So she had her trach done on Friday, and everything was going fine for a couple days. She was starting to get weaned off of her Precedex and the ventilator. We had adoptive parents come by on Saturday and were able to hold her and rock her in the chair. Her godfather Frankie also stopped by on Sunday night to see her and to take us to dinner, which was really nice.
By Monday morning, she was completely off the vent and on a small dose of Precedex. It was great, her godmother, Kristen and her husband Walter came by that morning to see her and was also able to hold her for a while. She was more awake beca
use they were weaning the sedation off, so her movements were coming back and she was moving a lot while she was awake. That day the nurses encouraged us to get out and go to lunch, so we could walk around and get some fresh air.
While we were at In-n-Out the doctor called us to let us know that they were rushing her to the OR because her movements had been so extreme that they tube of the trach got displaced and lodged in a flap of tissue instead of her trachea. So, of course she started having issues breathing and getting a good oxygen saturation. Thankfully they were able to get the ENT doctor to quickly look with the scope and he could see that it was not in the correct place.
They were able to get her to the OR fast enough and changed it our for a new trach that was a bit longer than the previous one.
They kept her on a paralytic over night and some Fentanyl f
or pain as well as some Ativan to help her sleep. She remained on the paralytic for a bit yesterday but they slowly took her off of it and she is now only on Fentanyl, Ativan, Propofol and a small dose of Precedex. They want to keep her sedated so that she doesn't move and displace her trach again. It takes a week for most of the scar tissue to heal over the trach so that it creates a nice clean track for it to go in. So next Monday they will switch her current one out for a new one.
Neurology also has started her on the IVIG to see if that will help, the potential benefits outweigh the risks at this point, so they started her first dose yesterday and are continuing the second dose today. They will try it for a few days and see how she responds, and if they don't see an improvement then they will try the Carbidopa-Levadopa, for the neurotransmitter replenishment. That medication is basically what they give Parkinsons patients for the shakes and tremors they can't control.
We are still waiting for results from the muscle biopsy to check for mitochondrial myopathy, the cerebral spinal fluid (CSF) tests to confirm the neurotransmitter movement disorder and possibly narrow it down to a diagnosis; as well as a test to screen for Pelizaeus -Merzbacher disease (PMD). So far, they have done another screen for Prolactin levels, and it seems elevated which correlates with the low neurotransmitter, so that is another clue that sort of points to the idea that it could be the neurotransmitter issue, which they told us could be Biopterin Deficiency. But again, the CSF test will be able to confirm it better. They might do some more
genetic tests, but since she just got a blood transfusion and her hemoglobin is still a bit low, so they are going to wait before they take more blood from her.
We are very lucky that we have such a great team of nurse and doctors working on her case and we can tell they are very dedicated to figure out her diagnosis. We also had some friends start a donation page and a Star Wars props raffle to raise money for us. It's such a blessing to have so many people donate and want to help, it is really amazing and touching.
Please keep Leah in your prayers and hope that this gets resolved soon.
Here she is on Sunday after she got her Trach, i was tickling her and she was laughing :)