That is the oh so difficult question. We had our monthly check up at the renal clinic on Monday and they want Elsie to have a nasogastric tube (NG tube) placed while we wait for a G tube. Unfortunately we’re unable to see the surgeon until the beginning on February and even then she most likely won’t get the G tube surgery until sometime in March and our Nephrologist feels that is too long to wait for Elsie. Waiting until March could result in further kidney damage and a continued delay in growth (although she gained 0.34kg and 1.5cm last month!), since she is so dehydrated.
However the NG tube is a tube that goes through the nose, down the esophagus and into the stomach. The tube outside of her nose will be taped along her cheek and hang down from the side of her face. This is not something Dave or I think Elsie will tolerate for any length of time. As sweet as she is, she does not like having her face cleaned, bows in her hair, or anything that doesn’t need to be on her head. So although the NG tube will be great for her if she can just leave it be, it could also potentially be a horrible traumatic experience that ends with her ripping it out so many times it’s not even worth continuing to shove it back down again.
And herein lies one of the most difficult decisions we’ve had to make regarding Elsie’s care to date. I had just finally accepted the G tube as a necessary device for Elsie and now they come at me with this NG tube business. From the moment we learned about the NG tube we thought it was something Elsie would never keep in. She has had to go through so much lately, countless blood and urine tests, ultrasound, x-rays, eye drops, and forcing medications down her throat that I would really like to spare her from all the uncomfortable procedures that I can. And if the NG tube doesn’t work for her I don’t know if I can forgive myself for putting her through it when I could have spared her by just saying no, we will wait for the G tube.
Our Nephrologist recommended the G tube back in December and she was hoping that it would be placed sometime this month. So if she was just fine with us waiting over a month for the G tube with no NG tube in the meantime, then why is she now saying they can’t wait any longer and Elsie needs the NG tube as soon as possible? We feel like all the sudden this is being forced on us with no real time to consider all the possibilities, and yet we’re being made to feel bad for every day that we delay our decision. I think it is one of the hardest things a mother can do to tell a medical professional that this procedure they feel is best for your child is not something you are going to do. However we both have different opinions on what is best for Elsie.
I’ve been conversing with a few parents in the cystinosis community about their experience with the NG tube and it definitely differs per child. The majority said their children really didn’t like it and to avoid it if we can but then there were others whose children didn’t like it at first but got used to it quite quickly. Our Nephrologist told us that in their experience there’s about a 50/50 chance it works for children (and we all know how lucky my family has been so far with odds!). And something a few parents agreed on was that sometimes it’s best to trust your parental instincts, as we know our children better than anyone.
With all of that being said we have decided to give the NG tube a try. The real kicker for me was when our Nephrologist said that we could be risking further kidney damage by not quickly getting her properly hydrated. So far almost all adult cystinosis patients have needed at least one kidney transplant, but for some of those that had it caught early and stuck to their medication schedule, they are now in their 20’s and haven’t needed one as of yet! Everyone is different but if we can avoid as much kidney damage as possible, and keep her cystine and electrolyte levels balanced, we might also be able to put off a kidney transplant until Elsie is an adult. Which goes hand in hand with me wanting to spare her from all the uncomfortable procedures that I can.
Elsie has surprised us before and taken really well to things we never thought she would (like sleep training) so we are still remaining hopeful that the NG tube will be successful for her. And as I’ve stated before it seems like most things with cystinosis are more traumatic for the parents than the children. Elsie is booked in for this procedure on Wednesday next week so I will be sure to update everyone on how it goes and until then we can only hope for the best!