Thursday, July 9, 2009

Please Pray

So today we had a swallow study for Malachi. While he was in the hospital for his heart surgery we found out that he was aspirating. They did a swallow study and put him on thickened formula. When he drank the thickened formula, it all went down just fine. Well his ST decided she wanted to do another one because she felt he could come off the thickener. Well she was wrong. In fact the new swallow study showed that he is, in fact, still aspirating. Ugh. So tomorrow we go to the GI doc for a "asap appointment." We are not sure what she is going to want to do, but we have a feeling a feeding tube is in our future. We are extremely sad and nervous about this possibility. We ask for you to pray, pray that Josh and I trust in the Almighty Father and his plan for Malachi. That we have peace with whatever decision is. This is a complete surprise for us something we thought we would never have to face but we are here and want whatever is best for our little man! Im needing some serious encouragement right now as this is hitting me in the gut right now! Other moms who have been through this, please leave a comment and tell me about the surgery and life after. Am I making it a bigger deal than it is? I just dont know.

5 comments:

Stephanie said...

Little guy is just following the program here. Well, I want to say that we will be praying for you tomorrow.

I remember when Christopher got his G-tube. I remember crying and crying. I thought it was the worst thing.....I was wrong. Christopher crashed about 15 times from aspirating before they figure out that was what was going on. He has suffered brain damage & lung damage because of it.

Just because he has a G-tube DOES NOT mean he can't work on or take any food orally. DO NOT let your speech therapist only work on speech. Feeding therapy is essential for speech and well as eating by mouth later.

You will also find, after you have the tube, that giving meds is soooooo much easier! Now, I will not say that having a g-tube is all hunky dory either. They can be a pain in the you-know-what sometimes with leaking, etc. Frankly, it will happen sooner or later. We all have to deal with it, but I would rather have his tummy leaking than him drowning and on a vent.

I would suggest one thing. If they place the tube, make sure that they do a nissen (fundo or fundoplication) at the same time. There is another kiddo getting a g-tube and they are talking about doing the nissen later. That makes no sense. They have to do the same surgery for both, why do it twice?

OK. I'll suggest 2 other things. Have the doc write your script for 13 tube/buttons per year. Especially if they are using MicKey's. They have changed the way they make them, and frankly the balloons suck. Sorry, but they do. This will also give you spares because something always happens when you don't have one. The other thing is to ask for a script for an AMT clamp. This is a little clamp that fits on the end of the feeding tube and then over the end of the tube from the feeding bag. It keeps them from blowing apart (i.e. HUGE MESS).

You guys go to Rush right? Stop by our blog and e-mail me. I will send you our number if you have any questions or want to vent. We take Christopher to University of Chicago, Comer. It is pretty far away for you guys, as it is on the south side. I can give you more info if you need it.

Sending big hugs and prayers!!!!

Lacey said...

Ok, calm down, its ok. I agree with Stephanie except one thing. They need to see if he's refluxing or just aspirating. If he's not reflexing then you don't need the nisson. If he just aspirates when he swallows, then you only need a feeding tube.
They didn't do the nisson with Jax g-tube, so we had to have another surgery. So if they dont know if he's refluxing, have a ph probe study done to see if he's refluxing.
The g-tube surgery is really not bad, and definitly makes giving meds sooo much easier. I was terrified for Jax to have the surgery, because only a few months before, he had been soo sick and on the vent for 4 months. But I was surprised how smooth it went. A couple of days in the hospital to make sure he tolerates feeds and you are home. We have had no problems with our tube except a leaking problem that we found out was from not pooping, making his belly distended, and making his buton leak. Call me anytime and ask any questions. 801-792-4661

Heather said...

Thank you for stopping by and you for your very sweet words.Yes,Zoey has a g-tube and a fundo,although she has loosened her nissen and gets past it when she needs to.Her g-tube has been a lifeline,literally.she has had it since she has been 7 weeks old and it has saved her life numerous time.No exaggeration.I know this is a scary decision but it doesn't mean it's forever.Literally,when it is time for it to come out,it gets pulled and within hours is closed up.Sounds simple and know there is nothing simple about this juncture you have reached but I promise you it will be alright.You have gotten some really sound advice from Stephanie and Lacey.Look at the g-tube as an insurance policy.Somehow then it makes sense.We will pray for you and your beautiful boy and feel free to email me if you have any other questions.

Emily said...

I haven't experienced that... but want you to know that you are in my prayers.

Kristin said...

We'll be praying for your cute little family - so sorry to read this not so fun news.