Need Prayers

Well I am pretty emotional right now. A new team of docs started this morning and so far have been very good with me. I showed them the video and the one doctor looked pretty emotional. They talked to the lung docs here and they are not wanting to do the sleep study at all until A’s GI issues are figured out. Not surprising, and makes sense.

The ph probe showed severe reflux which I already assumed but he was also off meds at the time. GI from here will be coming to see me tomorrow to discuss adding another medication to his prevacid. Fundo has also come up. I have been against a fundo for so long but it looks like I might have to give in to my fears. We will see.

They are also going to do the initial bloodwork to look into some sort of metabolic disease. The whole workup for these are very expensive but if the two things they are going to look for are off slightly they will do the full.

His CO2 was also pretty high in yesterdays bloodwork which is concerning to them. They are going to repeat it in the morning when he gets up to see what it says then and compare it. Just one more thing that leads them to believe that it is central apnea.

NOW, the docs think that A has central apnea as well as obstuctive. They are calling ENT to come and do a scope. I am very scared about this because I have a feeling it will put him into one of his big spells. When we saw ENT on Wednesday he didn’t want to go all the way down in fear of this. When I brought this up to the docs they said that they have everything here on the floor needed to deal with it if he does. I don’t think I am going to be able to stay in the room when this is done. I have been dealing with such guilt feelings on things that A is having done and I think this will just be too much for me. I just pray that IF he does have a spell that he will be okay.

Next, if he does have central apnea then the doc said that we are looking at HUGE things happening ahead. I asked what and she told me that she didn’t think that I would want to know at this point. I said yes. Well that is when the trach came up again with ventilation. I am beyond heartbroken. I know that I can’t jump ahead but it is so scary to imagine A being on a vent. Nevermind the fact that I feel like I will be putting him through it. The life he lives now will just not be the same. I haven’t stopped crying since this came up.

So that is about it for now. Please pray for my little man. I am just so scared right now for him. I think I am also afraid for myself because I can’t imagine losing him. And I know that with these spells there is a possiblity of this happening.

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26 responses

  1. Melissa

    I have no words right now…I am in tears for you. I will be praying everything goes ok and that Ashton will be just fine. Please know that even though we have never met, I care very deeply for you and Ashton. Big hugs to you Shannon.

    January 14, 2008 at 8:17 pm

  2. Emily

    Shannon I am thinking of you two constantly right now. I know how you feel about the nissen and I know that it’s not always a positive thing. I hope however that if that’s the course of action you choose it is wonderful for him. I know for us it was night and day from the moment we had the fundo done I’d do it again in a heartbeat if we were in the situation we were in before. I hope that you see such drastic improvements as well and that you will have a peace about the decision. It’s not always an awful surgery and it does indeed save lives.

    January 14, 2008 at 8:22 pm

  3. Judith and Jason

    You are not alone, you have cyber hugs all around you and the family!

    January 14, 2008 at 8:34 pm

  4. Aidan's mom

    {{{HUGS}}} Shannon. I don’t have anything of concrete value to offer you, but Ashton will definitely be in my prayers. I am SO sorry you are going through this.I know this is so much easier said than done…but try not to feel *so* much guilt. If not for you Shannon, Ashton wouldn’t be here today. That much is certain. Because he has an aware mother as an advocate he will get whatever care is needed.Praying for your family,Lori

    January 14, 2008 at 9:00 pm

  5. Billie

    Shannon,I am so sorry that you guys are having to deal with all of this. I know on the one hand it might be nice to have some answers and a plan of action, but on the other hand it sucks when the news is so heartbreaking. I just hate the thought of Ashton having to be on a vent too…I cannot imagine all of the emotions you must be feeling.You are in my thoughts,Billie

    January 14, 2008 at 9:02 pm

  6. huether family

    Hey Girl, i don’t know what to say, they say things have to get wrose before they get better, so maybe all this you are going thru right now will be good in the end. Hopefully he gets some real help and they can figure out whats going on and make some decisions on how to help him. I’m here if you need me, hope your ok, and hope Ashton is well and things get better from here.Love Ya AlwaysMandi

    January 14, 2008 at 9:53 pm

  7. Trish ~CnJ's Mommy~

    We are praying for you and Ashton. I hope it all works out, with the best possible options. Remember if you go fundo, you want it OPEN NOT Lap!{{hugs}}

    January 14, 2008 at 10:09 pm

  8. 23wktwins'mommy

    Shannon,Just wanted you to know that you are all in our thoughts. We are very concerned about Ashton and hoping that everything turns out ok. Please know that we are all hoping and praying for him and are here for you for any venting or support you may need.

    January 14, 2008 at 10:27 pm

  9. Angela

    Shannon – there are no words. I think of Ashton constantly, and your family is in my prayers.

    January 15, 2008 at 1:32 am

  10. abby

    Hi Shannon,I just wanted to send more big hugs. What an awful ‘rock and a hard place’ sort of situation. On the one hand, it does seem like this team is invested in getting at the bottom of Ashton’s spells and figuring out what in the world is going on with him. On the other hand, the answers to those questions pose new hard places to negotiate. I am hopeful though that, with more information, the doctors might be able to come up with a plan of action that makes Ashton healthier in the long run–if the answer is the fundoplication, as hard as that is, that might help Ashton the way it helped Dakota. Hopefully you will be able to avoid the vent/trach combo–but if it comes to that, maybe that will allow Ashton to grow healthier lungs, hopefully outgrow or at least better be able to handle the reflux situation, and ultimately have a better quality of life down the road. Either way, I cannot imagine what you must be going through right now, but please know that we are sending you guys positive vibes, prayers, and tons of love. Ashton is one special little man, in the best sense of the word special, and he has a lot of friends pulling for him right now–as do you.

    January 15, 2008 at 1:36 am

  11. Sarah Furlough

    I am really at a loss for words. I just want you to know that you and Ashton are in my prayers. I am sending you many hugs and all my love. I truly hope that you will get the answers you need!

    January 15, 2008 at 2:49 am

  12. The Preemie Experiment

    One day at a time Shannon. And, no guilt! You have been a wonderful advocate for Ashton. It’s easy to talk yourself into thinking that “you” are putting him through this but you know in the deepest part of your heart that YOU did not cause this! It’s painful to watch our kiddos go through these things. It’s hard to see now, but please know you will all settle into this and find your way.Please let me know if I can do anything else. You have my phone number, please feel free to call anytime.Hugs,Stacy

    January 15, 2008 at 3:04 am

  13. Sammie

    Many thoughts and prayers being sent your way!

    January 15, 2008 at 3:15 am

  14. Erin

    Shannon,Thinking of you and Ashton and praying for the best possible outcome. I know you have been searching for answers for a long time and I hate that those answers may not be what you, or any of us, want to hear. However, whatever this hospital visit may lead to, if it puts an end to those dreadful ALTEs, I think it will be worth it. You are such a strong woman and wonderful mother and advocate. You will get through this.My best,Erin

    January 15, 2008 at 3:17 am

  15. Adam & Andrew

    Wish I had something helpful to add but just know that you and Ashton are in my thoughts and prayers!

    January 15, 2008 at 3:24 am

  16. Jamie and Jill

    Shannon, I can’t even imagine what you are going through. ALL of you are in my prayers.

    January 15, 2008 at 3:30 am

  17. Jacolyn

    I will be praying for sweet Ashton.

    January 15, 2008 at 3:35 am

  18. Trisha

    Shannon, you all have been in my prayers since Ashton went into the hospital. I am sorry that you are faced with so many scary decisions. You know your little man better than anyone and are the last person who would let doctors do tests/procedures that are unnecessary. Trust yourself and the decisions you make. He’s so lucky to have you as his mommy. Sending hugs your way!

    January 15, 2008 at 4:08 am

  19. Maryam's Mommy

    Hugs and prayers.

    January 15, 2008 at 4:11 am

  20. Justinich Family

    Just want you to know I am thinking of you, I am sure this situation is hard but I really hope that you find answers and can feel good about what happens.

    January 15, 2008 at 4:52 am

  21. Casey's trio

    I will be thinking of you and Ashton as you work with this new round of doctors. I am praying that he makes it through all the tests and that you have some peace of mind as well with no guilt. I can’t imagine how difficult this is for you right now.

    January 15, 2008 at 6:24 am

  22. Growing Your Baby

    Shannon,Brian, Cole and I are thinking of you , Jeff and Ashton.If you need anything or just need to talk, you know that I am ALWAYS here to listen.Please give Ashton a kiss for us and know that we are praying for him to get better.

    January 15, 2008 at 8:01 am

  23. Andrea/David

    I´m shocked and I hope so much, that there is an positive end for you and Aston….Faith (Guardian Angels), Hope and Love – that is the Theme of my first Tattoo, this is what our kids need! Go for it little Honey, show them what you can!hugsAndi with David

    January 15, 2008 at 10:21 am

  24. baby james

    I also am at a loss of words. I have you both on our prayer list and hope not only do they get things figured out but that all goes well. I know you will make the right decisions for you and Ashton. I wish you all the best, I know it is hard not to feel guilty but you are and have done the very best and your strength and beyond. Hugs for you and Ashton. Tracy

    January 15, 2008 at 9:41 pm

  25. The Hull Munchkins

    Oh Shannon,My heart breaks for you. I’m so glad the docs are getting together to test Ashton and look further into his spells. I hope it won’t take too much time to pass before you know for sure what Ashton needs.I’m praying for you both during this difficult, uncertain time.-Patty

    January 15, 2008 at 10:17 pm

  26. Jennifer

    Shannon,I’m thinking good thoughts for all of you and hope you have answers soon.Much love to you and your little guy!

    January 16, 2008 at 1:32 pm

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