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.