Easter at CHOP turned out to be almost as fun as Easter at home. We made sure to bring Ian’s Easter basket to the hospital when we left Friday evening. It was filled with goodies for him. He had fun playing with his new toys, and of course, the Easter grass. He was filled with smiles and laughter again... such a blessing.
Family was also here to visit today. All 4 grandparents were helping us celebrate the holiday. Even the hospital brought Ian a small blue bunny stuffed animal for the occasion. Ian especially enjoyed tossing the plastic eggs off the hospital bed and onto the tile floor in his room. He watched some new DVDs and enjoyed some new books.
As the day went on, he kept up his good spirits. His new favorite toy is the cushion that comes off the back of the sleeper couch. It is long and narrow. Since it has the feel and texture of the foam padded toy cushions kids play with, he loves it. He stands on top of it since it is only about 5 inches tall or so and then wiggles on it. He looks like he is surfing.
This wiggle hips dance he does now to most music he hears is too cute. He’s our own little Elvis. He also makes fishy mouths now and is beginning to blow kisses. He is waving when everyone leaves. When the medical professionals of any kind enter the room, he is always suspicious of them, but is never reluctant to wave when they leave... almost to say “Bye bye, don’t let the door hit you on the way out lady!”
Today was not a very medical eventful day... which was kinda nice since it was a special Easter day. The GI doctors are still planning on the Upper GI series tomorrow sometime. He will be an add-on, most likely in the morning time frame, nothing definite yet. When he is done eating at 4am, they will begin his fast. He will need a certain amount of time without food before the study is done. IV fluids will start when the fasting starts.
The Upper GI series will commence with the swallowing of barium..... this is always a chore, because Ian doesn’t drink, or swallow, without a fight MOST of the time. (Although he ate another french fry today) Once he swallows, the barium shows up on a radiographic video image on a screen. You can then see it move through his digestive system as white fluid on the monitor. This will show movement, such as reflux, and also areas of anatomical defect, such as his hiatal Nissen hernia. Depending on what they see, an Endoscopy or Colonoscopy will most likely be done on Tuesday. He will need more fasting and anesthesia for that procedure.
Back to today... we also received another consult from Enodcrinology. This time, and attending physician came. Yesterday, without my knowing, a fellow came. Not that she was perfectly capable of handling the case, but I could tell the attending was here because he did not agree with some of her thoughts and recommendations. He believes that there is no sense in running an Oral Glucose Tolerance Test, glucose drinking test. If Ian DOES have post-prandial hypoglycemia, or late dumping syndrome, and it was treated and is working, then he doesn’t see the point in testing for it. He recommendation is to continue “treating” the late dumping syndrome and if Ian begins to have trouble, then do the test.
However, he did offer to us the fasting test to see if Ian can stabilizes his own blood sugar without food. We accepted this offer. However, it take special staffing and blood draws. Because of this, it will be done after GI is done, and on the Endocrine floor. That way Endocrine nursing staff and medical teams are there to carry out the procedure. Ian will need to fast for about 24 hours.
The only other medical information from today is blood sugar testing. Ian ate his 3pm meal, and then the testing began. Sugar was tested immediately after finishing the feeding, and the every 30 minutes again for three hours. This is the same test that was run yesterday. The Endo doctor wanted it repeated. Ian’s post-prandial (after-eating) blood sugars were:
Day 1: Yesterday (Saturday)
Immediately after eating..... not taken
30 minutes after eating....... 106
60 minutes after eating....... 86
90 minutes after eating....... 89
120 minutes after eating..... 88
150 minutes after eating..... 89
180 minutes after eating..... 90
Day 2: Today (Sunday)
Immediately after eating..... 102
30 minutes after eating....... 99
60 minutes after eating....... 102
90 minutes after eating....... 105
120 minutes after eating..... 100
150 minutes after eating..... 92
180 minutes after eating..... 99
Back in January, when the current feeding regimen was tested before sending us home:
Immediately after............ 149
30 minutes after eating... 82
60 minutes after eating... 77
90 minutes after eating... 91
Once we get the GI issues (Vomiting, diarrhea, blood, and mucus) resolved, we can move on to Endo issues if need be.
We are still waiting for the Feeding/ Swallowing center consult. That will be a weekday, sometime soon. Most doctors here continue to agree Ian needs an intensive therapy program, especially after seeing him gag and retch after seeing and touching foods.
We finally collected enough poop to send off a sample for cultures and testing. We are still confined to the room until those return with negative c.diff results. If, for some reason, this... the 7th c.diff test should come back positive, who knows what happens then? They are not expecting a positive result, but hospital policy will not allow Ian to leave without a negative result.
While collecting the remaining poop sample, Ian decided to give the most normal looking poop ever this morning! Thanks Ian :( I made sure to notify the doctors that this is NOT what it looks like, ever!! Regardless, he did go again this afternoon, pretty normal as well.... at least one of those tested negative for blood presence. Once again, showing that blood is not always in the diarrhea, just about half the time, like we mentioned. I was corrected and told that the fecal blood test was POSITIVE for yesterday’s stool. Originally, we were told it was negative..... but we visibly saw the blood in the diaper. We were told today it was most definitely positive.
The previous post from today included some pictures of Ian this morning with his Basket along with a few cute videos. He continues to amaze me at how brave and “relaxed” he seems to be..... relaxed for a kid in a hospital, of course. I will make sure to keep everyone posted on the day’s events tomorrow. We are all curious to see what the Nissen is doing!!!
A few studies favoring Toupet over Nissen procedures when it comes to decreased side effects, such as dumping and dysphagia (difficulty swallowing)