Hellooooooooooooo Amirah Nation. It... Has..been.... A TOUGH week!!! Our Little fighter Amirah has had a tough week, and she really could use your love, energy and prayers right now. Amirah is going through a difficult time right now, and she is really going to need all the love and energy she can get over the next few weeks. I want to thank all of you once again for your love, prayer and energy. Thank you thank you thank you.
First, lets talk about her condition. As you are aware, Amirah had to go back on the CI-Pap. This past Friday (05/14/2010), Amirah's blood gas test (its the test they use to confirm the percentage of oxygen, CO2 and other elements in her blood) started to come back with extremely high levels of CO2. They tried to increase the pressure and level of oxygen, but unfortunately by Sunday afternoon, the doctors where forced to incubate Amirah once again. It has been extremely difficult for us to see her go back on the vent, especially since three weeks ago we felt we where making final preparations for her to come home. Its even harder to see her lying there once again unable to even freely move her head.
The doctors took another look at her today, and they have come to some difficult conclusions. The doctors feel that Amirah is going to need long term respiratory help, and there is really only two choices at this point. She can either continue along for how ever long it takes on the ventilator, until her lungs get strong enough for her to breath on her own. This is impractical, because she wont be able to bottle feed, or cry, or do much more then lay there. Given that with the condition of her lung disease, that can be up to two years! The other option, which has been even harder to contemplate, is the doctors perform a tracheotomy.
A tracheotomy, for those unfamiliar with the term, is a surgical procedure in which they will put Amirah under general anesthesia, and then make a small, vertical incision in her trachea (the tube that connects her lungs to her nose and mouth). This incision is called a stoma. They would then place a small tube in the stoma, bypassing her nose and mouth. I know your wondering why they would do this. Essentially, the area from your larynx to you mouth and nose is considered a breathing "dead zone". It takes energy to take in and push out air pass that zone. Amirah's lungs are just not big or strong enough to push and pull that air, even with help from the CI-Pap. As you will also recall, Amirah's larynx is damaged from being on the vent so early and so long. Her damaged larynx is also partially blocking her airway, and making it difficult for her to breath evenly and strongly. So the doctors feel if Amirah can just pull and push in air without her damaged larynx and that dead zone in the way, she will be able to breath much easier. A ENT (Ear Nose and throat) Specialist took a look and concurred with the doctors.
The doctors told us today that we have a choice. We can continue with Amirah being incubated for however long is necessary (which can be possible up to two years) or we can allow the doctors to perform the tracheotomy and Amirah can be possible be breathing on her own within a matter of weeks or months. As you can imagine, its a difficult choice that seems to have no choice at all.
We have decided to allow the doctors to perform the tracheotomy. They told us they can perform it Friday, but possible later if needed. I am under the personal impression that the would like to perform the procedure as soon as possible. Jo doesn't think so, but it really doesn't matter. Observing Amirah on the ventilator, it is clear that she is actually the most comfortable she has been in weeks. She can clearly breath, and that alone seems to calm her. She was laying there looking around, and for the first time in a long time, papa and daughter just took some time to just look at each other. It looked like in her eyes she just wanted to be out of there, and it just broke my heart.
On the plus side, as scary as this whole procedure is, it is only temporary. They can easily close her stoma once she is big enough and strong enough to breath normally. The pictures Jo found of children with similar procedures almost all show smiling children with these white collars around there neck, with a little hole in the center of the collar. It kinda looks like some weird child accessory, and not a major breathing device. Not really all that shocking, and from all the posts we read from other parents, it really seems like the way to go. The scariest thing for us (well at least for me!) is learning all the special care she will require. Jo and I continue to try our best to remain positive and to not completely freak out. It's very difficult to not only not have her home, but for her to require another operation, and one with so much more of a long term impact. We are very worried, because once the tracheotomy is performed, there is a slight chance that she will come home on a ventilator. We have been assured that she most likely won't be coming home on the ventilator, but she will more likely come home on oxygen, but still its worrisome. We realize this is outside of the realm of normal child care, and its even harder looking at all the documentation we are getting on how to care for a special needs child. I am trying not to think of Amirah as special needs or disabled, but instead as facing unique challenges that she will out grow, in a few years time. The nurse practitioner today told us that by the time Amirah is ready to start school, the tracheotomy will have been long gone. Considering how lucky we are given the few problems Amirah has had for one born so early and small, its a bright spot that keeps us going.
I joked today that with all the stress and worry, when Amirah is 16, if she gives us even the hint of a problem, we will send her off to live with one of her Aunts, as she has given us enough stress and worry in the first four months of life then most kids do in 20 years! It was a good laugh in otherwise a day that was bleak and stressful.
I will keep everyone updated as to Amirah's condition throughout the week. As of now, she is resting comfortable, and while she is on the ventilator, the setting are very low. She seems to be more comfortable, and not as cranky. Hopefully, that continues.
I close as I always do; Please, please, please, if you can spare a moment of prayer, or to send Amirah some good energy, or loving thoughts, our what ever you feel might help her to heal, Jo and I would be extremely grateful. Throughout this, the two things that have kept us going has been knowing the loving, world wide family of people pulling for and cheering her on, and the knowledge that even through all of this, we have been extremely blessed.
Thank you once again.
Yours truly,
Andy
No comments:
Post a Comment