I know it is important to always have hope and stay positive, but it seems whenever Tom and I feel like something is “in-the-clear” or we have taken a huge step... our happiness is quickly shattered, then that thick feeling like a heavy blanket comes over you. Unfortunately, even though Ian’s glucose levels stayed between 239 and 79, (perfectly normal for the intervals it was taken) the second trial this morning was not as successful. Ian’s numbers began fine, and then at 90 and 120 minutes after feeding completion, he dropped to 65 and 50. Ian’s safe cut-off level is 60.
Plan C quickly came across the plate and we took a good look at what was next. Fortunately, Tom noticed it was very similar to the pre-op recipe and routine. The only changes were more pectin than pre-op (to slow movement down) and .25 tsp more of corn starch per meal (to slow digestion). Ian’s daily meals and overnight meal were going to be the exact same dose, but at a slower rate. This didn’t seem right because if Ian was doing fine on what was going on before pre-op.... why would be moving backwards now?
After speaking with the Dietitian again, we made a few tweaks she said she would be comfortable trying. We left the recipe the same, but increased the rate overnight. Since the time was the same, Ian would be eating more food overnight than what Plan C would have given him... thus giving him more calories. She also said we could try increasing his daily rates to 45 minute feedings instead of 60 minutes. While this would not increase calories or volume, it would allow for less backpack-wearing time during the day.
*****If this sounds confusing, trust me, it is!! I have done my best to break it down and organize it so it flows in the mind. I have re-read this over and over all day to make adjustments. While it may not become crystal clear, re-reading down help... of course if you are ME, you make an excel spreadsheet with has every single number, glucose level, and detail about Plan A, B, and C. But hopefully none of you are as neurotic as me.... especially since it is someone else’s kid!! Without the organization, it is hard to ask the right questions and make the right comparisons to point out to understand.*****
It all boils down to the result that Ian responded superbly to Plan C both this afternoon an this evening. All of his glucose levels were between 65 and 100 which is practically perfect. The goal for Ian is to be between 60 and an unidentified high number, LOL. The number below 250 or so are acceptable depending on how recently he finished eating. The important thing for Ian is the low threshold and not really the high... as long as it isn’t creeping toward a ketoacidosis of 300+.
As I put together the spreadsheet earlier today, the underlying details became more clear. Ian’s issues tend to be with high volumes and high rates, and not so much higher densities of calories per milliliter. By adding extra corn starch and microlipids, Ian has more calories, higher density, and more longer fats and sugars to buffer the blood glucose. No surprise there as that was pretty much what was going on pre-surgery. However, we have still made a step in the progress direction. He is eating an extra ounce each day, giving him 44 more calories, and upping the density as well.
After an exhausting day of glucose up, glucose down, glucose running all around... ok, so that was a little lame... we were able to find what seems to be a middle ground between pre-op and gold standard. While closer to the pre-op end of the spectrum, it is still progress. And let’s not forget about the huge progress in Ian’s anatomy and reflux issues. His dysphagia (difficulty and painful swallowing) is much better and he is eating a little bit on his own everyday now. Today he ate half a french fry, three bites of cookie, a sunchip, 4 bites apple, a small part of bacon we broke off, about a dozen Cheerios, and drank about an ounce of Pedialyte..... not to mention took his Ibuprofen and Prevacid by mouth this morning one right after the other... totaling over 10 mLs. Ian hasn’t eaten this much in a day in over a year!
He has been such a good boy despite all the hospital ickiness. He is so cranky and bored and tired. I can tell he misses his bed, his toys, playing outside, his pool, and all his books and stuffed animals. We brought a lot with us, but it is never the same. All of his blankets that once smelled like his bed, now smell like hospital bed. I am sure they have lost most of their “homey” touch. Between his wagon rides, the playroom, and lots of space to run around in the hallways, he still has fun when he can. His new thing is playing with the corded phone in the room. He loves to “make calls.”
Ironically, whenever we leave the room door open, he closes it immediately. We leave it open to get “fresher” air (hospitals never have fresh air) and open-up the space to feel amongst the non-prisoned. It is almost as though Ian is locking them out. He often looks into the hallway before closing the door. Today after smiling and laughing with a nurse he gave her a high-five, following her to the door. She stopped to speak with us once more. Ian proceeded to reach over and push her leg as if to say “Hey lady, it’s time for you to go now.” Tom and I simply laughed..... fortunately, Ian did not see this.
We will be here through the weekend now to make sure all the trials are successful for a full 24 hours or more. Hopefully, we will be able to go home on Monday.
|"Hey nurses.... My room in 15 minutes!"|