TPN at 10 P.M.

Friday was an eventful day for the whole family. For one thing, it marked the arrival of Kiyoshi and Perry from Connecticut! Aidan got to play hookie and greet them at the airport with Dad, which was a much needed boost for everybody.

Back at the hospital, Colin had a very busy day, kicking things off with an EEG, followed quickly by another ultrasound. The EEG was intended to check for evidence of seizures, since he had some irregular eye movement the day before. Although we have never recognized seizures in him before, it is possible that he had them even before he was diagnosed.

The EEG is laborious to conduct, since it involves the placement of numerous leads to the child’s head. Because Colin doesn’t have much hair left, the technician used pieces of gauze on top of the leads to help them stick. To dry the glue, she also blew air on the wet leads with what looks like a metal pen hooked up to compressed air.

It’s smelly and messy and required that Colin hold his head still, often in awkward positions, while the leads went on. At the end of all this, she said that he had to go to sleep! Although it seemed in impossible request, we had to at least try, and the initial attempt at snuggling yielded a lot of wiggly feet. However, Colin eventually dozed off and provided the necessary somnolescent brain waves.

To make matters worse, he had to wake up for more readings at the end, so we had to disturb his finally-peaceful rest! Colin was extremely unhappy about this and resisted but did eventually wake up, and if he wasn’t fully awake he certainly got there after we used acetone to remove the leads! It was just as well, since he had to go to get an ultrasound shortly after we were through.

During the ultrasound, we determined (again) that he is NOT pregnant, which was a tremendous relief. They were checking to make sure that he did not have any problems around the G-tube site or the entry area of the VP shunt. Although the radiologist did not perform the exam, he did look at the pictures while we were down there and was satisfied enough to not request additional or repeat shots.

Although Colin had improved several days before after pooping on the physical therapist, he continued to have excruciating belly pain that was not relieved with bowel movements. One theory, based on increased redness and tenderness around the G-tube site, was that this was part of a phenomenon where neutropenic children have sore and inflamed G-tube sites and trach stomas while their counts are low. This resolves as the ANC rises.

The concern is that he actually had an incipient infection, either of the G-tube site or related to the entry of the VP shunt into the peritoneal cavity. An infection would, on the contrary, worsen with rising counts as the body regained its ability to actively fight infection.

Ultimately, we never heard anything about either test, and we are assuming that no news is good news. Even better, Colin improved clinically and his ANC rose to 500, which is clear indication of a positive trend and pulls him out of the extreme danger zone. Gauging by his heart rate and behavior, he was much less agitated and uncomfortable and didn’t require any pain medication until late at night, when he again complained of belly pain.

That said, the team here is still puzzled by Colin’s diarrhea and wants to make sure that we get a proper G.I. consult on Monday. in the meantime, they are putting him on total parenteral nutrition (TPN) in order to give his gut a rest. Instead, nutrients are provided through the I.V. line.

TPN is not the ideal means to give nutrition, partly because it completely avoids the digestive tract and the natural digestive process. It is fundamentally unnatural and increases the risk of line infection. However, we are assured that this is a temporary measure and we will hold them to it!

Colin had just gotten used to the idea of “eating” through the G-tube and we have now disconnected the tubing (he still has to get flushed through these ports, but he doesn’t even have the extension tubing attached most of the time). Days ago, he pointed at the feeding bag to indicate that he was hungry. It’s unclear how he will experience TPN, especially since his belly won’t be full and his intestines won’t even be involved.

The switch to TPN also means that Colin has to stay in the hospital for four days while they ramp up to the proper level of glucose in the bag. We also have to be trained in the proper delivery and maintenance of the bags. The blend of nutrients and minerals is adjusted daily according to his lab results and then we add a multivitamin to the mix. We appreciate the importance of performing these duties in a sterile manner to preserve the microbiological sanctity of his line.

It’s great to have this technology available but still is a depressing way to feed a child, especially one who formerly took such pleasure in the act of eating. To first take his mouth, then his stomach, then his intestines out of the equation adds continued insult to injury!

At this stage of the game, the introduction of TPN (administered, by policy, at 10 P.M. here at St. Jude) is a relatively minor event. However, the larger and more important fact is that the doctors are now focusing on his diarrhea, which formerly was farther down the list of concerns as an annoyance, not a matter that demanded serious scientific investigation.

We are heartened that Colin’s condition holistically has improved enough to allow the doctors to focus on details of Colin’s case that have otherwise remained opaque. This examination also underscores exactly how complex he is as a patient. Although some of the questions are different, he is no less puzzling to the physicians here than he had been in New York.

Another milestone that bears mentioning is that, according to Colin’s latest eye exam, the sixth nerve palsy that has given him problems with his right eye has improved significantly. He no longer needs patching of his good eye and the doctor felt that he would very possibly escape corrective strabismus surgery.

Again, while we’re happy that there is a solution to that problem, we are very glad that Colin may be able to skip another surgery! Also, improvement in that nerve gives us greater hope for recovery of all but the eighth nerve (hearing). It seems like his facial paralysis is also getting better, though the difference is extremely subtle to us.

All of these developments are irrelevant to Colin. Kiyoshi’s visit today was a big boost for him, especially since he’s accustomed to watching Aidan and Kiyoshi run around like banshees after school. He used to join in on the scrum when possible.

We constantly remind Colin that he will return home and regain full functionality, but there is nothing like actually seeing someone from home to make him feel that this is true.

As we begin the process of planning for radiation, it seems that there is a large gap between the initial consultation and the initiation of therapy. This may provide an opportunity for all of us to return home around Christmas for at least a short stint before radiation begins.