Today we had Esias' follow-up swallow study. It did not go as well as I would have liked. I was hoping to hear, "He's doing so much better than last time we did this!" but instead I watched on the little screen my son aspirate time and time again. Thin liquid, honey thick, etc. Every thickness penetrated (went past the plane of the airway entrance) on each swallow and about every third swallow actually aspirated (went down the airway). This was the same or worse than last time.
I talked in length with the Speech Path. guy. His suggestion is that we get Esias a feeding tube. He says it is just too risky to put food in him through his mouth. I was really really hoping we did not have to go this route--being told in the past that this was the "worst case scenario." I said, "So the risks of aspiration are pneumonia...lung damage?" and he said, "And death." Oh, well I guess I'm ok with it then! Basically, anytime he chokes, he is in danger or not having enough air. He chokes bad enough to turn blue maybe a few times a month. We don't give him anything like cheerios or crackers at all because he always chokes on them. All he can eat is thick thick foods. The SP guy also suggested that in the meantime, while we wait for GI to make the ultimate call on the tube, we can only feed him yogurt thick formula and foods. So at least that takes the guest work out of how thick to make it.
I have to admit, I cried about this this afternoon. I did not like this idea one bit. But I talked to my mom and she (having bad asthma) said to me, "Just do whatever you have to do to help him breathe. It is horrible to feel like you can't breathe." That really helped me put it into perspective. This is not something these docs would recommend unless it is necessary, and the risks of the tube are greatly outweighed by the risks of him aspirating.
We were also told to expect this problem (the feeding problem) will not be solved in the short term. We are to be prepared for a (maybe) long road ahead trying to get him where he needs to be with his oral development. I'd appreciate your prayers for Esias and his feeding challenges. All I keep thinking is, how do I send a kid to school with a feeding tube? Getting a little ahead of myself, I know...
13 comments:
oh shadley! what a day you've had. let me know if there's anything i can do. i'm praying that as impossible as it seems right now, that this situation will quickly become your new 'normal.'
I am so sorry for this news you received today, Shadley. How challenging it must be to keep your heart at peace through all of this, and yet I know you trust God completely. Know that you all are being prayed for by some mighty little prayer warriors (named Gabe, Seth, and Josie-and Nile and I too, of course) who love your family so much. Call me ANYTIME!!
Oh, and thank you SO much for the sweet card. You made my day much brighter, especially after I took Gabe's temp and found it to be 102 degrees...let the fun begin :(
It's so scary to hear a child cough and choke on food. I feel for you and Esias. Praise God he is with you and able to get the medical care he needs. Praying for the doctors to have wisdom and for great improvement in his swallowing.
Shadley, I would have cried too... You guys are doing a great job with your little man, and I have not doubt that a feeding tube will be a temporary thing... maybe it'll take a while, but I bet he'll be able to eat regularly before toooooo long. I bet it will feel nice to not have to worry about him choking all the time, even though you'll have to adjust to this new way of doing things. Hang in there... prayers are being sent up on your family's behalf.
Praise the Lord that Esias now has you in his life to make these decisions and care for him. With that said, I know that doesn't make things any easier. We will pray.
Early ACCESS rocks by the way. I used to refer kids there when I was working.
Shadley, I am so sorry for this news...you are having a good perspective on it and we will continue to pray that he can overcome these feeding issues and that through therapy he may develop the oral development that he needs.It's okay to cry and be sad....hang in there. God has His hand in all of this. We never know what our journeys may be, but we must continue to put our trust in Him, knowing that He will never forsake us. Love, E
Shadley, I'm glad the doctors had some specific advice for you, and you now know what it will take to help him eat well and breathe well. That is a huge blessing! I'm so glad you are his mommy and I know that in time you will figure out the answers to your questions.
Don't worry about tomorrow (or 5 years from now.) God will take care of that. So many times when things don't go the way you thought they would (or should), God has a round-a-bout way of doing something amazing. Kind of like your journey so far :) I'm so glad Esias has the family that he does. I'm sure he feels the same way, he just can't tell you yet.
I am so sorry to hear that you got challenging news. Praying that you feel calm and confident if and when you deal with a feeding tube. I remember how scared I was when I had to do an IV three times a day for Annalise when she was about 5. After a while, it just became part of what we did and it became easier. I will continue to pray for you guys.
Boy, I can't imagine the fears you are facing. All I can really think is how grateful I am Esias is with you. That he finally made it to your arms, your family. That he with thrive and survive in this life he's been given. I'm not sure he would have fared so well in his prior life. Praying for strength to face the challenges that lie before you, and for peace as you make your decisions.
Oh Shadley....I'm so sorry. I know how discouraging it is to have a swallow study and be told your child will be on a feeding tube for the long haul. We're fortunate we didn't have to continue on one, even when the second study went horribly and they talked about it, but I know how it feels to have a child on one since Jack was for a month or two so I got really familiar with running his food through the pump. BUT it's like Jill said, it will become your new "normal" and we have friends that were in the same situation once they were out of the NICU, and there are so many things that you can do now- travel pump packs, etc., it will become so routine for you....just trying to encourage you in a discouraging situation. :/ All that said, God can work miracles and we will continue to pray for Esias and that this will be a means to an end and that he will improve sooner than they anticipate. I'm sure they're also trying to be super careful with the cold/flu season and his high-risk- we completely stopped thinning Jack's liquids as a protective measure this fall/winter and are sticking with the thick gunk for a while.
I really wish I would have kept some of our pump supplies, but it probably would have been a different kind anyway...? We love you guys and are praying....I am thankful that there are ways that he can be fed even though it's super discouraging. :( We love you!!
Oh Shadley, I can't imagine how hard it was to hear this news. I'm so thankful Esais has come to your family where he can get the help he needs. God put him in your arms for a reason. Hang in there. Lots of people are praying for you!
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