Friday, July 21, 2006 - Home Sweet Home

Our little guy is home again. He has been coming and going the past week, sleeping at home, "playing" at the hospital. This was a nice break for him and a good training process for us.

Lots has been going on in the past week, although none of it has explained what started this whole episode. Lots of things have also hindered doctors plans/trials and we often had to revamp our plan of action. This started last week Thursday when his IV came out yet again (3rd time). The poor guy didn't have any veins left after being pricked so many times that the IV nurse gave up and said they would have to come up with a different plan. That plan involved a feeding tube. They put the tube in that day and we began to slowly give him his formula through the tube. This did not sit well with James, he would cry and moan with feeds, he had vomitting episodes, he hated it whenever we came near the tube and he just was not happy. On Monday they did a chest x-ray and at the same time the x-ray showed that his tube was too far in and was sitting in his bowels. They had to pull it back 11.5cm ... no wonder the poor guy was so unhappy. So with the tube happily relocated we could see a difference in his feedings pretty much right away and with some changes made to the "plan of action" we carried on. He still didn't like us coming near him b/c he associated it with pain, but not so much moaning and groaning anymore.

Unfortunately this correctly positioned tube only lasted one night and then came out. It seems it was not taped down good enough, or he sweats so much that it loosens the grip of the tape, whatever the case it came out and we had to go through the whole process again on Tuesday. This time they were wise enough to do an x-ray right away, which showed that is wasn't in far enough, so they had to reposition and re-x-ray. That tube didn't last long either and on Thursday we had to go through the process again. This is our last try on this type of tube: if this one only lasts a couple days then we will put our foot down and require them to put a G-tube in. This tube is put directly into the stomach and can last a lifetime ... not the tube itself but the spot where the tube goes in. Sounds awful but it is actually common, especially for people like James who are required to take (very yukky) medication many times a day (before each feed in James' case). It's a bit more invasive to put in, but it's long-term and putting a "fresh" tube in is something I can do ... instead of wasting a day in Emerg getting a new one put in like I will have to do now. Not to point out it would save James from having to undergo so many x-rays everytime the tube is put in ... but all in all ... we hope the next time the tube comes out we won't need to put it back in .. at least not for feedings. The doctors have suggested a G-tube for medication and I'm afraid we'll need it as I already have enough trouble getting tylenol into this kid, let alone disgusting medicine.

James slowly began to stabalize this past week, and by Tuesday his breathing was pretty much back to normal and finally no more fevers. We never were able to figure out what caused the fevers and sent his body/breathing to working overtime. It is believed he simply picked up a virus/cold or something of that assort. Not very comforting when you think of how easy it is to pick up these. What turned him off his bottles/formula?? This is even more difficult. We had just started introducing a new formula, but James has always taken change quite well, so this hardly makes sense. We had also started adding medication to his formula ... yukky tasting medicine ... he took it at first, but maybe eventually he thought enough is enough. Or was his stomach just so upset/irritated that he associated it with his bottle?? Doesn't make sense since he's gone through other sicknesses and always found the bottle to be a comfort. Or maybe, just a combination of all of the above. Whatever the case ... he's a true dutchman ... stubborn as anything.

We tried many different ways to get him to drink, whether by cup or bottle ... but nothing worked. Putting formula in his cup turned him off of using any of his sippy cups, no matter how hard you work to show him that it's juice in the cup and not formula ... he will not touch sippy cups anymore!!! We bought a new Nubby cup, one try of that and it went flying. He sees the bottle and is shaking his head and putting his hands out to stop it from getting near him. He seems to have a mental block and we have to figure out how to get past it. In the meantime we figure it's just best to pack away anything that sets him off and try other measures until he relaxes a bit more.

We were excited yesterday and today when we finally made slight progress in the feeding area. On Wednesday night we tried something new ... no nighttime feeds. I did his last feed a 10:30 and then didn't get up during the night to feed him. He pretty much slept through the night, cept having to rock him back to sleep at one point. Thursday morning his tube came out at the beginning of his feed. The stomach has to rest before they can put a new one in, and we decided to give it extra rest and see if he would drink. 17 hours later we had managed to get all of 4 ounces in him via a cup and straw. Not much, but a big move forward. The trick? ... flavour the formula, put it in something different/new and call it juice. So he didn't guzzle it down, but at least he drank some. Today he drank 8 ounces. It's not likely we'll be able to get enough in him via cup since he really drinks best with a bottle, but right now we're happy to see some progress and hope it continues in this way, and at least 8 ounces means one less feeding. Doctors, dietician and therapist all believe it will probably take about a month to get him back to drinking everything orally.

Other then the feeding issue we did seem to be visiting lots of doctors, etc between play time. We were happy to see how they really tried to cover everything. The respirologist confirmed what the other doctors said. James does seem to have some mild lung disease, basically his lungs are "cloudy". At this point we are going to do nothing more then monitor him. If it gets worse or if we continue to find him in Emerg with respiratory distress then they will have to do further investigations. These investigations can be quite invasive and so they rather not do them unless necessary. His bone density test was done, but we haven't heard results on that yet. His stools tests continue to show evidence of blood, so on Wednesday they switched his formula yet again. They felt that his old formula may have been the cause to his hemoglobin levels dropping (a sign of bleeding). These levels were low already when he was first admitted. He could have had blood in his stools for some time even though it was not noticeable blood. They felt this could be from the formula he was on and decided to switch to a new formula. His old formula had broken up the protein molecule, but his body still had to break it down into amino acid. His new formula does not have protein at all, but straight amino acids so that his body can absorb it directly. We'll see how this change goes; so far he is tolerating it and we'll wait and see if his stools clear up.
We were also advised that his growth hormone levels are low. We did not manage to get in to the specialist for this before we were discharge. There is not any extreme urgency, but something they want to further investigate. Even though James will grow at a slower rate, his growth hormones should still stay in the normal area. There have been a couple cases where the levels were low and they had to do hormone therapy to help with growth. We will be looking in to whether this will be necessary.

So now we're home. I'm glad that we can hold off a bit on the night time feeds, as this can mean getting some rest. It takes an hour to pump an 8 ounce bottle. This means getting up and prepping his formula & medicine, etc. get him going, hop back in bed, alarm goes off after an hour ... unhook and flush his lines, clean up the feeding bag, back into bed until two hours later alarm goes off and start procedure over. After a couple nights of that I was beginning to think I was better off staying in the hospital, at least the nurse does it all there; all I had to do was comfort James so he would go back to sleep. We have tried to do his feeds faster, but this did not sit well and he vomitted. Once we know he's stable on this new formula we may try speed them up again. Speaking of feeds, it's almost 11pm and I have to go get his last feed for tonight going. Tomorrow, if all goes well and no reactions to his formula,we are finally allowed to start him back on solids. He shows much interest in this and if we're not fast enough he tries to swipe our food, so mostly we try not to eat in his sight.

But all in all ... James is James again, each day he got a little perkier, brighter and faster ... today he was really back to his old busy self ... so nice to see!!! We have been forwarned that we will likely see ourselves in the hospital more often in the future ... unfortunately we can't reserve a room!!! :) Suddenly I am thankful for living in the city (but yes, still a country-girl at heart)!!!
We continue to thank everyone for their support and prayers. We pray that we will not need to write again soon!!!