Almost There

James oxygen is down to 50ml now, just a wee bit more to go and he should be oxygen free ... hopefully tomorrow. Character wise James is James again, active, energetic, playful and ready to go. Thankfully he easily accepts his many cords and wires and plays well around them. He also has accept that he can't leave the room and is content to play on the cot, in the high chair or look out the window, with some occasional TV time. A few times he has expressed his desire to go home, knowing that he needs to get rid of the nose prong to do so. He point to the nose prong, declares "out" and then says "go home". But with a few distractions he's okay again.

We are once again at a standstill with the Team ... our continual frustrations with hospitalizations comes out again. The Team is quite content to just get him off oxygen and send him home and we are quite adamant that we need to know the root of the problem or we'll be back again in a week or so. James has three more days on his current antibiotic, previous experience dictates that shortly after coming off the antibiotics the troubles start again. So while the Team sits on there hands, buying time and hoping to get rid of us without having to dive too deeply into the issue we have been doing our research. We have presented our information to the Team and have told them we would like further investigations into the information we found ... as well, we want a 2nd opinion from Toronto Sick Kids. The last we heard they are trying to arrange a Meeting of the Minds of the various doctors for tomorrow to review and discuss how to proceed.

Thankfully we have our Genetic Doctor on our side ... unfortunately he just left today and will be gone for two weeks. We know we'd get cooperation from our Pediatrician, but when in hospital that is no help and once an outpatient things take far too long. Our Genetic Doctor also informed us that Toronto has an LPI case as well, that makes a grand total of 2 in the province (not sure about Canada), and if we go there he'd wouldn't mind us getting together with the Metabolic/Genetic Team there.

We know that aspiration is a big part of James' problems, and likely the reason for this hospitalization, but yet they seem unwilling to do anything to be sure that we are giving James the maximum help we can in this way. They are pushing us towards changing James from a G-tube to a GJ (gastrojejunal tube) Tube. James' G tube is inserted into his stomach, the GJ tube is extended past the stomach and into the small bowel/intestines. The biggest different ... continous feeds. The intestines can not handle "large" volumes of food at once so you have to be fed slowly and around the clock in order to get all that you need. We have not had much time to research this change yet as we've been spending our few spare moments working on researching some lung issues. The GJ tube is even less favourable then having a G tube because it has to be placed through Radiology each time and more easily becomes dislodged. For now we have changed James' to continous feeds while on the G-tube, with the hope that the small amounts in his stomach will work, instead of having four large feeds put in each day. We started him on around the clock, 24 hour feedings, and are now working to see if he can do it in 20 hours ... giving him a grand total of 4 hours each day where he doesn't have to be hooked up to a tube. Now how realistic is that for a busy active 2 year old?? We thought that the continous feeds was helping his gut issues as he no longer had diarhea, but he has since proved us wrong here ... so at this point we're not sure how we want to proceed in this area.

Even though we think aspiration is an issue it seems that there may be more to the situation, and after we told our Genetic Doctor what we thought could possibily be the problem we found out that he was thinking along the same line. From the information we have received on LPI, we know that lung problems are an issue and have resulted in deaths in LPI. How the lungs are related they do not know, but the common LPI lung problem that has arisen is another rare disorder called Pulmonary Alveolar Proteinosis (PAP). Our limited reading of various sites tells us that James' falls under the symptoms/descriptions ... right down to the unexplained nighttime sweating that he gets. The only symptom he doesn't display is the coughing, and of course I can't vouch for all of the CT findings or blood works info, but some I know he does fall under. An interesting fact about PAP is that not only does prednisone NOT help but it usually increases the risk of secondary infections ... so could that be the reason to our recent admission ... will we ever know?

So we have sent the doctors off to go find what they can about PAP and what they think ... we'll see what comes of this meeting of the minds ... if the lung specialist doesn't show up for the meeting we'll be no further ahead ... and considering the fact that we've been in hospital for a week and half now and have not seen him or anyone from his office ... well ...lets just say we're not to hopeful we'll get anywhere with this meeting.

But I am once again out of time and must return to my post.

Up and Down

Well it's been a couple days since I last reported. Not much activity happened during this time. They continue to try and drop the level of oxygen that James receives. The amount he receives is measured in litres/mls. Upon arriving on the Ward he was at 1 litre, this was increased at one point because he was having difficulty. But on Saturday and Sunday we were working downwards, working in slow increments to bring him off of the nose prongs. Sunday we started at 200ml and overnight were able to get down to 150ml. Unfortunately this afternoon we had a setback when we decided to try and let him test the limits. I asked for an extension on his tubing so he would be able to sit on the cot and from there look out the window to the cars down below. Well after 15 minutes of bouncing around in pure glee on the cot his SATs dropped back into the high 80's/low 90's. For some reason he ended up going way back up to 3/4 litre before we could stabalize the SATs again. James always does well while sleeping and so tonight we will slowing wean him back down again ... hopefully getting him back to 150 ml quicker then it took the last time to get him there. So at this time it's an up and down battle of working him off oxygen. We were not surpirsed that the extra activity set him back. Although we seen a setback when he became active we need to see this to get a realistic picture ... it would not be wise to have him sitting quietly at the hospital only to get home, without monitors, and find him ill again because his body can't handle normal activity.

Today we starting "hounding" the team on the many questions surround this episode and what could be going on with James. Until now we have sat rather quietly waiting for him to stabalize, now we are working harder for answers. It is firmly believed by all that this is a result of reflux/aspiration. But we do not want to leave on assumptions, we want evidence, so that we are not back again two weeks from now going through the same issues again. We have layed our questioned regarding the reflux/aspiration before them and our GI Doctor is suppose to come and assess ... so far that has not happened.

We have also requested further research into his heart issues and why his heart rate remains so high, even though he seems so much more stable. Some ideas were given today, as well as an ECG was done. More blood work was done as the doctor thought maybe it is just as simple as being anemia. We find this highly unlikely, considering the amount of blood work that has been done on him in the last year, by now they would of caught something like that ... but all part of the ruling out/diagnosing process.

We're working on different G-tube feeding changes, which could help with the reflux/aspiration ... but the library is closing and so I'll have to save that for another time.

Improving

Today we seen much improvement in James' condition and personality. He is playing as actively as he can sitting in a chair or bed, talks much more and seems much more content. He is more comfortable around the nurses, even reminding them when they have done something out of routine (like not taken his blood pressure, by putting his leg up and pointing). He still struggles to stand, his legs are wobbly and unstable. Right now he is hooked up to so many things that we can't put him on the floor to give him solid ground to try regain this strength, so the only time he stands is briefly in his crib if we are changing him or picking him up. He has also shown some interest in food, although not eating excessive amounts, more just asking to eat ... could just be for entertainment purposes too, since there's only so much a child can do with limited toys and room to move.

Here's a picture of what ideally you would like to see the monitor looking like ... the best part being that this is James monitor!! This is great, except it only does this when he sleeps, once away it struggles with normal levels. The top number shows his heart rate and it's sitting right where it should be, when awake he's often around 140-160. This is within the alarm rates (alarm goes at 180) but still higher then they'd like to see it.. The 2nd number shows his breaths per minute (bpm). This is definitely a good number for James, who breathes higher then that when "healthy". This number has been sitting in the 70-80's, fluctuating up into the 90-115 area, whereas it should always be around 40 (alarm goes at 80) . Today we began to see where it would drop more often into the 30-40 area, although still reading mostly 60-80 seeing it drop more often shows improvement. The last number is the oxygen levels (SATs) and you can't get any better then 100%. We were thankful today to see that he held in the 97-100% more of the day. They weaned down the amount of oxygen twice today and now he's on the bare minimum, the next step is removing it. After the last weaning his levels dropped back into the 93-96% ... so maybe by tomorrow he'll have picked up again and be ready to go on his own ... we're hoping, but not completely counting on it since we've seen his levels dropped back into the high 80's whenever the nose prongs have accidently been knocked out. (Alarm goes when below 90.)Whatever the case he has improved greatly!!

The Echo(cardiogram) came back showing everything to be fine. We pretty much expected this since he has had an Echo before. The Echo looks mostly at the structure of the heart. An ECG has also been ordered and was suppose to be done yesterday. Since the Echo came back fine they put it on hold until Monday. We would rather have seen it done when his heart is actually showing it is stressed ... but it's the weekend and that's the way things go on the weekend. While the Echo looks more at the structure of the heart the ECG is used to measure the electrical activity of the heart. It looks at the rate and regularity of heartbeats as well as the size and position of the chambers and the presence of any damage to the heart. It seems when James' breathing goes out there are often questions about his heart as well ... obviously the heart has to work harder when under stress, but they keep seeming to question whether there is more to the situation, so it will be good to have this aspect evaluated as well.

This shows the full face BiPAP that James had on in ICU when he refused to keep the nose BiPAP on the second time they had to put it on (after their attempt to take it off which only lasted 5 minutes). This one actually seemed more comfortable the just the nose type as it wasn't on as tight, either way he still didn't like it ... do you blame him? As you can see I'm holding his hand and Teddy is underneath ... in ICU we either did this or he sat on our lap, but he had to always have contact with us and with Teddy.

The BiPAP is off and the nose prongs in. Such a sad face, breaks my heart just looking at it ... so glad he's looking so much happier now. His puffy round faces comes from extra steroids that they had to give him when he came into ICU. Since he's on prednisone his body isn't able to produce the necessary steroids to handle stress and so they had to give him extra hydrocortisone steroids for a few days to help him through the worse. Just like the prednisone this steroid also has the "round face" syndrome ... only worse, likely due to the higher dose.

Today ... looking more awake and alert, playing with his toys, sitting on his own without pillow support. Definitely improving!!

Rough Start, Looking Better

James did well overnight, but had a rough start this morning. His SATs suddenly dropped back into the high 80's and his breathing increased again. Although he did not look as bad as he has, he was definitely struggling. There was talk about sending him back down to ICU and the BiPAP, but thankfully increasing his oxygen levels helped bring his SATs back into acceptable levels, and his breathing back to the 70-80bpm area ... where it's been sitting the last week. They did continue to discuss ICU as his heartrate has increased today and is not coming back down. But since the breathing is more reasonable now and he perked up later in the morning he is now being moved to Step-Down ICU, we are just waiting for his bed to become available.

About mid morning James began to perk up, become less stiff, move around more, started to play again and even started talking again (all he's done is moan or grunt the past week), and this time playing didn't send his breathing way up. The ICU physician was called in to reassess him and an Echochardiogram (heart ultrasound) was ordered to see if his heart is under stress. He technically should be sedated for this, but was in no condition to be sedated, and considering he did well for it unsedated last time (Nov '06) they tried again unsedated and he lay perfectly still for them. We are still waiting for the results.

This mornings x-ray came back showing no-improvement or looking worse. Although it looks slightly worse they say this could just be film exposure, etc. so they would judge it as showing no change from two days ago. Whatever the case, it's not heading in the direction we want at this time. Repeat blood work shows James' ammonia levels back in normal range of 22, so there is no further concern there.

Some discussion has been made about what the causes are, suggested tests or changes, but at this point priority is still his breathing and heart, so they are just speculating and giving ideas, until he is stable we cannot do anything that will make his less stable ... so for now it's a waiting game. Right now we are extremely glad that he doesn't have to go back down to ICU, right from the time we arrived on the Ward we felt more involved and informed as to what is going on. The doctors and nurses have been in frequently today because he is unstable, always letting us know what they are thinking, what to expect, what's going on, etc. ICU could learn a lot from them.

I also had a chance to talk with our Genetic Doctor today, about some of the issues we would have discussed at James' missed appointment on Tuesday. He was able to look at the results of his recent blood work to determine that James' thyroid is okay .... but ... his growth hormones are low again (as they were last summer, the original reason he was sent to the Endocrinologist). He will be in contact with our Endocrinologist to discuss what further tests to do to determine if it is indeed a problem. At the same time, he did not rule out that James' lack of growth recently could just be LPI related ... a common symptom being delayed growth. So we'll likely be looking at further testing on the hormone issue but there's no extreme urgency at this time. He also asked (or seemed more like suggestion) if we'd be interested in a second opinion from Toronto SickKids on James' lungs. I sort of got the impression he's not completely in agreement with our current Lung Specialist diagnosis or views. This is definitely something we'll discuss and consider seeing as we find our current Lung Specialist hard to work with at times because he talks so fast, in big terms, and doesn't answer any of our questions, leaving us completely in his trust ... something we've learned not to do with doctors. I find myself running back to our pediatrician to clarify things, which is not the way it should be. Considering how crucial James' lungs have been in his health condition (more so then the actual LPI) this is likely something we'll consider.

Well I've left James for nap time, but you never know who's going to bounce into the room and disturb him so I best return to my post.

Good-bye ICU, Hello Ward 3C

Hooray, we moved out of ICU today!! Actually just this evening. This morning we were told that there were no beds available on the Ward and so we'd have to spend another night in ICU ... another night on that rock hard chair. But late this afternoon a bed became available and after supper we were moved upstairs. From what I understood in ICU we were suppose to go to the Step-Down ICU, I guess we just got the first thing available since we received a regular room, but at least it's an "isolation" (or private) room. Whatever the case we're out of ICU and we have our own room with a cot ... not even a pull-out bed, but a cot!! Yah!! (Never mind the fact that the last couple times we asked for a cot and were told that they no longer use them because they are unsanitary ... all depends on who you ask, but this time it was just there when we arrived).

So, the real information ... how is James doing. Not much has really changed from yesterday. He had a bit of a spell during the middle of the night, making us once again wonder what the original cause is of this inflammation as this spell seemed to be reflux related ... our only hint in this is that he starts coughing and then asks for a bowl, we are assuming he asks because he feels food coming up ... but being just two we can only assume. The resident said this morning that once he gets to the Ward we can start assessing the cause(s).

James woke with a fever again this morning, but thankfully one shot of tylenol reduced it and it didn't come back throughout the day. He was not very alert or active for most of the day, seeming very tense and unhappy and often just staring off into space ... or at least in the direction of the TV. He sweat an awful lot today, making us check his temperature often, but it stayed okay after the tylenol. He continues to be on oxygen nasal prongs. His SAT levels hung in the 93-94% most of the time, okay all considering, but not getting better. His breathing was up again, often in the 70-80bpm. I was told that this can be expected for a couple more days. They did not do an update x-ray today since yesterdays showed enough improvement. James' IV line came out this afternoon and thankfully he is tolerating his g-tube feeds and had just received his last IV antibiotic, so they did not need to put a new one in ... all his meds will now be given via his g-tube.

Just before leaving ICU they ordered more blood work ... poor guy, thankfully only one try this time. James' ammonia levels came back high this morning. I do not remember what he normally sits at, or what range he is expected to be in. All they told me is that he had been around 30 and was now up to 80. It is not a critical level, but since it is rising they need to watch it. James regularly has his ammonia levels checked, this is a key part of his disorder. Ammonia comes from broken down protein, the liver converts ammonia to urea and then elminates it from the body. Ammonia levels rise when the liver is not able to convert the ammonia to urea. James' ammonia levels of course need to be monitored because of his inability to break down protein. James takes special medications each time he eats to help his system convert the ammonia to urea. When checking the ammonia levels they are watching to make sure that the liver and kidney's are still functioning properly. At this point there is not a major concern, but because they have risen and never have before they are keeping a closer eye on it (poor guy, that means more blood work) and will need to adjust his diet or put him back on IV if it stays that way. We have not heard back on what the evening blood work results were.

Upon arriving at our Ward room I guess James felt more at home as he suddenly perked up. He actually played with some toys, ate some spagetti and drank some juice (more then normal for James). He did also perk up a little yesterday evening, so it may not last long, but he didn't perk up near this much. Unfortunately with this perkiness we seen his breathing head even higher, so maybe an unperky boy is a good thing for a bit longer ... but he looks so sad and pitiful that way.

I also had an OB appointment today ... rather handy being in the same hospital ... as far as we can tell all is going well on that end.

Bye BiPAP!! Bye ICU???

We are thankful to report that this afternoon at 2:30 they were able to remove James' BiPAP machine and put him back on oyxgen nasal prongs. At this time he is holding okay on the oyxgen prongs without needing the extra help the BiPAP gave. His breathing continues to fluctuate up and down from low/normal (35bpm) to high (70bpm) as it did on the BiPAP and his SATs are holding between 95-100%. We are just thankful that he has made this step forward and does not require so much assistance to breath anymore.

James continues to be fever free. This mornings x-ray showed definite improvement in his lungs, another reason to be thankful. They then proceeded to medicate him to help drain excess fluid out of his body so that his body would not have to do that extra task once he came off the BiPAP. If he holds steady and no one more urgent needs the room tonight then he will head out of ICU tomorrow morning ... yah!! Never thought I'd be so happy to see the Ward again. Of course, home is always better, but right now the Ward is looking mighty appealing.

James is in PICU, P meaning Pediatric, and so you would think that Pediatric being children and children coming with parents it'd be more parent friendly, but not so. When we originally arrived in ICU the doctor was very good about explaining what was happening, what the concerns were, why they were doing what they were doing ...etc ... just like it should be. Since then I've only seen the Resident each morning, I have no idea who the doctor is in control of James' file. The Resident comes in and does her assessment, taking that information back to the Team. This is our only opportunity to ask question or get some sort of information, and this information is unclear and vague, since she is just taking the information to the Team who will decide how to proceed. Later you will see the Team outside the room and peeking in the room from the door ... now how much does one see peeking in a dark room (James insists the lights be left off) where a child is either covered or buried in my arms?? They leave their diagnosis and carry on to the next room, they do not enter the room to see if the Resident assessed incorrectly or missed something, they do not come in to explain what they hope to do, how things are going, if you have any questions, etc. Instructions are left with the nurse and she proceeds to do what the doctor says, so if you're dozing off or don't ask questions, you have no idea what is happening to your child. You are really not considered the caregiver in this place, just a visitor sitting on a hard rock chair. Parents are not expect to stay overnight and so only a chair is provided ... you MAY stay, but then you stay on the chair, no pull out bed here. I realize that it is ICU, they need all the room they can get when working and he has his own personal nurse ... but I'm sorry, I would never leave James at this time when he wants and needs me there the most. They were nice enough to provide a second chair so I have somewhere to put up my feet. There are no phones in the room or bathrooms in the ICU Unit/Ward, for these you get to go to the main lobby. So although we've never really liked the Ward, it's looking like a luxury now ... a bed, a phone, but most of all being part of the process, being kept informed and a place where they encourage parents to stay and be as involved as possible.

James is also looking more "alive", no longer such a sad and pathetic look on his face. Hopefully we will soon see him trying to play again, for now the TV keeps him entertained. He still tires easily and requires plenty of rest.

Rob has taken the last couple days off and done his turn at the hospital too, allowing me to go home and get some rest, as well as refresh myself and feel better prepared to handle the next night/day. This has really been helpful and rather a luxury, but the bills still need to be paid, so tomorrow he'll head back to work. With the hope of James heading out of ICU this doesn't seem so bad anymore and is more what I am used to when it comes to hospital time.

We continue to thank you for your prayers and support and will try to keep you updated on James' progress ... my computer time will be even more limited since I will now have to escape from James to use the comptuers at the hospital, but I'm sure Rob will do the honours if I do not :)

Happy Anniversary to Us!!

Eight years ago at this time we sat and enjoyed good food, good company and good entertainment on a day we had spent over a year planning for ... our wedding day.

Anniversaries are often a time to reflect, today I reflect on how our minister told us during pre-marriage classes that we had no idea what the road ahead of us would bring, happiness and trials. He had an opportunity to remind us of this a few years ago when Justin passed away as he wrote us some very comforting words. Unfortunately those words are packed away in Justin's memory box, for they would be great words to read again today.

The past eight years have definitely had it's happy times as well as it's trails. Today it's harder to focus on the happy, but with some thought we realize how much we can be thankful for ... if I started a list I know it would go on and on. And no matter what the case is today, we can still be thankful that our Heavenly Father is there, watching over us and carrying us through each moment. What a comfort we find in our Lord and Saviour.

And now I must go and join James again.

"The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold." Ps 18:2

Videos

If anyone has any Spot or Bob the Builder videos, or any sort of videos about trucks and cars we would love to borrow them. If you do have something that we can borrow they can be left in our mailbox with your name and we'll return them as soon as we can. Thank you very much.

Fevers

One thing I forgot to mention in my quick babble was James' fevers. Part of the urgency in getting James under control last night was also the fact that tylenol was not helping his fevers and they were continuing to rise. They were beginning to worry about seizures. When you have a fever your body also breathes faster, so this was working against his lungs, as well as making his heart rate rise into a very unhealthy level. His blood pressure was also high because of the stress on his body.

I am thankful to report that at this time he has been fever free for over 12 hours. His fever broke around 3am, or probably some time before that. At 3:30am he woke up in one of his screaming shocks, pulling at his mask. At this time they also discovered that he had cooled down ... the biPAP had helped his breathing allowing his body to relax, on top of that his IV line had come apart and had been running into his bed ... meaning he was sitting in a very wet cold bed. He went from such a high fever to being too cold and we had to cover him in "hot" blankets to warm him up again. Thankfully his fevers have not returned.

Rob's last report says that they had a physiotherapist come in this afternoon to pat his back and help loosen up the phlegm. His breathing has remained high all day and has just now (7pm) dropped down. At 3pm they started him back on his g-tube feeds, just slow continual feeds right now, so we'll have to see how he tolerates that. He continues to sleep lots or just stare at the TV, looking so lost and pitiful.

ICU

Some of you already received an e-mail updating on James situation since Rob could not remember the blog password ... so what is to follow is a more detailed update of what he already passed along.

We came to realize that we were not going to make it through the weekend to our Pediatrician appointment on Tuesday and so yesterday morning I took James in to Emerge. It's that awful feeling of hindsight afterwards when you realize you should have done so earlier. Sunday morning we had already debated taking him in, but we held of, hoping he'd make it through the weekend or head uphill instead of downhill

Upon arriving at Emerge James SAT (oxygen) levels registered at 83% ( after checking him three times they decided this was indeed right even though he did not look to be that bad. He was quickly put on oxygen. One look at the mask and he put up a screaming fit, so we held it by his face and then eventually took the mask part off and just held the tube near his face. He did not like this blowing in his face, but with time gave into the idea, maybe realizing it helped. Eventually I was even able to get him to hold it himself, with the occasional reminder to keep it by his nose. They immediately determined that he would be admitted, based upon his SAT levels, as well as the fact that he is currently on Prednisone. Being on Prednisone makes it harder for them to get a clear picture as to the cause of his illness, since his immune system is suppressed blood work does not always give them a clear pictures. So prednisone can make the equation harder to figure out and they wanted to keep him in and watch him. Time would tell that that was the least of our concerns, just getting him to breath turned into priority.

An x-ray indicated that James has pneumonia (and for most of us who think of pneumonia as a type of cold, which is it, this term is really a very broad medical term meaning "inflammation/infection in the lungs"). Although x-rays have always indicated this, none have ever been so clear or bad as this time. Having chronic bronchitis is somewhat like saying he has chronic pneumonia, in James case this is in the bottom part of his left and right lungs. This time the x-ray came back showing that his right lung was quite full as well the sides of his left lung were inflammed.

Late afternoon we were moved up to the Ward and from there they put James on nose prong oxygen - instead of holding the tube it sits in his nose. He fought it for a minute and then left it, which was nice because we didn't even have to tape it down. Into the evening he slowly got worse his SAT levels were in the high 80's to low 90's, even with the oxygen assistance and his breathing was in the 70-80bpm. We feed him his supper via g-tube and also wonder if this made things worse. He became worked up and uptight and vomitted and they decided to call in the P.A.C.E. Team (Pediatric Asssessment of Critical Events). This is a new team that is can be called in whenever there is concern about a patients airway, breathing, circulation or neurological state. The team comes in and re-evaluates the situation to determine if something was missed or more needs to be done. So after a new flood of doctors, blood work, and phone calls, it was determined that we need to get James down to ICU where they are better able to deal with breathing difficulties. They were very quick and efficient once they realize that something need to be done, in no time everything was loaded up and we were heading downstairs, upon arrival it became obvious that they had already worked out a game plan and made the preperations for it.

I was quickly introduced to the head doctor who explained that they would need to put James on a BiPAP machine to help inflate his lungs and allow the little bit of healthy lung left to work fully. A biPAP machine is similar to a CPAP machine, which many people use for sleep apnea. The BiPAP allows people to get more air in and out of the lungs without the natural muscular effort needed to do so. Upon arrival to ICU James did not talk or move, except for his eyes. He was using all his energy to breath. They did the prep work and then were fully surprised at how much energy and fight there was in our boy when it came time to put the mask on, he managed to get a few good kicks to the jaw of the nurse and fought for a few minutes before he slowed down and began to realize it helped. After his initial fight he whimpered and fought sleep for almost two hours, but did not try to take the mask off again until during the night, when he woke up several time in a state of panic and shock and tried to rip it off ... poor guy.

James spent all day on my lap and would not allow me to put him down until he was moved to ICU. After they put the biPAP on him he did not want to go on my lap but just wanted me to hold his hand ... I could not let go of it unless he was soundly sleeping and every now and then in his sleep he would reach out for it. Teddy and blankie also became dear friends right from the beginning of the day where he clung to them when on my lap and later his hand had to touch Teddy at all times. He would put his hand on top of teddy and then wanted my hand on top of his.

At 4am they had to do blood work again and after three tries hardly managed to get enough to do the tests. James was so exhausted he hardly fought and the only cue that he was still awake was when he said "all done" each time they took the elastic off his leg or arm (only to have them try again in a new spot). After that he fell into a much better sleep and slept "good" until 8am. He has been sleeping on and off so far today. I left him at noon hour, Rob came to take over so I could get some sleep. Shortly before I left they took him off the biPAP thinking that he was doing better. They put him back on the nasal prongs but within five minutes it became obvious he could not handle it, his SAT's dropped and his breathing was up in the 80 bpm again. I left as they said they would need to put the BiPAP back on, I could not handle to watch him go through it again and knew if I stayed he'd end up on my lap again as he prefers mine over daddy's ... and sleep is really a must.

Rob has since reported that he fought the mask and it kept leaking, so they put a new one on. The original one covered only his nose, this one covers his nose and mouth. He finally fell asleep and his SATs started to climb back up again.

We pray that the antibiotics may work quickly to reduce the inflammation and allow him to breath on his own again. We continue to covet your prayers, knowing that the Lord is ever present.

"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." Isa 41:10

Fevers, Lungs, Reflux, etc.

We've been "enjoying" nighttime wake-ups and instability for almost a week now, but until today our days have been still going pretty good. James is more cranky and clingy at times, requiring some extra lap time and patience, the girls have learned to tread carefully around him during grumpy times, but mostly the days go by pretty "normal". Last night we seen his fevers start earlier then usual, not come down after tylenol, and his breathing enter the next level of unstability. He also woke in the same state, which has usually cleared up by wake-up time. Today, after things settled down a bit, his "normal" breathing has stepped up into the 60-70bpm area. Normal for children is around 20-40bpm. Fevers and "coughing fits" began again around supper time ... so we're looking forward to another sleepless night! :(

This episode has been discouraging as we had really thought that we had reach a more stable time with James now that we know more about what has been ailing him in the last year. We realized that there would be more ups and downs, but considering the recent treatments he's been through and is going through we had thought at this stage things should progress forward and not backwards. We are questioning how much of this is reflux related as we first seen a couple days of "coughing fits" and then the fevers set in. Our first step was to get a new bottle of his Losec medication. Coincidently all this start the same time we started on a fresh bottle of the medication. Although it's unlikely it is the medicine, the phamacy was in agreement that the first thing we could do is get a fresh batch and see if this helps. We received our new batch on Friday and it normally takes a few days to kick in, so by tomorrow if that was the problem we should no longer see these "coughing fits"(which are happening more often). Unfortunately, even if it's as simple as that (which we're now doubting since he still had coughing fits today) and we get the coughing fits under control we still have the lung issue to clear up again.

Regardless we have an appointment with the pediatrician on Tuesday ... as long as he can hold out until then.

With regards to his prednisone, he seems to be handling it okay, unfortunately the eating side effect wore off some time ago. He still has the round face though, so he still looks nice and healthy. He seems to have adjusted to his new mickey tube and doesn't complain as much about it hurting anymore. For the first couple weeks he did not like feeding time at all, now he loves to help us by opening and closing the cap at the beginning and end and helping to push the syringe for his medicine and flushes. He still shows some discomfort and is not near as relaxed when hooked up as with the old one, he realizes that the slightest tug on the line goes straight to his belly (versus the tape that used to offset the worst of it before) and is very cautious.

Saturday Family Time

Just a few pictures of our recent Saturday family times.

Last Saturday they had an Emergency Prepardness Day down at Bayfront Park. The park was filled with every type of emergency vehicle, persons, things you can imagine ... and more. It's amazing the many different "specialities" involved in emergencies. Demonstrations, vehicles, information, etc were available for adults and children. The kids got their opportunity to climb into police cruisers, ambulances, coast guard helicopters and boats, as well as enjoy demonstrations of what to do in a house fire and how to leave the house or trying to put out a fire (with the assistances of a firefighter of course). Marietta who is usually far from shy seemed to have a respectful fear of all these and was a little scared to get too involved, but both girls had lots of fun collecting the free goodies, candies, treats, balloons and watching the puppet show. James just loved all the different trucks and we have a whole collection of truck pictures now playing on our computer.









Police, Ambulance and Coast Guard Helicopter


Yesterday we decided to take a walk down to Felker's Falls. The girls have a great fascination with waterfalls and always love these outtings. They especially get excited when we can get right down to the bottom of the falls. The main trail at Felker's Falls was designed for the general public to view the falls from the top, but with a bit of searching and lots of climbing we managed to get to the bottom. I am especially thankful for how well my pregnancy is going so far and that I am able to enjoy these outtings and not have to spend all my time sitting on my butt. It's interesting to see the difference in the girls abilities. Rebecca is our more athletic/active child, but yet when it comes to climbing her clumsy genes (strong ones for her) really come out, that along with having a bit more fear, especially of heights, makes her a nervous climber, even though she really wants to keep up with her sister. Marietta on the other hand is not at all an active child, but absolutely loves to climb and get right down in there, and she's pretty good at it too.








The far right picture above James is pointing to an airplane ... or where he hears ones. There is definitely nothing wrong with his hearing, he has a great fascination with airplanes and always points them out to us.

Nighttime Fevers

So we're back into the nighttime fevers again. We've been doing good for the last bit, three weeks with no fevers ... probaby the longest straight no-fever period we've gone. This time we're only see fevers during the night, during the day he has ups and downs - fine for awhile, cranky and clingy for awhile. Today he had a really good day, energetic and playing nice, looking better also ... maybe we'll be done with this round quickly :) and then some good sleep again :)

We had thought that the good stretch is due to the fact that his lungs are finally somewhat more under control. The Losec is controlling his reflux, keeping him from aspirating into his lungs. This should be keeping the food out of his lungs and bacteria infections under control. So our biggest battle is getting rid of the inflammation, which the Prednisone is suppose to be doing. With him doing well and remaning healthy we would be able to get a good idea at the end of the month whether the Prednisone is actually helping. This may throw a loop into that.

It becomes a question of whether we just have to accept that unexplained fevers are a regular part of his life, or whether we have to each time question "now what is this all about?". This time we see a new symptom, which started a few days before the fevers, he has had these little "coughing" spells ... more like he's clearing his throat and he's uncomfortable and says "hurts". These happen mostly in the evening or at nighttime. So we're thinking that his reflux is acting up again, but before we go running off to the doctors again we have to give it a fair chance to clear on it's own ... but while we're giving it a fair chance we're losing more time out of our "fair chance" of no interferences on the Prednisone, a drug we really don't want to be on any longer then we need to.

But hey, maybe how he was today is a sign of how he'll be tonight ... I'm hoping ... because I've really gotten to liking undisturbed sleep and spending the whole night in my bed (yes I know that will all change regardless soon). We've noticed how James really likes the full nights of sleep too, ever since he's been sleeping thru the night he's decided that he really doesn't need to sleep as long ... getting him to sleep by 9pm is a challenge and he's full of energy and ready to go again by 6/6:30 am ... plus he's decided to shorten his naps from 2 hours to 1 hour.

Removing the Shrub Look

These first two pictures were taken two years ago, our first spring in this house. Don't you just love the big huge shrubs covering half of the front window? We sure did :)

This pictures is actually taken after some improvement had been made because there use to be a huge "tree" (like a "Christmas" tree, but I think it was just a tall overgrown shrub) growing on the other side as well .... covering the whole front porch and reaching up to the porch roof. So if you sat on the front porch you got a lovely view of ... yes, you guessed it ... a shrub!!

Being a rental home and not wanting to sink our own money into it, we were somewhat limited on how to change the "shrub" look. Last spring we ripped out the overgrown shrubs that covered half our living room window and transplanted some smaller shrubs from the back yard. Already a great improvement ... especially for little James who suddenly had a wide open view to the world outside.

We were still left with an oversized box that I really didn't like, and not being home much last summer it quickly became an oversized box of weeds. A look at the front of the porch told us we had to keep something in front of it, so this year Rob ripped apart the box and made it flower box size. This also required us to move the stairs as they no longer had a box to go beside.

Here is the mostly finished results. A fresh coat of paint on the box, some flowers in the box, and grass growing on the hill and it will be done. We would have loved to get rid of the hill all together (on both sides) but ... ya ... now that's a project we'll leave to the dear owner to tackle some day, for now this will have to do. And the bright side is that the kids will still have their little hill to tobaggon on ... they spent a lot of time on there this past winter so I guess it's worth having.

Endocrinologist

On Friday I took James in for his six month follow-up appointment with the Endocrinologist. For those of you who do not know what an endocrinologist is, as I know I didn't a year ago, this is a doctor who specializes in the endocrine system. The endocrine system is a complex group of glands. Glands are organs that make hormones. Hormones control reproduction, metabolism (food burning and waste elimination), and growth and development. Hormones also control the way you respond to your surroundings, and they help to provide the proper amount of energy and nutrition your body needs to function. So basically the endocrinologist deals with hormone related issues.

We first seen the Endo Doc in November last year due to the fact that some of James' hormone levels had been low at the time. It was determined that altho delayed in growth he was doing okay and the low hormone levels could just be from the continue instability at that time.

I guess I wasn't really on the ball on Friday because I didn't really expect much to come out of this appointment seeing as the last time we'd gone it was short and sweet. Well it seems James has really not gained or grown any in the last six months. This isn't really a surprise, we knew this, hence the reason I should have expected this visit to involve more, but I guess I was sort of thinking the Genetic Doctor and Dietician would tackle this issue next week.

In the past six months James grew 1.2 cm and is now 83.4cm long. For anyone who would actually search through the blog you will find that I previously reported James as being 86cm (March 19). This is an inaccurate measurement of his length as it is done by our homecare dietician on a portable measuring pad and not the hard solid type that they have at the hospital. His last two measurements at the hospital on one of these have been 83 cm, so this seems to be accurate measurement. As well, he is now 2, which means he progresses to being measured standing. At this visit they measured both ways to get a comparison because of the fact that he had grown so little. When measuring lying down they consider it to be a Length Measurement and when standing it's a Height Measurement. Considering his Height Measurement was 83.6 and hardly any different I'm not sure why so picky, but now I know there's a difference! :) Whatever the case, James has gone from being in the 5th percentile to below 5th percentile.

As for James' weight he weighed in at 10.9kgs (24lbs 0oz) with his clothes on. At his last visit he was 10.6kg. For some reason I did not record his last visit in my book, so we do not know if this was with clothes on or now, but regardless for a six month period he has not gained enough and when looking at his graph we see that in the last two months he fell off his consistent pattern of following slightly below the 5th percentile. Until now we could always say that we knew he was below the charts but that he was following consistently with the chart pattern and so he was doing okay.

There are a few things that need to be considered with his weight when looking at the past 6 months, the biggest being that in December he lost 1 kg in weight while being sick and in hospital. But yet, he quickly regained this and the next month was back in line on the chart. From December to February James was struggling with fevers and what we now know as aspiration, reflux and chronic bronchitis, making him generally unwell and not allowing him to get proper rest. You would think that since these issues are somewhat better controlled now we would be seeing progress, but unforunately not. By mid-April we were somewhat concerned that James was losing weight, he was looking very thin and somewhat unhealthy. Starting him on Prednisone change this, he quickly picked up the round face side-effect which made him look much healthier, as well some good outside sun gave him better colour. He looks well now. But it is a deceiving look - as his weight confirmed. We also must look at the fact that James has been eating very well in James terms since being on Prednisone, so his weight should be much better, making us question how much weight he had lost.

So after all that babble where are we at now? Well first it needs to be determined if this is just a weight issue. If he's not gaining weight because he's not getting enough calories in a day then he may not grow height-wise either. James will have blood work this week to review how his body is doing and we see the Genetic Doctor and Dietician next week to go over that and determine how his current formula and intake is. The Endo Doc did not think that it was so much a weight issue for two reasons: 1. He's g-tube fed; 2. the blood work after his last appointment showed his thyroid function to be borderline. Even if James is not getting totally as much as he should by his g-tube feeds, he is still getting a pretty good balanced diet and probably doing better for consistency then a normal fussy or ill two year old may do.

Not knowing all too much about the thryoid I didn't have a whole lot of questions at the time. He explained that normal thyroid symptoms might be tiredness and lack of energy ... well those definitely don't describe James. He also said that sometime thyroid issues show no symptoms, which my research also said. So I did my research (oh I love the internet) and found that it took me a bit longer because "borderline" thryoid problems, as he called them, could mean more then one thing - you can have an overactive thyroid (Hyperthyroidism)or an underactive thyroid (Hypothyroidism), as well as several other issues. So my reading deteremined that James would like have the overactive thyroid as some of the symptoms do describe him - weight loss, frequent bowel movements (could just be colitis with James), perspiring more than normal; difficulty tolerating hot weather (he was actually slated to have his thyroid checked last year b/c of this but then it settled down and we thought it was just because he was more stable).

So this week when James goes for his genetic blood work we'll also have blood taken to test his thyroid again. The doctor will call us in a couple weeks to let us know what they will do if it's not or what further testing is required if it is. The other issue that needs to be factor into this is whether this is just an LPI issue. One of the symptoms of LPI is delayed growth, meaning that growth spurts come at different times then what is considered "normal". We were also told this would mean he would likely always be "small". But before we can say it's "just" LPI we have to go through the process of making sure everything appears to be functioning properly.

Doors Open

Yesterday was a beautiful day and best of all ... Rob is done school now and we can start enjoying our Saturdays a bit more by have a few hours of family time each Saturday. We started this last year, but it was cut short by James' continual hospital stays. Each Saturday afternoon we like to take a few hours to see a park, go biking, visit a waterfalls, or check out some new place ... of course they all have to fall into the description of "free". We have enjoyed these times and it's so wonderful to see the kids appreciate God's creation.

Yesterday the City of Hamilton had it's annual Doors Open Hamilton and we were looking forward to taking advantage of this by getting to view something we normally wouldn't because it doesn't fall into the "free" description. We had picked Dundurn Castle as our destination. With James' current medication situation and this being a public place with lots of traffic, we had arranged a babysitter. Unfortunately this fell through and much to the girls disappointment, who had been asking for weeks when they could see the castle, we had to find another plan.

So instead for our first Saturday Family Time we chose Puddicome Farms in Winona ... further out we figured it wouldn't be that busy and it being outdoors we figured it'd be safe for James. Well, it wasn't worth our drive and hardly classified as Doors Open (in that it's free when it's normally not) as there never is a fee to enter and they still charged for the train rides, which we did not go on. But we were right, it wasn't busy. Oh well, the kids still had some fun at the playground and it was still family time.

James did enjoy checking out some of the farm animals, although mostly he enjoyed just being able to run in the wide open space.

Thomas the Train

Normally we keep James away from sand as much as possible as it's not a good thing to get in his tube area, but this contraption kept him busy and away from the actual sand, while still being able to enjoy it.

Prednisone Side Effects

So yup, some of the Prednisone side effects have kicked in. Nothing major, just lets us know that there is truth to the claimed side effects.

James has turned into a little piggy ... in James terms that is. Some days he's eating about 3-4 times the amount he normally would. He is easily upset (mood swings?) and often his consolation is food ... not good for most people, but okay for James. He is picky tho, it has to be cheese (imitation cheese) or pasta (plain dry with no sauce). He often comes to the fridge asking for his cheese and usually shortly before lunch and supper he's at the fridge asking for his pasta. He sits on the kitchen counter or stool and chews away at the pasta, cold or warm doesn't matter to him. He used to like to eat rice crackers and pringle chips but doesn't really take to them right now ... just pasta and cheese, oh and ranch dressing and ketchup ... some things never change! :)

We're not sure if James has gained weight from his extra eating, he has an appointment next week, so we'll find out. His face has filled out, we're guessing this the side effect called round face, a common trait of this drug, and is not from eating and gaining weight. For James the extra eating is definitely a bonus if it helps him gain some extra weight ... and if nothing else it shows us that he can indeed eat normally, something he's not been doing so well on lately - he likes to chew things and spit them out again, rather then swallow it.

The other side effect we've seen, altho we can't say for sure it's from the drug, is increased crankiness, clinginess, and sensitivity ... sort of like mood swings. One minute he's okay, the next he's all worked up about something. He's extra sensitive and easily upset ... and if I dare sit down he wants to be on my lap.



"I'm a big boy"
James loves to be just like the rest of us - big plate, big fork and this time he even managed to get a knife.

Hearing Test #3 & Speech Results

Today James went to have his ears tested again, mainly for fluid behind the eardrum, but he also gets his actual hearing tested each time. The left eardrum tested as functioning fine, but the right ear still showed no ear drum movement. This could be due to two factors - fluid behind the eardrum, or wax build up. Previously he did not have much wax build up, but this time his right ear was loaded with wax. Guess I should be more faithful with the mineral oil doses ... been slacking lately and it showed. But regardless both ears passed the hearing test in the normal hearing range.

We have not yet gotten a appointment with the ENT (Ears, Nose Throat Specialist), but once we've seen the ENT we are suppose to come back again and get them checked.

A couple weeks ago I mentioned that James had another Speech Appointment, but never got around to writing the results of this appointment . This was a reassessment appointment to see how he is coming along. At this appointment they agreed with me in that he is indeed progressing like a normal child does, he just had a late start. At this point there is no reason to be concerned, but they would like to continue to reassess his every 3 months or so to make sure that he stays on track as they claim that kids who start late often have trouble with certain sounds later. One appointment every 3 months we can handle and so we agreed with this. He was on the waiting list for the Communication Support Team (they would come in weekly to work with him), but they agreed this was likely not needed and so they have taken him off the list.

I was actually surprised to see that they were so agreeable considering that fact that James still has not reached the 200 word requirement they have for 2 year olds. Our list consisted of about 100 words that he uses more frequently, he also parrots many words now, but then doesn't use them again. Since the appointment we've already seen how he is continually adding words and the list is getting longer. He has been putting two words together from some time, even very occassional three word "sentences". And altho they considered him to be delayed in his understanding we knew that there were definitely no issues there. They commented on this the past visit, (which was at our home), say they couldn't believe how quickly he warmed up and responded this time ... well yes, of course, he's in familiar surroundings and isn't been drilled to follow silly instructions. So ... we'll see what they have to say next visit, but in our opinion, he's coming along just fine.

Picture Perfect Pregnancy

26 weeks and 4 days and so far everything is going wonderful. I've been having a perfectly ideal pregnancy with no concerns so far. Sunday we reach the 27 week hurdle, usually where I give one sigh of relief that we made it at least that far. I always say I'll relax after 32 weeks, but that's not really true either, it's like reaching another hurdle knowing that the babies lungs are that much more developed. The biggest sigh comes at 37-38 weeks ... and yet we all know that even full term babies can have their difficulties.

My blood pressure has been excellent lately. There was a couple weeks where is was swinging around and made me more alert to keep an eye on it, but it always stayed in the "okay" levels and lately it's been more steady again ... not that I'm really that faithful on checking it. My sugar levels have been perfect and I can continue to enjoy my food and pig out! :) I even passed the GTT (Glucose Tolerance Test) and am officially considered NOT a Gestational Diabetic. They continue to watch me simply because I have been before and usually once you are you continue to be.

Ultrasound today showed baby is growing right on track, estimated to be 2lbs 4oz ... not that I put much stock into their estimates as they usually are off the mark. But it's a comfort to know that baby is on track and the placenta is doing it's job. They checked the kidneys again this time and all is well there too.

So ... just a perfectly rosy pregnancy so far and we count our blessing each week that passes with things going so well.