A Plan In Place…

So the team meeting is done with. I have to say that I think that I did very well considering the range of emotion that I was feeling. It is always so hard to go into these types of meetings strong and confidant and then feeling like you are going to start bawling as soon as you start to talk. It was a little intimidating having so many different types of doctors in there all listening to what I had to say and asking questions.

So here is the plan. Every single doctor involved agrees that we need to treat the reflux. The first step is having a scope done of his airway and lungs. They are also going to do a wash of his lungs and send off a sample to see if this might help them at all. The scope is going to be done in the OR under a general. I am happy because A has had too many scopes for my liking awake and it is not nice at all. However the ENT is not comfortable doing it while awake anyhow because of the spells that A has. The general worries me a bit though because he always does so poorly when any type of sedation is used. This all being said, his ENT said that he would like to see A in the ICU afterwards as an extra precaution.

It also came up that he would like to remove A’s adenoids. This scares me even more because it is a surgery and added to what is already going to be happening I don’t know what to think. However his ENT and I agreed that if he felt once getting in there and seeing for sure the size of them that it wouldn’t really make a difference then he would leave them. If he felt that they could be contributing to his issues then he will remove them. Hard to stay positive when the ENT is the one saying how he is worried how A will do.

After the scope comes one of my biggest fears. Fundo. I am starting to feel more comfortable with it however knowing that I have tried everything else and knowing that it really isn’t an option anymore. It is life or death.

After recovering from the fundo will come the sleep study. NOW, we are hoping that the fundo will help MANY of his desat spells. We are hoping that his BIG spells are caused by reflux. Of course none of this we know for sure. Which makes it hard but again, nothing left to do. I was not able to speak with GI as she was called to surgery but I was shown the ph probe results that he had and it did not look good at all. I am still waiting on numbers of how many times and so forth. It is just so hard to believe how much he is refluxing but yet he is the happiest kid in the world. The docs agreed that it does make it harder for them as well because they aren’t seeing a “sick” acting child. Instead he smiles and coos at them!

Now the scary part. Every doctor agrees that they do not think that the reflux is his only issue. So the sleep study will show what is going on at night (if it isn’t just reflux). I asked about this because he does drop a lot during the night but he is worse during the day. During the night he drops to the 40s, 50s and 60s but it is odd because I can tell by his breathing that he is going to do it. During the day he changes colour MANY times and we think it is different then what happens at night. Central apnea versus obstructive apnea.

Of course this is when the trach came up again with the vent. But we are going to wait to go down that road. I need everyone to please pray that A will not have to be trached!!! I get very emotional just thinking of it and it just plain sucks.

The main doctor that I have been dealing with this week came in after to see how we were. Sad. Scared. Numb. She is in her last year of residency and I have been very pleased with her. She told us tonight that she knows how hard it is for us to make such crappy decisions, but that A was not going home until they figured him out. WOW. Finally. Last week the doctor wanted to send us home because he was stable. She said her team thinks he is far from stable and they are afraid that if we brought A home now that he would die. Blunt. To the point. But REAL.

So all in all it looks like we are in for a long stay. It has already been a week and man oh man does it ever suck! I came home tonight to get a good sleep and put up some pictures of my little man as I am sure that everyone misses seeing his face! The nurse that is on tonight is absolutely wonderful! I asked her if she used to be a NICU nurse because she just has that about her and she said no she just likes kids. I told her that I have met many a nurses that work with kids but don’t seem like she does. Well long story short, her younger brother has severe cerebral palsy. It is very obvious that she has dealt with a lot as she is compassionate, loving, supportive and caring.

I have to say that although I was frustrated in the beginning with this hospital and these docs, they have really stepped it up. I just hope that whatever lies ahead and whatever decisions are made that I will feel good. I hope that everything works out well and A stays strong and keeps fighting.

Now for some pictures!!!

So here we were on the beginning of our supposed to be 1 day stay…

After getting the probe put in. Not a happy boy at all.

 So much for the sleep study…
After getting probe out on Thursday…

Daddy & A…

Just hanging out…

 Tummy time with grandma…

Aunt K reading to A…

Holding his snakes…

 Standing like a big boy…

So cute!

I also want to say thank you to Shannon (Olivia & Avery’s mom) for coming to visit last night. It was SO nice to have you come down!!! You are an absolutely awesome person and I am lucky to have met you. By the way, the lasagna was GREAT!


15 responses

  1. Erin

    Shannon,So glad to see the update… have been compulsively checking all day!I can’t imagine being in a room with all those docs at once. What a great, yet overwhelming, opportunity. I get the same way when talking to the docs about Fletcher (esp. my NICU follow-ups for some reason). I go in so strong and ready to take the bull by the horns and end up with watery eyes because it is so emotional.Will be praying for Ashton (and your entire family) that he does well with the anethesia and that all these procedures and test render some conclusive answers.And I loved the pictures. Your special little one makes a week-long hospital stay look like a trip to disneyland. Love that smile!All my best,Erin

    January 18, 2008 at 6:06 am

  2. abby

    Shannon,I’m relieved to see you update…I’ve been checking all evening. Anyway, it does sound like the team is really working as a TEAM which is fabulous. I think the scopes are going to be similar to what Hallie had back in August (she had to be intubated for them, and boy are we glad we didn’t have to see that). They were able to tell a bunch of stuff from them and hopefully Ashton will be okay with the meds (she hated the coming down off of the sedation, but my sense is that her lungs are in better shape than Ashton’s are and I hope he’s okay with the meds and all). I think it’s great that they are going to admit him to the PICU where they can really watch him and not just to the regular floor. Are they going to do the fundo right then and there or is that a separate deal later on? If it’s a foregone conclusion (and it kind of sounds like it is and my gut–so to speak–tells me that it’s the right thing to do even though I feel the same way about it as you do), maybe getting it over with while he’s under instead of putting him under a second time is the way to handle it. And hopefully that’ll clear a lot of stuff up for him. Is it not possible to put Ashton on CPAP or BiPAP and not a trach if there is central plus obstructive apnea? I tried doing some research on this when it came up last week but I’m still not particularly well versed in it, alas. Anyway, let me know if you need anything—I’d be happy to do research for you, send stuff to you, whatever. I’m too far to visit (and I have this pesky teaching thing starting up next week, which rules out grabbing my kid and running up to Toronto), but I’d love to help in any way you need.

    January 18, 2008 at 6:56 am

  3. 23wktwins'mommy

    I’d been checking for an update, as I was anxious to know how the team meeting went.I’m glad that the Dr’s have a team in place and now have a plan. I’m hopeful that they will help Ashton.It was also so nice to see the pictures of Ashton, and you’re right, for all that is going on with him he sure is one happy boy!My favorite is the last picture with the sunglasses! He looks sooo cool!

    January 18, 2008 at 1:14 pm

  4. Vickie

    So glad to hear a plan is in place, and it sounds like a good plan. Your whole experience reminded me a lot of being in the NICU. I’m sure you felt the same way. I hope you were able to get a good nights rest, and I’ll touch base with you soon. Give Hugs and Kisses to Ashton from all of us, and big hugs to you too.

    January 18, 2008 at 1:50 pm

  5. Jennifer

    YA!!!!! This was so great to read this morning! I’m so happy they finally have a plan and aren’t going to give up until an answer is found.I think the adenoids could be a problem. Arianna had chronic infected adenoids and whenever she had a stuffy nose and we would lay her on her back she would cough/sputter and quickly roll over – they were blocking her airway! It sure would be nice if that was one of his problem and such a relatively easy fix!Although it sounds like a lengthy stay it will be worth it to have answers.I had to laugh at the pictures of him in the sunglasses! ha! I can just picture him saying “I’ll be back!” hehe

    January 18, 2008 at 2:12 pm

  6. Melissa

    Hi Shannon! I am so glad that you had the opportunity to sit down and voice your concerns about Ashton. I am sure it was a very emotional experience for you. It sounds like you guys are heading in the right direction to help that sweet boy. I am emotional for you. I can’t even begin to imagine what you are feeling.I would absolutely love to come down for a visit and offer whatever support I can to you. Please let me know if that would be ok.I will keep you, Jeff and of course Ashton in my thoughts.

    January 18, 2008 at 2:31 pm

  7. Miracles

    Awww you are so sweet. It was great seeing you and Ashton, and having a little cuddle with my favorite guy made my day!I’ll plan another trip down this coming week.Take care, and remember if you need anything just call.

    January 18, 2008 at 5:30 pm

  8. Casey's trio

    I’m happy to read that the team meeting wennt well and that a plan is in place to hopefully find some answers. I will continue to pray for your family and hope that the Ashton handles the procedures that are scheduled in the near future. You are such a strong mommy. Hang in there.

    January 18, 2008 at 5:42 pm

  9. Andrea/David

    good luck – hope that everything will be fine and Ashton will have a great time in hospital (although it´s not like home, but he seems to have fun with all his guys around him) =)hugsAndrea, Michael and David (with all his Guardian Angels)

    January 18, 2008 at 8:08 pm

  10. Justinich Family

    Shannon, It sounds like things are really moving now. I was also checking all day for an update. I am sure there are many decisions ahead of you and a team of drs, that are finally doing what needs to be done and getting to the bottom of Ashton’s spells. We will be thinking of you and your family during this time. Stacy from CP moms group

    January 18, 2008 at 8:27 pm

  11. Sarah Furlough

    Shannon, I am so grateful that you had that team meeting. I am so happy that they are really trying to get to the bottom of all of the issues you’ve been dealing with for so long.I am keeping you all in my prayers. Thanks for updating, I can’t even begin to imagine how hectic everything is for you right now.

    January 18, 2008 at 8:54 pm

  12. Aidan's mom

    So relieved to find your update this morning! It really sounds as if a solid plan has been put into place, and I am so glad for that. This wouldn’t have happened without your patience and perseverance.I will be anxious to read what you find. Your whole family will be in my prayers.Lori

    January 18, 2008 at 9:09 pm

  13. CG

    It is time you got some answers. They are not the ones we like sometimes. You seem to be doing well and Ashton seems VERY HAPPY!!! Sorry for the long hospital stay. I have done that with Landon. If there is anything I can do from afar, let me know.Take Carechasity

    January 19, 2008 at 12:06 am

  14. Billie

    I’m glad to hear that you have a plan in place, though my heart breaks for you in all the tough decisions you are having to make.Ashton is such an amazing little guy to go through all of this with a smile on his face. His smile brightens my day.

    January 19, 2008 at 4:03 am

  15. Mel

    Shannon,Wow, you really have a lot going on. I’m glad that the Dr.’s are determined to get to the bottom of this.My heart is breaking for all that you are going through. I will keep you and Ashton in my prayers.

    January 21, 2008 at 4:02 pm

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