A Minor Setback For Quinn

[Anonymous]

Well, yesterday afternoon they started her formula feeds. She took 150cc’s by pump for one hour. Right afterward she started gagging coughing, choking she stopped breathing for a few seconds and then she puked it all up. All over me. She was screaming for about ten minutes. Then they started her on continous feeds that night with 60cc’s per hour. She did okay but was choking and gagging at night as well. This morning she did not eat her breakfast tray because she was choking and gagging and arching her back and crying then she just refused altogether. She’s got some horrible diarrhea today too. It’s like water. She is just continuing to choke and gag. She has never had a full stomach.

The doctors talked about the nissen fundo AGAIN. But we are really trying to see what flow of feeds she will tolerate. We are going to try and do nothing but continuous feeds at night. And supplement if she doesn’t eat anything. We already know that she will not tolerate bolus feeding so we are going home on the kangaroo pump. Also they set up some at home nursing.

We won’t be leaving the hospital today. The doctors agree another day or two or until we can get this feeding figured out and if we can’t then she will be staying until after the j-tube or after the nissen fundo surgery. Which ever one we need to do. but she is having a rough time right now. Poor baby.

Anyways, I had the opportunity to read your responsese to the last post. And thank you so much everyone. I just wanted to update you guys real quick and I have to get back to my baby. It’s been hard to be a single mom and have to go through this. I’m the only one who is here for her. My family lives at least two hours away and they all work full time so I’m going this alone. Ugh… so difficult! And I do get bored. Thanks for the prayers. I must go now! I’ll update again tomorrow probably. -Sarah

[Anonymous]

I will continue to pray for her! I am so sorry that this is so difficult for you and her.

[Anonymous]

I hope she can go home soon and I will pray that she will not need the Fundo.

[Anonymous]

Sarah, I’m so sorry that you don’t have anyone there to help relieve you a little bit. Quinn is so blessed to have you as her mother. I hope that the doctors find the right answer for her, whatever that is. If they do feel that she needs a fundo, the only thing I would say is to make sure that she’s had all the appropriate testing done beforehand to make sure that things will go well for her afterwards. One thing I’ve read recently is to ask them to do a gastric emptying scan as well as the other tests (probe, scope- which I think she’s already had done), b/c babies with DGE don’t tend to have as good results as babies without DGE.

Good luck with everything. We’ll keep praying for you and Quinn. HUGS.

[Anonymous]

Just a thought…

Are they still giving her the prevacid while she’s in the hospital? If not, might that be why she’s having so much pain with the reflux.

[Anonymous]

lori is right about DGE causing potential problems. esophageal motility also needs to be checked before a fundo is done because it can make a difference on the kind of wrap that the surgeon does—–they do a partial wrap instead of a full wrap for children with motility problems.

[Anonymous]

Christine, not to put you on the spot, but do you have a list of questions that would be useful to ask before a fundo? I know that the success of the surgery can depend highly on ensuring the child is the right candidate as well as the skill and knowledge of the physician.

Here’s a list I lifted from another site, but given your experience with things, do you have anything to add?

1. Why does he think your son/Daughter is a good candidate?

2. How many does he do a week?

3. What is his success rate?

4. How long has he been performing them?

5. Does he view fundo as a cure? Will your child still need reflux meds post fundo?

6. What complications does he feel are common? How can doing a fundo impact a child with a feeding aversion?

7. How does he handle his patients post fundo?

8. How many have been successful for the reasons he is performing it on your son/daughter?

9. Are there any other tests that can be tried?

10. What is his method for fundo?

11. What time limit does he give or what does he suggest you try before performing a fundo?

12. Will he be the one doing the procedure and aftercare? (you would think he would but alot of times this isn’t the case)

13. What meds do they use post fundo?

14. Which procedure does he prefer, open or laprascopic? Which is more effective and why?

15. What type of fundo does he prefer to perform?

16. Does he prefer to do the wrap as tight as possible, or lose enough that the child should be able to belch and vomit if absolutely needed?

17. What does he feel the recovery time actually is for the fundo?

18. What complications, if any, can be expected from doing a fundo on a child with delayed gastric emptying/slow motility?

[Anonymous]

boy, lori, i don’t think i even thought of all those questions before sylvia’s surgery. that is a good list. a comment on the first question—i think that there are is only a short list of reasons to consider doing a fundo on a child—failure to thrive, esophageal damage, respiratory problems….and i think there are one or two others. it is meant to be the last resort. sylvia can burp, but she cannot throw up.

sadly enough, i think that there are still some children who need to have a fundo done even if they are at a higher risk for post-surgery problems. i would imagine that whatever puts them at risk for problems is also quite often the cause of their needing a fundo.

kevieb2007-5-22 10:12:23

[Anonymous]

Thinking of you guys and praying for you

[Anonymous]

I’m sorry Quinn’s having problems with her feeds. I agree that it might be a good idea to have her tested for DGE if she hasn’t been already. This could be the reason she isn’t tolerating her bolus feeds. Sending prayers!

[Anonymous]

Thinking of you an Quinn and praying that things get worked out!

[Anonymous]

Hang in there. I think the ladies here have had some very good advice….

[Anonymous]

Sarah, I have been thinking of you and Quinn so much lately. I hope this gets resolved very soon for both of you. It is so hard to see your LO in pain and having such a time. You are in my prayers. Keep your chin up – however, a good cry didn’t hurt anyone. Looking forward to your next post and hopefully that will be from home sweet home. Hugs to both of you. If you were closer, I would come to visit you both in the hospital.

[Author]

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