L.O.A.

After lunch today I took a very happy, excited boy home for a few hours. Upon request, we received an LOA (Leave of Absence) for the rest of the day. Since our main concern is now James' nighttime SATs and we're really doing nothing all day except wander the halls and playroom, we request to go home for awhile. Last night I had trouble getting James to go to bed at night, he cried and cried that he wanted to go home. He kept saying "no nose" "go home" "go home daddy". I guess it's my own fault for telling him that once his nose prongs were out he could go home ... gotta be careful, he understands much more then we realize.

All I had to ask was "James want to go home for a little while?" and he was off running down the hall. I had to bring him back to pack a few things and change his clothes, but oh what a smile and bounce in his step ... I couldn't get ready fast enough for him. The elevator also did not go fast enough for him, stopping at each floor, much to his disappointment. When we arrived at Parking he yelled "VAN" and was off running. I have been reminding him over and over that he has to go back to sleep tonight, but I'm afraid we're in for a upset boy come evening time.

Thankfully Marietta is staying close enough to home that she was able to come home after school and I will bring her back after supper. She has been getting a bit homesick lately and is looking forward to the family being back together. Rebecca did cry for a bit on Saturday when she found out that she would have to go away again this week, but Rob said she left with a bounce in her step Sunday night, so thus far she seems to be handling it okay. It's great to be home, even if it's for a few hours ... sure a nice change of scenery ... it just reminds me of how tired I am ... fun how you can keep tickin at the hospital but your body seems to shut down as soon as it gets home.

Nighttime Troubles

James' Swallow Video Study has been booked for Thursday afternoon. The Meeting of the Minds will come after this test and will not be until next week some time. There has been some difficulty getting all doctors together and so it was felt waiting a bit longer would produce better results then not having half the people there. We are in agreement with this and hopefully this way both our Genetics Doctor and Pediatrician will make it to the meeting ... the two doctors who understand James the best.

Yesterday we were given the option to go home or wait until after the Swallow Video. Since James has been having some troubles at nights I opted to make a decision today after we seen how he would do last night. Unfortunately his night time struggles seem to be getting worse. Last night he had repeated drops into the high 80's for his SATs and even after being woken or moving was not able to hold them over 92%. We could also hear in the breathing that he was having trouble as he began to do more forced exhaling ... usually one of our first signs that trouble lies ahead when we're at home. He did make it through the night without putting the nose prongs back on, but we debated several times whether we should. It's almost like he knew he needed them because at one point he woke to see us watching him and the first words out of his mouth were "no nose". Usually when he wakes his SATs right away come back up into a good range, but this morning they also struggled for the first little while. The Respitory Therapist said that next time it would probably be wiser just to put the prongs back on if he's continually up and down and struggling. The question becomes whether he is heading back downhill or just struggling to get up the hill.

During the day James is active and busy ... in the playroom, outside (weather permitting), up and down the halls on the cars, wagon rides ... makes for a long day of wandering behind him. His SATs will drop if he's active or crying, but come up once relaxed. To look at him you would never know why he's in hospital ... we are surprised (and thankful) that we haven't been kicked out of our nice private Step-Down ICU room.

48 Hours!

James has now been off oxygen for a full 48 hours!! This means that technically he is ready to go home ... but seeing as the doctors are FINALLY getting there act together and doing some investigation ... home is still at least a few days away. This is probably good since his oxygen levels are not completely ideal and he continues to have bouts where he drops below acceptable discharge levels (92%). Previously James did not have trouble at nights, but both Friday and Sunday night his SATs dropped into the high 80's. On Friday night they had to put him back on oxygen until the morning, last night after resettling into a deep sleep his SATs came back up to 93/94%. As soon as he woke up and got going they jumped into the 98-100%. As long as he is only semi-active or sitting his SATs are doing wonderful, once he becomes active they drop to 90%, resting for a short period brings them back in line. So we're definitely improving, but it will take time to get more consistent ideal SATs.

Our new Team seems to be a bit more active at trying to sort through the various concerns with James. At this point we're told that they would like to do the Swallow Video Study and to have the Meeting of the Minds after they get the results as this is a somewhat important tests. Important, but unfortunately I really doubt his cooperation. We have not gotten a confirmation on when the test will be done, but it will likely be tomorrow. There seems to have been a shift in concerns now that his lungs are doing better ... altho still some connection to the lungs. The Swallow Video will help with the reflux/aspiration questions which are related to the lungs, but as well they are looking at his lack of growth in the last months and have concern over his continual diarrhea.

The diarrhea is something we have just accepted as part of James and his stools are actually doing quite well considering what he's gone through in the last year and the fact that he's been on antibiotics. They have said that it could just be something that he has and will have, but they want to check again to make sure nothing is being missed. The biggest question right now is whether the continual diarrhea is connected to the lack of weight gain. Also possible, but considering he's had this his entire life, and a lot of the time much worse then now, I'm not so sure it's the cause of the sudden lack of growth.

But James is full of energy and having lots of fun now that he's allowed out of his room. As much as we want answers ... Mom on the other hand is quite ready to go home answers ... hopefully not too much longer.

Pictures

We are so lucky to have a window that looks out onto Main Street. When we first moved to the room James was still mostly in his bed but he loved watching all that went on outside. He was thrilled when we extended his oxygen tube so he could stand on the bed and hang over and watch the buses below ... now he even crawls up on the ledge and sits there watching the great outdoors where he cannot go.

Having an ECG done. All they do is put a pile of stickers on your chest and few on other body parts, turn on the monitor for a few minutes and it's done. Considering he's used to having stuff stuck on his chest/stomach this test was easy and he even helped her put them on.

How do I look?? Gotta impress those nurses!! I smell trouble
ahead ... most of the time James will not let the male doctors listen or check him out ... but the nurses ... he can be quite the ham!!

The first time I heard James laughing again. For some reason he likes the show Peep and laughs his head off whenever it's on. It's like music to a persons ears.

We now have a SATs machine sitting in our room all the time and James knows that every now and then we have to go back and check his finger. He won't let us help him, he wants to do it all by himself. He's rather impatient, the second he hears the machine beep he rips it off and we have to tell him to put it back on and let it beep a bit longer.

Freedom time: painting in the playroom, foozeball, riding the cars

Still Not Home

Well it's been a few days since I've had the opportunity to get sit behind a computer. The library closes at 10pm and if I'm lucky James goes to bed/sleep at 10:30-11pm ... so if I don't get down to the library at nap time I'm out of luck.

We're still going through the up and down process ... up and down on the oxygen, up and down with our doctor frustrations.

Thursday morning did not start off well. I woke up to discovered that the night nurse had given James the wrong formula. The nurse who answered my call agreed right away with me and we proceeded to dump and change it ... but unfortunately that wasn't my nurse for the day and when my lovely nurse showed up she just made the day continue even worse when she tried to tell me that I was wrong for she had contacted the night nurse who was sure she gave the right stuff. I refused to back down and neither would she. At one point she told me if I had some of the formula they would look into it, by that time we had already dumped it out ... and she seemed satisfied to think that therefore I had no proof. Sometime later I realized that we had thrown the old feeding bag in the garbage and there was still formula in the line, so I drained it and then poured some of James formula in another container. Upon showing her the VERY obvious difference she reluctantly agreed it was wrong and then said that the night nurse had called back to say she wasn't 100% sure anymore she got it right. At what point was she going to admit that? Thankfully it was a small enough amount that it did not seem to effect James, we can be thankful that James is intolerant and not allergic to protein and milk. We all make mistakes, but we need to know when to fess up.

That was only the beginning of our nursing trouble that day. She later came in and declared James was not in need of such a small amount of oxygen and proceed to take him off. James SAT levels struggled to stay in the 90's, especially when he became active ... her answer for this ... take him off the monitors so they stop beeping at the desk all the time!! In her opinion he looks fine so he is fine. She declared she would check his SATs every 15 minutes ... this was at 1pm ... at 4pm a student nurse finally reappeared to check, and even after he registered at 89% still no action on their part. It was easy to see James was struggling, you could see it in his neck area as well as the fact he was sweating like crazy. I didn't know the oxygen stuff was all still hooked up, or I would have rehooked him myself. The night nurse took one look at him and put him back on oxygen for the night and for the first time he had trouble at night maintaining his SATs (usually nighttime is his best time).

At the same time Thursday I also had it with the doctors. I don't even remember what set me off, but it was just so obvious we were getting no cooperation ... the biggest reason we knew was because it's the last day of the month and the next day a new Team would be starting ... and we would have to start all over again. I finally paged our pediatrician in the hopes of some guidance. By the time I talked to her I already knew that the Meeting of the Minds which they had wanted for that day was not going to happen and they are still working on a scheduling a day. She expressed interested in attending this meeting if it fit into her schedule. She also gave me a few pointers on what to demand and what to expect or accept with regards to James' progress. Although the call didn't necessarily change anything I felt better just being able to vent my frustration to a doctor who truly understands that James just does not follow the norms. As well she said she would get on top of the 2nd opinion from Sick Kids since there is no move from here for it to be done.

GI did appear on Thursday and happened to see James coughing and sputtering while trying to drink from a straw. This seemed to trigger them into some sort of action anyways, even if it's not something I'm extremely concerned about at this point. I had noticed it other times that since in hospital he would have these coughing fits at times when he drinks, especially if he drinks from a straw ... but not always. This could show something, but I attributed it more to the fact that he never drinks from a straw, it's just a new technique he hasn't gotten the hang of yet. The only thing is is that it's the same cough he was doing before he ended up in hospital ...so something to possibly questions, altho I probably wouldn't have been to concerned until I seen the problem continue.

Whatever the case, they're actually do something now ... altho I'm not sure what they're all looking at since they haven't reappeared since then to explain. They requested some stool tests ... something to do with looking at the electrolytes, as well as blood work that had to be done at the same time as collecting the stools. If they ever reappear maybe we'll find out what they're looking for ... I'm guessing it has to do with his lack of growth (he hasn't gained weight since admission ... or for the last couple months ... even tho we're feeding him more). As well they requested he been seen by an Occupational Therapist (OT) again to access his eatings. The OT did come by Friday and happened to hear him do a little cough while drinking from a straw again. She feels a Swallow Video Study would be beneficial. He would be required to eat and drink different foods and they will be watching to see what happens when he eats/drink this and where the food/drink goes. This would help us to figure out if James' is actually having food come back up from the stomach, or if the food he is eating/drinking is going into his lungs instead of his stomach. The results of this test could help us to know if it's his oral intake that is causing his aspiration problems. Although the results of this test could be very helpful for us to understand James I would be extremely shocked if he were to actually cooperate for such a tests ... they are aware it is unlikely he will cooperate (especially considering I will not be allowed in the room since I am pregnant) but feel it is worth trying. Since it is unlikely he will cooperate the OT plans to stop by more often and watch him eat as sometimes they can figure out just as much by continual assessments.

Still haven't seen the Lung Specialist. We put in firmer demand that he be contacted so we can speak to him ... previous experience tells us it will take a week for him to show up ... altho Genetics already has contact him and still nothing. The Team Doctor did tell me that the Lung Specialist does not believe James has PAP ... but he hasn't shown up to explain to us his reason he believes this. Not that his showing up is really going to help any, since he doesn't take time to listen to us, doesn't allow you to ask questions and talks so fast you're can't keep track of all he's saying. It's frustrating for us to know that James' biggest issues are his lungs and yet where is the guy when he should be the first one there? Not to point out that it's not very comforting having our biggest concern in the hands of someone who you can't even asks questions.

As for little James himself. He's doing really good all considering. Friday morning he was doing well enough that we could take him off the oxygen again. This time I felt more confident and could see he was ready for this challenge. He did great throughout the day ... SATs were a bit low after exerting himself a little too much, but they would come back up if he rested. He made it until 5am Saturday morning and then they had to put him back on oxygen because his SATs kept dropping in his sleep. I could also hear that he was having trouble. Once again I had my "favourite" nurse who happened to be on break when two other nurses came in and decided he needed oxygen. When our nurse came back she muttered some comment about them putting him back on the oxygen, but didn't argue when I stated that I could hear that he needed it. Today he did really well, after being awake for a bit we took off his oxygen and at this point he's still off it. During the first bit his SATs were a bit low but as the day progressed heo seemed to be able to hold the SATs a bit better ... we'll see how the night goes.

We are now at a point where gets 6 hours a day off of his continous feeds. So he's a free, wireless, tubeless man for parts of the day ... and loving it. He runs the halls, rides the cars, plays in the toyroom and of course his all time favourite ... foozeball. At first it was extremely difficult to rehook him after his freedom, but James so quickly adjusts and after understanding that he'll get free time again later he's okay with the idea. Usually if we have to rehook his feed or the wires he'll keep asking "no nose, no nose?" ... meaning "Do I have to have the nose thing in?". Even when he has had it put back in he's only upset for a minute and then he accepts and moves on.

We have also been looking into getting a SATs monitor for at home. Although James' SATs are acceptable to be off oxygen they are only hanging around the 92-94% area ... lower then he's ever had before even when really sick (lowest he's ever had before was 95% and that was very short term, he's normally 98-100%). If he can hold the 92-94% for 24 hours then they will discharge him. This makes us a bit leary, knowing that when active he has trouble holding them in this area. It also makes us concerned about future issues. We know he has lung issues that will not go away. We also know that he does not display the normal signs of a person who is low on oxygen ... just ask the nurse who checked him when he first appeared in Emerg ... they kept checking and checking, this way and that, before they finally accepted that the machine was telling the truth and this kid needed oxygen. Unfortunately we found out that none of James' current coverages will cover such a machine ... and well ... knowing how overpriced medical equipment is we shouldn't have been too surprised at the price of these things. Now we must weigh out whether this one time experience warrants getting one.

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.