Long Day At Toronto Sick Kids

First some pictures of yesterday when A was playing with Dawn…

So today was the big day where A FINALLY got to see a lung specialist! I still cannot believe that he has never had to see one considering that he came home on oxygen and has had so much trouble with his breathing and blue spells.

Waiting for the doctor sitting in a gold seat from Maple Leaf Gardens!

Anyhow the doctor was very great. He had read over A’s file so he knew some of his history to speak with me. One of his biggest concerns is the ALTES that A has had in the past. Again, FINALLY someone that cares about my little man not breathing besides me!

After listening to A and speaking to me for a good while, asking questions and talking things over he has decided on a few things. He does not believe that A has allergies or asthma. This is a very good thing. He also believes that a lot of A’s issues stem from his upper airway and the fact that it doesn’t have muscle to help control swallowing and maintaining an open airway. This would explain his blue spells that he has and the big events as well. When you add reflux to the issue it can make things worse which is obviously what is happening.

When talking about A’s sleeping it is obvious that he may have some issues with sleep apnea. He is going to be ordering a sleep study so that we can see what exactly is going on and whether or not it is obstructive. He warned me that A is at risk for this either now or later because of his past history so it wouldn’t surprise me if that is what is happening now. I am actually kind of excited about the sleep study because I am sure that it can show US what is happening at night.

Second A will be having a feeding study. He wants to know if A is aspirating into his lungs which can cause a ton more lung problems for him. I was supposed to have a feeding study done at Sick Kids before this appointment but they decided to call me last week and tell me that I could go to Mac for that and they were not going to do one. He told me that he will put in the request again.

Third, A will be having a bronchoscopy. The last time that he had one of these was in February of 2006 while in PICU. However this being said it was done by an ENT that has totally messed up with A’s files. I found out today that the report he did after the surgery in December of 2005 while in NICU that he in fact says he never did a laser surgery. WHAT?! I remember EVERYTHING about that day and the week after. It was December 16th 2005 and he came out on a vent. His airway and tongue were SO swollen that he ended up on the vent much longer than anticipated. Anyways I am just blown away that a surgeon doesn’t know what he did or if he did it. Obviously the ENT that we will be seeing is NOT this guy and hopefully the one that did A’s cochlear implant surgery! It would be great to have him as well because he saw what A does while in surgery and in recovery. He told me on June 11th of this year right after surgery that he was worried and he would get to the bottom of it. NOTHING was done. Ashton even had one of his ALTES in the hospital yet nothing was done. Oh sorry, they suctioned him.

Now to the scary part. I will be speaking to a surgeon after all tests are completed about a possible tracheostomy. Hmmm I’ll tell you I could feel the tears well up in my eyes. I can’t imagine WHY my little man has to go through one thing after the other. A trach was actually brought up in the PICU back in February of 2006 but because the spells stopped after the gj they decided against it. I had blocked it from my mind and never looked back.

Well gj tube is still in 20 months later and yet A has still had ALTES. Yes they are WAY less frequent but the happenings are scary enough. It is like the doctor said, we are very lucky that A has recovered on his own each and every time that he has had one, but what if he didn’t?

I think he liked this doctor too!

After that appointment we did some of the usual shopping at the hospital and grabbed something to eat. At 1pm we met with his audiologist for some fine tuning on his implant. He did wonderful in the sound booth turning to sounds at even 20db!!! Everyday I am more amazed with this implant and what it has done for him!

Back at home wearing his new shirt that grandma bought him. My little future NHL star!

One day at a time….

10 responses

  1. Mel

    Oh Shannon, I really do hope that he doesn’t have to get a trache. I love the pics of him and I am thrilled to hear that the cochlear implant has helped him so much already.Keep us posted.

    October 11, 2007 at 2:21 am

  2. Melissa, Josh, Owen and Nathan

    I already sent you e-mail about your day on the CP board but wanted to comment on here about Ashton’s outfit. He is always so STYLIN’…I love it!!

    October 11, 2007 at 2:26 am

  3. abby

    Shannon,Is there anything that they can do to make Ashton’s upper airway more rigid? I am no expert on laryngo- and/or tracheomalacia, but I think I remember reading something about this being done in extreme cases where the larynx or trachea did not firm up on its own ‘on schedule’ (like our kids have a schedule and comply with it?) and where things like ALTEs were happening. Anyway, can the excellent lung doc get you in to see an excellent (as opposed to substandard) ENT and can they work together to come up with plans? I do hope that you can avoid a trache with Ashton…And, on a happier note, boy is he cute!

    October 11, 2007 at 5:00 am

  4. Aunt Kelly

    That’s a handful of info….well, at least yu found a doctor who wants to HELP our little bug. love the shirt too!!!he’s so cute!!!!!!!!!!!!!love you all.

    October 11, 2007 at 1:05 pm

  5. Nicole

    Hi everyone,I’m very happy that you found a doctor that cares about everything that is going on with Ashton. I really hope that Ashton does not have to get a trach. Anyways, keep me posted. Love you. Give Ashton a kiss for me.

    October 11, 2007 at 4:59 pm

  6. Emily

    Glad to hear you finally have a doctor willing to listen to you. I hope you get some good information from these upcoming tests. Sounds like Ashton is doing well with his implant!

    October 11, 2007 at 6:07 pm

  7. Nathali

    You guys have been through so much!! How much can one person handle?! I am glad the new doctor worked out!! Hope he doesn’t need the trach!!!

    October 11, 2007 at 7:38 pm

  8. baby james

    God Bless, I am so happy to hear you finally found a doctor who listens and cares and is concerned with his blue spells. I can only imagine how scary those are. As far as the trache just like everything with our kids we don’t want to have to do things like this but we have to do what we think and feel is good for them. Like you stated at the end ONE DAY AT A TIME. If the NICU life taught us anything it is to take it ONE DAY AT A TIME. Good luck with all the tests and hope you get them scheduled soon. James had a sleep study which was very interesting everything came back fine thankfully but it sure was comforting to have had this done. You are always in our thoughts. Ashton always looks so handsome. Tracy

    October 11, 2007 at 9:49 pm

  9. Anonymous

    Trach? Does he have tracheomalacia? This post has brought back memories. The first time Alina had eye surgery, her sats dropped dramatically when she was sedated, and she freaked everyone out in the OR. They called ENT and did a bronchoscopy before they began her eye surgery. This was at Sick Kids, they found granulomas, that were obstructing the upper airway flow, and they removed them that day. When she came out of surgery, she was actually breathing better, than she previously had been, still ventilated, but they were able to wean her a bit. Hopefullly when they do the scope they find something relatively simple to treat, and don’t have to do a tracheostomy. I’ll talk to you in a few days. I’ll be out all day tomorrow. Hope everything else is well.-Vickie

    October 11, 2007 at 11:42 pm

  10. Billie

    Hi Shannon. I read this story twice, In the CP group, and the PBM group, but still reading it again brought tears to my eyes. What a lot for Ashton to go through, and for YOU to go through too! I am so sorry. It totally sucks to have all of these huge life-altering decision to make, and never knowing if you are making the best decision. I wish you all the best, and hope you learn something useful with the studies that will make your decision easier.Ashton is SO flippin cute!

    October 12, 2007 at 9:33 pm

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