Darkness

It seems we are once again being left in the dark ... for some reason doctors seem to like to do this when they're dealing with unknowns and uncertainties

 

We had a really good nurse yesterday who made sure Rob was able to listen and ask questions during rounds (they do it outside the room and since the door is closed you may miss that they are there).

 

During rounds it came up that they may not extubate (remove the ventilation tubes) todoay as there is talk of doing an Open Lung Biopsy today.  This is news to us and had Rob not been there it would appear as though they weren't planning to tell us anytime soon ... maybe like two minutes before the procedure so we could sign the consent forms!?!?

 

Unfortunately I do not have internet service right now (this will just be left in the window until a connection picks up and posts this).  This means I am unable to provide a link to further explain what this is.  This also means that I am unable to do my own research at this time, and since it has been months since this was last brought up it would be really nice to read on it. Hopefully we'll get a chance before they make up their mind.  If you are interested you can read more in it by typing Open Lung Biopsy in the search line of the blog as I know this has previous been discussed on the blog.

 

Off the top of my head:  This is not a small procedure when it comes to talking about biopsies, otherwise this would have been done long ago.  The procedure involved cutting through the side of his chest to access the lung from the outside.  I do not remember why it is that they need outside access, I just remember the procedure was not nice and carried risks, the biggest including lung collapse. 

 

We are not against having this done and recently I've been thinking we should start asking why this is not being considered, given the complexity of his sutation.  At the same time we are thankful to see this has not been quickly push for.  A biopsy can give much better information and answers.  But I'm guessing it's like most tests - if you don't know what you're looking for and you don't order the exact tests to find what you are looking for the answer could still be missed.

 

Our issue now is the fact that we aren't being told what's going on and the fact that we don't feel he is strong enough for this at this point.  The ICU doctor seemed somewhat in agreement with us on this one and said they (the Respiratory Doctors) would have to have some pretty strong reason before they would allow it to go ahead.  Our biggest questions are why now?  why suddenly two days after his procedure?  why was this not done two days ago instead of another lavage?  have they found something to warrant this?  or did they not find anything and the procedure left them so confused they feel it nessecary?  being Lung Specialist they should realize the state of his lungs right now, so why do they think this is necessary at this point instead of letting him recuperate better?

 

We have a feeling this won't happen today seeing as ICU wasn't totally in favour of the idea, but it has kept our senses up and made us wonder what the talk is behind the scenes.  Why do they keep trying to give us such positive information and not tell us what they're really thinking?

 

Well I'm just on my way down after my shift of snoozing, so we'll see what the morning brings.  James is doing as well as can be expected.  Thankfully we are able to get his fever under control last night.  Tylenol and Ibprophen were not working and so they had him packed in ice most of yesterday.  I was freezing just sitting in the room because of the vent above the bed, and here I had to look at this little guy surrounded by ice ... poor thing.

 

I will leave of at that and will update whenever possible.  If the Open Lung Biopsy is not done the hope still is that he will be extubated today.

 

Another Night

Yesterday afternoon they took James off the aneasthetic and put him on morphine to relieve any pain and keep him somewhat sedated. We were a bit concerned about how he would react to the tubes once he was aware of his surrounds, but typical James style ... he is doing really well.

Most of yesterday they kept his hands restrained but at night I was able to release one hand and he did not pull at the tube. Today he has both hands free and is being very good. Because of the excessive amount of fluid and secretion in his lungs he is needing frequent suctions (where they put a suction tube down his ventilating tube in order to remove any blockage and lose secretion from coughing). Yesterday he was quite upset each time they did this and would bite on his ventilating tube to try stop them from putting the suction tube down. Today he has come to accept this procedure but his eye tell us he does not like it any better then before. As he cannot talk it is so very hard for us to know what is going through his mind. His eyes look so sad it is painful to look at him at times, but yet he lays there so patiently and is so good. I want so badly to just pick him up and hold him, but we cannot.

We took turns sitting with him last night so that someone was always there to comfort him. Once again we are thankful for the room we have on the ward where we can go for quiet and sleep. They have decided to keep James in ICU at least one more night, so we're not sure how much longer that room will be available to us.

Because of James' metabolic issue they are pushing to have him back on his feeding tube again and started it very slowly this morning. We are not impressed with this idea and will fight a bit harder to have it stopped. His belly is so distended from all the air that is being pumped into him and we have had his tube open most of the time and mucas and phlegm continues to flow out of the tube, especially with each coughing fit. Now he will not be able to release that air and at the same time we are pumping food in. If the stomach is distended it puts pressure on the lungs, making it more difficult to breath ... why they can't see that simple fact is beyond me. It's funny how they feel just because they have a way to push food in they need to. Any normal person would have been put on TPN (IV nutrition) as they would not be able to stuff food into them when they have a ventilator.

This mornings x-ray looked worse then yesterdays (they took several throughtout the day). They tell us this is normal, that x-rays are usually behind in showing the inflammation so they are not suprised by this. Clinically he is improving and they have been able to wean him slowly. James is also not peeing and needs medication to do so, which means he is retaining fluid and this can also effect the lungs and what the x-ray looks like. This on top of how much was left in his lungs yesterday. Nurses can sometimes help you to get a clearer picture of things. For example yesterdays nurse was interested in what exactly they were trying to do with James. When I told her they had left 440ml of saline water in his lungs she was absolutely stunned, she had no idea that much had been left in and suddenly began to understand why he needed suction so often. She then explained that when they do a small BAL (lavage) in the ICU they put in 1ml per kg. This would mean in James they would only put in 11ml and then withdraw what they can ... and here were left 440ml in.

They think that James could possibly come of the ventilator tonight, but will be leaving him until tomorrow morning. They do not want to remove it too soon as they would then have to put him on BiPAP (see here for pictures) ... and we definitely don't want to put him through that again. As well once they remove the ventilator they can no longer suction him, and the more we can suction the better. So as it stands nwo we will be spending another night in ICU.

We got the results of James' weekend stool test today ... one day too late. He no longer has C.Diff. If we had had those results yesterday they would have been able to do a colonoscopy and better look at his colitis issues.

Thanks you all for your continued support.

Philippians 4:13 "I can do everything through him who gives me strength"

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.