Matthew Ian

Today we have been blessed with the birth of our son Matthew. Born by scheduled C-section 2 weeks early, he tipped the scale at 7lbs 9oz, the heaviest of our children. So far he eats well, and sleeps good. He loves to squirm around and is persistant to have his hands free.

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Several people have already inquired if he has LPI like James, or if they will test for this. Indeed they are, via a urine test and some blood work. As always, results will come in time. As I have the priviledge to hold this precious bundle in my arms, I cannot but stand in awe of our mighty creator who has intricately woven this child in his mothers womb, and has entrusted another of His children into our care.

Shift Nursing

A common question we are asked is what will happen with James when the baby is born, so I thought I'd take a few minutes address this question with the newest government coverage we have received, which is shift nursing. We have many government coverages, and maybe someday I'll get around to breaking down all these many programs which are so confusing unless you're involved in it (just ask Rob, he's always confused about who's covering what). For now it suffices to say that the government has been very helpful right from when James first start having difficulties in March 2006. It is only recently that we ran into the reality of what it would be like without coverages when it comes to the SATs monitor that we need and oxygen coverage. I cannot imagine the stress and anxiety if we had to pay for all of James expenses ... reality is we wouldn't be able to do it, and so James would have suffered and likely not have gotten the treatment he needed.

But for now we're talking about shift nursing. Previously I was training a friend to take James when the baby was born, but once James was hospitalized and then began to require oxygen and so many other changes in his medical situation we realized that it would not be so easy anymore and we definitely need a more qualified person who was able to evaluate and make decisions when necessary.

Upon leaving Sick Kids I enquired about nursing coverage. I had previously been told that we should qualify for this coverage, but we never really felt that it was necessary. In most aspects James was just a normal kid, we just did our best to work around his feeding schedule. Anyone who knows me knows how particular I am too, so it's not easy for me to give over the care of my child to someone else. But James is no longer so "normal" and if I thought we had to pack enough to go away before ... that sure seems easy in comparison to now. Unfortunately for James this just means that I rather not take him out and the poor child has been very house bound. With time we'll adjust and have to get used to all that comes with leaving the home, but with the business of the last couple weeks that has had to wait. At the same time, I didn't like the idea of different strangers in my home all the time, so I just let the idea be since we were managing fine without it.

Besides realizing the extra burden James now puts on us, one of the reasons I now decided to go ahead with this coverage was because I know someone who works as a shift nurse who was willing to help us out. She would have done it as a volunteer, but it only made sense for her to be paid for what she was doing if there was a way too ... especially because then I wouldn't feel so bad always asking for help. Normally with shift nursing you call in and say when you need a nurse and they send someone out for that time, usually you get a few different nurses assigned to you, so you don't always know who you will get. In this case I will be working more directly with our friend so that I can make sure that I can get her to do it each time ... hopefully we'll be able to coordinate our schedules so I won't need anyone else to come in.

We have been battling with the Case Manager for more reasonable hours, but finally seem to be getting somewhere. Originally they were only going to give a few hours on a specific day ... this would actually be rather useless since I never know what day I would need them ... and I could easily eat up those few hours just for an OB appointment. They have finally loosened the reigns a little and instead are giving us 25 hours per week. I'm told this is still not a reasonable amount given James' medical demands, but this is a start ... and to be honest I don't know what I'll do with the hours. For me it will be adjusting to the idea of allowing someone else to care for James. But reality is that when I need help it's usually for the other kids since it's James that requires all the appointments, etc. But with a new baby on the way ... I'm sure I'll quickly find ways to use up this extra help. This coverage will allow me to get out and do what needs to be done or just spend some time with the girls or my hubby. I still have a hard time with this ... since James is so much a normal child, just a child that's tied down to various tubes and therefore not so mobile. We do not want to exclude him and already feel bad enough whenever we go away and he stands there with longing eyes wanting to go with. There is not a day that goes by that he doesn't ask to go in the van, he's happy to go anywhere, as long as it's away from here.

Another benefit to having a friend do this is that she is more willing to help with the other kids. Normally you receive coverage for the child needing care and that's it, the nurse does not help with anything else. (Therefore I would have to find another sitter for the girls each time). Although I will not always have her watching the other kids, she has offered and is willing to take them, even saying that having them around helps as they can let her know how things are done and it gives James someone to play with, keeping things a bit more normal, etc.

So ... yes, we have help for when the baby is born ... and we are extremely thankful for this help and how it has turned out. So often I wonder how I'm ever going to manage ... and although I still wonder how I'll get through the weeks after the baby is born, I know that the help is out there, I just have to learn how to use it. I continue to pray for one of those ideal babies who just eats and sleeps :) But after two who were the extreme opposite, I'm not counting on it!! We carry on ... one day at a time! And maybe some day, some year I'll be able to actually get some sleep again :)

The Lord indeed continues to bless us and sustain us, carrying us through during the good and the not-so-good times!!

Still Bumping Along

James is still bumping up and down, but definitely requiring more oxygen then he did a week ago. The doctors would be fine with us just leaving him on oxygen, but we really like to give the poor guy a break occasionally and let him try live with a bit of freedom, so we do spend time monitoring him each day to see if and when we can allow him some time off the oxygen. Usually he gets a period before lunch, but for some reason hasn't been doing very good after naptime and into the evening. We automatically put him on the oxygen for nap time now, figuring any time we can give it to him while it's not tying him down is helpful. He still gets upset and a little worked up when we have to put the nose prongs back on, but is getting a little less wild with his arms and more accepting to the fact that the prongs come on and off during the day. We've also taught him that the machine beeping means the nose prongs go back on ... so when he hears the beeps he is somewhat prepared. He will tell the machine "stop beep" in hopes that will save him from having the prongs put back on. We are also finding that when he requires oxygen he requires more then he used to.

James continues to vomit each day, usually first thing in the morning. I have to be on the ball when he wakes because I'm usually running to catch it before we have a diaster in his bed and more work to do. Thankfully he gives a certain cough and cry before he actually starts heaving. Last night was the first time he actually did this in the middle of the night. We're not sure what to make of this vomitting as lately it's been mostly bile and very little phlegm ... yet when he starts it sounds like he's coughing and he seems to be heaving from the chest. So it could be he just can't get out what's there but the heaving is causing his stomach to throw out what's in it (which is nothing since he's j-tube fed and doesn't eat a thing by mouth). We don't really think it's his j-tube as mostly the feeds seem to be going okay, altho we did have trouble when we went to 17 hours off and had to put him back to 18 hours off per day. Yet at the same time he does every now and then each day and sometimes at nights point to his tummy and say "tummy owee" ... often pointing to the lower right side, which is where the tube goes into the intestines. But a minute after he says "tummy owee" he's off playing like nothings wrong. Wouldn't be any fun if we weren't left guessing about something ... nothing is ever straight forward!! :) On the good side, the last couple days he has not gagged when starting his treatments ...which means he hasn't thrown up then either ... possibly this is related to the fact that he's already thrown up when he woke up.

And since we've been speaking about bumpy roads ... our car will no longer be travelling down any of those. Did I say something about it not lasting much longer?? I really had hoped a little longer then a week ... but, alas, not so. Yup, when it rains it pours (if only it actually would, how we need that rain)!! They say bad things come in three ... hmmm. As of yesterday it became apparent we could no longer drive the car (harmonic balancer and a water pump) .... and so we no longer have a car ... but are in the process of working towards having two vans. Here's where buying vehicles all with the same drive line comes in rather handy, and so Rob went straight to work putting the tranny from the Buick into the old van. This was a thought we had when the van "died", but realized it wouldn't do us any good since we'd be without any vehicles while he was working on it (which is limited time considering the hours he works),and in the end we'd still only have one vehicle. Given our family circumstance one vehicle just doesn't cut it and with the van coming due for a fair amount of other work it also didn't make sense to repair it. But now, with no other choice he's doing the switch over and this should give us a 2nd vehicle until the end of the summer when Rob goes back to school (and then uses the bus). Timing of course is rather bad ... with a baby due ... well ... any day now ... and who knows how long it will take before he gets done. Since I cannot be without a vehicle, that leaves him without a vehicle ... back to the trusty bike, except that's not a wise choice for the hours he starts work, but for the time being it will have to do. I'm not sure I see a whole lot more of Rob now then when James was in the hospital ... ever since we gotten home he's either working or buried outside under a vehicle.

Meal Times
James idea of eating ... or shovelling food. Most of the time he doesn't even allow us to put a plate on his tray, occasionally it reaches his tray ... and very seldom he'll actually take a bite ... one bite is usually the limit. Instead he likes to play with his toys during meal time ... especially his excavator and dump truck (altho usually it's a bigger dump truck). He especially likes breakfast time when he can scoop and dump Captain Crunch or Rice Krispies back and forth, otherwise we just give him some blocks to play with. But ... food is definitely not something he wants.

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?

Our Family

Marietta's 7th Birthday

Wow, our big girl is turned 7 yesterday ... hard to believe it's been that many years already. As is our tradition Marietta got to pick what she would like to do for the day ... they can choose a birthday party or a (cheap) outting (swimming, skating, dining out, etc.). After talking for months about who she was going to have over to her birthday party we were surprise when this is not what she picked but instead asked to go out to the country for the day. Originally this past week we were suppose to be housesitting for friends ... which was also going to be our holidays for the year as I we had no idea how things would be going with the pregnancy or James ... and regardless I didn't think much of the idea of camping at this stage in my pregnancy. This country setting included a pool and a mini horse, lots of room to roam and ride bikes, and a nice fire pit area for the evenings ... plus all the conveniences of home. We all know how the past months turned out ... needless to say I had no desire for a "holiday" this past week and was much happier just to be home ...even tho it meant lots of work.
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So Marietta asked if we could still go for one day ... her request was made last Saturday when she arrived home during the swealtering heat ... who would have guess it would be so cool and windy by the end of the week ... wonderful for James, not so wonderful for swimming. Saturday morning when we realized it was going to be windy, cool and rain we asked Marietta if she would like to do something else as there would definitely be no swimming and we'd probably end up stuck inside a good part of the day. We told her that we would take them to the fair set up at Zellers instead as it didn't look like it would rain until the afternoon ... but she still wanted to go out to the country, so away we went. I must say it was an enjoyable day, for altho we've all been home this past week we've been so busy getting things in order with house and vehicles that we haven't taken time to relax and enjoy each others company. Marietta was smart to make us leave our home surroundings that tempt us to work and have us just sit down for a nice quiet day. This was the first time in almost 2 months that James has been anywhere besides home and the hospital ... boy could we tell ... he was so excited to be allowed to come with and go for a ride in the car with everyone else, the light in his eyes and the fun he had yesterday (we could also tell by his SATs at the end of the day).
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Present and cake time
I believe the favourite of the day was the Easy Bake oven and recipes that she received.













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Outdoor and Play time before the rain arrived.
Climbing and sliding, the real (mini) horse versus the play horse. James was rather reserved around the real horse and would only look from a distance, but oh how he loved the play horse. Since it rained for the afternoon Rob set the tent up in the basement for the kids to play in












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Pin (tape) the Tail on the Donkey
James thought this was great fun and quickly caught onto the idea ... he just needed to be a bit taller to do better

Progressing Well

As the week progressed so did James' health ... or visibly so it seems. We realize that James does not display the severity of his disorder and so we have no idea what is going on inside, but he definitely seems to be doing well.

During the day he no longer requires oxygen and has been able to maintain some pretty steady levels in the 93-95% area. We are extremely thankful for the cooler weather which has allowed him to spend time outside. During the hot days we definitely seen how the extra activity combined with the humidty was not good for him ... even when we only let him outside during the evening when it was a bit cooler.

Last night was the first time we did not turn his oxygen on for the night. Until then we had been turning it on a low level when we went to bed, but we figured we'd have to give it a try a few times so we had a good idea how he was doing before our next doctors visit on Monday. We stopped putting his prongs on at nap-time but will continue to put them on a bedtime for a while as it's no fun waking him during the night to battle them on. James has adjusted well to many different things, but still continues to battle whenever we put them on. Thankfully as soon as they are on he's fine ... it's be awful if we had to tape them to his face every night.

We thank the Lord for the progress we have seen and continue to pray that this progress is due to his treatment and not just another up in the many ups and downs we've gone through prior to treatment.

As for tube feedings ... I decided to go ahead and bump James up to 18 hours on feeds, 6 hours off feeds and see if it made any difference from when he was at 20 hours on. James' stools is how we gage things, but James' stools have never been steady (and have had lots of trouble since January) so it's often near impossible to really tell what's setting them off or making them better ... this is due to his colitis. So he now has 6 hours free during the day and what a difference this has made. This allows us a bit more flexibility and gives him time off in the morning ... previously I saved most of it for the late afternoon and evening since we only let him outside in the evening. So far we haven't seen any significant difference in his stools and so this seems to be working just the same as 20 hours.

On the homefront we have slowly begun to find some sort of routine ... as much routine as you get during the summer months. The house has slowly begun to take shape again ... just gotta finish finding room for the baby stuff. Thankfully I only had one day of appointments this week (myself - OB and Pre-Op - everything is good!!) so my time was not taken up running all over ... especially good since I remain without a vehicle. It seems that the tranny Rob spent time putting in had been sitting a little too long and is not going to work afterall. After attempting one more thing (which took several nights of work) it was confirmed the tranny was definitely a no-go ... and so after some hum-hawing we decided it was time to find a "new" vehicle as it was not worth spending the money to put another tranny into this one. Yesterday Rob found another ugly Pontiac Transport (the only kind of van he'll buy due to the engine in it ... as well now we'll have a parts vehicle for the new one) and hopefully by Monday or Tuesday I will once again have a vehicle ... yah!!! Sometimes you get the feeling when it rains is pours and so it seems with our vehicles. We've been so thankful for our beater car that Rob uses during the summer months when he works ... but it's on it's last wheel too. Rob had said he'd be thankful if it made it through this summer, so it's no surprise when we suddenly seem to be having more trouble with it too. Thankfully these problems came after we were out of the hospital ... but with so many appointments all the time I can't really be without a vehicle for long ... and don't have much faith in driving the beater off to Toronto. And so it seems whenever Rob is home he's buried under a vehicle ... hopefully we're done with that before baby arrives.

Two Days No Oxygen

James seems to be making good progress in the oxygen area. Both yesterday and today we were able to take him off the oxygen during the day. The doctors require that he stay above 92% and he has been able to maintain good levels of 93-95%.

James is so happy to have the prongs off, especially since his skin was getting a little raw under his nose from always having something on it. We still make him put the prongs back on for nap and bedtime, that way if oxygen is needed it's just a matter of turning it on, instead of waking him ... as it is a bit of a battle to put them on each time, but once on he doesn't touch them. If he continues to do good at naptime then we'll leave it off for nap as well. So far we have not let him go a whole night without oxygen. We turn the oxygen on when we go to bed, but last night we lowered the level again so that he's only getting about 60 ml (when we came home we were at 250ml) and then Rob also turned the oxygen off at 5:30am when he left for work and he did fine. We'll keep weaning him down until we're confident he's okay. Our nights at Mac showed that some nights he was okay, some not ... so it will be a while before we let him go to bed without the prongs.

We're excited to see him off the oxygen but know we've gone through lots of ups and downs before, so we realize this could be short term. At this point we have no idea whether it's the actual medication that is helping, especially since we have no idea what created his last set-back. For now we keep on with the treatment and enjoy it when he has good days.

At this time he gets 4 hours off of his continous tube feeds each day ... so he's an extremely happy boy went let completely free. He does ask to go outside, but with this heat outside is not an option. We try to keep some of his completely tube free times for the evening so he can go out when it's not so hot. We did see again tonight when we let him outside that his SATs dropped into the 80's, but it's still hard to say if this is from extra activity or the weather ... likely a combination. I made him sit for a bit with the monitor while outside and after a few minutes his SATs came back up, so it seems activity plays a factor ... and he sure runs and is more active when outside where he has more room and new things to do ... altho that's not to say that he's exactly calm in the house either when let free.

Life at Home

After spending 44 days in hospital James, as well as the rest of of the family, is adjusting to be home again. Wow, what a mountain of stuff can pile up in a 6 weeks time of running in and out and only spending hours at a time at home. I said I would write when I had time, so I better make time, because by the looks of it I'll be busy for a bit.

Wednesday and Thursday were busy mind boggling days. Lots of people, lots of information to digest!! My only comfort was remembering how overwhelmed I remember feeling when James first had to be tube fed and now it's 2nd nature ... so with time we'll get this all figured out too and it will feel like 2nd nature as well. Although I must say the transition to tube feeding was much slower then this as we went through an actual "training time" where we just went home for overnight LOA's to try it out and then came back during the day to tackle any issues. But regardless we're home now and trying to set some sort of routine again ... and really the treatment is not hard to do.

It was 7pm by time I got out of Toronto on Wednesday. Our equipment was brought right to the hospital in the morning so that we didn't have to be home by a certain time to get set up, which was good because we would have had to stay another night since by time everything was organized the compnay was closed for the day. Pharmacy went over how to do the treatment and use the needles, etc. We discussed monitors and reviewed our options ... something we'll have to look further into, but can do on our own as we 've been provide with the direct contact, making it much easier. They are able to get monitors at a better price, but we have to weigh out some of the different options ... and the fact that their monitor is over twice the size and not near as portable ... a rather important factor when you're dragging oxygen, monitor and a feeding pump wherever you go. We were also set up with Visiting Nursing Care to come to the home once a week and see how things are going. This is different then Shift Nursing that actually stays and cares for your child for a certain number of hours. Visiting Nurse come to change dressing, help with specific tasks (e.g. bathing), etc. .... and there's not much to check with James so I'm not sure this is needed, but we'll keep it for the time being while we get things figured out.

I arrived home Wednesday to pretty much unload everything and drop it whereever a space could be found. Rob came home shortly after me. We found James' medicine stuff and did his treatment and then off to bed .... zzzz. Thursday was another busy day. I was out the door early for an ultrasound and OB appointment ... which took all morning b/c they were overscheduled. Everything went well with the appointment ... baby scored 8/8 on the ultrasound, so everything is fine that way, even tho am measuring small with their regular tape measuring technique (which after past experience I don't put much faith in that system). Blood pressure was higher and had jumped a significant amount. I was aware of this since I monitor it at home, as well I had asked the nurses to check it a few times for me when in hospital. Previously they had said that this level I should be closer monitored, but usually blood pressure does rise near the end, so they have flagged to pay closer attention but for now we're okay ... phew.

During my morning at Mac I had to wait inbetween ultrasound and appointment, but at least they are nice enough to provide a pager so you can go off and do other things while waiting. (I don't imagine they do it for just anyone who wants to go wandering while waiting, but since James was in hospital before I used to get one then, and this time I had people I wanted to talk to so I asked for one again). So I got a chance to talk to a few people who had been taking care of James, as well as catch up with some of the nurses. Everyone was wondering what had happened as on their end all they really heard was that James was unable to return back to Mac.

While I was off at Mac Rob was having lots of fun at home getting James equipment set up. Nursing came and had all the paper work done to get him going in their system. The Oxygen Company also came and had to go through a pile of paper work, rules, regulations, coverages, etc. I arrived home just as the actual oxygen delivery guy came and then went over different options as well ... but having missed all that went on during the morning I was rather lost. So after a late lunch I was too tired to think straight and went off for a good nap. Upon waking Rob and I had to sit down and go over all that he had dealt with during the morning ... and before we knew it the day was shot and we had nothing to show for it.

At night I had to get out and do some shopping while I could since it's even harder now to take James out and I also had birthday shopping for Marietta to do. I only got a few km down the road and found the van acting up on me ... a quick call to my dear mechanic (my hubby for those of you who don't know he's a mechanic) told me to drive home slowly and a test drive confirmed what he thought ... transmission done, or at least not worth rebuilding ... yet another project to be done. Boy we're glad for the second vehicle we have on the road during the summer months. Thankfully we have another transmission from a parts vehicle Rob aquired some time ago ... so Rob's been buried under the van all weekend, trying to get it done yet tonight, yes it's after 11pm now.

Friday was spent trying to find the floor back in our house ... organize, organize. Most of the time was spent rearranging James room, figuring out where to set up all his medical supplies, etc. And I wondered before where we were going to put baby and all it's stuff ... James just ate up more of our limited space ... the oxygen tanks alone take up enough space. So now that his room is arranged, next week I can rearrange it again as I try to fit babies clothing, bedding, etc into his room. For the time being baby is going to be spread, sleeping in our room, "supplies" in James' room ... we'll figure out a more permanant idea in a couple months when he/she outgrows the moses basket. By today I finally started to feel like I was making some progress ... upstairs anyways.

The girls arrive home around supper time tonight. It's a nice feeling to know that they're actually home to stay this time and we can start trying to set some sort of routine again ... for a few weeks anyways, before baby throws everything off again :) Routine will also be good to help us get James back on track ... a boy who's used to staying up until 10:30pm and in turn has since we got home napped 3 hours each day. He's never required a lot of sleep and always like to stay up late, but he's gonna have to learn to go to bed earlier again. Having the girls home will be more difficult for James also as he'll begin to realize how tied down he is. He's been playing wonderfully since we got home ... quite content in the dining room with his toys, sometimes joins me where I'm working, but never asking to go elsewhere. With the girls up and downstairs, inside and outside, I believe I'll find myself dragging his tank around a lot more.

James is doing well with his treatments. Tonight he even tried to hold the mouth piece on his own. As you can see it's a little lopsided and I ended up helping him again ... but it's the fact that he's willing to try and so accepting that truly amazes us. You can also see that we found a nose plug that works. It's adjustable and not near as tight as some of the other swimming nose plugs we'd see, it doesn really pinch is nose completely, but just blocks off enough to he breaths through his mouth. He fought it the first time I tried it, but since then has been find with the idea. It fell off while he was doing his treatment tonight and he right away got worked up that it had fallen and needed to be put back on. Usually he still gets worked up for a minute or so right before treatment, say "no hurt", but then completely cooperates and doesn't complain once we start. Tonight he didn't get worked up at all, just sat their and waited for me to get it started. He is such a cooperative child!!

The J-tube is still in, although we're not sure how well it's working at this point. We're trying to get him down to only being connected 20 hours per day but are finding some inconsistency in his stools so we're not sure how well he's tolerating it. One day he only has 2 bowel movements (3-4 is normal for James), the next day we're cleaning him constantly. We'll keep working at it for a bit before we make any further decisions, but we know he can tolerate 16-18 hours on g-tube feeds so we won't be too upset to go back to g-tube ... seeing as the doctors are confident that the J is not needed. In the back of our minds there's always the question ... and what if they're wrong? So for now we keep working at it.

Oxygen wise we've seen a bit of progress too. Today I had James off the oxygen for 2 hours after his treatment and as long as he was playing quietly (sitting and playing) and not active he was okay. But then he asked to go outside ... so much for mellow ... and we don't know how much the humidty is a factor either ... but regardless he was back on the oxygen after about 15 minutes. But right now we're just happy for the 2 hours. We actually leave the nose prongs on and just have the oxygen turned off, that way it's less of a battle to get him started up again. To go outside today I took the prongs off ... so he was upset when he had to go back on, but after a few seconds was off playing again ... once again, so accepting and cooperative ... it just melts my heart seeing the disappointment and fighting him when we have to put them back on him. If we see consistently that he can do it for a couple hours with more activity then we'll let him run more freely, but for now keeping him on the prongs keeps him from getting too active. Each night I also put him to bed with the prongs on but do not turn the oxygen on after his treatment. Right now I'm too lazy to see how long he lasts, so I turn the oxgyen back on when I go to bed so I don't to get up another time during the night (I have to get up to change his feed bag once during the night ... only once, I'm not complaining). Once I feel more rested (if ever) then I'll test him a bit further during the night.

So ... I think that's the rundown from here.

Home

We're home :)

More to follow when time allows!!

Good night! zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

From One Holiday to the Next

Well, it’s been six weeks. James first was admitted on Victoria Day … and he’s still admitted after Canada Day. Hard to believe. I’m still stuck in May, even though I know school is finished and the girls are off camping … it just doesn’t seem like July to me. But reality says I better catch up because babies coming whether I think it’s July or not!! :)

I did not think I’d be going home all that often, but then we realized it was a long weekend, and so I took the opportunity to go home a couple times over the weekend and get some relief from my “hotel” room and a chance to get a few things done at home. Previously the girls were home on the weekend, so besides doing the basics of laundry and organizing I did not have much time for anything else … it was nice to be able to tackle a few projects without any interruptions. This weekend the girls went off camping with Grandpa and Grandma, as well as some of the rest of my family. They were excited to find out there were more people they know camping there as well. I miss the girls, but I’m glad that they’ve had a chance to get out and have a nice time since it’s once again unlikely we’ll be having much of any sort of holidays this summer. The girls on the other hand are having so much fun gallivanting from one place to the next that they don’t seem all too bothered, especially Rebecca. Marietta has her ups and downs, she is more in tune with what is going on and more emotional. Rebecca on the other hand doesn’t seem to fizzled by what’s going on and just asks where she’s going next.

James has perked up back to his normal self … chipper and playing, along with an attitude developed from having one on one for so many weeks. He’s gotten used to the routine here and is more relaxed, sleeping better and cooperative with the nurses and doctors. He’s doing good on his treatment. He knows approximately when it’s treatment time and gets worked up the minute the nurse walks in the room at that time. He cries and is upset for the first minute or so of treatment and then settles down. We are happy that he is cooperative with the mouth piece. Treatment could also be done with a mask, but just the sight of a mask makes him go somewhat beserk. When using a mask they actually inhale only about 5% of the GM-CSF, this is because our nose has filters and actually filters out a lot of the material. When using a mouth piece he is getting closer to 20% of the treatment, so this is a much more effective way to treat him. The problem is that he is breathing with his nose while the mouth piece is in, therefore not getting the treatment as he should. The last couple times we have been plugging his nose while we do it … not exactly making it more pleasant, but he was more calm with the idea this morning. Now we just have to find a gentle way to plug his nose each time so we don’t have to hold it every time. We figure it’d be more effective to fight with him to accept a nose plug then fighting to accept a mask, which isn’t as effective. The doctors are very happy and very impressed that he is taking the mouthpiece.

Yesterday Rob stayed with James for the day. James had been on about 100-150ml of oxygen. After giving his morning treatment he forgot to turn the oxygen back on, but James levels stayed good and he didn’t notice until he went to take James for a bath. After attempting a bath James was playing on our bed and suddenly Rob realize his face and hands were turning purple and blue. A quick check showed his oxygen levels had dropped in the 80’s again and made us realize how much that little bit of oxygen helps him. We’ve never actually seen him turn colour before.

Today’s news is that they are working on discharge … yup we may just get home this week!! Tomorrow they will do an x-ray to see if any changes have occurred. They do not expect the GM-CSF to have actually done any changes yet, but wonder if he had a virus or was irritated from the procedure he had last week and whether that will change the look of his x-ray. At this point they figure they aren’t doing anything here that we can’t do at home. This means James will likely be on oxygen at home since he still requires it around the clock… a new thing for him to adjust to … and us.

They have set James oxygen limit at 92%. This means that he needs to be 92% or above and if he’s not he needs oxygen. At this point he is not able to hold that on his own, so they are working to get us a low flow oxygen meter as most home oxygen starts at 500ml and he doesn’t need this much. Hopefully it’s just a matter of a few more days and he’ll be able to tolerate being off oxygen …although so far he hasn’t indicated that this is the case. Again today I took him off for a bit to have a bath, but by time bath was over he was in the 80’s again … all he’s getting is a whiff of oxygen thru the nose prongs, but he needs it.

The initial plan is that we come back in the next 2-4 weeks (whenever they can get us an appointment) and have another x-ray done. At that appointment they will make further plans. Since this is all trial and experimental this means that they can’t really speculate on what we will be doing in the future … we tackle each bump as it comes. Today’s speculation is that after that they’ll do another CT Scan to get a clear picture and then review whether a Whole Lung Lavage (WLL) will still be necessary. We cross that bridge when we get there.

How long it will take for discharge will depend on how quickly they can get everything organized … one thing is for sure … they can do it quicker then Mac. Tonight he has to be retested for oxygen coverage since we’re in a new hospital and also the last one was already two weeks ago, which means many things could have (and have) changed since then … they need something closer to discharge date. If we have trouble getting the full strip she did not seem concerned and said they would just write a letter and get the coverage that way. He will also be getting nebulizer equipment (a machine that turns liquid medicine into fine droplets that are inhaled through a mask/mouthpiece) to run his treatments … this is all government funded through the same programs we are already registered with for James’ tube feeding equipment. With regards to SATs monitors … they are advising us to try our best to hang onto the loaner one we currently have …unfortunately we probably won’t be able to hang onto it long enough as we were only suppose to get it for two weeks, and two weeks is already up. They do not have one available for loan, but they are hoping that by the end of this summer a government program will be in place which will fund these as well. If we run into trouble we’ll still have to purchase, but it seems they have better vendor connections and can get the machine at the same “lower price” we were originally quoted but are having so much trouble actually getting at Mac due to sales person changes. The other thing to be organized is to actually have enough medicine for us to go home on before our full supply comes in. So we’ll see how long it takes to get everything together.

And that brings us to the end of another long update.