One month ago, Carter had a swallow study. He had a dilation and a botox injection about a week before that swallow study. The study showed that the muscle was open, but there were little pockets just above the muscle that weren't emptying as quickly as they should have, and so after about 10 sucks from the bottle he would start to aspirate. So they wanted us to wait one month, get his reflux under control, have him gain weight, and do another swallow study. The hope was that the botox, if it did effect those little pockets, it would decrease the effect in about a month. The occupational therapist said "I fully expect that in 1 month we will see vast improvement". Yesterday was the 1 month post-dilation swallow study. I was trying not to get my hopes up, that he would be able to eat, because I got my hopes up with the last one, and the results weren't exactly what we were hoping for. Unfortunately Karl had to work, so I had to go by myself. At first the occupational therapist tried giving him a bottle of the barium to drink. For all of the previous swallow studies he just went crazy over the bottle. He LOVED drinking from a bottle. Yesterday he acted like he had no idea how to drink from a bottle. Like he had completely lost that reflex. So the OT said that when he does get to drink from a bottle, we will have to reteach him how to do that. Since he wouldn't drink out of the bottle, they filled up a syringe, and started dripping little drops into his mouth and then sticking in his pacifier to get him to swallow. He instantly aspirated. Wait..what....at the last one he went like 10 sucks, and now just a drop...No that can't be right. They tried another drop...he aspirated. Another, aspirated, and finally coughed. No, no, no, he was supposed to be drinking from a bottle, perfectly fine. Try again...instantly aspirate. They have to stop the study. They can't risk pneumonia. So what does that mean??? They have no idea. They couldn't give him enough barium to see really well where the problem is. He is swallowing worse than the day he was born. We have done the only known treatment for this condition, and it made it worse.
Possibilities:
1. There is a problem with the tongue and soft palate. Nope, the swallow study did show that was working properly.
2. The muscle still isn't open. Again, not really possible. The botox works for 6 months, and its only been 1 month. The muscle doesn't really have an option to stay open or not.
3. There is something structurally wrong..the esophagus is narrow....there is a flap that has flipped over that hole, etc.... Not really possible. We had an MRI, and CT scan done. Completely normal. Then the doctor had to do a scope of sorts to inject the muscle with botox, and didn't notice anything abnormal.
4. Regardless of what it is, they thought that as he gets older, he will just "outgrow" it. That obviously isn't the case, since he has finally gained weight, and is older, and it has gotten significantly worse.
5. Can we just wait for a year and see if it gets better. Not really,because if we were to rinse off his pacifier with water..that amount of liquid, he could aspirate on, and there is always a risk of pneumonia. Also, he is back to not being able to really clear out his own saliva..so we have to do something.
The OT said "I'm sorry. I have no idea...I can't figure it out." Okay..so what do we do???
We have another appointment with the pediatric ENT specialist on Monday. He really is the best in the city, probably the state, and arguably one of the best in the US. Unless he has some huge epiphany, all of the specialists are out of ideas. That would mean that our next step would be the Mayo clinic. Unfortunately the Mayo clinic that treats pediatrics is in Minnesota. So that obviously has its own level of difficulty.
This is definitely the most discouraged I have felt since we began this journey. I kept telling myself that he is getting better...that the next procedure will be the one that works.
This Sunday we are fasting for out little guy...fasting that the ENT specialist will be inspired..that they will have a solution..that we can stay together as a family, and not have to be separated to try and find the answers. If any of you are willing to fast with our family, we would really appreciate. Thank you for all of the prayers that have already been sent our way.
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13 comments:
I am so sorry that things are not getting better. Right now, I wish I wasn't breast feeding so I could fast with you, but I will definitely be praying for your little one. Sending you a great big hug.
Sara...
I am so so sorry you are going through this challenge with Carter. As a mother I sympathize with you and can understand to some degree the stress, anguish, worry, etc. that you are feeling through all of this.
We will be fasting with you guys this Sunday, and our thoughts and prayers are with you guys and Carter.
Wow Sara! I'm sorry things are so difficult. That post made me cry. I have no idea how tough this must be. We will absolutely fast for your family! I really hope the ENT will be inspired with some kind of reason or treatment. Keep us updated. You're always in our prayers!
Sara I am so sorry. This just really breaks my heart. I can really understand how you are feeling, as we were told things would "get better as he got older". I hope and pray a miracle comes your way soon. We will be fasting and praying for you. Hang in there.
We'll be fasting with you...Does Primary Children's hospital deal with things like this (I know it's not much closer than Minnesota...)
Sara i will totally be fasting and praying for your family and Carter. If there is anything you need from us just call, i can watch the kids whenever and i still want to bring dinner over.
We will be praying & fasting with you too. I know fasting can bring miracles in all forms. Hang in there! Your faith and strength is an example to all of us. Thank you for that.
Sara - My heart is so heavy for your family. I have no idea how hard things are for you. Just "hang in there a little longer". I wish I could physically fast, but even though I can not, I will be emotionally and spiritually fasting for your family and ENT. I know miracles can happen that way. My mom's life was saved due to an instance like this where a group of people gathered together to fast for her AND her doctor. The next night in the middle of the night the doctor showed up with a combination of medication to try - not one that he normally would even consider as a combination, but said he woke from a dead sleep and felt so strongly that was what was supposed to happen. It worked. I know the Lord hears and answers our prayers and when we add fasting miracles happen. We are going to temple tomorrow. I will add the names to the prayer roll!!
Sara, I can't even imagine how difficult and frustrating that must be. You are such an inspiration to us how strong and faithful you have been. We will be fasting and praying for your family and the ENT's mind to be opened.
My heart goes out to the family! I keep a prayer in my heart on a daily basis for little Carter and was so happy to read that he had gained weight. I will join with you and others fasting for him and the ENT this Sunday...Much love being sent your way!
Sara! It's Adriane Hapgood out here in Arkansas! I just read your blog and I'm praying for you and for your little boy. My brother David Parry is a pediatric E.N.T. there in Tucson. I wasn't sure if he is the Doctor your'e seeing, but if so, he is awesome. Tell him that we're friends and he will do the best job that he can I'm sure. He served a mission in the Dominican Republic and he's a fantastic brother and just a great guy. Let me know who you are seeing and I'll even ask my brother what you think. Hope your'e well! Hugs and know I'm praying for you!
I am so sorry Sara!!! As with Trish, I can't fast, but Matthew is going to, and we actually asked some members of his family to fast for your family and Carter. We will continue to keep Carter in our daily prayers and if there is anything, anything else at all that we can do, please do not hesitate to call us. Good luck on Monday!!!!!
I just put a post on my blog to lead my readers here in hopes you can recieve more prayers and more fasting. Stength in numbers right! We are praying for you guys and really wish you the best. Sometimes Heavenly Fathers plan just makes no sense to us but the fact that He has a plan for us shows His love for us. All I know is with trials comes strength and learning and that is what we are here for. It isn't soppossed to be easy but if we endure to the end He promises it will be worth it. Hang in there, He is on YOUR side:)
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