me Annadelle made Nurse Lindsey help her “push” her meds, too. Dorothy told her she’s going to be a nurse when she leaves here!
Thank you for the continued support and prayers. We owe all the glory to God and trust in His promises. He will heal our girl and put us in the path of those who may be able to help get us where we need to be. We are continuing to follow His direction and we know we will see Annadelle healed because of it.
Annadelle did well with PT today, although she really didn't want to. Sometimes she does a lot more with us than she will with the PTs, so they had not seen her supinate her left hand. I'm not sure if I'm saying that correctly, but Skylar will know what I'm talking about. ;) The OTs said they could feel muscle contractions in the upper portion of her left arm which is great news.
Something worrisome I had noticed the night before last were short term tremors in Annadelle's right hand. This is the hand she uses the most, so I was worried it could be a sign she is losing movement again. Her doctors told me they believe the opposite- that it is likely a sign of the nerves firing due to so much movement in that arm which could mean she could regain a bit more mobility back.
Chris and I also spoke to her doctors about what we needed to do as far as transferring her to Johns Hopkins Hospital in Baltimore, the leading research hospital on TM that is currently seeing success in spinal cord injury patients through the use of stem cell therapy. The Kennedy Krueger center is located very close to Johns Hopkins, as well, and from what we have discovered, they provide an intense physical therapy program for TM patients. We have had several people see our story on the news or through the shared GoFundMe that suggested we research Johns Hopkins after their own children were diagnosed with TM many years ago.
Obviously, there is a huge risk of transporting her at this stage being intubated. We would like to wait until the enterovirus has subsided and she is extubated before transporting her anywhere. In other words, we want to make sure she is stable before transporting her at all.
Another issue to consider is insurance, as many insurance companies will not pay for patient transport unless the facility you are at cannot provide the needed service. We will just need to speak to our insurance company (BCBS of AL) to determine whether or not this will be an option covered under our current insurance plan.
They will do another blood gas on her at 4:00pm today. The last blood gas was good and showed her sugar level coming down, something doctors were concerned about momentarily due to the high dose steroids. That no longer seems to be a concern with those levels returning to normal.
On a side note, if you are looking for a charity to support, I would ask that you consider supporting the Ronald McDonald House. The staff has been so helpful during our stay and constantly asks for updates on Annadelle. Today a local chemical company provided a hot lunch for us. We were actually able to sit down at a table and eat a meal, something we haven't been able to do in over 2 weeks.
As I ask daily, please continue to pray for our baby girl. We know prayer works and asks that you do not forget about Annadelle, as she is growing very tired of her hospital stay already.
Much love and many blessings!