Well, on the the 24th of September, Nathaniel ended up in the hospital again…..another seizure. He was intubated and they weren’t able to get a good vein so he required an IO all over again. The on-call doctor mentioned a g-tube and fundoplication. My heart sank. I fought and fought for the heiberman when he was first born and was going to be released because he was doing so well with the bottle. The nurses and doctors were persistant that he needed it, and now I wonder if I’ve hindered him. What if I had just let them do it then…..how much better off would he be. The doctor is worried because of Nathaniel’s history of upper resperatory infections. Needles to say, the doctor that was on call last Monday called himself to check on him. How often does that happen??? He said he wants to take over and now we have an appointment scheduled for tomorrow at 11:00, during their lunch hour….what does that mean? I am so worried. He is going to work on getting him in to see a Pulmonologist and a Gastroenterologist-like yesterday. He is very congested today. He’s just coughing and sneezing up everything….he’s probably had about 3 ounces of Pediasure and 2 ounces of rice cereal today. Any opinions about Fundoplication? I know he’ll benefit from this, but does anyone have any personal experiences? I’ll update later on.
If you enjoyed this article, please consider sharing it!
I also fought the g-tube in the beginning and used the Haberman bottle. Amelia did well for about nine months with the bottle but then kept getting infections as well and stopped eating. We decided on the g-tube and fundoplication and I am so happy we did.It was the best decision I made for her. She has gained a lot of weight and when she is sick, I am sure she is getting adequate nutrition. On a negative note, she stopped eating by mouth. I can’t ge ther to eat anything. But she has been healthy and to me, that is all that matters. I know this decision is hard and I hope Nathaniel is better soon!
Our daughter is 14. We went through much of the same things you describe – in and out of the hospital with seizures, intubations, feeding issues, aspiration pneumonias, reflux, the ER always checking via spinal tap for infections – until we put the stop to that, etc. The docs also wanted to do the g-tube and fundo, telling us it would make our life easier. We opted out of it mainly for the fact that we didn’t like the permanancy of it. We waited it out, fed her ourselves, and she eventually got better. Our daughter is fed by mouth (by us but she is trying to help) and drinks from a bottle/cup on her own. Our experience has been to be patient, think things through, and keep invasive medical intervention to a minimum (if possible). It will all work out whatever you decide.
Feeding Rochelle was, and is, a full time job. Good nutrition is the issue. She did not need to be tube fed. Now that I understand the chewing, hypotonia, swallowing, intestinal problems ( narrow bowel that can obstruct with fibre ), I think it is a good option. Good nutrition and preventing aspiration pneumonia with tube feeding is a wise choice.