Sadbh had a rough night and Larissa was busy making her as comfortable as possible with lots of suctioning. Sadbh spent most of the night coughing hard, her blood oxygen level was low and her heart rate was much higher than usual.
We talked with Sadbh’s pediatrician today, and it sounds like this is normal since she is still recovering from a cold.
This is my father’s last week looking after Sadbh, and every day he keeps a detailed journal of Sadbh’s sleeping, eating, pooping and play activities.
For the rest of the week, I’m going to include his daily log in thanks for everything he has done for us over the past six months.
These journal entries are usually shorter on the days that we have a nurse, and document Sadbh’s day after the night nurse has left, and once his shift begins.
Tuesday, 20th March, 2012
“Sadbh slept well but with some breathing difficulty, until 08:45. When she woke up, she must have thought she was in heaven, ‘cause Momma, Nini and Destiny were all cooing to her! This morning Sadbh is not her 100% self, but seems to be improving.
After breakfast, she plays with Nini and Destiny.
11:40 Bath. 11:55 Sleep, then trach care. This time Sadbh slept very well, her stats 97/122 were very good, and she didn’t wake until 13:20.
Sadbh woke up very happy, and Nini gave her 5oz of Mamma’s best.
At 14:30, after some playtime, Sadbh had some chicken and carrot, which she loved and ate it all up!
More playtime until 15:20 when Sadbh fell fast asleep.
16:10 Sadbh wakes up unhappy, but after 4oz of Mamma’s best, she’s happy again.
Later on she enjoys some banana-peach-raspberry puree”.
Over the last few days, we have been teaching Sadbh how to blow kisses and also how to stand without support. Today she finally got the blowing kisses figured out and was blowing kisses for anyone who asked. And later on in the evening, she stood by herself for almost 10 seconds. She had a look of sheer excitement and pride on her face.
Just before bedtime, she Skyped with her cousins in Portland, and really impressed everyone when she started blowing them kisses.
Sadbh has an appointment at Children’s Hospital on March 28th with Dr. Inglis for a laryngoscopy and during this procedure he will look to see if there is growth of scar tissue above her stoma, and if necessary he will laser remove it so it should open up her airway.
During this visit, Dr. Inglis is also planning on injecting Botox into the muscles that close Sadbh’s vocal cords, and this should cause them to weaken resulting in her vocal cords opening.
This procedure is not to resolve her paralyzed vocal cords, but to create enough of an opening in her air way so we can start to use the Passy Muir Valve, allowing us to start working on her speech development.
This procedure has not been carried out on anyone of Sadbh’s age before, so we are really nervous and we are not sure if we will go forward with it or not.
Thankfully, Dr. Inglis has been very supportive and has offered us the opportunity to postpone this until we are ready.
As you can imagine, we have carried out extensive research on this and our findings leave us just as confused and uncertain.
To add to the confusion, we received a letter from the insurance company over the weekend explaining that they will not cover the costs of this procedure since it has yet to be proven that this will resolve the issue.
After a call with our insurance representative today, it turns out that they will cover this, and they are pulling together documentation for us on case studies since it is a proven procedure.
We hope to learn more in the coming days and to become comfortable with whatever decision we end up making.
All the best,
Wayne, Katie and Sadbh.
No comments:
Post a Comment