A protest to holiday weekends when my child is chronically ill

I thought my dislike for holiday weekends was going to end after we left the hospital. The dislike came about with the realization that everyone who is important to your child's care goes away for the holiday, leaving the place short-staffed, under-supplied, and unfamiliar with what is going on with your child. It continues to be the case at home too.

The durable medical supplies we were to receive are missing and no one is at the company to help with that. The infusion supply company sent me no TPN additives with the order... fortunately someone called me back within the hour, but now someone has to go into work over the holiday weekend and another person has to drive the meds here. It's not my fault, but somehow I feel bad about the situation. We seems to have "events" occur on weekends and holidays, and unfortunately it happens enough that I feel responsible, even though I haven't been the cause 99% of the time. Maybe people just get too distracted by their holiday/weekend plans, or maybe since Peter has so many needs things get missed here and there and it just seems that there are problems often since there are is so much room for error. My strongest opinion is that the companies get too big and we just become another number in the system, and as such no one gives much thought to the total picture. Our IV nutrition company seems to be short on Peter's needed items often. I get a note in the box of supplies that this or that was not in stock about 40% of the time, or something just may be frankly missing. If it were the same person each time handling the ordering, stocking, and shipment of supplies, I think we would fare better. Right now there are too many people who handle his orders from start to finish.

To add to the lack of relaxing here, Peter's main doctor in Boston sent an email that he will be away and if anything happens to contact the GI fellow on call. I never like getting that email and certainly don't share that info with Peter who I am sure would like to take that as a challenge to see just who I would end up contacting then. Hopefully Peter got all of his really sneaky tricks out last week with the PICC line break. He is teasing me now with his leaky G tube and by staying awake very late into the night.

The G tube is leaking SOOOO very badly now. A sanitary napkin is just not doing the same as the allevyn and aquacel and nursing pad combo that was keeping the leaks more contained and a little less in amount. With no durable medical supplies arriving as they should have, MY holiday weekend is not such a holiday at all.

A busy last two weeks...

The trip to Boston went well. Peter is a great traveller in the van! A little over a year ago he was needing to be air ambulanced to Boston. Now he is enjoyably riding in the van for 7 to 9 hours, and this time with the G tube clamped the whole time AND enjoying his ice-cold Elecare along the way. No gagging! Our biggest challenge in the trip was on the way up with the duodenostomy leaking twice. There we are in the parking lot of the gas station with Peter lying on the backseat changing the ostomy bag, mad at me because the sun was in his eyes, but we were unable to change that situation b/c the bag was already off before we realized the sun was the problem versus the cramped quarters and wetness. The second duodenostomy leak was corrected by removing the ostomy bag and applying an ABD pad and wrapping a diaper over that and then tackling the application of a new bag once we got to our hotel room a few hours later.

Our visit with the doctors and nursed in Boston went well. We were outpatient the whole time. Dr. Puder thought Peter looked very good - better than he ever has. We agree. Peter charmed many with his improved walking and impressive progress in vocabulary since his last visit two months ago. Peter has gained some weight and height, whereas at his last checkup he had plateaued. We are now able to stop his calcitriol (vitamin D), as it appears by labs that he is no longer having ongoing bone loss, but rather is now having good skeletal growth. Hooray!! We also are being encouraged to begin baby foods on Peter. I wasn't expecting that news at all. The idea at this point is mainly to help Peter get used to eating, versus gaining real nutrition from the food. He had his first baby food tonight, Gerber lamb, and he did quite well with it... just a few tiny spoonfuls, but seemed to enjoy it and tolerate it. Meanwhile we will also continue to go up in his Elecare feeds. When we get to 2 1/2 oz per feed then we will plan to test his outputs to see how well he is digesting what he consumes. We are at 50 mL per feed now, so we are 2/3 of the way towards that goal. If he can prove he is using what he eats, then we will discuss lowering the amount of TPN he receives each week. Also, we are getting to run the TPN over 12 hours now. It is so nice that he can run around that much longer free of something attached to his PICC line.

The upper GI went well. We didn't have any crazy ostomy bag repairs afterwards, which has happened in the past, but this time we were able to avoid. Maybe that is because I was prepared with every ostomy need I could think of and a side room available if we needed it, kindly arranged ahead of time by one of the nurse practitioners. The results show that things do flow in a linear fashion from the stomach to the ileostomy, without too much leakage from the other ostomy sites along the way. We will need to keep an eye on the duodenostomy that it doesn't begin to pouch or back up as we increase feeds. Peter does not seem to have developed any new fistulas and the stricture was unremarkable, which is also positive news. Dr. Jennings did point out that we still will need to know how Peter is circulating around the portal vein clot before any surgery could be considered, and to know more about the liver and bowel function. The gut still appears shortened even with use, so perhaps there is scarring causing the shorter gut versus just disuse. The bottom line seems to still be to keep feeding him and continue slow advances in the feeds, and we will continue these thoughts in two months when we are up again.

The leaky G tube still leaks... that is another story for later.

Then 36 hours after getting home the PICC line cracked!!! I don't know why, but it did. There was no trauma that I know of, but maybe it broke from the wear and tear of a toddler who occasionally tugs at it and who puts a whole lot of tension on it when he begins to walk away from his IV faster than one of us can catch up with the IV bag. We were able to get another PICC placed at CHOP two days later, and so far there is no sign of infection. Whew!!

I am hoping to post a photo or two from Boston soon. We finally made it to Boston Commons!!

Feeds. Gtube, and more toddlerhood

We are up to 40 mL per feed, five times a day!! We bumped up the kefir too, with 10mL in the morning, and 10mL at night. The G tube has been clamped for a solid 60 hours now and he is tolerating this change beautifully.

Labs drawn today show a hemoglobin at 10.6 and hematocrit of 34.0 which is a normal hematocrit AGAIN. Platelets are 83. We didn't get liver numbers, but he looks good and acts good, so we'll assume all is well.

Peter has started trying to stand while he is in the highchair and in the stroller if we don't heed his call to take him out as soon as he deems he should be allowed to get out. We are now adding on the "extra" straps that go over the shoulders to keep him better secured in the highchair. I don't have that option with the stroller. Fortunately he can't scale the crib yet.

He can't stand the word "no" and behaves as if it is a challenge for him to attempt harder. I am sure that those of you with toddler experience know well of what I am speaking about. Hopefully we are not far from a stage of greater reason and aggreeability where we can tell him to stay still while I am accessing his PICC line and he will cooperate and stay still instead of trying to grab the line, or where we can say let's fix that and he will let us fix the dressing versus trying to rip it off. (You can stop laughing now. I know he is a toddler, but I can hope!)

Increasing feeds and back on kefir

We are up to 165 mL elecare (24 calorie concentration)! Peter advanced to 30 mL per feed a few days ago, and today we have gone up to 35 mL per feed. He is still on the goatmilk kefir (10 mL) daily. We had tried goatmilk yogurt for a few days, as well as trying nothing with probiotics in it, and feel that kefir is the better choice. The bacterial overgrowth odors seem to be gone after about the fifth day, and the ileostomy looks like it is well-digested again.

We had a possible back up from the stricture about two weeks ago, where the G tube turned brown, then the fistula turned brown. (Two posts ago.) We didn't know what to make of it, but in talking with Dr. Kamin, it could have been the addition of safflower oil enterally. We are not going to pursue that further unless Peter's essential fatty acid profile tilts much further. His Omega 3 levels are high from the Omegaven, while the Omega 6 levels are low. This is expected on Omegaven, but should balance out once he gets on more feeds.

Also of great interest to us was finding out just what color is "normal" for ileostomy stool! Dr. Kamin said that on the elemental formulas like Neocate and Elecare, stool can be dark green, almost black. What we thought was old black blood (melena) and the black flakes that seem to pop up often seem then to be more likely to be what Elecare poop can look like. With additional reading online, it seems that consistency can vary, along with color too. Peter's ileostomy output has not increased, but we see such variation and know how easily he has bled in the past and have been told to still remain watchful and cautious as we advance feeds. With this knowledge and continued prayer and a feeling of calm now, we are increasing the feeds every 72 hours, by 5 mL per feed per day. He is fed five times a day, so that can add up in time.

Our mickey button is still a leaky mess. That of course doesn't help with getting all of the feeds into him. Both the mickey and the old G tube leak, so we went back to the mickey last week, hoping that its lack of hanging tubing would take some of the tension off the hole. Either device is leaky based on position. We have been told that we can try to shrink the hole by removing the device and putting on an ostomy bag, and then being watchful that the hole doesn't close. He has had this tract for two years, so the likelihood of a fast closure is not probable. We tried this method to shrink the hole just after the oil incident above and had a little success in shrinking the hole, but it is enlarged again. We are trying to avoid decompressing Peter at night anymore so there is no tension from the tube attached to the mickey button, and it is quite packed with aquacel and allevyn now to avoid movement. But Peter manages to move it enough when he rolls on top of someone or on top of one of his toys, so that it leaks and we lose some of the feeds. The hope for now is to keep pushing the feeds, stablize the mickey as best we can, keep up with the G dressing changes, and maybe with the extra nutrition he can try to heal that hole a little. If need be we can put the ostomy bag on him at night so he at least gets his feeds in, but I really don't want to be up several times in the night checking that the hole is still there either.

We go up to Boston in another week for an upper GI and an Omegaven check-up. Perhaps we will have more answers as to where we are headed with Peter... whether we need to go back to planning for transplant or whether we see some progress and continued hope in bowel rehabilitation.