The Long Update

The date up top says January 31 ... but that's when I started writing this ... the publishing date is actually Saturday, February 2, 2007

So anyways ... I'm due for another health update. If I can remember everything that's been going on lately ... nothing major, just lots of little things, always trying to put the puzzle together a bit better.

As I mentioned, we haven't been get a whole lot of full nights sleep around here lately. For the last month James has been waking most nights and we've been trying to figure out the cause of these wake-ups. After a week or so we began to notice one pattern, he would usually wake between 10:30pm-12am ... during or shortly after he had a nighttime feed. We began to wonder if this was irritating him in some way, altho it didn't totally make sense since he has his lunch while sleeping (nap time). But slowly this waking up began to get worse and he would wake with a scream, finally one night he had a small seizure, where he was screaming but unresponsive and floppy when picked up. He did not spasm like he has previously and he did not vomit this time, but it took some time to get him oriented and settled again. After this episode we decided to stop his nighttime feeds for a bit. Unfortunately this did not give us a clear answer, altho we did see some change. He no longer awoke screaming, but he would wimper for a little bit and then go back to sleep on his own. So it seemed that the feeding exasparated an underlying problem. With James' diet it is not wise to take him off a feed, since he does not get his protein requirements for the day; in this case he was not even meeting his hydration requirements. We had to slowly put him back on his night time feeds and right away he start waking and needing us to help him settle again.

This nighttime waking began to shift tho, just to cause more confusion and we saw him waking up more often during the middle of the night, usually between 4am to 6am (along with his pattern of 10:30pm to 12am). We also seen another change in the fact that it was not uncommon for him to wake up coughing, which would turn into gagging. At first we thought he had a cold coming on ... but after several nights of this and him being completely fine during the day ... we began to credit this to his lungs. Increasing his puffers did not help any either. (no surprise).

Along with the disrupted nights, we've seen another pattern in James. It seems that every day he gets a low grade fever at some point during the day ... usually late afternoon and evening time. We have been doing vitals on him 4-5 times a day now so we can have a better indication of what his body is doing. His breathing is consistently in the 45-50bpm and once a day we see a low-grade fever. But yet ... he functions and acts completely content and happy.

We decide to track down our pediatrician (who is currently on call at the hospital and does not have clinic, so we couldn't get an appointment) and see if there was anything we could do to help us all get some more sleep. As well, I had still hoped to get some help from her on the upcoming tests they hope to do regarding James' lung issues.

I managed to obtain a bit more information from the lung specialist's receptionist and found out the tests that are so far slated for James. At this time she said they are planning to do a bronchoscopy. This test involves inserting a small tube down into the lungs to look at them and take some mucas and tissue for testing. This test is not the Bronchoalveolar lavage (flushing of the lungs), as the specialist mentioned when we seen him. Later, when speaking to our pediatrician, she said that these two tests can often be combined as one. They also hope to do a High Resolution CT. It is interesting to read what they could all diagnose using this type of scan ... altho I think the main reason they are doing this is to get a better picture of his lungs. As well they plan to do the 24 PH Probe test I previously mentioned - this is when they put a probe with a sensor on it down the back of the throat into the esophagus, just above the stomach. This test is used to measure if a person has reflux. It will be interesting to see how he handles that test ... but then again, the NG tube never bothered him. The last thing the receptionist mentioned is an Upper GI Series. This test requires you to drink a special mixture called barium which helps show the digestive tract on x-rays. After drinking the barium, the patient has a series of x-rays done at various intervals, around 15-30 minutes apart. Marietta has had this test done before. If they require James to drink the barium then they're out of luck: we'll never get that much stuff down him! I spoke to our pediatrician and she said depending on what exactly the specialist is looking for it is possible to do it through his G-tube ... otherwise they may need to put an NG tube in to get it down ... fun, fun!!

So I did manage to get in touch with our pediatrician on Monday. She had not received the lung specialist's dictated notes since they were not posted yet, but she was able to clear a few things up based on what I had managed to get from the receptionist. When listening to what has been going on lately and evaluating James' wake-up pattern, she began to strongly feel that we may be dealing with a reflux issue that is further irritating James' already sensitive lungs. When sleeping a person becomes relax and this means that if they have reflux they may have food coming back up into their windpipe. James' coughing and gagging would be explained by the fact that when a person feels this happening they would cough in order to clear the lungs of this stomach material. But if he doesn't stop it soon enough or if too much comes up then it can actually end up in his lungs. At the same time, we've had a couple vomitting episodes and this could be that he did not not manage to cough in time to prevent the food from getting into his lungs and when too much got in he ended up vomitting. We could just simply try a reflux medication and see if it would help, but considering all these tests are pending, she thinks we should just wait and see what they say as we can get a clear indication if he has not been on the medication. She said a good indication will come from the PH Probe test and this can be done relatively quickly, so she will look into getting this schedule ... hopefully we can get sleep again soon.

While speaking to her I mentioned that we had had blood work done the week before, some specially ordered by the lung specialist and the others were his routine blood work. She quickly reviewed them, but since she had not completely analyzed them, she could not give a clear evaluation. What she did see was some levels are out of wack, but nothing so obvious to lead to any sort of answers. One thing that did stand out was that his IgG (immunoglobulin) levels were double what they should be. She did not want to speculate at this time what this could mean and wanted to wait until she spoke to the lung specialist to find out what he was looking for before she decided whether we need to have him see someone in Immunology or whether we should just retest after a period of time. I have a follow-up appointment with her next week and hopefully we'll get some more answers and ideas of what's going on by then.

Tuesday we were off to see the Genetic Doctor. He too has some concerns about James' blood results. However, James' ammonia levels were good. This is always the most important thing to look at when it comes to see if James is stable. On the other hand, his Protein levels were high, but they could not give an answer as to why. The high IgG levels could explain part of this. Being dehydrated could also explain this, (recall, we were skipping his night feed). But an important component of the protein levels was not tested, so they could not give a clear idea. Since they were unsure as to the cause of this it was felt that it would be a good idea to do some more blood work ... poor guy. Another reason for this was to have a look at his mineral levels again. The results of his blood work showed that some mineral levels were high and so the dietician was put to work to change James' formula. James has been upgraded from Neocate to Neocate Junior, just the same change as putting a child on formula designed for children over 12 months. He will continue to take his Pro-Phree formula, (this is a protein free formula with your iron, minerals and vitamins), but less then half the amount he was taking before as this was the formula that was throwing out his levels. In order to boost the calories that he needs they have added a new formula called Duocal, a formula containing fats and carbohydrates.

While at the Genetics Doctors we were told that our DNA finally made it across the border in January. We did this blood work last July! In September we were called because there was a hold up at the border ... after much hassle and struggle they finally got it through in January. So we were to expect the results in the next weeks. Wednesday the doctor called us back to tell us they got the results. All this does is confirm that the LPI diagnoses is correct. He did mention that with this in mind he does not think that the testing of James' lungs will tell us anything, as it is "simply" LPI related. But he also understands that it needs to be done, since it is still possible that reflux is taking an extra toll on his lungs.

Last night we went out for the night and came home around 11:30. The babysitter said James slept good. I started up his nighttime feed and a short time later he was crying and moaning again. We stopped his feed and are now once again going to try without feeds at night. This brings concern because we know his blood work was out of wack last time and so we can't short change him on what he gets in a day ... but it's rather hard to get everything in him during the day unless we hook him up continously, an idea that will not go over with James (nor his parent for that matter :). The funny thing is, we can feed him at nap time and he seldom wakes or coughs from that. So confusing!!

On a happier note. Last week James had a dietcian appointment and weighed in at 10.7kg (23lbs 9oz) ... much to our suprise as this was shortly after we had taken him off of nighttime feeds. Although nights can get tiring it is always a blessing to see James as a happy, content, normal two year old during the day. You simply would never guess what a huge medical chart he has just by looking at him.

In the meantime the girls have each taken their turns being sick, Marietta last week with tonsillitis which caused me to cancel my first OB appointment so I could take her in and get some medicine. Just my luck Rebecca was sick this week when I had my rescheduled OB appointment. She had fevers for a few days, first with no sign of anything else and then she began to have sore ears which I hoped she would get over on her own, but by Wednesday night it became apparent she needed to make a visit to the doctor also. My ultrasound was early enough Thursday morning that I left her home with Rob, with the hopes of getting her to the doctor after my ultrasound and before my actual OB appointment. But then they bumped up my appointment, so Rob ended up taking Rebecca and James with him on the bus and meeting me at the hospital. The kids love going on the city bus (this was Jame's first time, he just sat there and took everything in) so Rebecca survived the trip down, but by time I got her she was a hot, red faced, crying, sick little girl. She managed to sit through my Dietician appointment (which they added on to my OB appointment after reveiwing my blood sugar levels) with tears running down her cheeks. We got her home and in bed and took her to the doctor after a long nap. The doctor never specified exactly what she had, besides a very red throat, tongue and cheeks (she called it the strawberry tongue, whatever that means) and both ears infected. A prescription of Amoxicillin and we were on our way ... only to have her break out in a itchy red rash all over body after taking the medicine. So yesterday we finally got another prescription for her and she's on the mend now.

My OB appointment went fine. The ultrasound showed everything is good, blood pressure was fine ... nothing to worry about ... not that I expected there to be. They were concerned about my blood sugar levels, (should have left the book at home then they would never have known :) and sent me off to see the dietician. They have a completely different approach her then when I was in London. In London they declared I had Gestational Diabetes, went over a diet I should follow and that was it. No blood sugar tests, follow up blood work or even followup dietician appointments ... just checked the urine before each visit. Here they said I could leave my diet for now, cutting out the obvious sugar items like cakes and treats and all those yummy things. My levels were too high after fasting (first thing in the morning), which I know is because I eat all evening long. They mentioned they'd like to see my daytime ones come down a bit, but according to my records they're in a fine area. Here they also find it necessary to prick yourself 3 times a day and monitor your levels. When they found out that I had no money for that kind of stuff they supplied me with yet another new machine and some sample strips and declared I could just do the pricking 3 days of the week. Even so, the strips they gave would only last me a few weeks. As much as I like my sugar ... it will be cheaper for me to be stricter on my diet and forgot the constant testing. I believe they are concerned because these higher levels are showing up early in the pregnancy.

So phew ... big long update is done. It's much easier to stay on top of this and do "short" (if you can call them that :) updates!!

Sledding

It's so nice when the kids are easily amused. They're just so excited to actually have snow, and they love playing in it, especially Rebecca. They've taken their turns being sick the last week, but when feeling well they're out on the front hill sledding or in the backyard playing in their fort. I guess there is some advantage to having a hill in front of the house ... it's not very big, but it keeps the kids happy. I've been wanting to take them out sledding, but between kids being sick and weekends being so cold ... we just haven't gotten that far yet. I find -10 to -15 just a little too cold for James to be outside for a long period of time, especially since he can't tell me if he's cold ... so I can't be bothered to bundle them up and drag them over to a place that has a hill just to find out they're cold after a few runs. We'll have to try get out there with just the girls sometime ... altho I think James loves sledding more then the girls. But hey, as long as I don't take them out to a real hill ... they'll be happy with our little "hill".

James quickly picked up a new word the first day as he watch Rebecca from the window ... "wee" and the following day when he got his chance to try it out he had another new word: "go, go". The girls just weren't fast enough for him :)

Sleep! :)

I haven't forgotten about the blog ... just seems everytime I sit behind the computer we're busy doing research on something medical ... wow, there is so much to learn about the human body!! We recently received an excellent article from the National Urea Cycle Disorder Foundation (NUCDF) about LPI ... the best and most informative article we have ever gotten about LPI (if interested you can read it here). A lot of what is in it we have already heard, but it really brought a lot of issues closer to reality. There were lots of terms and info in there that we also had to further research to get a better understanding, especially given how James has been doing lately. So between Rob and I we've been slowly working our way through it, sharing websites that we find which help us to understand the article. On top of that I've been working on understanding James' upcoming tests and how they will help, and then some of his recent blood results. Like I said ... wow there is so much to learn!!

Lack of sleep has also caught up on me lately. During the past month James has not been sleeping well, which slowly seems to be getting worse (more on that when I do a proper update) and so most nights I or Rob (he does his share when it gets bad) spend 1-3 hours with him at some point. I was doing well keeping up ... but now I think I need to sleep a few days away!! :) So, I end here and hope to do a detailed update soon.

In the meantime ... thank you all for your comments and e-mails wishing us congratulations and strength in the coming months.

28 Weeks ... And Counting Down!

When all our troubles and woes began with James last year a wise friend advised me that due to my prenatal history I "better not think about getting pregnant" at that time. I took those words to heart and after much thought and prayer we decided that these were probably wise words for the time being. I went through a rollercoaster time of accepting the idea, but after spending five weeks of the summer in the hospital I was very thankful for this decision and had come to peace with the concept.

At the end of November the rollercoaster ride began again when we discovered that we are expecting. First I went through a denial stage, but the pregnancy woes quickly kicked in to reassure me that the diagnosis was right. The month of December was challenging, with James back in hospital, and me picking up yet another bad cold from the hospital which took over two weeks to get over, feeling so sick from pregnancy that I just wanted to crawl in bed and stay there ... and working with what the Lord had given us. All things come from the Lord and this too is from His Hand. He also gives us the strength we need to carry us through whatever is placed in front of us. I knew this, yet I still struggled. Feeling the sickest I ever had from a pregnancy did not help matters. After three weeks of enduring with some sort of stomach pain, indigestion/reflux type of symptoms I found an acid reducing medication that helped ... for a week. After a week the symptoms came back, but not as bad. I then stopped the medication to see if it made a difference and found the medication was no longer helping ... short lived relief, but it is not as bad as it was ... at least I can function OK now. By the time January rolled around I had come to better terms with everything ... not to say I still don’t wonder and worry how I’m ever going to manage.

So a bit of history comes in here. Those who do not know our family history might ask: Why such a big struggle? What prenatal history?

Our first child, Marietta, was born at 38 weeks after an emergency c-section, due to placenta insufficiency. At that time we did not realize the seriousness of this as everything turned out well.

Our second child, Rebecca, was born one week early (normal) without any complications that we are aware of. There was concern about size, but no ultrasound was done and she was born before the non-stress test could be done.

Our third child, Justin, was born at 27 weeks gestation, after a very sudden, severe, life threatening case of toxemia, called HELLP Syndrome. Justin was born weighing half of what he should have weighed, tipping the scale at only 1lb 2oz. The Dr's said that Justin too suffered from placenta insufficiency, possibly related to the toxemia, but more likely from malfunction of the placenta. Since this was an issue with the first pregnacy, they suspect that the toxemia is was a separated issue from the placenta deficiency. Justin lived three weeks before he passed away due to bowel complications.

Our fourth child, James, was born at 38.5 weeks after a relatively healthy pregnancy. After Justin we were told that all future pregnancies would be very closely monitored and include at least partial bed rest (no physical work, sit and lie as much as possible), further restrictions would be placed depending on circumstance. I made it through the pregnancy with James by going on partial bed rest at 24 weeks. We saw a slight elevation in blood pressure, but not in a concerning area. I also developed gestational diabetes and was placed on a special diet to keep this under control. I had countless ultrasounds and appointments to keep an eye on things, but things progressed well until the end where there was some signs that the placenta was beginning to give up ... it managed to hold steady until the scheduled c-section date.

So it will be interesting to see how I’ll manage through this pregnancy. James certainly doesn’t allow for much resting time. But he has helped in a different sense. Since we recently received government coverage to assists us in the care of James, we have decided at this time the best assistance would be hiring someone to clean the house for me ... I will get into this further in another blog entry. I have to constantly remind myself that just because things went relatively well with James and I was able to get away with more then I should have ... doesn’t mean it will go the same way this time ... I keep hoping though!! :) At this time I don’t take much comfort in thinking that it’s just the pregnancy I have to get through, as we have had two (one VERY) colicky babies, and I don’t expect any less from future ones. On top of that, there is the possibility that this child too could have LPI. They will test this right away, and so diminish the risk of damage from excessive protein like James has.

This past week I went for my first prenatal appointment, which didn’t really turn into much of an appointment. She listened to my history and then decided it wasn’t worth going through all the initial paperwork and checkup since I needed to be sent to Mac to be monitored under the high risk team and they would just do the same thing over again. I haven’t heard back about an appointment, but I’m assuming it will be soon since I still have not had my proper initial appointment yet. As well she wanted an ultrasound done right away so they have something on record to follow. She did give me a new glucose meter so I can keep an eye on my sugar levels. I borrowed my mom’s for a few days and noticed that my levels were a bit high after fasting, but do okay during the day. She also prescribed some Diclectin to see if this would help with my indigestion, reflux and stomach pains. Diclectin is not usually used for this, but she figured it was worth a shot. It does seem to help, unfortunately it’s left me so drowsy that I actually prefer the stomach pain ... well not prefer ... but I kinda like to be able to think clearly and feel like I’m safe to get behind the wheel. I’ve lowered the dose, which decreased the drowsiness, but not enough. So now it’s a matter of whether my body will adjust and not be so drowsy after a few days ... or go back to the pain ... still debating that one.

Just for the record: I am now 12 weeks pregnant with a due date of August 5, 2007.

James' Visit to the Lung Specialist

Another day at Mac. Today James had to go in to see the lung specialist. This appointment was booked in December after he had the influenza. At that time they had wanted to follow up and see what his lungs look like when he is healthy, since all current x-rays are from when he's come into emerg. and is sick. Unfortunately, today's appointment did not bring the results we had expected ... it also left us rather confused, or at least as good as uninformed.

I gave myself an extra 15 minutes this morning just to find parking at Mac. Usually I park on the streets, but for the "winter" (that is when it's actually winter-like out there) and knowing this appointment would be way over parking limits, I gave in and decided to park in the garage ... I guess more people think like me since between that and the fact that they are doing repairs to the South garage it's impossible to find parking there now ... even the triple parking is full at times. After 20 minutes I finally managed to get a spot in the triple parking area when they opened it up again for a few minutes.

So I arrived late for our x-rays ... not that it matters since it wassn't actually booked, but simply a walk-in service. Well today it mattered since the computers were down due to a virus and there was a very long wait as they tried to work around it. This in turned made me late for my appointment with the doctor. Can you tell how my day was going??

Anyways ... thankfully we didn't have to wait long for the doctor ... although I wished we had to wait a bit longer so Rob could have been there for the whole appointment. Rob came as soon as his class was done, but we were just wrapping up our appointment by then. We have met this doctor before when James was in hospital (in December) and at the time we thought he was just in a hurry that day, or having a bad day ... guess not ... same thing again today. He talks so fast it takes every effort to keep up with what he's saying, he uses all medical dialect and doesn't explain any of it. When you stop to ask a question, he hardly answers it or he actually just ignores it and carries on with his train of thought. By the time he stops long enough to take a breath he's given you mounds of information to digest and you're still trying to format it so you can ask questions. By the time you've done that he's already way into his next speal. Get the idea of where this is going?? Last time Rob and I were both there and after he left we tried to process what he had said and between the two of us probably got about 50% of it. So being on my own this time, with James at the point where he had enough, I'm lucky if I caught 25% of it ... and after trying to ask a few questions and not getting any help I finally gave up and just listened as best I could.

So as you may have gathered I really can't explain the results of todays visit very well ... but I hope to get in touch with our Ped in a few days, once she gets the dictated notes, and ask her to help clarify. Next time I may have to consider taking a recorder along :)

So what did I get out of the visit?? First and most important is that the x-rays of James' lungs did not come back as the doctor had hoped. Since the computer were down he could not look at past x-rays to say whether it actually looks any better at all, but he took one glance at them and started in on how they didn't look as they should and gave the heads up for what we were going to have to do. There are two options; either put him on prednisone for a month and see if his lungs improve, or do further investigation. I don't know enough about what prednisone would all do, but I do know it's used when trying to get asthma under control. My only thought in that regard is that we give him Flovent and Ventolin when he's having breathing difficulties, and both of them do absolutely nothing, so I'm not sure prednisone would be different. But from reading up on it it seems to be much more extensive than the puffers. This Dr. did not think the prednisone would work; he gave some reasons but I can't remember what they were, but they made sense at the time. This leaves the second option.

We know that interstitial lung disease has been reported in other LPI patients, but we can't just say it's an LPI issue and leave it at that without investigating to see if there is a seperate cause. Investigation may also give better indications on what the best way is to treat James' case. Previously doctors have always given us the indication that this is something that can just be monitored but it wasn't at the stage that we needed to investigate. This is why I was a bit suprised with the conclusions of this visit. I figured he would look at the x-ray, say see you back in 6 months for another view and that'd be it. Wrong. At this time they are going to run him through the roll of tests, everything except the actual lung biopsy, with the hope that something will come up so they don't have to do a biopsy.

What are the tests and what are they looking for? This is where I got even more lost. He ran off different names and what they are looking for, but I didn't catch half of it. A few things I can remember is that they are looking at possibilities of vasculitis, which is an auto immune issue, chronic pnuemonia, silent reflux and chronic infection. He listed two other things but I can't remember what they were. The one that stands out to us is the chronic infection, mostly with the hope that this could explain his unexplained fevers and hospitalization, always involving breathing difficulties. I can remember a few tests, but not there proper names or what exactly they hope to gather from them. They will be doing another CT Scan of his lungs. This won't really tell them anything except give a better picture for reference. I don't know the name of the next test, but it involves flushing out his lungs. I'm not sure what information they hope to gather from this, once I get the name of the test I can look it up on the internet. Both of these mean he has to be sedated. So the Dr. is getting in contact with our GI doctor to see if this can be coordinated with the endoscopy on March 7. He also mentioned he would need to contact and coordinate with GI because some of these tests involve GI stuff (not sure what those ones are, or how they connect). They also hope to do a 24 hour test for reflux, if I'm thinking of the right test then I belive this is called a PH probe test. I'm not sure how reflux can cause the lung disease, he didn't explain that, or if he did, I missed it. Maybe I'll go back and ask the wall to see if it caught any of it. The last test I remember is more blood work, mostly auto immune blood work.

So the sum of the visit is that his lungs don't look as they would like and further tests need to be done to determine if they can find an answer. He clarified several times that it's quite possible no answer will be find and we can only say it's LPI related, but they need to investigate before they can leave it at that. Our poor guy, more tests. I hope they can coordinate everything for one day ... and please, no fevers this time!!

After our appointment, we went on to get blood work done. I had planned to get blood work done today anyways. Originally I intended to go in next week and get it done so that it would be ready for his next genetic appointment, but I figured I was there now, save myself an extra trip. Just our luck, another 45 minute wait, but at least Rob was there this time so it went faster since I had someone to talk to and I was still trying to figure out our appointment and regurgitate it to Rob. We never stop being amazed at how good James is. After all the pokes and prods he doesn't scream or kick up a storm. He knew exactly why we were there, and still he sat there quietly while she got all the tubes ready for the blood, He even pulled up his sleeve to indicate where they could poke him!

James slept almost instantly once we got back to the van. I arrived home with a monster headache, which made me very thankful ... not for the headache, but it was a reminder of how little I get them now. After years of struggling with daily headaches I can now say that I no longer get them daily, not even weekly anymore. This headache made me feel like a wimp because I just wanted to crawl into bed. Funny how if you get relief from something you can't handle it as well when it comes back. A couple times this year I did have them daily again for 3-4 weeks and then they suddenly disappeared. There's no real explanation as to why they are not as frequent or what makes them come back, we've sort of figure it's a combination of my jaw finally get a bit more strength and healing and probably also due to some vitamin supplements I've been taking (headaches disappeared shortly after I started them). Whatever the case I have much to be thankful for. And most of all I think that it's really not the treatment I had or what we've done, but it's the Lord's hand helping me through this year. I don't know how I would have survived with the headaches on top of everything else.

Can't sign off without a picture. This one's a classic. We always struggle with ways to entertain James and keep him confined when we're at other peoples houses during feeding time. On Sunday we were at my parents and we managed to rig up the portable pump on the back of the car. It worked great, he could zoom all over, he had a bit of length yet to get off and play close by the car and would climb back on and carry on to the next thing when he wanted to. Too bad our house is too congested for that ... not to point out the novelty would wear off if we did it all the time.



I had one other appointment and a meeting this week ... but I've babbled on plenty long enough for today ... I'll tackle those next time as they're really not completely James' related.

James is Back!!

Whatever it was ... it's now gone, and we have James back: happy, energetic, playful, busy, content James ... ah, so nice!! Monday was the last day we had any recorded fevers. Tuesday his character was back and no more fevers ... still the distended belly and more rapid breathing though.

Today we seen the pediatrician. Since James is now better this appointment was not nearly as important as we thought it would be at the beginning of the week. We reviewed what had happened over the last couple weeks and simply came to the conclusion - there's no rhyme or reason to this boy. She checked his ears and there's no sign of infection. The mineral oil worked on the left, but the right is still covered with wax... we'll have to keep working at it. We also discussed the PORT. She actually said she had been re-thinking the idea herself (after being confronted with a simliar case in hospital recently) and wondering if it was such a good idea afterall. She too felt the PORT would confuse the fever issue and would make the situation more complex. So at this time we should hold off on the idea. If he begins to return to the hospital as often as he did in the summer, it will certainly be reconsidered.

Next week he is scheduled to see the lung specialist. This appointment was set up when he left the hospital in December. They wanted to have a look at his lungs when he is healthy. Right now his breathing is more rapid than normal, but not laboured... yet he is acting healthy. I questioned whether to go ahead with this appointment. She thought it would still be good to go ahead since we have no idea if this is now a "normal" or how long it will last.

A few other things were discussed about his feet, his speech, the diet coverage forms and then we were on our way. We are even going to try go two months before the next appointment ... let's hope we make it that far. March is already beginning to look like a busy month ... maybe that will mean we'll have a bit of a break in February ... wishful thinking!! :)

Yesterday we seen our Australia winter come to a temporary end with a light dusting of snow. Pretty sad when we get excited when the ground is hardly covered. Our poor confused flowers that were already coming up ... it will be interesting to see what happens to them come spring. The girls thought the snow was great, but not as great as James thought it was. We bundled him up and took him outside for his first introduction to snow (that he remembers). He was extremely fascinated by the stuff and kept pointing at everything and saying "uh-oh, uh-oh". At first he was rather concerned that this stuff was all over his toys, the ground, the trees ... but eventually he relaxed and enjoyed it. Not to worry, tomorrow it's suppose to rain and be up to 7C again. I'm really beginning to wonder if we're going to get any real snow this winter.

Now What??

Today we were off to visit the surgeon. Rob decided to come with me for this visit as it was partly for information. I'm glad he did come so that we can both sit here and wonder what to do next.

Last hospilization we couldn't wait to have a PORT put in as we watched them poke and prod several times each day as they tried to get blood or start an IV. Poor guy was full of war wounds by the time we left. The last time they took blood they had to get it out of his head, supposedly much easier and less painful, but rather hard to watch.

Now we're not so sure. We left the appointment undecided, We'll have to weigh out the pros and cons. James is not a normal case for a PORT. Usually these are for patients who are going through chemo or need continuous IV for TPN, but they are also used on patients who have seizures and need a quick access. The doctor was not in favour of the idea, feeling 2-3 pokes each time was better then a PORT. I believe one of his big reasons for this was because of James' unexplained fevers. There is always a chance of infection when you put something foreign in a persons body, and so a PORT would just complicate the process of finding the source of his fevers, since the only sign that their is trouble in a PORT is....you guessed it, fevers. As well, at this time a PORT cannot be put in until James is feverless -it is far too risky when dealing directly with the blood stream. Another thing against James is his colitis. Those with bowel issues are more susceptible to infections with the PORT, because inflamed bowels can leak into the blood stream. Since he was not in favour with the idea, he stressed all the problems that can arise. With patients who have their blood stream accessed daily for months, the risk is lighter on the balance beam then for James, who "simply" has hard veins to find. To a certain extent this could be viewed as convenience over practicality. It all sounds complicated ... but then a G-tube sounded complicated and overwhelming at one point too, and now we think it's quite simple.

Having said all that, he gave us a consent form, which we took with and decided to discuss it again with our Ped on Thursday when we see her. She originally suggested it, so she can give us the more positive outlook and a feel on how important it would be. We're not sure what to think. It's hard watching them torture him everytime they take blood, but we don't want to subject him to any unneccessary invasive treatment. We're a bit stuck as well - they can't put it in if he continues to have fevers, and if they figure out what the cause of his continuous fevers is, then we may not need it anyways. So for now we'll sit on the fence and think, think, and think again.

James himself is actually doing quite well ... figures, someone must have told him he has an upcoming appointment that's going to make a difference. The highest temp he's had in the last 48hours is 38.0C , still a fever, but not too bad. Today he was himself again, playing and active and seemed fine, only sign that trouble is still there is the very distended belly. Now what?? Nothing is ever straight forward. We don't want to push for investigation and more torturing if it's unnecessary and it seems every time he's bad enough to push for something, an other thing comes up to interfer with investigations. We had really hoped that we could get him in hospital under the care of our Ped while she is taking her turn on the floor....it is so frustrating dealing with other doctors. For now ... wait to see what Thursday brings.

Another Week

Another week gone by, the holidays are done and it’s back to the old routine tomorrow. I’m going to miss being able to sleep in and going through the day without constantly minding the clock, but at the same time it will be good to have routine back again.

It was a busy week again, nothing unusual, just life. Monday we continued to tackle the cleaning job, finally making visible progress on the laundry room and storage room. Rob spent time putting up different shelves and hooks, etc to make it much more organized. I’m so excited now to be able to walk through the laundry room without having to worry about what I’m going to trip over ... and I can actually get into the storage room now ... did you know there was a floor in there?? Now with all the extra shelves I have no excuse for it to become such a disaster again. I must give all credit to Rob as I spent most of the cleaning spree soothing, holding or comforting James. He has not had a very easy time the last week or so, and I did not make it any easier by constantly trying to shoe him away. Rob went back to school on Wednesday and I decided to start my holidays then. The next few days were spent visiting with friends and family, relaxing and giving James his much needed cuddle times. It was refreshing!!

James made it through the weekend, and the whole week. We are now into Day 11 of unexplained fevers. This episode is different then other episodes we have gone through. Normally James’ temperature slowly rises into the 38's and then stays there with spikes into the 40's. His lungs cannot handle this, he struggles to breath and after 4-5 days he sort of "collapses" and it’s time to take him in. This time we see him going in and out of fevers and no 40's this time. He drops into the 36 area for a while, then creeps back up into the 38's, hitting 39 about once a day and then back down again. Usually between 9:30pm -11pm he drops down to low 35's, by 4am he has a fever again at 8am he wakes back to normal around 36.5. Daytime is inconsistent, up and down in the 37-38's.

We have not seen any sign of sickness. He has a clear running nose at times, a few times we’ve seen some green coming from it ... but mostly clear and not very much. We have not heard any more coughs or any sign of a cold. A couple of times throughout the week we questioned whether this was all just an ear infection or something of that assort. One night he did continue to tug on his ear, but that was after 5 days of fever. We did not see it again the next day and only occasionally see him tug on it now. This randomness could also be brought on by the fact that I have been faithfully putting mineral oil in his ears ever since the one night I suspected it was his ears. There was no point taking him to the doctor as I do not want him on antibiotics again and he always has too much wax for them to even be able to tell if he has an ear infection. So first I need to loosen up the wax and since I’ve been working on loosen up the wax we’ve never seen any obvious signs again that would suggest an ear infection. The only other sign of trouble we see is that his belly remains very distended, but his bowel movements are good and do not indicate that his colitis is acting up.

James’ breathing has been fine throughout this episode, likely due to the fact that he is not having continuous high fevers. Even when he does spike we do not hear the laboured or extremely rapid breathing. I check him occasionally and he’s usually around the 45-55 bpm area, considering this is high I’m surprised we do not see him struggle more.

Another difference we see this time is that he is unhappy, clingy, and often miserable. We have always marveled at how he just keeps going as if nothing is bothering him when he has high temperatures ... this is certainly not the case this time around. He requires a lot of extra time and patience (as it’s usually when I’m the busiest).

James does not sleep well, still requiring us to lay down beside him when he goes down for nap or bedtime. How much this is attitude or insecurity we will determine once daily routine returns. As well, it is not uncommon for him to wake up once during the night (usually because of a fever spike) and needs someone to lay beside him to get him back to sleep. Last night we had an episode where he developed a funny cry and when I came to him he was not very responsive at first, he had a low temp again and seemed cold and clammy, almost like he went into some sort of "cold shock". It took a bit to get him settled again. He cried a similar cry a couple more times throughout the night but went back to sleep on his own ... and then slept in until 9:15 this morning.

On a good note, James weighed in at 10.56kg (23lbs 4oz) on Wednesday. He has not only caught up on his lost weight, but surpassed it. The key is to see if he will keep it on since his eating habits have diminished again and he just picks, occasionally eating,. Even his interest in ranch dressing, ketchup and imitation cheese have diminished. The last few days we had hoped that he might actually be getting better since he began to look healthier again (eyes less glazzed, bags under eyes gone, face looks fresher) and seemed a bit more creative in his play again, but his temperatures are not agreeing with his looks.

This week we see the surgeon regarding the PORT we hope to have put in. With these continuous fevers they will not be able to put a PORT in as it is too risky ... at the same time, if they are able to figure out the underlying cause of all these fevers then it’s possible we won’t need the PORT anymore. But for the time being we will move ahead with the idea. The most important appointment this week is with our Pediatrician on Thursday, if his fevers persist until then we are expecting that she will want to admit him again for further investigation as she is currently on call at the hospital and can take control of the investigations done.

So at this time ... we begin the week expecting to end it in the hospital ... unless we see some good changes inbetween now and then.