GI Tube Consultation
Greetings to everyone!
Today we met with Dr. Bealer at Children's Hospital. Dr. Bealer is a GI specialist, and the consultation was to discuss Xavier's GI tube surgery.
As mentioned in an earlier post, Xavier's daily caloric and nutrient intake is (at best) half of what it needs to be. He is at a critical stage of development when his developing body is in great need for the nutrients and calories vital for structures which will come into play years from now. Just to name a few of these: brain wiring for various learning and cognitive abilities used later in life; his adult teeth, which are now collecting the materials they need to develop strong and healthy; his bones needing to maintain their density and strength. His body requires a steady flow of many nutrients over the next couple of years at least.
This has been Xavier's problem from very early in the womb, where he was nutrient-deprived due to the way the placenta failed to attach to the uterine wall completely. He has brought this problem out of the womb with him somehow. We know his body adapted, rather remarkably, inside the womb to manage the scarce resources. Perhaps his body his body has not learned to readjust to the more plentiful resources available to him now that he is outside the womb.
One thing is clear: Xavier has reached a very critical stage in his growth and development, and this problem which has plagued him so long is now his greatest enemy. It is also clear from the past two weeks of visits with many different doctors and specialists, that they (the medical professionals) have no idea what is at the root of this problem.
Dr. Bealer did a cursory physical exam of Xavier, and he had the opportunity to watch Xavier eat as he spoke with us. He walked us through the process, starting with a brief history of the GI tube, which has been around and effective since the Civil War. I think this fact calmed us somewhat about the GI tube surgery.
We discussed three possible surgeries, and we should know the way of it within a week (there is a discussion that needs to take place between several doctors and specialists before decisions are made).
- A simple surgery to install a NG tube (small tube through the nose to the gut). Though passing through the stomach, its interior end would feed directly into the small intestine. This is a temporary placement, the purpose of this tube is to build Xavier up with enough nutrition (through a special formula supplied through the tube) to heal properly from the next one or two surgeries.
- The surgery of the feeding tube. This type of surgery is very straightforward as it dates back to the 1860's. The doctor's language surrounding the use of the tube indicated he expected a longer than two month time frame; he, I think, believes the tube will be there much longer.
- The third surgery, one which Rebecca and I are wholly opposed to unless absolute proof can be produced for its need, is something called Nissan (or Fundoplication or GERD) surgery. This is used to manage acid reflux. Basically, it involves suturing part of the stomach around the part of the esophagus attached to the stomach. This helps reinforce the sphincter muscle there. This surgery in not reversible and has a long list of issues/problems/complications we don't want Xavier to have to deal with.
One of the things we wanted to know from the doctor today was "what good is the GI tube going to do if we can't solve the puking problem?" Hence, surgery #3 if medications don't bring the puking under control. However, in this is a rub. No one knows the reason for the vomiting. And the Nissan surgery brings no guarantee it will be effective against the acid reflux (one of the long list of "issues" attached to this surgery).
Rebecca and I have had some time to digest (pus possibly intended) much of what we have learned or heard theorized. We think (and we think our data backs this up) most of Xavier's vomiting of late (these last two weeks) is due to over-gorging: his stomach has shrunken a significant degree (as Dr. Abbey agrees) and is not capable at this time to hold large volumes. Xavier's vomiting is generally at night right after "going to town" (and exciting his parents!) on a bottle and draining it, only to urp it up within minutes, emptying his stomach. After cleaning him up, he'll take another 2 to 2.5 ounces then go to sleep.
The other time common with many of his vomits is forcing down his medication (his Zantac, which, for maximum effectiveness, needs to be taken at strict 12 hour intervals) shortly after he has eaten. The stress of giving him the Zantac (he fights it, and who can blame him? It tastes horrible!) gets him worked up to the point of coughing and defiant crying, and then his stomach empties.
Rebecca and I have decided to work this angle to try and get his stomach able to hold larger volumes.
- My sister, a dietitian, introduced us last December to a formula not based on cow's milk. Its nutrients are broken down to their base components so the body does not need to digest them, only absorb them. We picked several cans of this up today. It's pricey in the extreme (about 3 times Xavier's current formula), is available (by prescription only) from a single source in town, but we are hopeful and willing to eat beans for a while if it produces results. Rebecca has championed this avenue (she's a mom on a mission!) We learned this formula is used for infants and children who have allergies to cow's milk or have GI feeding tubes. We do have to take some care, as this formula is highly caloric. More than 30 calories an ounce can lead to kidney problems, and we are already mixing his formula at 28 calories per ounce. (note: we have consulted with Xavier's doctor and nutritionist, so we're not Ramboing this thing)
- Rebecca and I are going to do our best to keep Xavier from gorging himself beyond his stomach's limit, which right now is about three ounces. This means tracking his eating amounts more closely and the times, as well as scheduling his morning and evening feedings so if his taking of Zantac stresses him enough to vomit, he'll have little or nothing to vomit out. It also means taking the bottle away from him (especially at night when he is wanton to eat larger volumes) when he has reached his limit (this, as it turns out, is easier said than done! He is really strong and can grab the bottle away from you in the blink of an eye, or hold it tightly in his mouth leaving you to struggle pulling it out). You may have seen those signs which read "X days without incident". We are starting a similar sign of "X days without vomiting."
Of course, we are praying!
- for a calm stomach, no reflux, no vomiting
- for the Holy Spirit to teach Xavier how to eat properly
- for Father's wisdom with the doctors, and for the doctors
- for Father's wisdom for the parents--Rebecca and me--to learn how to recognize when Xavier has had enough to eat for one sitting and not let him over-eat
- For Father to heal the root cause of the problem in our little boy!
Always, we thank you for your prayers. Great is our God, Who reigns! Who supplies all our need according to His riches! Who fights for us! Who heals us of all our infirmities! Whose ability and power is more than enough!