Saturday, November 20 - Day +38

The last few days have gone pretty well. We are seeing how Collin does without the TPN, and already I notice a difference. The vomiting and diarrhea have decreased, and he has more interest in trying to eat, especially lunch and dinner (I don't think he's very hungry for breakfast since he gets the tube feedings over night). I have slowly increased the rate of the tube feeds, and he is up to 30 mL/hr now. He's getting two cans (250 mL each) overnight, which is what he used to get; it's just still at a slower rate, but I think soon he'll be back to the 50 mL he was used to. Now that he's not getting the TPN, it's nice not having to carry two portable pumps over my shoulder in the evening as I carry him through the house, and once he's back up to the 50 mL/hr, I can just give him the tube feeds while he is sleeping, so I won't have to carry around the feeding pump either.

Wednesday Collin started back up with the outpatient OT. Thursday the Early Intervention team came back to do an assessment so they can get home therapy services started for him as soon as possible. Today we waited for an hour and a half for the ophthalmologist to take a five minute look at Collin's eye; thankfully the abrasion is healing nicely, and we can now go to every three hours with the ointment (instead of every two hours). The ophthalmologist talked about injecting Botox into the muscle that is causing Collin's right eye to turn in so much. About a week after the injection, the muscle would relax enough to allow the eye to turn out. The effect would last for about three months, and would enable the right eye to see better when the left eye is patched. The injection would be given under anesthesia, so it may have to wait until the next MRI, which will be done in January.

Last night as I was doing the nightly flush of the Broviac lumens, I noticed one lumen has a small hole in it. Of course it wasn't the one that was used to draw labs earlier Friday in the clinic, where it could have been addressed during normal daytime hours. I called the hem/onc unit desk and spoke to our nurses there, because obviously a hole in the line is a possible route of infection. One of the attending physicians was right there, and he consulted Collin's primary oncologist. Since Collin didn't have a fever, and because most likely at that time of night the ER pediatric surgical residents wouldn't necessarily be familiar with how to repair the line, I was told to chloraprep (clean) the outside of the lumen, flush it with heparin, clamp the line above the hole, and tape sterile gauze around it, then come into the ER early Saturday morning so it could be repaired and he could have blood cultures taken and be given a single dose of IV Vancomycin (antibiotic). So Collin and I went to the ER this morning. We waited for quite a long time for the pediatric surgical team to finish with an appendectomy; then they came to see us. After making a few calls to central supply, the OR stockroom, etc., they determined the hospital doesn't have a repair kit for a double lumen catheter, only single lumen catheters. That the hospital doesn't have a repair kit for a double lumen catheter that is commonly used in hem/onc patients, that was put in by them, whether they don't stock it or it doesn't exist, blows my mind. Since the only other option would have been to take Collin to the OR and surgically replace the whole catheter, they told me to keep it clamped and not use it, and then talk to our oncologist at our clinic appointment on Monday. After being there for four hours, I was ready to leave at that point, but they wanted me to wait longer to make sure that we didn't need to have the IV dose of Vancomycin. I waited about fifteen minutes longer, and then told them I wasn't waiting anymore, since I had already wasted four hours of my time for no reason, it would have to be infused over two hours, the broken line couldn't be used since it couldn't be repaired, and the surgical attending didn't feel it was necessary. They had me wait another minute, and finally got the answer that it wasn't necessary, but they were to draw a blood culture before we left. Finally we were able to leave, but I was very annoyed. The surgical attending didn't seem to feel it was a big deal that we were down to one lumen if the Broviac is only being used for blood draws, but I had always been told that the lumens could be repaired when they got holes in them (which isn't unheard of for something that is used so much), and clearly the hem/onc doctors and nurses have seen them repaired before. Since Collin is only a month past transplant and has only been home for a week, and if he gets an infection that he needs to be hospitalized for, having only one lumen could make things difficult, so to me it's important.

To make matters more irritating, when I disconnected his feeding pump and flushed the feeding tube this morning in the ER as we waited, I found a leak in the end of that tube as well. It is the area of the tube that is often held kinked when giving multiple syringes of medication so that the medicine doesn't leak back out as one syringe is taken out of the tip of the tube and the next one can be inserted. Again, it's a tube used hard multiple times a day for a long period of time, so it's not surprising. It was just one more thing to deal with, so when we got home I took out the old feeding tube and replaced it with a new one. At least that was an easy fix.

On a more positive note, Collin has been crawling all around at a pretty fast clip. Last night there was a trail of toys all over the floor that he had explored and played with, and it made me smile. He's laughing a lot, especially when he's playing with Neya, and it's one of my favorite sounds!