ICU

As I know you are waiting to hear how things went today I am hear to convey only what we know at this time, which doesn't seem to be a whole lot. 

 

We went into this Lavage with a different perspective then the last one.  Last time we were hoping for a cure, this time we were hoping for some answers.  So with that in mind it's hard to say whether there was any sucess.  Only time will tell us whether there are any answers, right now we just pray for stability in James' condition.

 

As we were told, this Lavage involved more risk then the last ones.  In the end they had to abort the procedure because James was deSATing and no longer stable.  They put 1100 ml in and were only able to get 60% of it out, leaving 440ml in his lungs.  From what we were told they got the same milky substance out of his lungs as previously, but it was thicker then the last lavages.  It's hard to say if this is for medical reasons or because of the technique they were using this time.  What they did remove from his lungs has been sent off for further testing, this time also looking at the lipids (fats) to try help determine the source of these.  Once again we are told that the substance removed from his lungs does not have the "classic" appearance of PAP.  This is not to say they do not believe he has PAP, we are confident he does, we are just unsure what else is going on in his lungs and how it all works together, if it does.

 

The endoscopy was also done and we were disappointed to hear that they did not find anything abnormal.  I suppose that's not the right thing to say.  It's good to hear that things appear normal, but unfortunately there was not an excess amount of mucas as we have been seeing, so we may not be getting any answers.  They did do biopsies and there is always the hope that this will provide some answers..  We were told that he only appeared to have very mild esophagitis (inflammation in the esophagus) which we would expect to be worse if he indeed had aspiration or even given his daily vomitting episodes.  The one thing they did note was that his stomach was oddly shaped and so they would like an ultrasound done to look at the surrounding body parts to see if that explains the different shape.  This could possibly just be because of his enlarged liver and spleen and they don't really see it as a concern.

 

They were unable to extubate James and so he was moved to ICU to be closer monitored and extubated (remove the ventilation tubes) when ready.  Upon first seeing him he appeared very relaxed, calm and comfortable ... much better then the time I seen him at Mac that way.  This did not last ...we were just going to head out to get some lunch when all that changed.  He began to cough and in turned deSATed badly and he would wake and fight the tubes.  It seemed something was blocking his tube and they worked hard to suction and stabalize him for some time, but his CO2 levels remained unstable.  It's amazing to see the quick response when needed.  At one point the nurse simply called out one name "Anne-Marie" and within seconds five people came flooding in the room, and then one says "Anne-Marie's on her way"  Two more people arrived before Anne-Marie (the doctor) did.  You get this feeling like you're watching a TV show as they all surround the bed and you're off to the side watching and unable to do anything.  But with time they were able to clear his airway and stabalize him again and  so far he's remained that way.  Once again they were shocked at how much profofol (aneasthetic) was needed to keep James asleep, he kept waking and they kept giving him shots of it and slowly increasing the consistant dosage.  The doctor said we (as in normal adults) would be sleeping sounding on this amount.  That's our James.

 

So at this time he is once again "stable" and we have to play the waiting game again.  In situations like this there is no way to estimate how long it will take before they can extubate him.  Patience is required!

Mind Overload

Well it seems my mind isn't functioning properly anymore after the doctors threw a new loop into things this morning, the sum of which brings no new information; it just revisits old information and brings back those old feelings of this summer ... of having to review and review all that happens and research and research and question and question, not simply because there are no answers, but more the issue of not being confident in the answers the doctors are giving ... and maybe things just won’t add up. Nothing makes any sense, everyone is stumped ... I feel like we're reliving the 5 weeks we spent at Mac this summer. There was such relief when we got answers when we first came here, like we were finally moving forward and could finally focus on the issue at hand. That has all been taken away again. I suppose it's been obvious for the last two weeks that there's more to this than we original thought, but there was always that small hope of the last few setbacks being resolvable.

This morning the Lung Specialist doing the procedure came in to say that after much thought yesterday he's not completely confident that PAP is the issue here. Further results from the previous lavage have come in, wrenching uncertainty into everything since these results are not supporting PAP to be the sole issue. This new information points to aspiration pneumonia (when food comes up and then goes into the lungs…see here and here for past discussions on this). We've been down this road before when they insisted James' problems were aspiration pneumonia and would not acknowledge results supporting PAP. (Philosophy buffs will note the fallacy of a false dichotomy). Although they are prepared to do another cleaning tomorrow, there is a possibility that after first viewing the lung with their camera, they may decide a lavage is not necessary and just take samples for further testing instead. This suspicion of aspiration has induced the talk of once again putting a j-tube back in, since this can help eliminate aspiration and help determine if this is an issue. Our notes on when the last one was in do not support their ideas at this time, but we'll deal more with that if the issue seriously arises.

The biggest issue that arises from this new thought is that since there isn’t a clear way to diagnose aspiration, it's mostly a guessing game involving trial and error. There are several tests that can be performed:
PH Probe:
o This involves a probe sitting in his esophagus for 24 hours, recording acid levels.
o previously done showing some reflux
Upper GI Series:
o a series of x-rays on stomach, capturing the operation of the stomach and its contents when food enters it
o this test has not been done
Swallow Test:
o A series of x-rays on his throat, capturing the operation of that little valve on the windpipe, to see if food leaks into the windpipe while swallowing.
o This was previously done, but showed nothing abnormal).

These can give an indication but are not very accurate at diagnosing, because he may not actually aspirate during the time the test is running. It’s like taking a picture of a family. They are all smiling when the shot is taken, but those smiles can be long gone before they leave the studio. We do know that James has at least a mild form of reflux (when food comes back up…think of persistent heart burn) or even possibly aspiration, but there have never been enough signs to indicated that it is a serious problem. I will not bother going any further in depth about all the arguments that can support or not support their thoughts; we'll wait to see what tomorrow brings.

Once again the doctors are thoroughly stumped and have no idea what to do or how to proceed. I think the big hope is that some magical answer will come from tomorrow’s procedures. The GI department heeded the final boarding call and is now adrift with everyone else, and will be performing an endoscopy tomorrow. However, due to James' C.Diff they do not feel a colonoscopy will give accurate information at this time, so it will have to wait until another time. With regards to the PICC Line, we are told it cannot be coordinated with the other procedures, likely it is performed in another section of the hospital, whatever the case at this time we're no longer sure if it's needed as we have stopped antibiotics and have no idea what we're dealing with anymore.


So although these are just their thoughts it gets our minds running again, going back over all the information we went through before. All the time we were at Mac and they tried to convince us this was his problem we could not agree with them and felt like we were constantly fighting with their one track thoughts. I hope that we don't find ourselves stuck in such a position again as there's no place to go anymore to ask for a second opinion. At the same time, we take great comfort knowing that we are at the best place we can be, and we can truly see the difference of Mac and Sick Kids. Sick Kids is a place where they truly want to learn, to understand, to research and try put the puzzles together. We did not get that feeling at Mac; there we felt like we were the ones who had to do the research and pushing for tests.

Today was a busy day, right from the moment I woke up ... boy do days like that fly by so much faster. I had a pleasant visit today with friends, but especially with a little guy named Matthew. James' home-nurse was one of the ones who came today and since she knows him fairly well I could leave James in her capable hands for awhile and go out for a walk and shopping with Matthew. Unfortunately I couldn't be gone long as we had a flood of doctors all morning and I was waiting for more for the afternoon. On top of that my mind was also busy thinking on a phone call Rob received this morning from the Faculty Office. It seems they have taken note of his situation and have offered that should he need to drop out, and with the proper medical documentation, they will refund him (usually you can only be refunded if you drop out within the first two weeks) with no consequences on his transcript. This leaves much to think about. He is 2/3 of the way through the semester, but is unable to fully concentrate and so his marks are suffering. It becomes a question of muddling through the next month or dropping out for this term, or this year and coming back next September. (Rob's editorial note here: If in September, when we debated what direction to go, if we knew then what we know now, the answer would have been obvious. But now, after putting all this work and effort into it, the scale isn't so clearly off balanced. Is it pride, or ambition, or the opposite; stewardship that desires to plod on. This reminds me of what a pilot told me when I asked if a twin engine plane could fly on a single engine. His reply was clear: "The remaining engine will take the plane to the crash site." If it is pride, I plod on to my own undoing. If it is stewardship, is the eject button ever not an option?)

And so I end another long-winded entry. We pray the Lord will guide the hands of the doctors tomorrow and most of all we continue to pray for answers. Maybe someday our minds will be able to rest from the constant medical information flowing through it, and find the mundane details of life refreshing.

O.R. Time

We have gotten O.R. time for Wednesday morning at 8 a.m.  The plan is to do the right lung on that day.

 

GI did not show up today ... what a surprise.  The nurse even paged and pestered them at the end of the day, but still no luck.  At this rate there is not much hope of having the endscopy done on Wednesday.

The Revised Plan

Monday mornings the entire team of Lung Specialists gather together to dicuss all inpatients so that all the doctors know what is going on. From what I'm told there was a rather lengthy discussion as to what to do with Mr. James.

48 Hours after starting back on the Gentamicin James is still having fevers. Last night and this morning he spiked high ones (40.6C/105.1F) immediately after vomitting. Unfortunately there's still no answers. The Gentamicin isn't working so that could mean these fevers are not infection related. At the same time there's a possibility he's built some resistance to the Gentamicin because he was just on it. So we still have are no further on putting the puzzle together.

The new plan is to stop all antibiotics. James technically should have been done the other antibiotic (Tazocin) yesterday but they continued it given the fevers and restart of Gentamicin. Since we're still dealing with fevers they've decided to just stop all antibiotics. The next move is a WLL. They hope to gain some insight from doing this as well as assist James by once again cleaning his lungs. They feel their tests will be better if he is not on antibiotics which many cover up things that are going on in the lungs.

This time when they do the WLL they plan to do it differently, going back to their original plan when he first arrived in Emerge over a month ago. (Click here to read the difference betweent he two techniques). All the talk we have heard has always indicated that they were quite happy and excited about the technnique they used last time, although as time went on they did admit that they didn't get a full seal when they went in to do the right lung. I have no idea if this could be a factor in todays problems as we aren't always told everything (information tends to slowly leak out here and there). When they came up with the technique they used last time they told us it would be less risky then their original plan. Since we're now going back to the original plan that also means there are more risks to this procedure as this technique makes it harder to keep the lung stable while washing. The only good side to this procedure is that it has been done several times by a collegue in France so they have more literature to support their plan. We realize that often we are kept in the dark on the greater details of these procedures. Before there was any plans for such a procedure they quite openly told us how risky it was, but when the time came to actually do the procedure they tried as best as possible to downplay everything.

Since we are stopping the antibiotics the PICC Line has been put on hold for the time being. They would like to get the results from the lavage before they decide if it is necessary, although there is feeling that it will still be ... likely to give long term antibiotics. Someone still came by today to go over the details of the PICC so that we are ready to go if one is needed.

We are waiting for GI to show their face. Since our original visit with them we have not seen them back ... maybe this is just the way GI people work since we had the same issues at Mac. We have finally gotten the Respiratory Team to realize that we have greater issues in James stomach then just swallowing a bit of phlegm from his lungs. James continues to ask to have the bubbles (air/gas) out of his stomach and has been quite uncomfortable the last few days. I am unable to get air out because all that comes out of his stomach is phlegm ... usually more phlegm them formula. Where did the formula go if all I'm getting out is phlegm? Yesterday I showed them what I had withdrawn from his G-tube just before they arrived. I had about 20ml of phlegm with a few streaks of formula in it. They were quite in agreement that he couldn't be swallowing that much from his lungs and something else is going on, but they have absolutely no idea what. PAP is an issue of the macrophages not working in the lungs ... but marcrophages are in other parts of the body as well and we wonder how they are functioning in those parts. We have requested an endoscopy (when they look inside the stomach) done while James has the lavage. We're not sure if this will really give any answers, but feel we won't get anywhere until they have a look. The Team is in agreement but GI is the one who has to put in the orders and do it, so we're waiting!!

So for the time being we try to control the fevers and wait for OR time, hoping that both the lavage and endoscopy can be coordinated for the same time in order to avoid additional aneasthetics.

Miscommunication

Well it seems there was some miscommunication between doctors and nurses yesterday. The orders were suppose to be that if James spiked another fever, which he did regularly each time the ibprophen wore off, they were suppose to order a blood culture and start him back on the Gentamicin antibiotic. Since I was not aware that this was the plan I couldn't remind them of it either. So these things did not happen until this morning. Early this morning James spiked a high fever of 40.2 (104.4) which meant they needed to call the resident. Thankfully we were able to get his fever down without any seizures (James has had temps in the the 41's/106 area before and has also had febrile seizures several times).

There is much regret from us as well as the doctors that we took James off the Gentamicin before the full 10 days that they originally planned. The doctors explained that 5 days is normal and when Infectious Control became in involved they felt we should just go the 5 days, whereas the Respiratory Team felt that the 10 days would be better due to the troubles they were having getting the infection under control and given the experience they have with other children who have respiratory problems. Whatever the arguments were, in the end Infectious Control won out ... likely due to the dangerous side effects that Gentamicin can have if given for a longer period of time. Had we just waited out the 10 days originally we would have given the medication ample time to prove itself. But now we're worse off because we have to start over and this time they want to give it for a longer term, likey 14 days. So in the end we haven't avoid the risks that come from longer use of the medication ... unless of course, stopping the Gentamicin is not the reason for the return of the fevers.

This plan is not written in stone though. Since the fever has resurfaced they have to once again go through the ruling out process of doing urine and stool tests, nose swabs and blood work. We're not really expecting anything from these, but they have to be done anyways. There is also the fact that the bigger plan still is to move forward to doing WLL's again with the hope this will provide some better answers, which in turn can change the antibiotic plan.

But with two more weeks of antibiotics in the plan we can expect we won't being going anywhere for at least two weeks, not that we really were expecting to anyways. We are now pushing to have PICC (a central line that runs up his arm and sits by his heart) put in, which the doctors are in agreement with now. Last time they said to wait as we could be done and home in a week. We weren't all to confident of this at that time, but the doctors get the final say. This time they agree with us ... altho techincally we'd like a PORT, but that comes with more chances of complication. We knew they wouldn't agree to a PORT, so we expected we'd have to settle for a PICC. Since this procedure involved having an aneasthetic it cannot be done on the weekend, but they will start the ball rolling on Monday ... hopefully it can be done before his IV needs to be replaced again and we have to try find a vein again. Not only does a PICC mean we won't have to search for places to put IV lines all the time (several of them have ended up in his feet, meaning he can't walk during those times), but they can also do bloodwork from the PICC Line so he won't have to be poked and prodded each time they have to do bloodwork, which they seem to love doing ... it a wonder the guy has any blood left. A PICC line lasts around 30 days, although there are cases where it lasts longer. The downside of a PICC is the fact that it comes with the risks of getting infected and whenever a fever is present they then have to wonder if it's the PICC and whether it needs to be pulled ... this is there biggest reason for not wanting to put a PORT in, the longer a central line is in the more risk of infection and James' has too many unexplained fevers. So these can both make life easier and more difficult.

Today James seems more effected by the fevers ... or whatever it is that is bothering him. Yesterday he was fine as long as he had the ibprophen in him, but today he's more miserable, has less energy and he has to work harder on his breathing. They did an x-ray yesterday but it didn't show any specific or obvious difference from the last x-ray taken over a week ago. Our poor strong little guy who keeps asking to go home. Whenever we have to give him something or do something we explain it's to help him get better and his reply is "doctors help me get better, doctors help me go home". If only we could have as much faith as he does in the doctors, but we know who to put our faith in truly and fully, the words would have so much more meaning and depth if they were "God help me get better, God help me go home".

What now?

6:00 a.m. James spiked a fever…



"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4: 6, 7



After six days of being fever free, we have taken another step backwards…a very big, heart aching step backwards. After a couple days of being able to tolerate slightly lower oxygen levels of around 1.5L, we're back up to the 2-2.5L area.

The question if whether this came because we dropped the Gentamicin medication on Wednesday arises. It's very well possible, but we won't ever know. The initial plan had been to administer Gentamicin for 10 days, but after some discussion between the Team and Infectious Control it was decided to change this to 5 days, which they say is still a normal treatment length for this medication. I don't know all the reasoning behind why they dropped it, for they did blood work often enough that there shouldn't have been an issue with the levels (Gentamicin is difficult on the kidney's). Maybe five more days would have done the trick, maybe the same thing would have happened at the end of ten days, maybe the fevers aren't from infection after all ... we really have no idea what we're dealing with. If only they had kept him on the Gentamicin, we wouldn’t face the as many question marks as we do now.

If only….

Whatever the reason, it's done now and we're back to fevers.

Yesterday we were told we would wait for the full 10 days of his remaining antibiotic to be completed (Sunday) and then wait to see if the fevers reappear. The idea was to be confident that we had gotten rid of the infection we assume he has. Once they’re confident that we're rid of that, they would be better able to evaluate and determine what's going on in his lungs to cause the increased oxygen levels again. So they admitted that they don't really think an infection is the issue here, they just want that out of the way before they try get to the heart of the issue. With this morning’s fever, everything changes again and now they have decided to go ahead and have a closer look at what's going on in his lungs. Originally I had thought they were thinking along the lines of doing a bronchoscopy – (a common procedure used to look at the lungs, do small biopsies, test fluids in the lungs, etc). But they have advised they are thinking of doing a WLL lavage again. They want to get more samples to test for infections again, and they feel that if they are going to go in, they might as well go in completely and do a “therapeutic" treatment as they called it. In some ways this seems logical, as a bronchoscopy isn't really going to help, it's just going to give them a chance to look, whereas they in the WLL they can look and treat at the same time. But we can't ignore the risks involved with a WLL. We've had two "successful" lavages in that we had no unexpected emergencies, but that doesn't mean the dangers are not there. At the same time since we're again at a (never ending) dead end road, there really isn't any other choices.

The words of Team Doctor when he left today were "we're trying". Those words were probably meant to encourage, but it also was said in such a way that it felt like they were admitting that we're really out of options, but we'll keep going as long as we have the opportunity to. More and more so lately I've been feeling the same way. Is this a losing battle? The WLL did seem to work, but hours later everything turned around. So maybe it's possible a WLL will work, but if his PAP is going to return so quickly and drastically anytime he has an infection then what hope do we have? I know the LORD can make anything possible, and we, with many others, keep praying that some day James will come home with healthier lungs. But at the same time we are fully aware that the LORD’s ways are higher than our ways, and He will answer our prayers, even if it is not how we would like them to be answered. We are prepared to accept that James may never come home, or if he does it may only be after they have said there is no more they can do for him. These are not easy things to accept, but they are not unrealistic.

This is not to say the doctors have truly given up though. I spoke to my Genetic Doctor yesterday who was very impressed with the work that has been going here, and with what the scientists are trying to do to learn more about PAP and how to treat it. They are currently experimenting in the lab how a cholesterol reducing medicine might inhibit the production of surfactant (the fluid which they washed out of James’ lungs), and from there they will decide whether to try it on James or not. How this will be administered, how long it will take, side effects, etc. we don’t know yet, since we have not sat down to thoroughly discuss it.

To understand what they are trying to achieve by the GM-CSF treatment and the cholesterol reducing treatment, think of what happens when taking a shower. You place a strainer in the drain so that a little bit of water stays in the bottom of the tub to keep your feet warm, but no more than that. But after a while, hair clogs the drain, and the water level rises. So you administer drain-o (GM-CSF) to help get rid of the water. This doesn’t work, so you reach down and lift the strainer so that all the water flushes away (WLL). But now the water is rising again, so you close the tap a little (cholesterol reducing medicine), and hopefully you’ll reach homeostasis. Whether James will ever reach that or not, well, that has yet to be seen. If it doesn’t, God will take him out of the tub, safely in His arms.

After all, He will take all of us out eventually.

However, for the majority it’s not until their skin is all wrinkly.


"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

Same Old

So it seems that I'm due for an update, but there's really nothing new to tell.

There hasn't really been any change since my last report. James is still fever free but we still are not seeing any changes in his oxygen levels. He has started on antibiotics for his c.diff. He is having some pain and discomfort from the c.diff ... or I'm assuming that's what's causing it. He had similar discomfort last time when they discovered he had c.diff and after a couple days of medication it settled down, so we'll hope for the same effect this time.

Monday night we started the GM-CSF inhaled treatment again. So far the reports from the lab are saying that this seems to be the only effective medication and so we hope this will encourage his macrophages to work again and in turn decrease his current oxygen needs.

Other then that it's just a waiting game. Originally they said they wanted to give the medication a week, but now it seems like they're going to wait out the full 10 days before making any decisions. Sometimes it is frustrating to sit around and wait for something that does not seem to be working anyways, but at the same time we remind ourselves of how different James is, how he never follows the books and how unknown his disease is. This reminds us to try and be patient as we would hate to rush into doing unnecessary procedures if time and patience is all that is needed.

Oh, and in case you noticed that the posts are being done in my name afterall and not Rob's ... I had a chance to look around blogger and found that I could set up it up so I could just send the post directly to the blog via e-mail. I remembered seeing it before and thinking "Why would I need that? If I can send e-mail then I have internet connection and can just post directly on the blog." Well I discovered that's not always the case and it's come in handy.

Half Minute of Fame

James decided to turn down his opportunity for 1/2 a minute of fame today.

 

James was referred to Public Affairs as a child for their current SickKids Foundation video, which can also be used for other public affairs, including on posters, webpages, etc.  They were just doing short little clips of kids smiling while receiving a SickKids Teddy.  Unfortunately James paniced when they came in the room ... "no pictures, no pictures" ... which turned into deSATing and then almost throwing up.  I couldn't get him to settle or convince him it was okay, so that was it for his chance of fame.

 

I asked the nurse how a child was "referred' and she said they probably just asked the head nurse for a cute kid.  There was one other one done on our Ward who was also considered "cute".  Compliment for our child, unfair for the not so cute children who spend just as much time here.

Over 72 Hours

Well it seems that the new antibiotics have been effective in getting rid of James' fevers. We of course are excited and hopeful about this, but as time keeps ticking our excitement lessens as we are not seeing any difference in his oxygen needs. Occasionally we can get him down to 1.5L, but most of the time he's at 2-2.5L

Sometimes it makes things more confusing when there is more then one department offering their opinion, other times it opens your eyes to reality and helps you to be more prepared. Infectious Control stopped by this morning. There were a couple things they had different opinions on, but the one that sticks out is the fact that they aren't so confident that an infection is James' problem. The fever has been controlled, so there may have been an infection, but by this time we should be seeing a decrease in oxygen levels. They also feel he looks to good to have an infection. So in their opinion there's probably two things going on, we've gotten the infection under control but the PAP is not under control.

This is a hard call to make and the Team feels given James' situation they think we should give the antibiotics a full week before we make any further decisions. Given that James' macrophages don't work well this makes sense as he could simply need more time for his lungs to recuperate. So Infectious Contrl makes us realize that a normal child would have improved by now, and the Team reminds us that James is not normal.

James' stool came back positive for C.Diff. Since C.Diff can come from antibiotics or if already there can be aggrevated by antibiotics, we have no idea if it was ever gone, although it's not likely. So he will be restarted on medication for that as well, hoping to tame down the current diarrhea due to the antibiotics he's on. This time he'll probably have to carry on the medication for about 10 days after the antibiotics are done, so this leaves use somewhat unable to further investigate his colitis and stomach issues at this time.

Well I enjoyed my time home and made sure I packed a big box with lots of projects to keep me busy over the next couple weeks so I don't have too much time to think about what I'm all missing. Rob has decided to have the girls home this week and see how that works out. (When he made this decision he didn't realize they have 3 days off this week). Since he dropped his Hebrew course he is now home by 3pm each day for when they come home from school. He'll give it a try and see how much it effects his study time. Even Rebecca, who's always asking who's house she gets to go to next, was excited when I told her she was staying home this week. Marietta has her ups and downs. She's usually okay when she's away, but has a hard time saying good-bye again at the end of the weekend. And Matthew doesn't even seem to realize what's going on, which I suppose is a good thing.

Almost 3 Months

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Since I won't be home when Matthew turns 3 months old (Thursday) I figured I'd better take a few pictures today. Usually I take them in to have their portraits done on their 3 month "birthday", but that won't be happening this week. So here's the latest on our little man.

The Last Two Weeks in Photo's

Enjoying a freezie after his first procedure. Once he had his fill and was no longer interested he decided to share his second one with Teddy.

Dr. James

One of his favourite toys is this backhoe which he loves to use to scoop up mega blocks, he now has an equally big dump truck which he likes to put the blocks in. Needless to say when he plays with these in his bed there isn't a whole lot of room left once they're both on the bed.

Family Time:

The window remains a favourite spot. The days he does get out of his bed he usaully spends some time looking down at the traffic below.

Colouring Time


Checking out the Photo Albums mom's been spending all her time on

James loves to play these two games - fishies and Bob the Builder. Bob the Builder is actually a memory game, but he's quite content to look at the pictures and put the pieces in the container.

Keeping Afloat

Rob has often regretted his decision to continue on with school. He immediatley fell behind at the beginning of the year while he was trying to help out extra at home. Once he decided to carry on with school he ceased with the extra help and began to focus fully on his school work. But once behind always behind and so it was a challange in a good situation to get caught up again, and then things took a worse turn. Missing several days of school and trying to concentrate when so many other things are going on has not worked well and so Rob has decided that in order to keep afloat he is going to need to drop his Hebrew course. If he can survive through the semester with only dropping this course he can either try to make up the lost credit next semester or during summer school, and therefore save from losing a whole school year. Neither of these are a favourable decision as he'll only be able to manage this next semester if everything goes completely smoothly and summer school is difficult on the work and family situation, him being home so little as it is when he's just working (never mind that James has spent the last two summers in the hospital). But we will have to cross those bridges when they come, for the time being he needs to keep his sanity right now. He is fortunate that the University has been understanding and has agreed to allow him to take Hebrew next semester, even though he will not be completing this semester.

As for James. He is doing quite well. We have now gone over 24 hours without a fever. Yesterday morning he still had a low grade fever, which he managed to fight off without any medication and since then he's been without fevers, although sometimes still borderline low-grade. This is exciting as it's an indication the medication is working, unfortunatley his oxygen needs remain at 2.5L, we haven't seen any improvement in this area, but we did not expect to so quickly either, so we are still optimistic.

Since I now enjoy going for a walk each day instead of spending time in the computer lab that means you see Rob's name at the end of more blog entries. Several times a day I manage to get a strong enough wireless connection from our room in order to send and receive e-mails, but usually not strong enough to be surfing and posting blogs (altho I've managed a few times). So if I can't post the blog myself I leave it in the outbox and hope they make it to Rob who in turn posts them for me. So in case you all thought my writing style had rubbed off on Rob, I'm can assure you they haven't ... you may even notice that they are more grammatically correct now since he now gets a chance to edit my babble before it hits the screen! :)

As for the comments I received on walking. Yes, that is Queen's Park north of the hospital, and it's only a few minutes walk. I have not yet taken a closer walk by it but just a walk-by as I try to see what's all around us. And thank's Amy for telling me the Eaton's Centre was that close. I knew it was a few blocks over, but thought it was a bit further of a walk. Yesterday I ventured that way, but I've never been too fond of shopping and since I'm trying to get exercise speeding walking in the mall or around Younge Street doesn't work very well. But at least I know it's not that far if I ever need anything. My dear hubby showed up for a surprise visit on Thursday night, we had an enjoyable time and he brought my jacket ... not that I've needed it so far, but now I have one should it be cold again.

After being gone for two weeks I get to sleep in my own bed again tonight and enjoy the company of my children tomorrow, especially Matthew who I have not seen for two weeks now. It's a strange feeling when it feels more like you are babysitting someones child then that it's actually your own child. I look forward to the day when we can get to know each other again.

Infection? PAP? or Both?

Well just as I was about to head downstairs to post the last entry, our Lung Specialist stopped by. We have not seen her since the last lavage. As an inpatient you are followed by the "Team", who consults with your doctor if necessary. Today she stopped by to discuss a few things, mostly when we should restart his GM-CSF treatment as he has now been off of it for over a week. They have decided to wait until Monday as we just started new antibiotics and don't want to throw too much into the equation.

She did not have a huge update on the work the scientist is doing, but what she did bring was not the most encouraging. So far, they have determined that the macrophages (which are cells) in James' lung show to either not work or not work to capacity. (Check here for how macrophages work. If you can, watch the video that's near the bottom. Amazing!)So, some do work, but not as good as they should. This in itself is nothing new and just confirms and supports the PAP diagnosis. The problem is that you need macrophages to fight infection. Which brings us full circle to todays problem. Is this problem indeed more a PAP issue then an infection issue? Are we unable to get rid of the infection because his macrophages are not doing their job? Is the PAP progressivley out of control because of this? This theory is supported by the increasing amount of foamy phelgm we are getting from his stomach, something which the doctors are no longer ignoring, but have come around to see it as a factor in the equation.

How do we get the macrophages to work? Sometimes a WLL is enough to get them up and going again ... so far we have been shown no reason to believe that this has been the case for James. The only other known way is to provide GM-CSF to the macrophages, but it is such a challenge to do this. We have been using the inhaled treatment. The other method is done by injection into the blood stream, which then works through the bone marrow, back to the blood stream, and delivered to the lungs. But this also causes more white cells to be produced, which in turns causes more problems in the lungs. So this way usually carries too many negative side effects for PAP. The question still remains whether the inhalation method will do anything, since it did not help before. But at the same time we can't give up on it just yet as we hope by removing the worst of the buildup we will create an environment where the GM-CSF can stay on top of whatever new build-up develops. Therefore we will restart GM-CSF on Monday, hoping it will indeed work better this time around.

A quick summary:

1. GM-CSF treatment is needed to to get the macrophages to function properly.
2. Macrophages are needed to fight infection
3. Infection of some sort is present.
4. Will GM-CSF treatment work?

The scary question is: If the GM-SCF treatment is unsuccesfull.... are we fighting a losing battle? There is no answer to this question right now. But we do know that if we remain focused, with our blinders on, regarding the achievements and limitations of man and his science, the question can be haunting. But we can lift up our hearts where Christ is seated at the right hand and majesty of God. It is here that we find rest, and hope.

What's another 10 days?

*sigh* :(

Today they came by to take bloodwork before and after they administer James' Gentamicin antibiotic (he's on two new ones) to determine if the dose is appropriate. This caused a little lightbulb to go on.

• If they need to watch the antibiotic that closely can it be given orally so we can be home??
• The answer: NO.
• And how many days do they administer these antibiotics?
• 10 days.

Given James does not have a PICC or PORT (something we are reconsidering ... see here,and here for previous thoughts on this) he can't go home with an IV. A PICC could be put in, but they basically said they did not think he was a candidate for going home. The nurse said they don't usually send home people on Gentamicin. The doctors said they would discuss these things further next week if these new antibiotics actually work, but at this time it's quite apparent that whether they work or not, we will not be going home anytime soon.

The stool test for c.diff did not work and they have to redo it. So we'll have to wait a couple more days for that. In itself we're not too majorly concerned, although the result does stand in the way of some of our other concerns. As I've mentioned before we find ourselves venting James excessively; we're also finding we get mucas or foamy phlegm (similar to what's in his lungs) out of his g-tube when he vents. At night or first thing in the morning I open his tube for a period of time to see what we get out on an empty stomach. In a 10 minute period this morning I got over 15mls of foamy phlegm. This leaves several questions. It's possible that he is swallowing some of the stuff in his lungs, which is not uncommon ... but if his lungs are supposedly relatively clean of the PAP why are we still getting so much "foam" out of his stomach? Is it possible that he's not actually swallowing this stuff but that because of the inbalance in his body he's producing it in his stomach?(???) The doctors have said this doesn't happen, so it's from the lungs. So why does James have so much mucas in his diapers? All this time we've thought his colitis isn't under control and have been working with his formula to try help. So what is it, his colitis out of control, or is this mucas coming from his stomach which is coming from his lungs?

How can we hopefully find some answers? By doing an endoscopy and/or colonoscopy. The problem is that c.diff causes colitis to flare up, so if we were to do such a test now and his colitis is flared up we would not know if this is from the c.diff or if it's been that way for a long time. So we have to wait until we have a clean stool that clears him of having c.diff and then we can consider doing such tests. At the same time we're not all that eager to put James out again just for the sake of these tests. It would be good to have the answers, but not really going to make a huge difference in his treatment. This is something we'd be more interested in lining up so that if he requires an aneasthetic for any reason in the future we can coordinate it all to be done at the same time.

New Medication

I once again do not really have anything new to report. The Infection Control peoples decided that we needed to wait a full three days to give the medication a try, even though it was obvious that it wasn't working. Yesterday afternoon made three full days, but do you think they bother to reevalute at the end of the day? Nope, what's another 12 hours, obviously they aren't the one sick or waiting to get out of this place.

Last night at 6pm, 1am and this morning at 7am he again had high fevers. His oxygen requirements were up to 3L at some points during the night since coughing fits made him deSAT. So they could no longer argue to give the medication a chance, if it wasn't obvious enough before it certainly was now that it was not working. This morning they ordered to have his antibiotics changed, unfortunately his IV came out during the night and by time they actually got around to putting a new IV in it was late morning. So he is now running on new antibiotics which they say they have to give 3-4 days chance before making any further decisions. Let us pray no further decisions are needed but that this is the answer. Whatever the case we can expect to be here for the weekend.

James himself continue to do amazing through everything. Ibprophen does the trick to bring the temperatures down. Although awake quite a few times last night he quickly fell asleep when he realized mom was there to hold his hand. During the day he lays around when not feeling well and enjoys life when feeling better. Most days he spends some time sitting in the window watching the cars, or finds it a thrill just to sit on mommy's bed instead of his own. Just give him a new toy every now and then and he's happy and content. What a blessing to have such a easy, adaptable, loving child.

I discovered that I picked a bad day to try the great outdoors, yesterday and today have been much better. After two weeks of hanging around here I'm beginning to feel the effects of doing nothing all day and since I have no idea how much longer this is going to be I've begun to make a point of getting a bit more exercie (yes, walk the stairs instead of the elevators, it's only seven floors :) and am trying to get outside for a view of the city one direction or another each day. So far all I've discovered is that there's no interesting or useful places around here! :)

Still the Same

It appears we are not making any progress on James' current situation. James himself has perked up a bit over the last couple days, appearing more energetic and himself, but as soon as the ibprophen wears off the fever seems to set in again. Over the last couple days we have not seen high fevers, but just mediocre ones, but he continues to be on at least 2L of oxgyen. So although he himself looks better he is not actually getting better.

This mornings x-ray showed the right lung to be about the same and the left lung to be worse. So it seems the infection has spread from the right to the left, which is to be expected. James is currently on a broad spectrum antibiotic which is meant to kill the bacteria that was found during his lavage as well as hopefully kill anything else in his lungs. Since this antibiotic is not working it is assumed that it is not this bacteria that is causing the infection but something else must be going on. The Respiratory Team's plan is to change to an even broader spectrum antibiotic to hopefully kill whatever could be in the lungs. At the same time they have called Infectious Control in to evaluate what they are doing and offer any adviced on what to give him now. We meet with them this morning to go over things and they have the same plan as the Respiratory Team. So we will be starting with a new antibiotic and if this doesn't work then we will need to do another bronchoscopy to once again clean his lungs and test what is in it to help them understand how to treat him. They have mentioned that there is a slight chance that this is his PAP at work, although nobody really seems to believe that this would be the case as it has never been seen to progress so rapidly. So, we are praying that this new antibiotic does the trick.

We still have not received the results of his stool test checking for C.Diff, but his stools have been good the last few days, so we no longer think that this is an issue. Whatever the case, it would not be causing the current problem.

Yesterday I decided to take a walk outside and get some fresh air while James napped. Usually I spend that time at the computer, but did not need to yesterday. My bright and fresh idea was cut short when I stepped outside and was reminded of how the world and the seasons keep on ticking even when we live in our small little world. Apparently a person needs to wear socks and shoes now, and long sleeves would be good ... and a jacket definitely helps!! :) Funny how I write the date every day, but it doesn't seem to mean anything. As I looked around and seen the flowers still blooming I realized that it's warmer then normal and here I was suprised as the last time I was outside it was shorts weather. And seeing as I don't have a jacket here, looks like I won't be taking any walks afterall ... maybe if I jog I won't need a jacket! :) So I hope you're all enjoying the lovely weather out there ... fall has always been my favourite time of year ... I can't wait to get out of here and have my opportunity to dress appropriate and go out and enjoy the refreshing air.

No Real Change

Today hasn't brought a whole lot of change to James' condition, but since we have many faithful readers who are as anxious as we are about progress, we provide this update. James continues to be on about 2L or oxygen and spikes fevers throughout the day and night. Tylenol and Ibprophen give him some perkier times where he feels up to playing and chattering.

They did a nose swab today which came back negative, indicating that he does not have an upper respiratory infection/virus. When he had another fever spike this afternoon they ordered a blood culture to be done to look for other types of viruses or issues that could be causing the fevers. We have not received the results from this yet (and don't really expect it will tell us much more). He has been on IV antibiotics for 24 hours now but has not really improved, so the results from this blood work may determine whether to increase the amount of antibiotic they are giving him or not.

James' sore throat seems to be gone, or at least it doesn't sound bad anymore. Instead he now has a very chesty cough, which is in line with the inflammation which the x-rays show. He continues to vomit at least once a day and we don't know why this is. It could simply be because of phlegm when coughing, causing him to gag and then vomit. He has not had his GM-CSF treatment since last Tuesday, which suggests that the treatment itself is not the direct cause of his vomiting; we have always assumed that the loose phlegm (due to the treatment) was the reason for his vomiting.

James also continues to require a lot of venting to get the air out of his stomach. This again could be because of his increased oxygen needs, but there may be other reason for this. We have been getting a lot of phlegm out of his g-tube when we vent him, so we wonder how much this is backing up his system. Since we are still waiting for the C. Diff results we don't know if that's still a factor. GI has also suggested that sometimes the digestion of food can cause gas (e.g. a person who is allergic/intolerant to milk can become bloated) ... so if it continues we'll have to take a closer look at his formula. But yet, he never had this before, and he’s been on this formula for a while now. At nights we leave his g-tube open to let his stomach drain and we've been seeing huge chunks of phlegm coming out of his stomach. We always knew that he was getting stringy phlegm similar to what is in his lungs coming out of his stomach, but we've never really seen chunks before. Hopefully this is just because of the procedures and will settle within a few days.

They have decided to hold off on the CT scan for a couple weeks until his right lung has fully recuperated. Doing a scan now would give false results of how effective the lavage was.

Grrrr: They took blood (again) while he spiked a fever, and tested all other things but what they specifically took blood for in his fever. So now they're back again for more!! (Did I say Grrrr?? Let me clear my throat......GRRRR. Thats better.)

So for the time being we’re still bumming around here, waiting for things to settle down and improve.

At Bedtime

Tylenol and Ibprophen has helped James perk up a bit. He was more himself when Daddy and his sisters came to visit this afternoon. At least he was able to enjoy the visit. As soon as they left he had to go down for another x-ray. By time he was done with that you could tell he was drained. He took a nap until they woke him up to do blood work again and replace the IV line he had lost a few hours earlier.

The doctors came just after lunch and said they were hearing crackles in his right lung which they had not heard yesterday plus they were concerned about his increased O2 needs again and therefore they sent him for another x-ray. The x-ray came back looking worse then yesterday indicating that there is definitely something going on. This doesn’t tell them whether it’s viral or bacterial, but he has been started on an antibiotic and if that helps we’ll have to assume it was bacterial. They had wanted to also give him a medication which would assist in getting rid of any fluid in the lungs, but after looking at the x-ray they feel the problem is more a virus or infection then fluid. We are still waiting for the results of the stool we sent off testing for C.Diff (and other bacterias as well)

This evening I had to again increase his O2 up to 2L for a period of time, but thankfully we’ve since be able to get it back down to 1L . His heartrate was also hanging in the 170-180’s (110 is a high normal for a child his age, 140 is normal for James), hopefully this is only because of the fevers. Once James seems to be stable and improving they will consider doing a CT Scan, doing a scan now would give us a false indication of the lavage results, so they may want to wait a bit before they go ahead with that plan now.

The bright side of all of this is that it looks to be some sort of virus or infection causing the problems and we can still pray that the lavage truly did a good job and his O2 needs will decrease drastically once this is under control. His cough and hoarse throat have also improved greatly today.

More Detailed Update

When Rob said that James is not doing any better then yesterday (Friday) he did not explain really what that meant. Friday evening after the procedure James woke up from a short nap and started a “coughing fit” because he couldn’t breath. Although he did not present the normal sign/sound they are looking for when your airway is restricted they proceeded to give him a dose of Epinephrine via mask and a dose of Dexamethasone via IV. Since both were given at the same time it’s hard to say which one did the trick. James absolutely hates to have a mask put on his face and goes somewhat beserk when he sees one coming. Rob had to put some effort into restraining his hands while I held the mask in place. It took a bit for him to just calm down from the whole mask procedure, so by that time we don’t know if the Dexamethasone had kicked in or the mask treatment had done the trick. Regardless he did better the rest of the night, just having a few smaller coughing fits. He did not sleep well and could be heard saying “no mask, no mask” as he rolled around in his sleep.

Yesterday he was definitely under the weather, fighting a fever and have occasional coughing fits again. He would get to the point where they would call the doctors in and then by time the doctor actually arrived each time he had settled down enough to wait it out. At one point we did try a new mask treatment called Atrovent, but it had no effect whatsoever. This time I gave it through his mouthpiece and told him it was treatment time. He wasn’t all too happy about this but did cooperate and we did get it in him. Blood work yesterday showed his white cell count to be fine, so there is no indication of an infection. It also showed his potassium levels low and borderline of greater concern (and from what I understand if these levels are low it causes troubles with your heart). So they readjusted his IV. He also was not able to get much of his feed in so they had to readjust his IV again to make sure he wasn’t going to run into any problems metabolically.

Last night we had to turn his O2 up to 1L and even on that he is only SATing 93/94%. This is discouraging as yesterday he was on 0.5L all day and throughout his coughing fits and/or rough breathing he was still able to hold good SATs most of the time.

He continues to have fevers. Also his belly has been hard and distended. We’re trying a new venting system called a Farrell Valve which is set up with his feeding bag and suppose to relieve pressure during feeding. So far I can’t see any real results from it and I’m still venting him myself throughout the day. We’ve also been leaving his G-tube open during the middle of the night after his system has absorbed his feed and we’re getting chunks of phlegm out of his system that way. We’re not sure how much this phlegm is affecting his gut and how he feels overall. Even though we’ve been faithfully venting and using this pressure relief system he still passes some pretty strong gas. They sent away for a retest of his c. diff yesterday, as that also can cause excessive gas. We should get the results today or tomorrow.

The doctors had hoped he would look better today. It is not uncommon to have fevers for the first 24 hours after an anaesthetic, but he is past that stage now and they have to start wondering if something else is going on. The famous suggestion: he picked up a virus. So today they’ll do a nose swab for viruses. They’ll be giving him a shot of potassium and then later today checking his blood again. They want him to be feeling better before they do a CT Scan, so they’ll put in a request for one but likely it won’t be tomorrow unless he makes some major changes today. At the same time it’s highly unlike he’ll go home tomorrow unless there is major improvement and stability by the end of today. Tuesday will be the earliest and even that is somewhat questionable. *sigh*

Downhill

James has not improved much since yesterday. His cough is oh so ragged! It seems that there is still a fair amount of swelling in his wind pipe, for his breathing is still quite laboured. He has had a few doses of Dexamethasone to counter the swelling, but he may need some more tonight yet. (As an aside, I had the privilege of administering Dexamethasone to a sow back on the farm with fantastic results: she went from lame to running overnight...just too bad for me that I left her loose in the aisle). The X-ray he had this morning did not show as wonderful of a cleaning as on his left lung, but this may be to the extra fluid that couldn't be extracted. He's still SATing 95-96% on 0.5L of O2, but is not able to go without yet. We are still waiting to get a Low-Flow valve for his O2, since the one he is on only goes as low as 0.5L, but it seems to be a rare commodity. Although they wanted to do a CT scan in a couple weeks to get a "clean" picture on file, they are trying to get this done on Monday already, and we're thinking because the X-ray wasn't that great. James has had higher fevers today (over 39 C), and did not subside significantly with Tylenol nor Advil.

So all in all, James isn't out of the woods yet. This is somewhat of a let down, but after all he went through this week, it is to be expected. It's just that he did so well after the 1st one...

I sign of wishing you all a blessed Sunday. May we all be nourished by God's Word, that we may continue to examine our lives by it, and more and more realize what an unmerrited gift of grace we have received.

WLL # 2

Hi all

With thankfulness and awe of our Master Physician I may report that they were able to do the lavage on James' right lung today, and that he is out of the O.R. recovery room and is in the Observation room on 7th floor for the night. We were not able to speak with the Dr or Anethesist (sp?) since they were whisked away somewhere else. However, the nurse read the report, and said they only needed 1.8L of Saline to do the job (as opposed to 2.2 for the left). This adds up, since the right was not as bad as the left and would not require as many rinses. However, they were not able to extract 300 mL of the Saline. They say that this will be absorbed into the body within 24-48 hours, and is not really a great concern. He will have an X-ray done tomorrow to view the success of the procedure.

James is doing relatively well at the moment, (even though he did not come out of recovery as cheerful as on Wednesday) and is only on 1L of O2 and SATing 96%. This is really good. On Wednesday at this time he need 1.5, and was 0.5 by the next day. So if this holds up, we hope to see him at 0.0L of O2 by tomorrow some time. This is optimistic on our end, but I don't think unrealistic.

It appears that the C-Diff is not under control, but we cant know if this is all because of being NPO (off feed), missing a couple of doses and being sedated, or what. By Monday he should be settled enough and they will re-test.

We are indebted to all of you who have pulled together with us and for us in prayer, encouragement, and support. In all this it is humbling to experience that neither God nor His people have forgotten us. This too is a witness of your faith.

Until next time....

Tomorrow

Psalm 89:1 "I will sing of the LORD's great love forever; with my mouth I will make your faithfulness known through all generations"

How gracious our God had been!

Ever since July when James was diagnosed and we were made aware of the risks of doing a WLL on an adult, and the greater risk of doing it on such a small child we have dreaded the day we would hear that James needed a WLL. As time went on and we realized that we had no other choice we began to accept this as we could not bear to see him slowly suffering more and more. I cannot even begin to express what a sense of relief it was yesterday for everything to go well. Not just well, but SO well. We of course don't know all that has gone on behind the scenes or what they are not telling us, but the doctors almost make it sound like it was all a breeze. We know it wasn't, for we also know that they had to work hard to get a Team together who was willing to attempt the procedure.

James is doing wonderful. We cannot get over how he woke up from the procedure, it was just like he took a little nap. I am used to a screaming, upset, cranky, irritable child after anesthetic so this was totally unexpected but very welcomed. James spent the night in the observation room and did wonderful. He slept well with no deSATs. This morning he was moved back to his room again. He is currently running on about 0.5L of oxygen and SATing around 96% on that ... a definite improvement. They were extremely happy with how his x-ray looked this morning. We have held off on doing James' GM-CSF treatment until he is feeling better, he has a really sore throat now from the tubes being put down it. They expect to get some result back today on fluids that were taken out of his lungs to be tested for infection. It will probably be next week before we get results on the surfactant that was sent to the scientist to evaluate how it reacts to the treatment he is currently on.

So what does the title mean. No, it does not mean we're going home tomorrow. Tomorrow we will head back down to the O.R. to clean out his right lung. Our doctor put in a requisition for O.R. time and was told there is a cancellation tomorrow morning and it's ours if we want it. They feel he is doing well enough to go, clinically he is doing better then when he went down yesterday. The only thing I was concered about was his throat. It sounds awful and he has an extremely hoarse cough, I was concerned the swelling would make it difficult for them to put the tubes back down. They advised that they can give him a medication to reduce the inflammation and if they really felt it was too bad to proceed they would stop. Getting O.R. so quickly is amazing and having the entire special team available again tomorrow is even more amazing so there doesn't seem to be any reason to hold us back.

I pray that they, as well as us, are not getting overconfident. They have decided not to book ICU this time, so we won't have to worry about a cancellation due to that. I keep reminding myself that just because yesterday went so well doesn't mean tomorrow will be the same. They have advised us tomorrow should be better and easier then yesterday. For one, he is that much healthier. His left lung will have to do the work and it's in much better shape. It is also easier to put the tube into the right lung to clean it, so the procedure itself should be easier as well. We pray that our Heavenly Father will once again guide the work they are doing and that we do not become confident in the hands of man but remember who is in control. We know that we will be more relaxed and less anxious tomorrow then yesterday, but we continue to remind ourselves that things can still go wrong, just like they could have last time. But oh, how nice it will be to have it all done.

If things go as well tomorrow as they did yesterday then they hope to discharge us on Monday. Yah!! I am thankful for this going so quickly as I was dreading having to hang around here until next week, or being discharged and having to come back ... that would have been worse. At least we are settle here now, back and forth is harder on the family and on James. There are great advantages to having this done as inpatient also. If he had to come back as an outpatient who was later admitted we would not have a room here anymore. That would mean hanging out in the O.R. waiting room before hand (you have to be there two hours before your procedure and who knows how much it will be delayed). It would mean repacking and having to drag everything in again. It would mean that I would not have a room to sleep in if he is in Observation. Last night I had my own private room since they left it for James to come back to today. The C.Diff has been handy also (if you want to look at it that way). Because James has C.Diff he goes into isolations rooms before going to OR and after in the recovery room. Normally only one parent goes into the recovery room but since we have our own private room both Rob and I were able to go yesterday. Not that it really matter as he was so calm and collected anyways.

So, that's my story for today. More again tomorrow!! :) We continue to covet your prayers.

Galatian 6:2 "Carry each other's burdens, and in this way you will fulfill the law of Christ."

Success!?!?

Only time will tell us whether today was completely successful but at this point everything went amazing well. I am so thankful to be able to pass along a "happy report".

Our doctor came out of O.R. with a huge smile on her face, a smile that told us she was happy with how things went ... and indeed she was. She said things could not have gone better. It took them an hour to get the tubes into place, but once they were the lavage went well. They put 2190ml in his left lung and were able to suck back out 2100ml, the lung will absorb the remaining 90ml. The initial stuff they sucked out with thick and white, like we have been seeing him throw up and coming out of his g-tube, but by the end they were getting pretty clear liquid back out of his lungs.

Whether this will cure James we obvious don't know, but it will definitely helped his lung and we have seen that already. They were able to take him off the ventilator and by time we got to the recovery room he was calm and collect and asking over and over for juice. Unfortunately he had to wait another two hours, at which point he goobled up an entire freezie and asked for another. Not a major accomplishment for most children, but for James who never takes more then one small zip out of cup this is a lot for him to take in at one time.

By time we left recovery he was SATing 98% on 1.5L, he was chipper and happy, his colour had come back and he looked great. He came back up to the ward doing better then when he went down, but they have put him in the Observation Room for the night. I'm not sure if that plan will last or whether they will change their mind once they see how well he is doing, we'll see as time goes on.

We are so thankful that all went so well today, we know who we need to thank for this and we continue to stand in awe at our Heavenly Father's loving care.

At this time we do not know what the next days will bring, we pray this good is not the calm before the storm, but things look extremely positive right now. As we see how he recuperates they will decide when to do the next lung. They have suggested next week, but if he needs more time probably in two weeks time.

O.R.

James left us for the OR room at 8:10 this morning. They told us they thought this new technique would take less time. They had the OR booked from 8am-11am, but figured it would only take two hours. At 10:10am we received a brief update that all is going well so far, but it sounds like they had only started to actually do the cleaning. They were just taking the first sample over to the scientist who will be studying it. They advised they figured it would probably take another two hours.

After he comes out of OR he will be in recovery for 2-4 hours. They will determine when they are done whether it is safe to take him off of ventilation on whether he will need to stay intubated and go to the ICU.

We will update when opportunity arises again. Thank you for all your prayers.

James and Family

After our Lung Specialist appointment on September 14 we realized that James was going to need to have a WLL done at some point. At that time we did not realize how soon it would be. One thing we decided was that we wanted to have photos done before the procedure, updated photos of James and updated family photos. I was still thinking about when and where when we received a lovely offer from Tobi Bos Photography (and her blog). To follow are some of the pictures she did for us. As you can see a couple of them have already been displayed on the new and updated blog look (which I must give credit to Rob for).

And since this computer is soooooooooooooo slow and my time limited ... I will have to save more for another day.

Thank you Tobi!!

A New Technique

I didn't think I would bother with an entry today as there was not much new to say, but on my way downstairs I ran into our Lung Specialist. I guess the past week gave her some more time to think and do research and they have now decided to do a different approach then what they would have done had they done the procedure a week ago.

The original plan was to do a very extensive broncoscopy. Using a bronchial tube they would go down into the lung and wash section by section. There are some reports of sucess doing this and others have been unsuccessful in getting the lung completely clean. She was concern about this and also felt this partial washing would be harder on the blood circulation in the lung then the new technique she hopes to use. In an adult Whole Lung Lavage (WLL) they use what's called a double lumen endotracheal tube. I won't pretend that I completely understand how it works, but I do know that this is when two tubes are connected together allowing them to use one ventilation system while going into each lung at the same time. These tubes have cuffs at the end allowing it to block off a lung if necessary. How the washing is done using this I am not completely sure, but I think it means that they would pour the saline water down one side and ventilate the other side. Whatever the case these are too large for children.

I guess our doctor began to think about how we were going to be putting two tubes down, one to ventilate and then the broncoscopy tube, so she wondered why we could put two single lumen tubes down instead. This would mean that they have to have two ventilation systems running. So over the past week she did lots of research and feels that they could do this. The advantage of the lumen tubes is that they have cuffs on the end, allowing them to completely block off one or another lung. Using this technique they will test which lung seems strongest and proceed to clean out the weaker on, which at this time they believe is the left side judging by the CT Scan. The main advantage of taking this approach is that we will then be able to actually do a WLL instead of just a Partial Lavage as was planned last week. Because of how the lungs function (which I also don't completely understand) she feels that this would be an even safer route as it will prevent the lung from having to go through big blood circulation issues with each partial wash. So she is confident that this a better route.

Of course my question was ... if this seems to make so much more sense and seems to be a safer route then why have they not done it before? She could not answer this, but felt part of it could be the technology advances we have in recent years where they have smaller tubes that have cuffs on them, therefore now allowing such a technique.

In the end there is not much choice to make. We fully realize that we have no real choice and that we have to put our faith and trust in the Lord to guide the doctors in the right direction. On the other hand, can we be thankful for this extra week of waiting? this extra week to make the doctors think and possibly come to a better result? Only time will tell and we pray that that time will come tomorrow as schedule.

When I ran into our Lung Specialist she was just on her way back up from the ICU. She had scoped out the place and feels that unless something major happens we should be able to move ahead tomorrow. She advised that she has also spoken to the ICU Centre about using an ECMO (extracorporeal membrane oxygenation) system if this technique does not work. This is when they put both the heart and the lungs on by-pass. We often hear of heart by-pass, but this is a step further and this means it involves even further risks. I have not had much time to read on it yet and hope that I will not need to. This is not something that would happen immediately but only after much consideration if we find out that tomorrows treatment is not effective.

We thank you all for your continual prayers. Please pray that the procedure may go ahead tomorrow. Please pray for the doctors and the work that they will be doing that it may be safe and effective. And once again, please pray that whatever the outcome we may accept this as the Lord's will.

Wednesday Morning ... Maybe

At this time we have been informed that James is scheduled in the OR on Wednesday morning at 8a.m. This of course once again hinges on whether there is a bed available in the ICU. So as it stands now we will be in hospital almost two weeks before the possibility of the lavage taking place.

On the positive side: this time in hospital may not be good for the family, but it is good for James. The low activity level is what is keeping him stable. We definitely seen this on Friday when Rob and the girls came again with my parents as well. James wanted to join the rest of us on the couch and looking out the window. Just the simple move from his bed to the couch made him deSAT and his heart rate sour. We also allowed him to sit in the window in his room for a bit before we forced him back into bed since his oxygen requirements had gone up a litre and his heart rate wasn't settling. During this time he didn't even do any walking, he was simply sitting, fooling around a bit and getting more excited because of the change in the scenery and entertainment.

James' "owee's" seem to have improved, so if it stays that way then we're figuring it was likely some discomfort due to the C. Diff. It looks like he is slowly on the mend in the C. Diff area as his stools are beginning to head back in the "normal" direction. GI did a change to his formula yesterday, just adjusting the amounts of the three formulas he's already getting. It will be hard to gage any initial effects of this change as we're still dealing with the C. Diff right now. GI has also talked about doing a Calorimetery test. In this test they measure the calories your body burns when resting and then use that figure to estimate what you would burn doing other activities. When I read about the test I get a pretty strong feeling that James is not going to cooperate for this one ... and he definitely won't be resting when it's done, so I'm not sure it will be of any use.

So for now it looks like we're just "hanging out" for the next few days, waiting, hoping and praying that everything will go through on Wednesday. Rob has taken over my post for the day, and I'm home with the kids. Later today we'll spend some time together again before I take up my position again and the others go back home and from there get "disbursed" to their new homes for the week.