So Thursday we were planning Baby GL's homecoming for Friday. The goals were to move him from a continuous feed onto his normal bolus feeds every 3 hours. This doesn't sound like it should be complicated, but thanks to the inexperience of a resident Baby GL had a few problems. On a continuous feed Baby GL gets 20 ccs of milk over one hour. On a bolus feed he gets 60 ccs over about 20 minutes. The process of weening to bolus, as done in the NICU, was to move slowly decreasing the time that it takes to give 60 ccs. Maybe working down from 3 hours to that 20 minutes. The resident decided to skip that weening process and tried to feed Baby GL that 60 ccs right away. Well, the outcome wasn't good. Baby GL ended up aspirated and dropping his breathing to the point of turning a shade of blue. This incident could've cost him a lot more time in the hospital which is nothing compared to what could have happened.
Because of that incident the resident recommended the GI doctor come see Baby GL for his issues with aspirating and reflux. So Friday when we were expecting to take Baby GL home, instead we were going to meet with the GI doctor and I was swelling with anger. On the phone I spoke with the nurse, the resident and then finally this GI doctor. After hearing his opinion about what Baby GL was doing he recommended a couple procedures. One of them being surgery, which as a parent makes your stomach sink. I was so angry to hear that we needed to take action on something that was a mistake that could've been prevented. It was really just the icing on the cake. Our whole experience in the hospital was less than satisfactory. We missed the care he had in the NICU. The nurses were so cold and just treated him like another number coming and going. It was so disappointing to witness.
On that Friday when I arrived at the hospital, about ready to raise the roof, that resident was saved by a very pleasant and helpful nurse. I vented my frustrations to her and she was nothing but wonderful to listen and take such great care of Baby GL. She went out of her way to make him comfortable which was so appreciated.
I did get a chance to speak to the GI doctor while I was there and cooling down from my rampage. He reviewed the procedures we discussed over the phone, with pictures. The first was major stomach surgery that would stitch the top of the stomach to shrink the opening. That would reduce most of the reflux from being able to escape from the stomach. This was not something I was about to put my child through.
Our next option was to do a G/J tube. Baby GL already has a G-tube that we feed his directly into his stomach. The G/J tube would be in place of the G-tube by directing a tube through the stomach and directly to the intestine. With the stomach empty there wouldn't be much of anything to reflux. With this option Baby GL would have to be on continuous feeds only because the intestine could not handle a full 60+ cc feeding in a short amount of time.
The only other option we had was to do nothing and only be on continuous feeds to help digestion. Still that would not reduce his chances to reflux and possible aspirate. I felt that we needed to doing something to prevent another episode of aspirating. If it happened at home and we couldn't get him to the hospital on time, I hate to imagine what could happen. The decision was made to do the G/J tube.
After the GI doctor reassured me that on a G/J tube Baby GL wouldn't be constantly connected to a feeding tube I felt better about that choice. My concern was that if he went home on continuous feedings how would he have baby time. We are able to make a schedule of his feedings that would leave plenty of time throughout the day where Baby GL wouldn't need to be eating and we could do tummy time and may learn to crawl. The other great news was that we could continue working on oral feeds. I could continue giving small amounts of milk through a bottle and nursing. It was the best choice to make under the circumstances and to keep him safe at home. The best news came from our wonderful nurse when she told us the procedure could be done
Saturday morning and we could get Baby GL home on Sunday.
The procedure was very quick and there was no need to medicate Baby GL. He probably doesn't even know the difference. He was really amazing going through all these procedures and still being smiley and happy.
Baby GL is now 7 lbs 6 ozs and growing fast. He did come home today. It was frightening putting him in his car seat after what happened the last time, but he took it like a troop. Keep the pacifier near by and let him look out the window. He's spent most of the day sleeping and hanging out with Daddy. We start again getting used to a routine, but it's well worth the time knowing he's home again. He's getting ready for his coming out Baptism party with his cousin, he's even been practicing his wave.
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