Bumpy Road

You would think now that I'm home, with a computer at my fingertips, I'd have all the time in the world to keep the blog updated ... haha ... as if!!

James has been home for two weeks now and what a two weeks it's been ... I think I'd like to go back to the hospital, I got more rest and sleep there :) The six weeks in hospital were good for my pregnancy in that I was not doing anything strenuous ... kinda like the semi-rest that I'm suppose to be on anyways ... and maybe that's why I've made it through this pregnancy (thus far) with flying colours. The pregnancy has definitely gone far better then I thought and has been the least of our concerns in the last months. But when it comes to relaxing ... boy I've made up for lost time in the last couple weeks ... and now finally two weeks after coming home I can sit down and feel like I have my house back in order again and things more mentally organized (seems I'm always on the phone chasing after something or trying to figure something out) We're still not completely ready for baby (and the clock is ticking louder and louder every day), but the most important things are done ... the rest we will figure out with time. We wondered before where we were going to fit baby, but James' change in lifestyle and many new supplies sure has made it even harder to find a spot for everything.

Last week we seen great progress in James, unfortunately this week we are reminded of the bumpy road that we are travelling down.

On Monday I was off to Toronto for our first follow-up appointment. James' doctor was not suppose to be in, and the doctor who took care of him while in hospital was also not available, so we were suppose to see another new doctor. This appointment was set up when we were discharged and each person who talked to us when we left said not to worry, everyone knew about James and from what I gathered from one conversation it seems they had a meeting at some point to discuss his case and familiarize everyone with him. So although we wouldn't be getting our doctor the doctor was still well aware of everything that was going on.

Our appointment was at 2:30, I finally seen the doctor at 5:15 ... but my wait was worth it because we seen our own doctor. As seems to be the norm with specialist we waited an hour to get in to see the resident. He went over everything and then sent us for blood work and told us that we would actually be seeing our own doctor but she was still on her way in so we'd have to wait a bit. I felt awful about the bloodwork part since I had promised James over and over that there would be no owee's this time. Upon arriving at the clinic he right away recognized the place and semi-paniced. It took a bit to get him to settle down and I had to tell him over and over there would be "no hurt" and that they wouldn't be putting his nose prong on. He finally settled down when we got to the waiting room and he found some trucks to play with.

Nothing major was determined by the appointment, it was mostly for an evaluation. We realize that James will be closely watch and tested as this is all trial. They also have to show proof to the government that the treatment is working in order for us to be able to continue with it. They were suprised to see James off the oxygen and impressed with how well he had been doing.

At the appointment James was doing really well, SATing 95/96%, but the night and day before had not been so good. Saturday night James was SATing low and we had him on oxygen again overnight (we had him off for Thursday and Friday night ... altho Friday did not go as good and we decided against doing it again for a bit) . Sunday morning James heard we were going to church and was so exciting, thinking he was going too. We didn't have the heart to turn him down and since he had been doing good during the days we thought it would be okay. Just before we left for church we checked him again and realized that he was not SATing as great as we'd like. We ended up taking him, but by time we got home we could see the effects of the outing. Sunday night he deSATed while on oxygen. Monday morning he gagged and threw up as I got him ready for his treatment and after his treatment he suddenly had good SATs again ... for the rest of the day.

Whenever we get James ready for his treatment we put his nose plug on first and this causes him to start gagging. We're not sure why this is, whether it's because he's a nose breather and this means he has to transfer to mouth breathing, or if it's because he gets a bit worked up before we start treatment (once started he's fine), or if it's simply a mental thing ... but he does it every time ... and sometimes he throws up, other times just gag for a few seconds. What he throws up is mostly phlegm, often mixed with bile. On Monday morning he threw up the most he had ever done up to that point and so we thought that this was the reason for his better SATs afterwards ... he had cleared out some mucas that was blocking him . Another thing James has started to do since treatment is to cough. Previously he never coughed, even though his lungs are so congested. We usually only hear it when he wakes in the morning and sometimes after nap, but it's a very phelgmy cough and he has thrown up from it.

So back to the appointment ... based on the information provided the doctors as happy and feel that it's possible the treatment is working, but yet realize it is too early to really know. They had actually requested the oxygen company to come out and do an oximetry test before our appointment, but for some reason this did not happen. During this test they would put a probe on James for the night (just like we do each night) and then we would leave his oxygen off and they would measure how he would do. Their machine would save everything and then it's downloaded and evaluated. I have to mark down if he wakes up or if I turned oxygen on when I did it. This test was suppose to be done as a record of how he had improved (0r not improved) since treatment started. Since we have a monitor at home I was able to give them a pretty good idea of how he is doing, especially since we had actually attempted a couple nights without oxgyen. Of course my information is not good enough for records and Health Canada ... so it's helpful, but the test is still needed ... they ended up coming out the next day to do the test, they just leave the machine with us and we hook him up and turn it on, then they pick it up the next day and download the information.

A few things were decided at our appointment. They took James completely off prednisone, he had been in the weaning down stage long enough and was ready to come off. They also said we no longer have to give him Flovent puffers (asthma maintainer puffers) as they are not doing anything for him. We also talked about oxygen overnight and they said to leave him on at nights all the time. This gives his lungs a break overnight and also helps his heart. James' heartrate continue to be high, even when he has good SATs. His rate is high especially during the day, at night it's not too much above "normal" . When a person has cardiac issues they do not grow well, so likely this high heart rate is also contributing to his lack of growth and by helping him at nights we can encourage growth and give him a boost for the daytime. During they day we evaluate and decide what is best. We have already realized how weather also plays a factor and so we have to be careful during hot and humid times ... we are extremely thankful for the central air we have.

They would like to do a CT Scan at our next appointment and are in the process of trying to get that booked for the same day. They are going to attempt to do it without sedation as they have new very fast equipment that only requires you to lay still for a few seconds as each pictures is taken. I am skeptical that we will get him to do this as he panic the second he sees any sort of room with lots of equipment and people, but they said I can hold him down and be with him. It's definitely worth a try if we can avoid another sedation ... especially since we know that these are going to be regular routine for James ... hopefully after a few times he will realize it's not going to hurt and it will go smoother.

So ... the bumpy road ... Tuesday I had to put James back on oxygen for nap time, Wednesday it was for most of the afternoon, Thursday (today) was all day. Wednesday morning he had a fever, but one dose of tylenol brought that back down. He has been throwing up more, each morning he throws up either shortly after waking or just before treatment. It's usually a mixture of phlegm and bile but this afternoon he threw up after nap and it was mostly bile, making us question what's going on. As much as we hate watching him throw up, especially the dry heaves, we had thought it must be a good thing because he's getting all this phlegm out ... but if it's all bile we begin to wonder what's causing him to throw up. On top of this we have seen his heart rate rise even further above normal, back into the 150-160 area (130-140 is normal for James, but considered high). And so we're left wondering ... what's going on now? is it just a bump in the road or are we heading downhill?