Yesterday was a great day at CHOP. We made a lot of advances in the feeding routine. We were trying 2/3rds the volume and rate as the goal before discharge. Ian tolerated the one hour trial of 105 mLs perfectly. We moved the second feeding to 50 minutes, the third to 40 minutes, and still.... perfection. Ian was responding exactly how we needed him. The fourth and final feeding ran for 30 minutes. Ian did perfectly again. No signs or symptoms of dumping or overfeeding.
Overnight, another feeding ran for 7 hours exactly at 2/3rds again. Ian had no troubles and we were cleared to move forward to full strength and full volume today.
Apparently, too much of a good thing....... turns into a bad thing...... well, for today at least. Ian’s body and tummy accepted the first 155 mLs feeding wonderfully and we had no retching or gagging, or vomiting. However, at 30 minutes past finish, the glucose sticks began. Ian’s first stick was 134. This isn’t bad, but not exceptional..... as it was a little high. At 60 minutes, another stick was done. This time, we were not so lucky. Ian’s blood glucose was 45.
While this is not detrimental, it isn’t acceptable either. once blood sugar levels reach the 30’s high risks of seizure and brain damage can occur. Within 30 minutes, Ian’s sugar had dropped 89 points. This is huge. Ian’s tummy was clearly dumping the feeding. To refresh, the stomach cannot always “remember” or regulate how it empties after gastric surgeries. Sometimes children grow out of this and sometimes they don’t. It’s a 50/50 crap shoot. This is called late-dumping, or post-prandial hypoglycemia.
The feeding recipe we were trying was similar to what we had before, but had no cornstarch or pectin added to help buffer blood sugars. This trial was done to see if Ian really is dumping. According to yesterday’s events, we were good to go. However, once the volume increased, the dumping began. unfortunately, we cannot simply go back to the volume of yesterday. That volume would not offer nearly enough calories or protein-fat concentrations.
After the low blood glucose, Ian began another feeding right away to help pull up the sugar. This was only a brief and temporary fix while the dextrose water was arriving. The dextrose water comes in small bottles in hospitals like Pedialyte does. We were able to push 25 mLs through the G Tube to bring his sugar back up into the 120s after 20 minutes. As we proceeded to the next feeding, once the temporary one was stopped, our Dietitian returned to update us on the new plan.
The new plan is very similar to both our original and the attempted plan. We seem to be floating in the middle. We are back to adding corn starch and pectin to buffer the blood glucose with longer chain sugars and slowing the process down... but we are sticking with the same increase in volume and calories. This will give Ian an opportunity to grow while still keeping his sugars buffered and safe.
It seems as though Ian will be following a “diabetic” or “ketogenic” diet for most of his life, unless he completely outgrows the late-dumping, which is not likely in his surgical position. Even though we may be tube free down the road, Ian will probably always need to be a “grazer” and focus on what simple versus complex carbohydrates he eats. But the ketogenic-diabetic diet is another day’s post.
After Ian tried the second round of feeding with blood sugars, glucose sticks were taken at 30, 60, 90, 120, and 150 minutes afterwards for mapping. At 30 minutes, Ian’s sugar was 240..... not what we had planned, but nothing detrimental according to the doctor on call. He mentioned that if we took our blood sugars within 30 minutes of eating that we too would have high numbers such as these. At 60 minutes Ian’s sugar was 140 or so. This is a much better number than 240, but not a big enough dip to show dumping, because the number is certainly not considered hypoglycemia.
When the sugar was checked at 90 minutes it had raised to 177. This is from buffering and also from the fact that he had a few Cheerios in between :) Once again, no room for alarm. At 120 minutes his blood glucose was 89 and at 150 minutes, 107. This trial was considered a success.
Overnight will be a bit different. Ian did very well with the continuous feeding overnight at a higher volume than the daytime feedings. Tonight, he will be getting one continuous 8 hour feeding instead of a 7 hour feeding. This will help his sugars and increase volume. he will have the pectin in overnight to help slow the entire progression of the food through the stomach and intestines, but no corn starch. The corn starch is needed more for shorter, more bolus type, meals.
The plan is still to use the Peptemen Jr, water to dilute to a good osmolarity (density), and add the long chain fats (Microlipids) and long chain sugars (dextrose- corn starch). the pectin is OTC and will help make the food more “molasses-like” in order to slow the process down completely.
Tomorrow will bring new food challenges. In the morning, one hour after he finishes his overnight continuous of 8 hours, they will check sugars again to see if things are stabilized. If all is ok, we will have another meal or two here at CHOP and then be able to come home. If things creep up again or we don’t do well overnight, that plan may change. Poor Ian’s toes look like they have Chicken Pox because they are covered in little red spots and scabs. We have been giving lots of toe kisses and having toy playtime!
This morning, when our Dietitian was visiting, we found out that not only had the Nissen slipped and then herniated, but it had twisted as well. The way she spoke of it implied that there was no way Ian was ever going to be able to learn to eat with it being the way it was. Imagine the stomach, clamped at the top, then having that clamp slide almost halfway down over onto your stomach..... then push 2/3rds of that up through your diaphragm, and then twist it all around. The only image that comes to my mind is a balloon animal!!! Thankfully, all of this is gone now and we can make progress. Despite the sugar issues right now, Ian has not retched, gagged, or vomited once! This is incredible and a huge step forward in our book, and in Ian making eating a positive experience.
Ian spent most of the day being clingy, interspersed with moments of laughter and squealing. he can go from high to low in a matter of seconds and sometimes even laughs and cries at the same time. His naps were interrupted by lots of needles and he very much needs a good night rest.
His G tube button site is very inflamed. This is not a new site. The G tube stoma was able to be kept in the same place, thankfully. However, since the site was used as the 5th laparoscopic access point, it is irritated. He also enjoys sleeping on his belly which as irritated it more. Right now it is very red and inflamed and incredibly tender. It does not look infected, but seem to be very very sore. The doctors are going to see what it looks like in the morning, after using some special split-IV gauze over it tonight and decide whether to use some Nystatin powder to help it clear a bit.
Trying to clean and dress a G tube, and then place an overnight belt and extension, on a very sore button is never fun...... especially since he has already been stuck over a dozen times today for glucose checks and is beyond cranky.
The day has come to an end and we have said goodbye to our nurse from the last four days. She was exceptional. Her kindness and caring was always reassuring. Ian even gave her a hug goodbye and a high five, despite the dozens of blood sugar sticks, IVs, button checks, IV checks, and overnight vitals.
I once again sit in the hallway filled with windows, looking out onto the streets of Philly. We are on the 4th four; the building has eight. I am able to see the green, purple, and pink glass panes in the front of the hospital, surrounded by huge glass walls. At night, the hospital lights up the colored glass panels with colored lights. The reflections are beautiful and can be seen from buildings all over downtown since the building is so high. The space and light between them brings a lots of quiet and peacefulness to the hospital. We are very blessed to be able to see these from Ian’s room.
|CHOP at Night|
I was very thankful today to have my anchor tattoo close by. It is times like these that I wanted it in the first place. It is very easy to reach over and touch, to look and see, and to feel so close. there were times today when Tom and I both needed breaks. I was able to stay for the medical concerns, while Tom took a breather; then he helped with sleepy time while I could come and write about the day.
When the night comes, and all begins to get quiet in the hospital, I enjoy watching the town below become quiet. Unlike lots of other cities, downtown Philly near the hospital becomes very quiet at night. Most of the surrounding area is medical... CHOP, offices, PENN, the campus and such. Having the quiet time gives me a chance to recharge for the next day. I don’t know what tomorrow will bring, but I hope it holds more laughs than tears, more successes than failures, and more happiness than sadness for all of us here spending the night in the hospital with our littles ones.