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.

Fevers

Another day of fevers, although not as bad as the last couple days. Hanging in the 38 area, they did climb a bit this afternoon and again dropped to 35.4C (36.5 is the normal area for James) once he was sleeping. Since we’ve been seeing this pattern, I made a point of checking him several times during nap time today, but they did not drop while he was sleeping. He was much more himself today and you would never guess he had fevers

Our Ped called this afternoon. She had checked the computer to see if any results or info had been posted about yesterday, but found nothing. She said she couldn’t wait until next week to find out what had happened so she figured she’d just call. So I told her about our day. She was happy to hear that the Echo was done and will keep her eyes out for it. She will be gone next week so we won’t hear anything until she’s back in two weeks time, unless things get worse and we’re back in hospital. With regards to the fevers she said he’s still borderline of whether it’s just another virus and since he is doing quite well all considering we’ll keep waiting it out for the weekend. If they are still not better Monday then we are to call in and see one of the other doctors in her office. This would be more just to confirm that there is nothing going on in his chest (pneumonia etc), which it does not seem like since he has no other symptoms except the fevers. At that time it will be his call to decide whether to put James on another set of antibiotics. She is reluctant to do this, but they may have to do it one more time before they determine that further investigation is necessary. We continue to pray that they will just go away and it’s something he picked up in hospital, but yet deep down we know James isn’t usually that simple.

The GI office also called this afternoon. It was not my GI doctor doing the Endoscopy yesterday, so now my doctor’s nurse called as they heard the procedure had been cancelled. She had spoken with the doctor and he did not feel that there was any reason that the procedure needed to be rushed and it could probably wait until March, but she wanted to know our feelings on this. We are not willing to wait until March! We have been waiting 3 months for this test to be done and much of James treatment has been waiting on what this shows. As well, unfortunately, we don’t always see eye to eye with this doctor. It was only by my complete insistence that the colonoscopy (scope of the small intestine) was done in August, as he did not feel it would give us any information or assistance in helping James and kept telling us that James’ stools (mucas and blood in them) was just due to a "virus". The colonoscopy is what showed us that James has colitis. This is the same doctor that was overconfident that he knew what was wrong with James before he was diagnosed and did not feel certain tested needed to be done. In the end he was right, they didn’t need to be done, but neither did any of the others, and his diagnosis was wrong. We all make mistakes, I have no issue with that, it’s how we deal with and admit (or not) to our errors that bothers me.

The nurse had no problem with me insisting we wanted it done sooner and told me they could actually have it done this coming Wednesday. This would mean another patient would be bumped back to March so we could have it done. I feel awful for having to make such a decision. I told her at this time I would not want to do this to someone else as we do not know if James will be stable. It would not be fair to cancel someone else and then not go through with it ourselves. She said she would need 48 hours notice and I could call Monday if he clears up. And once again, if he ends up in hospital, to make sure they are notified so that they can try have it done then.

Wednesday, November 29, 2006 - Disappointment

Home again after another long day, especially for James. A long and somewhat disappointing day, but not a completely disappointing day.

James struggled with fevers throughout the morning and was not completely happy. His fevers were not as bad as they have been so I carried on with the process of not feeding him. Rebecca thought it great fun to hide while she ate her snack. Our Ped had said that even if he wasn’t well to still go in with him. They would determine if they could go ahead, as well they could assess him and determine whether he needs to go to Emerge.

James’ procedure was set for 2pm and we had to be there at 12:30pm. We met Rob when we got there and he then took Rebecca home on the bus - a great treat for her, the girls always love going for a ride on the city bus. Unfortunately James’ fever began to climb as we waited. Not having a nap didn’t help, as well I had not given him any Tylenol all morning as I did not know if it was allowed. I know for next time that Tylenol is okay, but not Ibuprofen.

Every person I seen I had to question if the Echo had been booked. Our Ped had called in the morning to let us know that she had been chasing after things during the morning and getting it coordinated, but it still hinged on the anesthetist. My questioning also brought to realization that Surgery was not booked to be there for his G-tube and there was no indication that they were coming. All this after they confirmed with me last week that it was all a-go. In the end all the coordinating possible would not have helped as they called off the procedure because of his fever. They felt it was too much of a risk because we don’t know what’s setting off the fevers and since they are doing a biopsy there will be slight bleeding inside which can do more damage if he had an infection in his blood. They did not feel that this procedure would really help to explain the fevers in any way and was not that important to have done immediately.

BUT ...there is some positive news. They did feel that the Echo might provide further information and that it was important enough to do. So they proceeded to make arrangement to have it done without a sedation with the hope that James would cooperate and lay still. James has always been a very cooperative boy and he did not fail us this time. He lay still for most of the Echo but near the end he had enough, he had not had a nap, he had a fever and did not feel well, and he didn’t like the thing so close to his chin/face. Hopefully they got enough to give us an indication if there is anything to be concerned about. We continue to pray that we will get a positive report back and not have to add one more ailment to James’ long list.

The GI doctor said that she would do her best to make sure that James endoscopy will be re-booked as soon as possible. The current waiting list is 4 months and we will not wait that long. Although we do not think that this scope will make a huge change in James’ treatment, we do know that with James nothing goes the way we expect and so we would like to have this done to truly know what we are up against when it comes to the colitis and inflammation. Hopefully they hold true to their word about having it done soon ... we know all to much about taking the doctors word for it. We have to call them back once we know what’s going on with James, either when the fevers settle or when he ends up in hospital, which gives them much more flexibility on the time they can do the scope.

Once again James’ fever has dropped down this time to 35.1 when I checked him at 9:30. When I talked to Our Ped earlier today she said that sometimes this can happen with infections. Time will tell, we must try to be patient ...sometimes easier said then done!! :)

Tuesday, November 28, 2006

Off to the Peditrician again. This was suppose to be a quick visit to go over the results of the tests that were done on James while in the hospital. But as usual, I arrived with a long list of questions and concerns.

The most important thing we tackled today was the Echo. I explained to our Ped exactly what had happened and my conversation with the Cardiology nurse. She immediately told me that we were told nonsense that we absolutely had to see the Cardiologist first. She also told me that she agreed with me that an Echo was absolutely necessary on James. It being almost 5 o’clock she asked if I could wait while she tried to catch Cardiology before they left for the day. Not ten minutes later she was back, Echo in the works of being organized. Cardiology is able to do it but it comes down to whether the Anesthetist would have enough time, especially considering there was no backup Anesthetist on for tomorrow (which also means that if they are needed in labour and delivery, we’d be cancelled). We have a 50/50 chance of it getting done ... all that in a 5-10 minutes phone call ... and how long did I spend on the phone getting nowhere??

The other important issue we dealt with was the fact that I was not able to get a hold of her when I needed her ... and this is not the first time this has happened. I can’t work on a Tuesday to Tuesday basis; James doesn’t cooperate with such a schedule. I need to have some way to contact her in between if absolutely necessary, and I can’t seem to get anywhere with her receptionists ... the only thing they have learned over the past few months is not to tell me to contact my Family Doctor. That used to be their standard answer. I’m not sure if they stopped because one time I became extremely upset (and let them know) when they told me this, or because they finally clued in that James is beyond our family doctor. I have no desire to get a new Ped. I know what I have now, I really like her, she knows and understands James (as best is possible all considering), I would hate to start over at this point. She gave me two options:
#1. She would give me her home e-mail address so I have a way of contacting her;
#2. She would refer me to another Ped - no hard feelings.
We decided to go with #1, as I really don’t want a new doctor, just one that’s available more then one day a week.

Another thing we did discuss was getting a PIC Line for James. This is a permanent IV line. Someone had mentioned this too us and I had looked into it, but felt that maybe James wasn’t quite at the stage for this yet. As well, I couldn’t find very much information on the risks involved. What’s nice about our Ped is that we’re usually thinking along the same line. As soon as I asked about it she said she was going to suggest he get one. Instead of a PIC Line she suggests a PORT. A PIC Line goes in the arm, up the arm and sits just above the heart. A Port is put in the chest and is buried under the skin. Since I got home I’ve done a bit of research on the PORT and have mixed feelings about it. This is more invasive, but yet longer lasting. Is James really at the stage where he needs this?? We will have to meet with the Surgeon about this, so we’ll see what he says about it.

On another note. James is not doing very well today. Yesterday he started to have fevers. Today they’ve become even worse. While at the Peds he spiked up to 40C, but mostly he’s been hanging around the 38-39C with his breathing in the 54-66bpm area, borderline of hospital. The questions begin again. Is it just another virus? The fevers began 36 hours after he came off the antibiotics, is he still fighting the same thing? Our Ped agreed that he’s border line right now. For now he’s okay at home so we’ll see how he does as it’s hard for the doctors to make any calls yet since it’s only been two days and could just be something he picked up in the hospital. Interestingly, when I went to do his night feed at 10:30 he woke up and his temperature was 34.8C. He was cold and clammy, irritable and clingy. I sat with him for a while and eventually he went back to sleep. If his fevers persist all our work to coordinate tomorrow will be in vain as they will not do the procedure if he is not well.

Thursday, November 23, 2006

Today I took James to the hospital to have his Pre-Op appointment (this is when the go over everything regarding the "surgery" and you see the anesthetist to determine whether the person is well enough to have the procedure). James is suppose to have a endoscopy done (scope of the esophagus, stomach and large intestine), as well as the Echo and also to change his current G-tube to a Mickey (flat cap). Upon arrival I was told that the only thing they had on the list was the endoscopy, the other two were not scheduled. After talking to several different people I was left with the task of calling the other parties involved and making sure that everything was scheduled properly. Lovely that I was left with this task when it was suppose to be done already.

So the rest of my afternoon was wasted on the phone. My Ped. was not available in any way, shape, or form until Tuesday! This is not the first time I’ve run into issues and had not been able to get through to my Ped. She is only part-time and only in the office on Tuesday. As well, her receptionists are not always very cooperative. In the end I told them I wanted them to call Ped. Cardiology and find out what was going on because I knew Cardiology would not listen to me. Well at least they listened to that part because a while later I received a call from Cardiology. This call left me very upset and frustrated. It seems we are always getting mixed answers/signals and we’re always fighting our way to get things done. Peds Cardiology called me to let me know that they had booked an ECG for me sometime in February, at which I responded that I was suppose to have an Echo done NEXT week. Not wanting to get involved she quickly passed me along to the Cardiology nurse who I left a message with. Not long later she calls back to inform me that they have basically already diagnosed James. Okay, she didn’t say it like that, but that’s pretty much what she was getting at. According to her James likely only has a silent murmur since this murmur was not heard during the first six months of his life, therefore an Echo is not needed. My research on VSD’s gave me the same information - they are usually discovered in the first months of birth as these holes are from a child not developing properly in the womb. So she not be out to lunch on that part and I really hope she’s right, but she has not meet James and I gather from our conversation that she had not even seen his file or she would never have so freely made such a conclusion. After telling her that we were told that this Echo would be done she informed me that the hospital policy requires you to see a Cardiologist before you can have an Echo; it simply was not possible any other way. She did not like it when I informed her that James’ had previously been booked for an Echo which we had cancelled and we did not need to see a Cardiologist for that. In the end no matter what I said she insisted that it was not possible and besides there was no room in radiology for it to be done that day. Without my Pediatrician I had no where else to turn and had to leave it at that.

After getting myself under control again I figured the next person I better tackle is the Surgeon to confirm that they indeed do have him booked for the tube change. I had actually already spoken to the Surgeon nurse about this twice and she told me it was a go. I spoke to her again and she told me it was all booked and set to go.

They gave James a choice between a surgeon cap or a sticker at his appointment today. We took the surgeons hat. He doesn't really like to wear it, but will put it on for a few minutes if you ask him to see it. He'll smile brightly at you to say "see" and then take it off.

Thurs. Nov. 16 (3am) to Sat. Nov. 18

Another hospital stay. After two months of things going relatively well, we found ourselves back in hospital. James had a another cold which developed into high fevers, rapid and laboured breathing. I always hate taking him to Emerge because I know he’s going to be pricked and prodded and "tortured", but in the end I decided I better take him in.

Upon arrival at the hospital I debated turning around and going home because my "oh-so-sick" little boy was bright and chipper and didn’t look "oh-so-sick", but they were waiting for us so I carried on. (We are on the hospitals chronic care list - yes, privileged people we are - and before I go to Emerge I call ahead and speak to the Pediatrician on Call.) Well James’ good spurt didn’t last that long and they got a chance to see why I had called in. We ended up staying in Emerg for 14 hours while they pricked, prodded and "tortured" the poor guy. For the first bit they were unsure whether to keep him or not, but then he spiked a bad fever and his breathing got worse so they decided they needed to keep him in. They tested for all kinds of viruses again, as well as a bladder infection, did a swab of his G-tube site to see if it was infected and attempted to scrape the wax off her eardrum so they could tell whether or not his ears were infected. They tried to cover all areas but in the end he just ended up on a broad-spectrum antibiotic again. This is another reason I hate taking him in - they always put him on antibiotics, causing more yeast infections. Because he did have a cold a few days before coming in they did a swab for RSV and then he was put into an isolation room. It was worth the wait in Emerge: we got the best room on the Ward ... our own private room WITH an attached bathroom (yes that’s right, the other private/isolation rooms do not have their own bathroom - does that make any sense?). Technically parents are not suppose to use the bathroom, but when it’s my own private one and there’s no one else using it ... only makes sense I do!! :) This makes it so much easier as he’s at an age where it’s so hard to get away from him and I have such a small bladder that I’m always in need of a bathroom.

The next morning he woke up more like himself and I thought we would go home, but they wanted to keep him until he had been 24 hours without a fever. He did have a couple lower fevers throughout the day, but the next day they still let him go ... good thing because it’s hard to keep a relatively healthy and active kid happy in a room when he’s hooked to tons of cords and monitors.

BUT, that’s not the end of the story ... before we were discharged the resident checked him over and thought she heard a heart murmur. She called in the senior resident who heard the same thing, they proceeded to call the Team Doctor. He too heard it and was quite confident that it was not just a silent murmur, but an Apical Muscular VSD (I was later told by my Ped that it was pretty guttsy of him to name it that as you cannot tell without tests what kind of murmur it is), which is a hole between the left and right chambers, allowing oxygen-rich blood to go back to the lungs. He felt an Echo (an ultrasound of the heart) should be done. When he found out that James was going to be sedated on November 29 for an Endoscopy he said they would coordinate it to all be done at the same time. After waiting several hours just to get our discharge papers we finally got home late afternoon.

Chubby James.

At one point they loaded him with IV fluids because they thought he was
dehydrated. They had tried to get urine via a cathera and absolutely nothing would come out, not even a drop. So they loaded him with IV and tried again ... and still they could not get a drop out. They were baffled as a cathera can only go one way on a boy ... but hey, this is James. Poor guy was sore after that and then when he had to pee he would wiggle and squirm and cry ... hint for mom to grap the urine bottle and catch what's coming .... and so we got a "clean" urine specimen.

Filling in the Blanks

Well, like so many other things around here, James' journal was not complete that day and I never did get around to completing the entry. From now on James' journal will be the blog, hopefully that way I can keep up and not be dublicating between e-mails and his journal. So this leaves me with the task to fill in all that has been going on up to today date and then hopefully I can carry on with more reasonable length entries.

Tuesday, September 19, 2006
James had a pediatrician visit. A couple of the issues we dealt with at this visit was James’ constant sweating and his feet.

Since birth James sweats easily and excessivley. I would always have a pile of sheets under his main crib sheet in order to absorb the sweat. This sweating was worse with warmer weather, but also noticeable when it wasn’t so warm. Recently we had noticed how it would also happen more frequently when he was traumatized. If he were to fall or trip he would break out in a sweat in seconds and have beads of it on his almost bald head. We began to wonder if there is more too this. It was decided to do blood work regarding his thyroid. Although it’s not common in young children, it is possible to have thyroid problems at this age. Our Pediatrician also suggested getting an Echo done. I did not really ask much about this, or why this test because at the time I didn’t really realize what it was.

Another thing we noticed now that James was walking on his own was that his feet point outwards, especially his right foot, which at times makes him favour his left leg. We had seen it before when he was walking behind a walker and had hoped it would correct itself once the walker was no longer in the way of his feet., but as we look at his foot it seems to be in the actual bone structure. The doctor said that it is still possible to correct on it’s own, but she would like to have him checked out just in case.

Also this visit, we received results from some stool tests that were done to check the PH level in James’ bowel movements, to see if they were high and whether this was causing the sore bum. The one test came back in the normal range, the other specimen they were unable to use.

Tuesday, October 31, 2006
This day was a Genetic visit. Since our Pediatrician oversees most things and contacts Genetics if there is any major concern there was not a lot to be said or done at this meeting.

James had been doing well, he was growing and looked healthy. At this time he is not meeting his full volume requirements for his formula feeds each day. He is suppose to get 1300ml per day in order to get the correct amount of nutrition and protein each day. (Keep in mind that he also can not have too little protein as then his body would start breaking down his muscles in order to get what it needs to function). At the time of the appointment James was getting 1085ml per day. They felt that this was fine because he has been doing so well. He is growing, a little faster would be nice but not necessary. If we can slowly increase what he gets that would be okay, but there is no point in doing that if it’s just going to set him back. They said they would contact me if his blood work showed that something needs to be adjusted but I haven’t heard from them, so he seems function okay on what he’s getting. Since that appointment we have managed to bump him up to 1110ml per day. At least that’s what the pump is set for. We always measure the same amount each feed, but do not consistently have the same volume left over. A friend of ours (who works in a NICU) told us that this was because with every feed, the line (part of bag, but what wraps around the pump) stretches out a little more, making each cycle of the pump smaller. Initially, our coverage only allowed one bag per 5 days. (So that’s 25 feeds per bag.). Since our friend kindly informed us of this stretching, we use a bag for 2 days (10 feeds), and have noticed that the excess after the feed is more consistent. We now have coverage for 2 bags per week, but after seeing this result, we’ll stick with using more, even if we have to pay for the bags ourselves!.

None of the DNA tests have not come back yet. In September they got hung up at the border because of issue with James’ OHIP card, so almost 4 months later we’re still waiting for the final confirmation. This test will only deal with the specific gene that they feel is the problem, it will not look at his entire DNA map.

James had a bone density test in July which we never heard results on. This is because there is not really anything they can base the test on since there are so few children that have this test done. This test will serve as a guideline for the future and he will continue to be monitored to catch any problems that may arise due to osteoporosis .


Tuesday, November 7, 2006
Another Pediatrician visit.

We reviewed what to do with James when he gets a cold. The end verdict was to go by our gut instinct. High fevers and rapid breathing are what we watch for. We should watch if his breathing goes over 60 breath per minute (bpm) or becomes laborious. She also prescribed puffers/inhalers for when he had a cough. It is best to start him on them as soon as he has a cough to try and prevent problems (although we have never seen that they actually help him). We can also alternate Tylenol and Ibuprophen (every 2-3 hours) to maximize the fever relief and try to keep it in check, although they really won’t do to much to bring down the fever when it gets as high as his do.

In the past couple months James has been relatively stable (in comparison to the summer) and we also seen the sweating go away. We felt that since the excessive protein was likely the cause for his instability, an Echo would no longer be necessary now that he was stable. Our doctor agreed and we will not proceed with it at this time.

It was also agreed that we no longer have to consider James milk intolerant, but just protein intolerant. Taking him off milk helped because milk is high in protein but there is no indication that he is actually allergic to milk. This doesn’t actually change his diet because due to his colitis, he cannot have lactose.


Friday, November 10, 2006
This time it was a visit to the Endocrinologist. This visit was set up already in the summer when James was in the hospital. Back then, his growth hormone levels were low and some patients with LPI require hormone therapy to help them along.

The Endo Doc did not seem too concerned about James at this time. He said that sometimes the hormone levels go low when a person is ill. James is low on the charts, but he continues to go upwards at his own pace. He will need to be kept an eye on, so in six months he needs to go back to see where he’s at. We still did some blood work to see where he’s at so that we have a baseline for later. That was an easy appointment. :)

The months of September and October were not too overly busy, we had 1-2 days with appointments a week but after spending 5 weeks of the summer in the hospital it was great to be home and able to establish a routine again. With Marietta starting Grade 1 and going to school everyday we had no choice but to develop a routine. Thankfully James quickly adapted. After James’ last stay in the hospital we did struggle with him for several weeks to teach him how to go to sleep on his own. He had spent so much time in the hospital where we would always lay down beside him to get him to go to sleep that he thought we needed to do this at home too. So for a few weeks we found ourselves laying on the floor beside James’ bed to get him to go to sleep. We slowly weaned him off of this process once his tummy/g-tube was feeling better and we knew he could handle a bit more crying (stomach muscle action)

Maybe September and October were just the calm before the storm. I will admit that we began to relax a bit and felt more confident that James’ health was finally becoming stable. November started with a bang and hasn’t slowed down since. We’ve had appointments 3 days almost every week (the one week that we didn’t we ended up in hospital for 3 days), sometimes more then one per day [I must clarify - they have not all been for James...I have my own list :( ]. James did make it through his first cold without too much trouble, making us even more confident. He did have one night where he had fevers and his breathing picked up, but that was the peak and the next morning he was back to himself. Doctors had warned us about the winter months but this gave us some more confidence that his health was picking up. It was a short lived confidence.

James' Journal

Well it seems that August 18 was the last update e-mail I sent out. This leaves over 3 months of activity to catch up on. I have tried to keep a journal for James but have fallen behind on this as well. I will continue here by taking pieces from James's journal. Since this journal is written from James' perspective, the "I" would be James.

Tuesday, November 7, 2006
On Wednesday, August 30, 2006 I made yet another visit to the hospital. This time it was actually a scheduled visit. The ugly NG-tube finally came out of my nose and a new G-tube was put in my tummy. This was done by surgery and I had to be put "out" for the surgery. I sure woke up screaming and crying for quite a while. Eventually I settled down and slept and slept. I stayed in the hospital until Saturday. In the hospital I spent most of the time in bed or going for stroller rides. I had lots of morphine, so I slept lots. The last day I was getting up and around a bit more like myself. I would automatically pull up my knees to protect my belly if someone picked me up. In the hospital they slowly worked up my feeds and then let me go home.

I arrived home to vomit at suppertime, a couple days later I vomitted again and my belly was very distended. I became irritable and was sweating lots. Mommy and Daddy decided to slow down my feeds even more. After that I seemed to be better. Because my feeds were slowed down it took about an hour and a quarter to do my large feeds. This left little time for snack feeds. Mommy decided not to give me snack anymore but to see how I did on just my "meal" feeds. . My bowel movements became more normal, more paste like and no more mucas. I did not seem as cranky anymore either. I also slowly began to show a bit more interested in food, picking at things here and there. Overall I was doing pretty good.

My G-tube site took a bit of time to heal. For the first two weeks I was in a lot of pain. About a week after the surgery I developed an infection around the site. The site became red, swollen and there was discharge from it. Mommy called the Surgeon and was told to put polysporin around the site. This seemed to take some of the redness out of it, but I was still not very comfortable. I walked cautiously, I would not go up or down the stairs, and when I was picked up I tensed up and pulled my knees to my belly. Mommy and Daddy picked up like a little baby, always being held under the bum too, but I still was in a lot of pain. Two weeks after the surgery mommy had to take me to the GI doctor, at the same time she stopped in the Surgeons office and was able to see the nurse. The crossbar on my tube was way to tight, she loosened it up a bit and showed mommy how to loosen it if it needed to be done again. She also said to stop using the Polysporin and instead to treat the site with salt water in order to dry out the granulate skin that was trying to grow around the hole. The next day mommy loosened the crossbar a bit more and in a couple days mommy could tell the difference. I was walking better and not so tense when being picked up. Before long I was doing stairs again, sleeping on my tummy, rolling, playing as if nothing was there. There continued to be redness, discharge and bleeding around the site. At the beginning of October it started getting worse and I was becoming more tense when being picked up again, lifting my legs to my belly again. On October 10 mommy seen the Surgeon and he treated the skin around the site with Silvernitrate (burns the skin) and then prescribed an antibiotic to get rid of the infection. that stuff sure works, because when I snuck my hand under my shirt, a bit of skin burned on my finger tips. In a couple days it was looking really nice, no more discharge or bleeding. Mommy also requested to have a Mickey tube put in. Right now I have a 10 inches of tube hanging from my belly. Mommy tapes it to my tummy so that it doesn’t hang out of my shirt and get caught, and to keep it more stable and not swinging around all the time. My tummy of course gets red and irritated from always having tape on it. On November 29 they hope to put in a Mickey (which is a flat cap).

My G-tube looked wonderful while I was on antibiotics, no more discharge, no more bleeding or granulation skin, no more redness. A few days after the antibiotics were done the discharge came back. The last few weeks it’s been getting worse. My tummy gets red all around the site, more discharge, little bit of bleeding and there seems to be some granulation skin coming again. On Tuesday I went to see the Genetic Doctor and mommy had a chance to talk to the Surgeons nurse again. On that day my site was looking really good and she said it was fine, that it’s just a foreign object my body is fighting. Since then it’s been getting worse and I’ve started to pull my knees up when picked up as well I itch at it because it’s bothering me. Next week I see my Pediatrician, hopefully she can decide if it needs more treatment.

Since I’ve been out of the hospital I’ve had several doctors appointments to keep an eye on me. I’ve also seen GI again on September 15. My GI Doctor said that the biopsy they did during the scope had been sent away and at this point they believe that the colitis is LPI related, likely from overexposure to protein. He would like to do an endoscopy, which is a scope of the esophagus, stomach and larger intestines, from this scope they hope to get a clearer indication of the extent imflammation that I am dealing with and then decide how is best to treat the situation. It was also discussed whether there is a problem with my system absorbing sugar. At this time they do not think this is the case so they are just going to do the scope. The doctor also prescribed some more Canesteen for my yeast infection/rashes on my bum. Yeast infections are common with someone who has colitis and whose system is not functioning properly, it also comes when a person is on antibiotics, since antibiotics can kill the bacteria that fights yeast. I have been on antibiotics often in the last months. At this time they will only treat the symptoms on my bum and are not going to treat it orally, hoping that once my body stabilizes this will settle down. The GI Doctor also prescribe a medication that will help to hold my bile together and reduce the amount of phlegm/mucas in my diapers. Mommy took this prescription to give a try if the mucas gets quite bad again. Mommy has not tried the medication yet as she does not like how it just covers up the symptoms and doesn't treat them. By covering the symptoms mommy says she would not be able to tell how well or not-well I’m doing.

I had been doing well on the slower feeds since I came out of the hospital in September and slowly mommy and daddy started to feed a bit more and speed it up a bit. I was being fed at 200ml/hr and they got to up to 210ml/hr and started to see more mucas, at 215ml/hr it got worse. Instead of giving the medication that the GI Doctor gave me, my mommy decided to first see what would happen if she dropped the speed down to 175ml/hr. Since then my stools have been more paste-like and much less mucas. Although the stools are looking better and there hasn’t been too much mucas (and no blood) my bum still continues to get very red and sore. This past week mommy started using spring water (bottled) to make my formula, instead of the chlorinated ditch water that the city delivers to our tap. She did not see any immediate difference from doing this, but thinks that regardless it would be better not to have so much chlorine water in my system.

Right now everyone is waiting for the endoscopy to be done before any further decisions will be made. I continue to have the dietician come every other week to discuss how I’m doing and help if necessary. The Occupation Therapist only comes once a month right now since I’m mostly on tube feeds and do not eat very much. Every now and then I’ll start picking at food again and then I’ll stop and don’t want anything. Lately I’ve been pretty consistent on not eating much at all. If I do eat something it’s usually nazzi (spiced rice) of which I like to eat the rice one "kernel" at a time. Sometimes I will eat pureed strawberries or I might take a bite of my porridge. I also like to lick salad dressing or ketchup. Recently I’ve decided I like to eat my "cheese" slices and will eat 1/4 to ½ a slice at lunch time. I have no interest in popsicles, "ice cream" (technically frozen nutriwhip), jello or things like that. Mommy gives me three things to choose from at lunch and supper but I seldom touch it, except to play with it. Mommy also bought all kinds of veggie chips, rice crackers/chips/crisps from the health store, but I don’t really like them either. I used to lick the flavouring off them, but now I don’t even do that. I just like to pick them out of the bag and then leave them on my tray or give them to someone else to eat. Mommy tried to do baking for me but I have absolutely no interest in sweet things or any sort of baking, I prefer things with spice, like nazzi and bahmi and bbq flavoured rice crackers.

Friday, August 19, 2006 - Hospital AGAIN

It seems I'm always writing when James is not doing well, so last week I thought I best send a letter off telling how good he was doing at home. How he was gaining weight, looking good, even looking older ... less baby, more little guy. He loves being home, is energetic and plays so well. I held off when things started looking less good on the weekend ... and well now ... he's been back in the hospital since Tuesday.

We're seeing much of the same problems as last time. Over the weekened we began to realize something wasn't right when his stomach becames very distended and he began to have pretty consistent blood in stools. Monday I tried getting appointments, but no luck until Tuesday afternoon, which was pretty much too late. Tuesday morning he suddenly spiked a fever and had trouble breathing. I packed the bags and went to the pediatrician appointment, figuring I had the appointment anyways and she could speed up the hospital admission process. Which she did do, but James helped speed it up too as he went into seizure/convulsion when I arrived at the hospital. Talk about a quick way to get a bed at Emerg. Within a minute he had a bed, his blood had been taken and an IV started.

Thankfully this time around James stabalized much quicker and his breathing did not get so out of control. By the next day he was LOOKING much better. His breathing was mostly good, to look at him he seemed well, but he continues to spike fever and has occasional boughts of irritability. He isn't allowed home until he is without fever for 24 hours. As much as we'd like to just wisk him home we want to stay so they can get closer to the bottom of the problem. Each time they try to tell us that a virus or something else has set off his LPI and he can't handle it. This is all fine and we know that this will occur often, but they've at this time never been able to prove he has a virus and this time when he came in he was healthy before hand ... the signs of trouble had been his tummy and the blood .... which seem to occur each time we came in. We're thankful that it is our own peditrician on call right now and she is in agreement with us that there seems to be something else going on in his body that keeps doing this, especially considering the fact that it's summer and not virus time.

He had a scope done of his inside bowel area as well as a biopsy of the tissues in this area. They were unable to do a full scope since it was done quickly and he wasn't completely "cleaned out". We are waiting for the results. I did overhear the doctors talking and it seems they may have found something as their was some coilitis (imflammation of the bowels) in this area. My pediatrician did not have the full information when I spoke to her next, except to give me a big name and said at that point she didn't really know what it was, how serious, how it was related, if it was related to the LPI or that the poor guy has two things going on. So we're waiting for further information on that and hope that this can help us figure out why he remains so unstable.

But on a good note, he did not lose weight again and is over 10kg (22lbs) now. The biggest he's ever been. All the doctors and nurses first commented on how he's put on weight and looks good, and how he seems to have grown up in the last couple weeks. He's also finally learning to walk, he'll need lots of practice yet as he's slow and wobbly ... but he's walking!!

I must get going, I actually desert my little guy and left him all by himself for the first time last night when I became sick. It's been years since I've had a bad fever, guess I needed one to be remind of how awful they are and what little James is going thru. So I've frozen and sweated last night and hopefully I'm thru that and can do my duties again today. I'll just have to take lots of Halls for my sore throat ... of the 5 admissions James has had, 3 I've picked up a cold (this being the worst) ... the joys of hanging out with the sick people.
Thank you for your continued prayers and support.