2 Years .... but who's counting??

Just me I suppose!! :)

Hard to believe that two years ago this day we found ourselves making the trek from Chatham to here - from the big, huge, old farmhouse, to our little, small, city house. I can remember it just like yesterday - two week old colicky baby, no sleep, house a disaster for what seemed like forever ... what were we thinking?? But hey, we survived. Two years already ... but then again maybe I should say two years finally!! Just depends on how you look at it I suppose.

To all those out Chatham way... we still miss you!! Not just the big house, with the huge yard in the open pig smelling country, the people too!! :) Those three years went by mighty quickly, as I hope someday I'll be able to say about the 7 1/2 to 8 years here.

Our purpose of coming here was for Rob to study. The last place we wanted to live was right smack in the middle of the city, but here we are. With almost no time to be picky about where we were going to live we chose a place to live and afterwards began to realize how nicely situated we were ... all the necessary shopping conveniences pretty much in our back yard (If we had the yard that we had on the farm, No-Frills would certainly be in our back yard) :) , church only a few minutes away, and then the school moving to pretty much right beside us. Yup, for little choice, we sure found a good place.

It's amazing how we are always able to see the Lord's providence in our lives. Nothing happens without a purpose. The Lord knew that we were going to need to live in the city, near the hospital and doctors. Whenever I get exhausted from the many appointments I remember those long hours spent driving to and from London for pre-natal appointments and wonder how I would ever have survived doing that with James as often as he has appointments and hospitalization. We have adjusted to the city, and certainly see the advantages of living here at this time in our lives. Not to say we don't dream still ... I hear there's an nice, big house with a white picket fence going to be up for rent out in the country :) ... but I won 't go past dreaming, I know my limits ... I'll just look longingly when we drive past it!! :)

Although the extra stress is never welcomed in anyones life, and certainly not for Rob when he is trying to focus on his studies, we can also see the advantages of being a student at the school of the teaching hospital where James ends up with each hospitalization. It comes in handy when he has a break between classes and I have an appointment with James. Rebecca always finds it a treat to go visit daddy at school (she's even managed to sit quietly through a Greek class), and it makes it easier then having to find a babysitter yet again. It also comes in handy that Rob is able to pop in and out to visit us during hospitalizations. The days are long and drag on and it's nice to have someone to talk to or a chance to get out on my own for a few minutes, as well it helps Rob to be more involved in the treatments that are going on with James. I like that much better then the summer when he was working and I didn't know what time I'd see him again (or get my food supplies replenished).

But the last two years haven't been just about doctors and hospitals ... Rob is now proud to say that he is half way through university. He hasn't always been able to focus on his studies as much as he would wish and there never seem to be enough hours in a day for studying, but regardless he's doing relatively well ... for someone who previously wanted nothing to do with going to university. As we expected, the girls quickly adjusted to the new way of life; considering their age when we moved, we didn't think it would be too much of an issue. They enjoy the time we try to take during the spring and summer to discover nature within the city ... visiting parks and waterfalls. They especially love the waterfalls, we try to visit a new one each time as there are so many around here, but we unwittingly made the mistake of visiting the best one first and they always ask to go back there. We were especially impressed this fall when we went back to Chatham for a visit and Rebecca pointed out to us that the beans were ready and needed to be combined ... keep in mind, she was only two when we left the farm. She was also able to pick out the farm when we drove past it ... all those home videos makes a kids memory extra good. When we moved to the city the kids were thrilled to discover that there was such a thing as pools indoors and we enjoyed a years swimming pass which gave them a boost for when they started swimming lessons. Well the last two years have been full and I could be here forever if I kept going ... so I'll stop.

Here's a picture of James playing with his favourite birthday present. We didn't bring it home until Christmas Day as it didn't fit in the van after Santa (the same day we celebrated his birthday at Grandma and Grandpa's). He's been playing with it ever since we got it set up. I knew he would love it since he also loves to play with the one at the hospital when he's allowed out to the playroom.


The girls wanted to help with the cleaning ... they did a pretty good job.













On the note of James. Today he did relatively well. He woke with a fever, we dosed him up with tylenol and ibuprophen and he did well until the evening when his temperature slow rose back in the 38's ... looks like we're not through this yet.

May the Lord bless you and guide you in the new year.

I will end off the year 2006 with:
Praise the Lord, O my soul, all my inmost being, praise his holy name. Praise the LORD, O My soul, and forget not all his benefits - who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satifies your desires with good things so that your youth is renewed like the eagle's ... For as high as the heavens are above the earth, so great is his love for those who fear him;" Psalm 103: 1-5; 11

Uh-Oh ... Temperature is Rising

And we're not talking about the temperature outside. James is on day three of higher temperatures and fevers.

After James came out of hospital I only checked his temperature and breathing sporadically but noticed that is was always in the 37.0-37.5 area, his breathing continued to hover in the 42 to 48 bpm. Both of these are higher then what we consider normal for James. Had James developed a new normal or was he mildly struggling against something?? We were leaning towards the second as we felt it was inevitable he would end up back in hospital and will continue to until they get to the bottom of the real cause for his fevers.

Thursday we seen his temperature slowly rise into the 38 area and his breathing more rapid. Yesterday continued a bit higher with spikes in the 40 area. Today he fluctuates in the 38-39.5. We have also noticed that ever since James came out of hospital he is more clingy then normal, often wanting to be held or hanging onto my leg. He did not seem unwell, but yet was not completely content all the time. Normally when James has high temperatures he continues to function pretty much as if nothing is wrong, only getting down when he hits the 40C area. The last few days he's been unhappy and spent most of his time in our arms, he does not go down to sleep unless we lay beside him, he has trouble getting to sleep and wakes at nights.

Other then the fevers we have not seen any obvious signs that he has any sort of sickness. Yesterday he had a runny nose for a bit, but maybe it was just from all his crying because we haven't seen it since. Today he coughed to clear his lungs when he woke in the morning and after nap, but other then that no sign of a cold. Time will tell ... in the meantime, we're hoping to make it through the long weekend.

Other then that, we took a break from our cleaning yesterday afternoon to spend some time with friends. Rob took the girls and met them for swimming and then all came over for supper afterwards. The kids played wonderfully together and we had an enjoyable time. We had hoped to be done our cleaning today so that next week we could focus on other things and have a more relaxing time. We did not make it that far but are still chugging away at it. After this I don't think I'll ever be able to convince Rob to help spring clean again ... but hey, it was his idea and I wasn't going to complain. I also now know why I've never spring cleaned the whole house at once before but prefer to just tackle one room a week or so. On a brighter note ... city houses stay much cleaner then country houses and don't need the scrubbing near as often as we found very little fly crap on the walls.

On another note, if I don't get around to writing again, we hope you all have an enjoyable end to the year 2006 and we wish you the Lord's blessing for the New Year.

Holiday Time!?

Well it’s that time of year where we all seem to find ourselves busy with family, friends, and just plain relaxing. I’m not sure the relaxing part has fit in yet, but we’ve been busy. Actually we have relaxed, we had a lovely Christmas Day, beginning with church, and then spending the rest of the day at my parents. It’s great to have the kids home for a couple weeks, a chance to sleep in and sort of throw away the routine.

Last week seen Rob off Sarnia for the week working for his brother-in-law again, this time on the set-up crew (they not only deliver modular office buildings, but also have a crew to install complexes). This is not Rob’s preferred job, but he was happy to help out in any way possible in their circumstance. (While James was in the hospital last time, his Uncle Ike also arrived in hospital, having suffered a stroke). After being gone for a week, we were glad to have Rob back again and we put him straight to work!! :) Have I told you what a wonderful husband I have?? You will soon find out!! :) As much as Rob needs to put in the hours of work, he did not want to work the entire holidays as he also needs to do some extra studying of his languages AND he wanted to help me put my house back in order, something that seems to have gone on the back burner in the last year. And so today we began the task of "spring" cleaning; washing walls, ceilings, cupboards and carpets, as well as organizing, downsizing (once again, seems we’re always doing that) and more organizing. Somehow cleaning the house doesn’t seem to make it any bigger! :) Wishful thinking!! :)

James has been doing very well over the last week. We’re interested to find out if he’s caught up on his weight yet: we’ll have to wait until next week to find the answer to that. He continues to eat relatively well. We even seen one time when he ate as much, maybe even more then the girls did! The last few days we have seen his desire to eat dwindle a bit, as we had expected, but he is still eating. No matter what happens, his interest for ranch salad dressing and ketchup does not seem to diminish ... much to our disappointment. We cannot believe how quickly he has been able to put his weight back on and look healthy and well again. Although James is eating well, we are a bit concerned about that fact that his belly has become very distended and his diaper yeast rashes have flared up pretty bad the last few days. A distended belly has usually been a sign of trouble for James, but so far he seems to being doing quite well, except for the fact that he is a bit more clingy then normal.

James’ endoscopy has been rescheduled for March 7, 2007. ( This also means that at this time we can hope to have his PORT put in that day, unless Surgery is able to get use a sooner date, which we will find out in January.) They had told us they would try to push it up and he is on the cancellation list. Originally we did not want to wait that long because we thought that James’ lack of eating and his habit of only eating one item at a time (e.g. one piece of rice at a time, he refused to eat it by the spoonful) had something to do with inflammation in his esophagus. With his recent excellent eating habits we do not feel this is the case anymore, but it sure leaves us perplexed as to why he suddenly decided to eat. The easiest theory remains that he was hungry and was trying to catch up on what he had lost. The past few days are beginning to support this theory.
We have been enjoying staying home the last week, although it has left James a bit confused. Last week he continuously would bring me his coat and the travel case for his pump, indicating he thought we needed to go away. To his satisfaction, we’ve been gone plenty the last few days, and he didn’t ask to go away today, although having his daddy home is a nice treat and he found it quite entertaining to watch us today. Not to worry, January will bring more appointments again to keep us busy.

All that being said, the deal was to work hard during the day, study at night. For me that means getting caught up on the paperwork ... I still have a few more months to go before I can say I’m done. So I better hop to it!! :) I keep telling the girls: "work hard this week, relax next week", gotta keep at it so I don’t break my promise.

Catching Up

Well James has been doing a good job on catching up with his lost weight. Today we had a Dietician and OT (Occupational Therapist) visit and James weighed in at 10.06kg (22lbs 30z), gaining 14oz in the past week. We were happy with this progress, we could really see that he was getting back up there as his face was filling out again. we were a bit overdue for a height check, so it was no surprise that he added some on height, now being 84.5cm (33 inches), last height we had was the end of October at 81.8cm.

James continues to have excellent eating habits, even making it more challenging at times because he really wants what we have, especially the meat, and cries up a storm when told no. I'm going to have to work harder to make imitation meals instead of just feeding him pre-made frozen food. He still goes to the cupboard throughout the day asking for food. I think he ate himself sick of Rice Krispies because he hasn't asked for them anymore, instead he'll eat Captain Crunch (which is actually better for him), but not near as much as the Rice Krispies since he has to actually chew those. His preference for meals continues to be towards his imitation rice. Each meal must has a side of salad dressing or ketchup. He has always like to eat these, just plain, like soup, but lately he's been eating so much that it's rather sickening. He also loves to eat his imitation cheese slices and pureed strawberries.

We are still of the assumption that he is just catching up and in the next week or so these eating habits will disappear. James currently gets about 1100ml of formula per day by g-tube, but the goal for him is 1300ml. He has been gaining fine on the 1100ml so there is not a huge push to increase the feeds, we are suppose to work slowly at it. The dietcian has suggested that we do NOT try to increase the volume of his feeds anymore and see what happens. It is also possible that his daily calorie intake has increased (it has been over 5 months since his original intake goal was set) and he may continue to desire to eat if we don't give him the full amount by g-tube. We'll see what the next couple weeks bring.

At 2 years old James finally outgrew the playpen. We've been struggling to keep him in it the last couple weeks but I finally gave up and packed it away yesterday. Now we start the new challenge of figuring out how to keep him occupied during feeding times. I replaced the playpen with a toybox, gated off the doorways and added an 4ft extension to James feed tube, now he is able to get around the majority of the dining room and play in there while his feed finishes. Worked good today.

Santa has come and gone for another year. We had a nice time on Saturday at my parents. James also received a few more birthday presents ... so he has lots to keep him entertained when I lock him in the dining room.



Rebecca models her new wig - to be added to the dress-up collection

Marietta and cousin Taryn

Hanging out, watching Dad's (Grandpa's) prize gift ... The Three Stooges

Happy Birthday - James is 2!!

Wow, what a year!! I was looking at James' birthday pictures from last year a few days ago and thought to myself "I had no idea what the year would bring." But I suppose we can look at most years and think that in some way shape or form ... so we'll see what I think next year when I look back at this years pictures.

We had a quiet day, there's been enough excitement around here lately so we just had a family day. The highlight of the day was lunch. We picked Marietta up from school and went out for lunch. Since we seldom eat out this is always a big treat for the kids, made even more special by the fact that Marietta got off of school for a bit. It's kinda ironic that we went out for lunch to celebrate James' birthday but yet he couldn't eat there. James will grow up learning that resturants are not really the place for him, except maybe the salad bar. Usually it's no big deal since he eats so little we just give him a bit of our stuff, but with his recent eating habits we decided we best take something along for him and he was happy with that.

Grandpa and Grandma W were in the area doing some visits and stopped in for a quick visit at tea time, other then that it was quiet. I attempted to make a Leon's delivery truck for James' birthday cake. James received this truck once when we were shopping (or just looking, we didn't even buy anything) at Leon's. This truck continues to be his favourite. I'm not very good at that kind of stuff so no laughing, please!! :) The plan had been to make the strips and decoration out of shoestring black licorice, but just our luck, Rob tooted all over and couldn't find any. So I had to settle for some chocolate icing. Regardless of what it looked like, it tasted good!! :)

Grandpa and Grandma D couldn't make it today (or so we told the kids) so we're going there tomorrow. The truth is Santa dropped off a load of presents there and that's the real reason we're going, they just don't know it yet. It's so cute at this age when they still believe in Santa.

Jotting down some thoughts

It was funky hair day

at school today

I think this one was the

favourite toy of the day

Making Progress

James has been doing excellent at home. When we brought him home on Monday he looked pale and it was obvious he had lost lots of weight, his face had thinned and his eyes looked sunken in. He looks much better now, home is excellent medicine!! After some debate on Tuesday, we decided to put him back on his regular feeding schedule of 4 large feeds (meals) a day right away, plus 1 small (snack) feed. We started him at a slower rate then normal giving him less volume per feed then normal. Things went well on Tuesday and so Wednesday we slowly bumped him up each feed until at the end of the day he was back to his normal volume and speed. We were happy with how quickly he was able to go back to this schedule without any trouble, as so many times before we've had trouble with very small adjustments to his volume or speed. The quick return to normal was especially good because we were concerned about what would happen to his weight if we had to progress really slowly.

Except for the occasional cough when he lays down and a few slightly raised temperatures, James is back to normal; actually he's better then normal. We're not sure what happened, but he continues to be more interested in food. All day long he wants food. He's obsessed with Rice Krispies right now, which are okay for him in moderation, but he's starting to get to the point where he's past moderation. We are battling to teach him that he can't eat all day or whenever he wants, but there are specific times to eat. We often find him whining by the cupboard of the Rice Krispies, asking for another handful of them. He will not eat any other snacks, only Rice Krispies right now. He is also eating his meals well. We have even seen him go to the dishwasher and get his dirty bowl out of there and pick the leftover crumbs out of it because supper wasn't ready yet and he was hungry. We used to always give him 3 options per meal in order to encourage him. He would get a pasta, rice, and pureed fruit. He would pick a bit here and there but seldom ate a whole lot. We now only give him one item of pasta OR rice as we find he'll only focus on one, but he'll actually eat about 10 times more then before. I give him more generous servings then we used to and it's still not uncommon for him to ask for a 2nd serving and then eat most of it. He also continues to like ketchup and salad dressings. Before he would eat 1-2tsp of it, now he'd be happy to eat a whole bowl of the stuff. We're so happy to see this interest in food, (not really the ketchup part), but we wonder how long it will last. At this point we're going on the assumption that it's because he's making up for what he lost. At first he wasn't getting full volume, so he was likely hungry, and now he's only been on full volume for a few days ... we'll see how long this lasts, but we're enjoying it while it does.

We had a few more appointments this week. Nothing of huge importance. I did see the pediatrician on Tuesday, more just to review what had happened in hospital. She was actually already well informed, since she had talked to the doctor we had in the hospital just before we were discharged. We found it interesting that she told us the doctor we had did not believe that it was the para influenza 3 that caused James' hospital stay. I know my pediatrician did not think that this was the cause, and the doctors at the hospital knew that we did not believe it was, but we question why they wouldn't admit that they felt we were right. In hospital they kept trying to convince us that his symptoms did fit the description of the virus, they knew they weren't convincing us, but they kept trying. I do believe that at first the doctor really thought it was the influenza, but after a few days came to realize there must be something else because we really seen her change her attitude after a couple days, or maybe it was just because she knew we were going to stand our ground and not be easily swayed. I also realize that they couldn't do any further investigation because the fever disappeared (mysteriously as soon as he went onto antibiotics again) and they didn't reappear, so their hands were tied because the swab showed the influenza, but they could have simply admitted that they felt we were likely right. So now it's all a wait and see to see whether any of this will come back again. Our pediatrician is on call in January, so if it does we sure hope it's then.

It's good to be back together as a family, altho I must admit I haven't been the most pleasant person this week. Still fighting this cold, head congestion and borderline ear infection, the echoing from the congested ears drives me nuts. But oh well, I think we're finally making progress. Rob finished his exams on Tuesday and has been hard at work around the house the last few days getting that honey-do list caught up ... or at least attempting to.

Ah .... Home!!!

We are home after another sleepless night. Last night I had considered staying home and leaving James on his own, but I'm glad that I toughed it out. James did not sleep well last night; he kept waking and crying, often pulling on his G-tube, making us wonder if it was his stomach bothering him. The crying would bring on the coughing, and so it was a bit of a cycle for a while. We had put James on a 3 hour feeding schedule, but held off on that once he started acting up. He ended up sleeping with me on my so-called bed ... for anyone who's seen how big that is, you can well imagine how comfortable it was. Early morning I was able to move him back into his own bed and he slept good for several hours.

James' temps were down today, in the 37-37.4 area and his SATS were back up to 98%. Since he wasn't getting worse we were well and ready to head on home. The doctors are extremely impressed with how well his lungs have done throughout this whole episode. Para-Influenza 3 is a respiratory virus usually result in much more breathing difficulties. In connection with his Intersitial Lung Disease this is certainly a positive thing. We will have to continue to work on his feeding schedule to see what works best in order to get him back on track. James was admitted at 10.4kg (22lb 15oz) and discharged at 9.6kg ( 21lbs 2.5oz). We realized that James has lost weight, but did not think he had lost that much. This will be a huge hurdle for him to get back on track, first to get his feeds back up to the correct volume and back to the old speed and then to make sure he actually puts on weight. It is discouraging to see him fall so far behind again, but hopefully he'll bounce back quickly once on proper feeds again. The challenge is to get him back onto full feeds without causing the diarrhea to come back.

Right now sleep is top priority for all of us. The girls are still not home as I'm not feeling well just yet. Hopefully tonight I can good a good night sleep, and with a good nap tomorrow and we'll be ready to conquer the world again. Tomorrow James has a pediatrician appointment, but I don't think this will accomplish much. We'll likely have to wait until the new year to make plans for the port, endoscopy and g-tube change.



Daddy entertaining James by
playing with his bed

"Help, let me out of here!!"
Playing by the window

A Few Lessons

Lesson #1 - Don't tell yourself it's your last night sleeping in hospital, it only makes the next day and night harder
Lesson #2 - Don't start packing until you have the discharge slip in your hand, it only makes unpacking all the harder
Lesson #3 - No matter how many vitamins you take or how healthy you eat ... expect to get sick ... that's what happens when you hang out with all the bad germs.
Lesson #4 - Convince yourself that this is your new home ... and you really like it here .... that way the days won't seem so long and boring (especially when you're not feeling well).

Okay ... as you can tell, today was a bit discouraging. Several times now I had thought we would be home soon and it didn't happen, but today I was really sure that we would be going home. We started James on full strength feeds yesterday evening and continued with them throughout the night and it went well. His stools are slowly getting back to normal and as Rob mentioned he was back to himself yesterday. The one thing that is really good is that he's much more interested in food. He will pull up his high chair to let us know when he wants something to eat and he's been spending a fair amount of time in it. He doesn't eat huge amount, but it's the fact that he's so interested that surprises us. We wonder how this fits into the equation - did his gut have enough rests that it feels better? is the slow feeds easier on his stomach? is he hungry because he not getting full volume? This afternoon was our first attempt to take him off continous feeds and try him back onto larger feeds and if that goes well we will have to slowly work him back up to his full volume.

So what went wrong today?? This morning James woke with a raised temperature. Not necessarily considered a fever, but raised as James has a low body temperature normally (36.5C-37.0C). He woke with 37.5-37.7 temperatures. At first I didn't think to much of it and figured he'd shake it in an hour or so, carrying on with my desire to go home. But they did not go and continued to hang on in that area. The doctors did say that this can happen with the virus, that he'll have low fevers for a while, but yet he hasn't had fevers for several days. We were scared to go home and have them rise on us again, but yet he seems so well we really didn't want to stay any longer. It was decided that they'd come back later in the day and see how he was doing and then we could decide if we want to leave. The temps. continue to hang out in the high 37C area and then this afternoon when they did his vitals his SATS (oxygen) levels were low. Not bad, around 92-95%, but a healthy person should be 99-100% and James has usually been good in that area. When James has breathing difficulties he drops around 95-96%, so it seemed odd that they would be down since he's doing so well. His breathing continues to be faster then normal (36bpm), but only up around 48bpm, which makes sense considering he has a cold. With his SATS down our decision was made, we're going to have to stick around a bit longer and see what's going on.

James is doing well, he's completely happy in his own little room. He's received several early birthday gifts as well as some toys from the hospital and he keeps busy with them throughout the day. He is such an easy child (in that aspect) and we feel so blessed as we watch him. On the other hand, I'm having a hard time with this cold, a head congestion cold. That and lack of sleep makes the days long and tiring ... who knew a person could feel so tired after sitting around doing nothing all day.

Rob has another exam early tomorrow. Since he wasn't feeling well over the weekend he needs to get up very early tomorrow and study, which means I have to sleep at the hospital again tonight. Tuesday Rob has two exams, an intense day, and then he's done and can relax for a few weeks. Marietta has been home part of yesterday and for today, she must have had a busy week because she had a long nap this afternoon. I was able to go home and nap for a bit this afternoon, I did not make it to church as my head was pounding and I could hardly keep my eyes open, but now I must drag my butt back again. I hope you all had a blessed Sunday, it feels so wrong to not start off the week without hearing at least one sermon.

Update

The continuous feeding seems to have done the trick. James is now at 3/4 formula 1/4 pedialyte, and his digestive track seems to be tolerating this. There is evidence that his colitis was set off by all this, making the recovery a longer process than normal. We're hoping that we can make it straight formula tonight yet, and if all goes well, go home tomorrow. Steph is really hoping for this, hoping to be joined to her family, her house, and I think most of all right now, her bed. James really perked up today, and is much back to himself as far as energy and character goes. He received another early birthday present today when Marietta came to visit, and boy did his face light up when he unwrapped the package of hotwheels race cars! There was no hiding his glee. He's already put on many kilometers, even done some cliff jumping off the heat register with them.
Being with James a lot, it was almost inevitable that someone would get his bug too. Since Steph and I are such a sharing couple, we each took half of the virus. Steph got the runny nose, and I got the runs. Thankfully I did not need to dash out of my exam to find a porcelan throne.
How good it is that each week we can start again by worshipping our God, publicly and communally to call upon his name. Hopefully this night will allow us to be refreshed to be able to fully participate in this festivity.

A Few More Days of Isolation

It seems we continue to step backwards instead of forwards. We've tried various things to get James to tolerate his feeds, but so far have not been successful. As soon as we put something in him it comes out the bottom end, often before we're even done feeding him. This morning we decided to try a new tactic again. Instead of giving him 4 feeds a day we are continously feeding, giving him 30ml (1 ounce) per hour. This is our last attempt before having to put him on TPN (Total Parenteral Nutrition - food/vitamins via IV). We are really hoping this last attempt will work as we rather not have to put him on TPN. We don't have a problem with the TPN in itself, but it's the IV. His original IV (which is acually the 2nd, since the first one on Sunday was a dud) came out this morning (5 days old), and with all the times they've drawn blood this week, James does not have much of a selection of veins to draw from. (The kicker of it all is that it's not uncommon for it to take two tries before they get the vein, and that after rooting around a good bit first.) Also, TPN is hard on the veins, making for greater chance of 'losing' the vein again and making the vein more callus. We are really seeing the value of a PORT right now.

James has been off of his antibiotics for 48 hours and so far no fevers. This is good. His white blood count was low yesterday, indicating that he's still fighting infection as. This is characteristic with the virus he has, so it does not indicate anything else going on. His potassium levels are also low, meaning he needs more electrolytes. He does get potassium through the Pedialyte we are giving him, but not enough. This is another reason that they will have to start TPN soon if his gut doesn't start to accept the feeds. The biggest concern for James is always his Ammonia levels (indicating his protein levels) and so far these continue to be fine.

James had a slow start again this morning, but perked up just before noon hour and played really nicely. He's loving the fact that he was not connected to the IV and could play throughout the room. He especially liked to hang out by the window and watch the activity of the outside world. His room is at the corner of the hall way, by the main entrance, so there's lots to see! At noon I had to hook him up to start his continous feed, but he continued to play well and I thought I wouldn't be able to get him down for his nap. I put him in bed and not even 3 minutes later he was sound asleep. I guess all that extra activity tuckered him out, but it was nice to see him actually walking and playing.

The respirologist came to visit us this morning. We're still trying to process what he was telling us, he seemed in such a hurry. So here's what I think he was trying to tell us: At this point they still believe what is going on with James is the para-influenza 3, which is a respiratory flu. James' lungs are infected or inflammed, which means that he has a pneumonia. Most of us think of pneumonia as a specific infection or cold, but really it's a general term for inflammation in the lungs (or so I gathered from the conversation). At this point James will continue to be monitored and hopefully he can kick this virus on his own, if he does not, they may need to help his lung along by flushing them out. At this point this is not necessary. The biggest thing need right now to help them see how he truly is doing is an x-ray of his chest when he is NOT sick. Every x-ray that has been taken is when he's in hospital because he is ill. We need to find out if his lungs look the same when he is doing well. From there further decision can be made on if/or what type of treatments to do. He has suggested that it is possible that it is the same infection which brought him to hospital earlier, altho at that time we did not get a positive result on the tests.

Rob stayed with James last night since I could not handle another night of no sleep ... of course last night James slept just fine (the night before he kept coughing and the IV kept going off every 15 minutes). But I got a wonderful nights sleep ... ready to tackle a few more not so good ones. Rob's busy cramming for his first exam ... can't wait until those are done!! :) But I must get back, Rebecca is coming to visit me. Don't want to be gone when she gets there.

Still Hanging Out On 3C

Well I spoke too soon yesterday, not only did James' fevers redevelop, but so did his vomitting. We have not fed him since supper last night (which he threw back up) and he continues to have diarrhea at this point. At noon today I hope to just give him some Pedialyte to keep him hydrated and see what happens with that.

The doctors have not talked about discharging again. Since James is not eating they cannot let him go until he is tolerating feeds again, otherwise we could end up into trouble with his ammonia levels. The blood cultures came back last night and all is fine in that area, so they stopped the antibiotics this morning. Now it will be a wait and see process to see if the fevers come back more consistently and higher. If they do then they will have to reevaluate, if they don't then we can go on the assumption that this has all just been a virus. Let's hope that they give him enough time to truly show how he's doing, as last time it took 36 hours before the fevers began again.

At this point James is still pretty inactive. He will play in his bed or on the chair or snuggle with us, but he has not asked to go down or walk and does not seem to have the energy to. Although his actions show that he does not have much energy, he actually does not look to bad, just a little pale.

On a good note, we got the results of the Echo today. The Lord has answered our prayers and we received a good report on his heart, no murmur, nothing to be concerned about. This is certainly reason to be thankful, we were so afraid we would have to add one more organ to his list of ailments. One less thing to worry about :)

Well I have left him for long enough, I must get back to our room ... maybe I can get a nap in myself :)

Revised update

Hi again

We spoke too soon about the fevers. Steph felt James was hot, so she checked with our handy dandy-3-second ear thermometer, and it showed 38. 7. So, since he was on a no-fever streak, she called the nurse to come, take and record his temp. She checked, and her machine showed 36.2. Steph then requested them to do a rectal temp. (the most accurate and reliable reading. In emerge they have to do these, and we always compared our new thermometer with their readings, and usually varied by only 0.1 degree). The rectal showed 38.9. That's over 2 degrees difference! This changes the picture completely, from low grade, don't-worry-about-it fever to high grade fever. There was a discrepancy last night too about the two readings (ours and theirs), and a rectal was done then, confirming the accuracy of our thermometer. The night nurse then continued to use ours the rest of the night. This is a good sales pitch for Braun!
Poor James. He sees the rectal thermometer coming in the room and his cheeks are already clamped tighter than a vice-grip.

Update

James has been doing relatively well the last day regarding his fevers. He has not had a fever since 2pm yesterday. Although the fevers are not present, he looks very drained and tired. He slept relatively well last night, only waking occasionally to get some coughing out of his system. There is still no spring in his step, he either snuggles or sits in in crib or on the chair. He will play, but has no desire to get up and run or climb: this indeed shows that he doesn't feel all that well.

The doctors came in today with a bit of a different view than yesterday. This is where we often get frustrated. We also seem to have a head doctor who has made up her mind and doesn't really want to listen (the joys of dealing with yet another "new" doctor who has not seen James before). They at this time feel that "it's just the influenza that has set this all off, he probably had the fevers for the 5 days prior to the actual onset of the cold and vomitting because his body was trying it's best to fight the flu off. They will wait until the blood cultures all come back (tonight or tomorrow morning), take him off the antibiotics and then discharge him." I said we would not allow him to go until we see what happens once he has been off the antibiotics for some time.

It would definitely be wonderful if it's just the influenza, but some things in the puzzle don't make sense if that is the case. Last time he arrived, we found nothing in his blood cultures, started him on antibiotics and 12 hours later he was doing much better. Even though he did not go fever-free for 24 hours, they let him go home because he looked so well. He comes off antibiotics and the fevers are back. He goes back onto antibiotics and the fevers disappear again. It could be concidence, he could simply have made it over the hump of the virus at the same time, but I want to be sure that it is. They have admitted that the cultures will not detect ALL bacteria infections, just the main and most common ones. So with these things in mind, we feel it is worth waiting an extra day or so in hospital to be sure he is indeed better. It's much better to wait extra day in his room, then to spend that same amount of time waiting in emerge a few days later.

Although they feel it's only the influenza they would still like James to see the respirologist again before he leaves to further discuss his lung disease and to see if there is anything we can do to assist him better at home. Although his lungs do act up and cause him to breath rapidly and laboured, they remain clear, which is definitely good. They have also taken all the x-rays (and there's lots of them) of his chest and sent them off to Sick Kids Hospital in Toronto for a second opinion.

Since James has the influenza all procedures involving an anesthetic will have to wait for some time, until he his completely better and well on his way to recovery. This means no PORT (which is so badly needed as they are having trouble finding veins in our little guy), no endoscopy and no mickey (g-tube change) for some time. We are still waiting for the results of the Echo, they are looking into it today since it should have been back by now.

Para Influenza 3

After all initial blood work revealed nothing out 0f the ordinary, they took more blood, and found a strain of the flu...para influenza 3 to be exact, which is a respiratory virus. Therefore he is in isolation, meaning that others coming in to the room must wear a gown, and a mask. The bright side of this is that he has a private room, and it comes with its own bathroom too. Most people may fight this virus with some effort, but since James has interstitial lung disease as a spin off of LPI, this affects him a little harder. Although this is a solid find, it is not conclusive to the whole problem, since he did not show signs of having anything out of the ordinary (for James) with his respiratory system until Sunday morning. This does not explain why he had fevers all week. If the flue bug was the initial cause at the beginning of the week, it likely would have come and gone by now. As well, they have not ruled out the possibility that this is a continuation of the problem from the last time James was in, even though his full dose of antibiotics should have killed whatever was bugging him at that time. (It is interesting to note that an aquaintance of ours, who were in with their baby the last time James was in, have just been re-admitted too. Although their child has completely different issues than James, they are back in just after finishing their treatment too. Hmmm)

Cultures from last nights blood work are in their 48 hour growing stage, so maybe we'll have more news tomorrow night.

Although our trooper went into emerge with a bounce in his step, today he looked like he belonged in his hospital crib, even though his fever has been somewhat milder.

Rob has just finished his last day of Term 1. His exams start on the 9th, and he'll be done on the 12th. Bang bang bang. Oh well, at least they'll be done and over with right away. Although from a horizontal view of life, some may see this as bad timing, James in hospital, and Rob in the middle of exams. But this too is part of God's plan. He is able to turn whatever adversity he sends us to our benefit. May this be so, to the praise of His Name. In this confidence, we do not despair.

Fevers ... Vomitting ... Hospital

So we didn't quite make it through the weekend, but in the end it turned out to be a good thing because our pediatrician was on call today ... yah, someone who knows and understands James ... as best as James can be understood.

Last night James had as "semi-seizure", if it's possible to have such a thing. We're not really sure if it was a seizure or not. He woke around 10pm crying and when I tried to console him he did not acknowledge his surroundings or recognize us. I took him out of his room and sat with him while he continued to cry. After about 5 minutes of straight crying he began to vomit. Once he vomitted he began to realize his surroundings again, although it still took some time for him to stop crying. We eventually got him settled down, but he did continued to have a fever and laboured breathing. His breathing settled a bit and so we put him back to bed and he slept through the night.

This morning started off relatively well, he handled his morning feed, played as if nothing was wrong, (even though the fever presisted), and went down for an early nap. He did start to have a runny nose and a bit of a cough today, we're not sure where this came from. Shortly after his lunch feed he spiked a 40.2C temp and then vomitted again. We decided to stop putting it off, it was time to bring him in.

Once at hospital it did not take long to realize that they had already planned to admit him when they got our phone call letting them know we were coming, they were just going through the process of getting him to his room. If only we could always have our ped. on when we come in, it is so nice to have someone who knows him. It made it easier yet since I had talked to her several days this week so she knew exactly what had been going on and just had to pick up from where we last left off. We had to go through the routine blood work, urine test, chest x-rays, nose swap, and spent about six hours in Emerg. before we were sent up to our room. Once again we were put into isolation, once again we got our favourite room.

The initial tests that were done all came back fine. James different blood cell counts were normal, his ammonia levels were fine, and there is no intial signs of infection. His chest x-ray came back with only a tad bit more fogginess on it, which could just be a difference in how it was developed, whatever the case, it hadn't changed enough to cause the symptoms James has. James' hemmoglobin levels were low, but not worse then July. She told us it takes about 3 months of stability for them to get back into the normal level, he has had too much blood work done to allow it to stablize, but it's not so bad that he needs extra iron.

They will be extra cautious this time and will not allow James to leave until the fevers are for sure gone. He will be put onto antibiotics again. They will keep him the 48 hours it takes to get the blood cultures back. Further decisions will be made once they get the results from the blood work and are able to see how he reacts to the antibiotics. We are told to expect to stay at least 2-3 days, quite likely more. If he does indeed stabalize and they are able to squeeze it in then they may look at putting in a PORT and possibly doing the G-tube change and endoscopy. Such plans depend on many different departments and how James is doing, so at this time we're not counting on it, although it would certainly be nice to tackle all these at the same time.

Visitors are always welcomed. We do recommend coming late afternoon or evening as mornings are busy with doctors and tests and afternoons are spent napping (if no tests interrupt that time).

Hearing Test and More Fevers

Today I took James in to have his hearing tested. This is not because we are concerned about his hearing, far from it! His hearing is excellent. He needed his hearing tested as part of the process for speech therapy. We are not that concerned about his speech, but the doctors are. Various doctors and OT's keeping asking if we have seen a Speech Pathologist. We have been putting them off since the summer, feeling it is unnecessary. I will not deny that James' speech development is slower then normal. He currently has only 10-15 words in his vocabulary. But much of James' developmental skills/milestones have been delayed and we feel this is just another one that will come on it's own in due time. James has great comprehension skills; he understands things very well, he just has some trouble expressing himself, but we do not feel he is so far behind that it is a great concern.

So why the Speech Therapy then?? Mostly so that they will stop asking us if he has seen a Pathologist, and partly to get him into the system. We are told that it takes some time to get in for actual therapy if it is indeed needed. First you need to go through the "weeding-out" process. We will meet with a Speech Pathologist who will assess James and determine if he indeed needs therapy. They will also give us suggestions on how we can help him at this time, or what various programs we can take him to while we are waiting for more specific therapy, (like we don't have enough other ones to go to...) We figure it won't hurt to start the process; we can always take him out later if it's no longer necessary. We were also told that at this age it will be more of a training for us then for James, which might help us to figure out ways to encourage him to speak.

As for James' hearing test: it went well. I was actually intersted in going just to see how they test someone his age. All he had to do was sit on my lap and turn his head to the sounds that he heard. If he turned in the right direction there would be a toy lite up in a box for him to see, he would laugh at the toys. Of course he would be excited about seeing a lite up toy! So he started looking all around the room for them, but once he heard a sound he would usually turn to see where it was coming from. A few sounds he missed, but most he figured out. They said his hearing was in normal range, just as we figured. The one thing that did come out of the test is that when they tested his ears the tested indicated that there was fluid behind his ears. He will have to go back in a few months to see if this has drained out on it's own.

James' fevers have continued over the last couple days, up and down throughout the day and night. Even when his fever is lower his breathing continues to be rapid, usually sitting around 60bpm(normal for James is 36bpm), worse when his fever rises. Each day, usually early morning, we have one episode where we have debate if it is time to take him in, but each time we've waited it out an hour or two and it seems to settle again. We have heard him cough a few times, usually when he wakes up, but really no signs of a cold. I started him consistently on his puffers today, even though we have never seen any indication that they help him. What a amazing guy James is. He continues on throughout the day with little to no sign that he is unwell. He plays well, is active, and eats typical James style. He truly amazes us how he can keep going without even a sign of being extra tired and not even being cranky like he was at the beginning of the week. Yet we know that he's fighting something, and hope that he'll hold out until the week-end is over.