Latest Feeding News

Lydia had her VCUG yesterday...went fine. Probably a couple of days before results, but the physician's assistant said that she didn't see anything alarming...we pray she is correct.

I talked to Dr Alberty yesterday...told him that we were in much need of guidance regarding the issue of the feeding tube. Gave him the facts: Lydia lost 2 1/2 oz last week...gained 1 ounce the next two days. He agreed that we probably shouldn't continue to explain away Lydia's variability in feeding. He recommended that we go ahead and get the G tube...it would relieve any problems getting her to eat on a regular basis...she would still continue to eat as usual...we would just suplement what she doesn't eat by using the tube. He also explained that it can be permanent, but it doesn't have to be. If she gets a g-tube, then starts to eat well on her own for 6 mos. or so, we can just take it out. It was obvious that it was weighing heavily on me, I think...he said, "Y'all really don't need to be agonizing over this...kids get G-tubes all the time...it's not like we're removing a limb..." I sort of laughed...but, he did acknowledge that there is an emotional issue involved too. He thought it was more of acknowledging that "there is really something wrong with my child if I have to do this." I explained that we've had that understanding for quite some time...it's not that. I just don't want to put her through something (and all of us) that may end up being unnecessary.

But....during our conversation, we also talked about Lydia's reflux...he asked if we felt that was resolved...I told him that I don't think that her feeding problems are related to reflux anymore.. He said that either the Prevacid is working...or maybe that she has just outgrown the reflux (which tends to happen in most typical kids around Lydia's age). I told him about her gagging and gasping episodes that she does sometimes when she eats but mostly when she takes medicine. I also told him about an email I had gotten from a mother of a child with Rett syndrome & mitochondrial dysfunction...who talked about the coordination of nose breathing being a problem. The problem of nose breathing coordination is that a person can suck and breathe through their nose at the same time with no problem....swallowing and breathing through the nose is a different story...it can not be done simultaneously....it has to be alternated. That presents a problem for some kids with mito issues. I've started to think that this may be Lydia's problem when she gags and gasps. That lead him to think that we need to repeat the pharyngogram (swallow study). We did one when Lydia was about 6-8 weeks old...results were fine, but we haven't done one since. The plan is this: pharyngogram scheduled for April 9th...follow-up with Dr Alberty April 11th with a plan to schedule an appt with a surgeon for the G tube.

In the meantime.....Lydia took 5 oz last night, then slept all night for the first time since her biopsy...she has taken at least 3 oz at every feeding so far today....4 oz at her last feeding. I guess she plans to keep us guessing!! These feeding habits lead me to believe that maybe she doesn't really need a feeding tube, but I've seen her appetite pick up like this before...then decline again. At least we'll have a few weeks to observe her feeding before actually inserting the tube...that may lend some pertinent information...to let us know that we are making the right decision or to let us know that we need to change our minds again. I'll continue to lean on the Lord to guide us to the right decision and to ask Him to be with Lydia through it all.