Two Days!!!

The GJ tube lasted TWO DAYS!! Two whole days ... that's it ... after all James went through!!

Sunday James was back to himself, happy and cheerful, playing nicely, waving and smiling to everyone ... it was so wonderful to see. Sunday evening as I chatted on the phone James decided he was going to do some mechanic repairs on his Little Tikes car .... he lay under the car and banged and clanged and was having a hay day ... then he decided he was done, and his tube happened to be stuck in the door ... out came James, out came the tube. James didn't flinch or realize what had happened, but I just took one looked and started to cry. He's been through a lot and I haven't cried since his first days in ICU ... but I cried this time. When will it ever end??

Why do we always learn lessons the hard way?? One look at the tube told me why it came out and that it would never have lasted ... I would never have agreed to a GJ tube if I had known there was no balloon, disk or bar to hold it in place. It was quite literally a tube and the only thing holding it in place was the tape that you can see on the picture I posted the other day. Nobody told us this ... they told us it was anchoring tape, but we were given the impression it was just for the healing process and that it would come off shortly. The tape had been a bit lose, James had been pulling at it because he was sweating, but I had no idea how important it was that it remain firmly fastened. No matter .... even if I had known I can tell you right now the tube wouldn't have lasted a whole lot longer. James is active and his g-tube often got tugs ... that's the whole point of having a balloon or disk in the inside ...to keep it in place.

Since then I've gone from being upset to frustrated that the radiologist actually thought that something like that was going to stay in the child. And it seems nobody knows anything about these tubes because the doctors and people we've talked to today had no idea that it was simply held in by tape and said they would go speak to the surgeon to see if anything else is available as surgeons often think different the radiologist. Everyone with their bright ideas but nobody making sure it's done right or that it will truly work.

Whatever the case, if they are going to put another GJ tube in it has to have a balloon or disk that will keep it firmly in place and it will have to be done without sedation or anesthestic. We refuse to allow them to put him under again ... pinning him down for ten minutes may be traumatizing, but not near as traumatizing 0r dangerous as all he went through for the sedation and anesthetic. Once again we've learned never to take things for granted, never to assume the doctors know what they're doing and to always asking every question, even when we think it's the simpliest and stupidest question.

So for the time being they've put an ugly g-tube back in James' hole (these tubes get uglier and longer every time) to keep it open and we've gone back to feeding him just during the day. He gets upset that he can never be disconnected, but even having him hooked up just when he is awake means he isn't getting enough formula in a day ... and his weight shows it as it was down again today. We've also come to realize that no nighttime feeds does not seem to help his deSATing issue, although with the sedation and anestetic throwing things off we do not know what's contributing to the worsening of this situation.

Saturday night he had to be moved quite a few times to keep from deSATing ... last night it seemed like I was readjusting him every 15-30 minutes ... needless to say I didn't get any sleep and he was awake often, altho he didn't seem none the worse come morning time ... bright and chipper like normal. Moving him makes his SATs come back up, but not long after they're down again, even if he's still laying in the same position that brought them back up ... so that trick no longer seems to be doing the trick ... and now we're questioning oxygen again. But this could all be sedation related also as we have not had a repeat x-ray done since Friday (we were suppose to today, but they never showed up) and every doctor I see says that the x-ray was awful and it's unbelievable that he doesn't need complete oxygen. But it's also been suggested that when it was taking he was having a spasm and it may not be near as bad as we think. Whatever the case he's having trouble with his SATs at night and his daytime SATs are not anything to write home about either.

And now we sit around with nothing happening again. The Team Meeting is Wednesday morning at 9am and at that time hopefully some decisions will be made. They are not doing anything about the tube right now, except researching what options are available for it ... so it looks like another week will be shot ... by time they have the meeting and then implement any bright ideas they come up with. We've also sent them back to question whether we need to keep James on prednisone ... it hasn't helped thus far and we would really like him off the drug if it isn't doing anything ... another question to be discussed at the meeting. The sad thing is that James actually called the hospital "home" the other day. And the times we took him home he actually wanted to go back ... I wasn't fast enough at getting ready to go. It's sad, but I suppose it's good too ... at least he doesn't hate it here.

I better go rescue James from the volunteer who's playing with him ... he doesn't like to be left for long, even tho they do the exact same things with him as I do.

This Weeks Pictures

The old Mic-Key button tube

The new GJ tube. I don't know the official name of this tube. This is also not what it will always look like. From what I understand the tape and small "box" are to anchor it for the time being. I haven't a change to talk to the right person to find out when we take that off.

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Thanks Dad for the use of your DVD player ... Thanks Laura for the use of your "truck" DVD. After we lost our private room this was a much better way to go then dragging one of the big huge TV's and VCR's into our tiny room each time he wanted to watch TV.

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Although he doesn't really eat much anymore ... at least not off the food cart ... James still can't wait for the cart to come. He asks for is by saying "coming, coming?" or stands at the door waiting. Then often doesn't even touch what they bring or wants my food instead.

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Lunch today! Usually by time the girls and I get home for lunch on Saturdays it's late and we're hungry and miserable, so this time I scrounged up some things and we had lunch together in the lounge area. Notice James who is busy stuffing his face and hardly could take the time to look up at the camera. This is the first he's actually eaten since his procedures (altho he's been offered lots) ... and he chowed it down ... guess he's rather sick of the lack of variety he gets off the cart ... I don't blame him.

Good-bye Beautiful Mic-Key G-Tube

After waiting all of 8 months for James' nice button Mic-Key G-tube we got to enjoy it for all of 8 weeks and now he has an even uglier long tube hanging off his belly again. It suddenly dawned on me that if I didn't show up with a Mic-Key tube on Thursday for his tube change then we would have to wait until the next time they changed the tube as this is not a tube that can be changed at home ... I'm usually more on the ball. I spent a good part of my time at home on Wednesday trying to see if I could get him a Mic-Key GJ tube, but there are only a couple places that deal in this type of medical equipment/supplies and a GJ tube is even less common then a G Tube, so nobody stocks them. In the end it didn't matter as the doctor who put the GJ tube in recommended that we wait another year before putting a Mic-Key. He said due to the design and size of James' bowel we would likely have clogging problems with the Mic-Key GJ. So ... at least whole year with big ugly tubes ... but, if this is going to help everything else it's not so bad afterall! :)

Thursday night James slept well ... except he needed oxygen again. By 11:30pm we had adjusted and moved him often enough to realize it wasn't helping and so we put the nose prongs back on. Before he was only taking 50-75ml of oxygen when hooked up ... this is really just a whiff of air and what they use on neonatal babies ... but it works for James. This time he needed 160ml ... still not really much, but more then what we've been getting by on. He slept after that and unfortunately woke up earlier then I had hoped ... but at least he had to go down early this time so I didn't have to distract him from food too long ... it being over 24 hours since he had eaten and absorbed only a small amount of formula (he threw up everything he ate yesterday afternoon, to the point of drive heaves) he was rather hungry.

They came for him just before 9 and of course he knew something was up, but remained relatively calm, although constantly asking me to confirm "no hurt". It's hard to answer that one honestly ... really he won't be hurt, he'll be asleep ... but since hurt to him seems to means any trauma then I'm lying to him. I held him while they gave him the initial sleep medicine through the IV, I like this way as he's still comfortable in my arms and not all worked up because they've taken him or made him lie somewhere. I left the room as they tried to stabalize him since he was kicken and squirming and trying to get off the bed ... doesn't this sound like what we went through a week ago.

The procedure is actually quick ... I feel asleep while waiting, but it took them about 45 minutes before they came out to confirm it was done. I didn't think too much of this timing, even though I knew that the actual procedure only takes about 10 minutes ... but they had to put him under so I expected it longer then just 10 minutes. The nurse came out to let me know that he was done, she told me there was absolutely no way we would even have been able to sedate him the day before as it took almost adult dose to keep him asleep. She said the anesthesist couldn't believe how much they had to give him. But then of course she rushed on to tell me that it was safe and they knew what they were doing, etc. etc. Regardless three times in a one week period of such high dose we remain completely thankful that our Heavenly Father watch over him and nothing happened to him (especially considering we know of a child who went for a simple procedure and because of the anesthetic never woke the same). I was then told I could go wait in the Post Anesthetic Unit until they came to get me, which shouldn't be long.

An hour and forty-five minutes later I was still waiting and becoming rather concerned ... maybe I misunderstood where I was suppose to wait ... but then I've waited here enough times I really knew that that's where I was suppose to be. They finally called and I found him sitting in bed quite calmly with oxygen on. They put a mask type on ... don't know how they managed that without him ripping it off. The first thing he asked when he seen me is if he could take it off and then proceeded to rip it off ... which they replaced with nasal prongs and he was fine with that. He kept asking to go and seemed completely fine ... boy was I glad to skip the screaming and kicking that he often does and what we had gone thru the day before.

I was then informed as to why it took them so long to call me, as well as why the actual procedure took long. When they first sedated James his SATs dropped into the 60's and so they had to work to get him back into line. Then when they went to bring him out of sedation and take his ventilator out he went into what seemed like a bronchial spasm (like an asthma attack) and so they had to resedate and ventilate him. His breathing went up, she said high, but I found out it was only in the 60's. When I told her that was normal for him she said "oh, wish you had been there to tell us" ... well ya, but you won't let us be there. I guess his chart says his normal breathing is 45 ... he does breath that, but normal is anywhere from 45-60 for him. Regardless they were concerned about his breathing and sent him for an x-ray which showed his left lung to be in rough shape. I'm not sure what made them decide to try again, but eventually they brought him out of sedation and he was fine with a bit of oxygen ... and that is how I found him.

I can see why they wouldn't want parents around for the entire procedure. I like to think I wouldn't panic too quickly, but dipping into the 60's and knowing they had trouble with the sedation makes me even more concerned about future sedations, which we know he can't avoid. A two year old receiving almost adult doses concerns us. Sometimes you rather not know things, but yet we realize that this is important to know so that we don't just take anesthetics lightly.

He made it back up to the ward as a "happy" child ... and then the fun began ... AGAIN. He didn't know whether he was coming or going, what he wanted, how he wanted it, why he wanted it, where he wanted it. He'd be crying and crying to eat but then would throw anything and everything we brought him ... and we brought lots of options. Once again he was wobbly on his feet, but he wanted to walk and play ... he would walk like a drunk and trip and fall, making me worried we'd have another accident ... but get oh so mad if he didn't get his way. Nothing made him happy ... especially because this time I refused to walk him for hours in the stroller and since he refused to go with a volunteer this time he just wasn't getting a ride. I finally got him to fall alseep after screaming and crying and throwing himself around. Unfortunately he didn't wake up a whole lot better ... for a bit he wasn't too bad, but as the night wore on he became worse again. Thankfully I had company and therefore an assistant later on and so together we walked and talked ... didn't make him sleep, but kept him quiet ... until we got back to the room. After some kicking, crying and throwing himself around he finally fell asleep.

Once again by 11:30 he was on oxygen, about 100ml this time. He didn't sleep as deeply and soundly either ... waking often, wanting me to hold his hand, or suddenly sitting up and asking for a drink, and even deSATed once while on oxygen, but readjusting helped that time. This morning he woke up more himself, altho after an hour or so I realized he wasn't completely back to himself, but this time somewhat more toleratable. I was getting to the end of my rope again because he was so tired but refused to sleep and was miserable ... but then Daddy, Marietta and Rebecca showed up and he perked right up and was more himself. We went for a walk together, played in the playroom and had lunch together. Lucky daddy, or should I say talented daddy ... after we left James fell asleep in a couple minutes without a fuss.

I did run into the doctor yesterday who told me James' x-ray looked "horrible" and so they will need to repeat it again in a few days. Clinically he's doing okay, so likely it was just a bronchial spasm that made it look so bad. We're hoping that's the reason and that all the drugs is the reason for the need for oxygen again and this will clear up in a few days ... please, we really want to go home.

The "Odd Child"

Our poor little boy had a very rough day today. Yesterday, on the other hand, was a nice day. With nothing that needed to be done, since we were just waiting for the GJ tube and a SAT monitor, we were able to take off for home at 10 a.m. ... only to be told we had to be back by 6-6:30 so they could put an IV in ... a nice welcome back. Usually we don't go back until 8:30-9pm ... but regardless we had a nice stay home.

Today we got to the day for the GJ tube. James had to be off feeds for 6 hours prior to the procedure and was scheduled for 1pm ... another long morning of distracting him from food. Since we do not want to feed him at night, this means he's gone quite a while without food ... IV fluids do not help an empty stomach. Twenty minutes before 1 they came in to give him his "sleepy" medicine. He would only be sedated (or mellowed) for the procedure to avoid a whole general anesthetic and another intubation (tube down throat for breathing). Only a couple minutes later they came back to say that they were behind schedule and he would not be going until 2pm. But ... he should get sleepy so it shouldn't be too bad and hopefully he'd go for a nap and stop asking for food!!! YA RIGHT!!

Fifteen minutes later he's wired and irritable, twenty minutes later her starts crying, and cries for the next twenty minutes. Meanwhile his SATs keep dropping and then he starts gagging and coughing. Finally he has to go on oxygen, which just upsets him more, but the gagging settles down. It seems to me that this medicine is not working, but nobody seems all that concerned, they just get an extra dose and we're on our way! They give him a shot of morphine to help with the sedation and finally at 2:20 we arrive in the room where he, of course, realizes something is up and becomes even more frantic. After waiting for the doctors approval they give another shot of "sleepy" medicine ... and another, and another ... plus an extra morphine. You would think after the second shot they would clue in that this is definitely not working for the poor child, who is not in the least bit settling down, and besides having slightly heavy eyelids is wide awake, fully alert and beyond irritable. But they push it to the limit of what they can give him ... and the poor child has to deal with the consequences afterwards.

It is finally decided that this is not working and he needs a general anesthetic afterall. A call to anesthesia says there is no one available at that time and so we much go back to our room and have it booked when there is someone available. I asked if this happens more often and the nurse told me that "the odd child" does not respond or it has the opposite effect. That's our James.

All James wanted to do is eat ... he is irritable and crying and we think food will at least settle him down. So we get him some food and he eats, then he's sort of dozing off in the chair but only closes his eyes for two seconds before he starts crying up a storm. Then he starts to vomit, and cry, and babble about anything and everything, and ask for this and that and everything when wanting nothing .... and did I mention cry, not just wimper, but a nice loud upset crying. The boy is totally confused and totally unhappy ... and totally driving his mom nuts as nothing helps. Although the medicine didn't mellow him to sleep, it did mellow his muscles/body as he couldn't stand well and seemed "relaxed" if held. Unfortunately his mother was not very bright and forgot this point and when she took the tray off his high chair and turned for two seconds: he fell out, hitting his head on the floor ... of course with witnesses ... and then shortly afterwards vomits again (this was not the first time) .... and so more torturing as they had to access him and then call the doctor and reassess, etc. It seems the fall did not do damage, the vomitting and irritability began before hand and he seemed fine when assessed.

After almost two hours of trying to figure out how to stop him from crying and trying to get him to sleep I discover that only thing that will quiet him is a ride in a stroller. And so begins a couple hours of walking around the hospital. He is tired, but does not sleep. The ride keeps him quiet, if I stop, he cries ... my arms are about to fall off from pushing a stroller and IV pole, nevermind I'm just tired and hungry. Thankfully I find a volunteer to relieve me for 1/2 hour while I eat and call my daughters ... and more thankfully when the volunteer comes back he actually asks to come out ... 15 minutes later he is sound asleep on my lap ... and like they predicted, once asleep he is asleep, his body is limp and he doesn't react is you readjust him ... he's definitely sleeping ... hopefully for the whole night because tomorow morning he has to be traumatized again as we are booked for 9am to have his GJ tube changed under general anesthetic this time. I sure hope his body can handle this ... once again he can't be feed and so we sent the nurse off to find out what to do with him as he vomits if I feed him and since I cannot feed him he will now be going over 24 hours without protein. When they restart his feeds tomorrow it will only be at 10ml/hour ... so it will be 48 hours before he's getting proper protein again.

But although he's sleeping I should not leave him long as his SATs were not doing the greatest and I hate for him to wake up in his current state and not have mommy there.

On a good note. They managed to find us a loaner monitor which they brought in today and we're trying it out to see how it works in comparison to the hospital monitor. We can use this until we get our own monitor ... which we're STILL waiting for quotes on ... but now that we have a loaner it's their problem if things go so slow. James continues to drop his SATs 2-4 times a night and repositioning him brings them back up, so we don't need oxygen, but we do need the monitor to know when to move him around. This loaner will be identical to the one they are looking for quotes on, so it will give us a chance to try it out ... not like we know what else is out there or what other options are available.

Another good note. I had an ultrasound and OB appointment today. All is going well with the pregnancy, which I continue to be sooo very thankful for. Baby is growing, fluid is good, placenta is doing good, blood pressure is still nice and low, sugars are doing good ... yes, there is much to be thankful for. James has not allowed me the opportunity to worry about the pregnancy and things continue to go well ... I just hope my lack of focus on baby will not make me miss any signs. I will admit these last weeks have been very hard on accepting the idea of having a baby in the house again ... I really can't imagine what we would have done if we had a little one ... but I know the Lord helps us through all trials, just as he has helped us to keep our sanity the past 3 1/2 weeks ... there is no point in worry about something that hasn't happened, we'll cross that bridge if and when we arrive at it.

One more note ... the Team Meeting is scheduled for next week Wednesday ... I will have to wait another week to hear what comes of it as that's when I have my next pediatrician appointmnet. Hopefully results are in on the special "stains"/tests they did by that time. A lot of items have already been dealt with, but it's still wise to get everyone together so that they're all working towards the same goals.

Sigh!

Yesterday James began to cough and have a clear runny nose. This was of no concern, as he did this last time after his bronchoscopy as well, so we are assuming it is from that. But unfortunately it seems to be having an effect on his SAT levels. At nap yesterday he only SATed 90-91% and after a short LOA yesterday afternoon he came back SATing the same. Overnight he hung in that area, continously dropping into the 80's. At one point they were going to put him back on oxygen, but I asked to just try respositioning a few more times ... we made it through the night, but his levels were not good first thing this morning. They managed to pick up after an hour or so of being awake and off we went to play. Unfortunately playing drained him. I was getting ready to pack up for a nice long LOA since most of our doctor stuff got finalized quickly this morning ... and thought I should do a quick SAT check before we left. He was SATing 88/89% ... so much for going home. James has come to expect these trips home as well, so it's difficult to explain to him that he needs to stay. Possibly if he picks up enough after his nap we might be able to leave, but probably not a good idea since we know activity is effecting him too much today ... sigh ... mom has come to expect those LOA's too!! :(

Things seem to move so slow around here. A few quotes came back on the monitors we are waiting for ... but there was quite a range in the prices, so the quotes have been sent to a Tech to review and let us know if the cheaper one is adviseable ... otherwise we're looking at quite a bit more then we originally thought they would be! :( If we ever get to the actual ordering part it still takes two weeks for the machine to come in ... and we can't leave hospital until James is SATing regularly in the 90's .... sigh ... I want to go home!! :(

We are scheduled for a GJ tube on Thursday at 1pm. Considering it took 3 days to get that appointment I'm sure hoping that this thing is going to stay in long as we can expect hospital stays whenever it comes out ... sigh ... :( Since it's rather iffy whether James would actually lay still for the procedure we now have to sedate him again .... just lightly this time but still another IV line into his poor scarred veins ... sigh ... poor guy!! :(

They have decided to put James on antibiotics for the bacterial infection in his lungs. This will be a three week long treatment ... sigh ... hope his bowels, diarhea and bum can handle that!! :(

So ... if everything went really well and suddenly we had really good consistent SATs the earliest we will get out of here is Friday .... sigh ... did I say I want to go home!! :(

But after all those sighs ... we're managing ... just tired of it all and really wish we could go back to "normal" again. And I used to complain about 2-3 appointments a week. But as I spend more time here I see more people who have spent longer periods here then we ... we each have our ways of coping. As James is so complicated it is hard for us to leave him when we need to be there ourselves to discuss each thing with the doctors ... when a parent is not there or on top of things it takes even longer yet as there is no proper guidance. For some parents they are fine to let the doctors and nurses make all the decision ... James is complicated and nobody knows him like we do ... so it is hard to leave him in the hands of those who do not understand how everything ties together. But he's a trooper ...and really doesn't mind the hospital ... each night he is quite eager to go in the van back to the hospital ... for this we are thankful!!

Three Weeks Later

Well it's been three weeks now, and we still don't know when we'll be coming home permanantly. We've been enjoying afternoon LOA's which help us to keep our sanity, even if it's just for a few hours each day.

James recuperated quickly from the bronchoscopy. We had thought that this would set him back, but by Saturday morning he was off oxygen again and back to what is now considered normal. As usual, over the weekend nothing gets done, so we didn't get any answers on what to do with regards to feeding James or where to go from here. We stuck with our decision not to feed him through the night, although Saturday night we did feed him until midnight. We seen that he deSATed before midnight as well as several time throughout the night. He just needed to be repositioned and then was okay again. Sunday night we stopped his feeds two hours before he went to sleep, as it is normally recommended that people with reflux do not eat 2-3 hours before sleeping. He SATed at 95% the entire night. We will be trying this again tonight to see if it's concidence. As well we are happy to see that repositioning him now works instead of having to put him back on oxygen. We have watched him to see if he can figure out on his own to roll over, but so far no luck in that area. This still makes us a bit leary about what to do at home as I can't always hear by his breathing that he's deSATing. We have advised that we would like to purchase a monitor but are still waiting for quotes ... nevermind getting the actual machine, which takes a couple weeks to come in.

Since James was doing well and nothing happens on the weekends he was able to escape earlier then normal for an LOA on Sunday and was home for lunch ... what a nice change!!

Today we tackled the Team on the feeding issues, but didn't really get the help we expected. The doctors basically said that we could look at trying to get all his feed into him during the 12 hours we have that he's awake during the day. She also stated that kids adjust, he would get used to be hooked up all day. Let's be realistic here ... James really functions like a typical two year old, he is not delayed, he is not tied down to other medical equipment ... when disconnected from his feeds nobody would know there is anything wrong with him. If there were no other options we would resign to this and work with it ... but other options are available.

We know our choices are to put him on domperidone or to go to a GJ tube. Domperidone is a medication that increases the movement of the digestive system, therefore making foods go through you system faster and keeping the contents in your stomach low so they can't come back up. This is used in combination with Losec which keeps the acid levels down in the stomach. James' system already works rather quickly, as we often see food go through him in a couple hours, so I'm not sure how much more effective this would be. As well ... you need to trial this for a few months, see how he handles it and how his lungs are doing to gage if it's working. So if it doesn't work we'll know because his lungs will fill up again. I'm not so sure this is the answer.

So that leaves us with the GJ Tube. This is similar to a G-tube. The G tube is placed in the stomach and the GJ Tube goes into the small bowel (jejunum). No further surgery is need to change to a GJ tube. They use the same hole as his current G-tube but change the tube so that it has an extension inside which they guide into place in Radiology ... as long as he cooperates, unsedated. This has to be done each and everytime a new tube is needed. GJ tubes tend to block up easier as they are smaller tubes so more care needs to be taken to flush the line and keep it clean. They also tend to come out a bit easier the G-tubes. Since you are feeding directly into the intestine instead of the stomach you can only use continous feeds as the intestines cannot handle a large volume at one time ... we would have to start over to see how fast he can handle these feeds and how many hours he can have tube free each day.

Since I didn't get a straight answer out of the Team and their response was somewhat unrealistic I waited to talk to our Dietician. We discussed our options and she felt that we had nothing to lose by trying the GJ tube ... if it doesn't work we just pull it out and put a G tube back in. At this time we know that James' nutrition levels came up to normal levels once we put him on his full daily formula requirement, so we cannot afford to lose hours and feed and need to get the maximum amount in him each day. This cannot be done in the hours he is awake, and she agreed that it was unrealist to expect James to stay hooked up all day. She consulted with the Team and they are in the process of arranging the GJ tube, hopefully soon.

The Team also advised us that intitial tests coming back from the bronchoscopy indicate that he has a bacterial infection again. They will wait until the Lung Specialist is in tomorrow to decide whether to treat with more antibiotics or to watch clinically and see how he handles it. The Team also advised us that the CT Scan shoes that James' lungs look worse now then they did at the end of April on his last CT Scan. It is hard to say if this is because he's been ill or because of his unlying lung issues. The CT Scan also suggests that James does have what looks like PAP (Pulmonary Alveolar Proteinosis) but they will not know until we get the special tests back from the bronchoscopy, which will likely take a couple weeks.

I also got a chance to view the Swallow Video Study today. We didn't really determine much from this test. We did not see anything go into his lungs (actually I couldn't really tell much of anything from the video/pictures, gotta have a good eye to read those). James' swallowing technique is not quite "normal" but not really considered "abnormal" either. For the time being we will have to thicken James' liquids to prevent him from coughing, gagging and dropping his SATs, as times goes we can make it less thick and see how he handles it. The question is, why did he suddenly start coughing and gagging when drinking? we never had the problem before. Just another James puzzle.

Bronchoscopy and CT Scan

After a long morning of distracting James from food, at 1pm yesterday they were ready and came to get him for his Bronchoscopy and CT Scan. It doesn't matter what room it's done in ... he knows the site of trouble. One look at the room, all the people, the bed, the equipment and he started crying "no hurt, no hurt". I sat with him on the bed for a while while they finished getting everything ready as he continued to say "no hurt, no ow". Thankfully I could tell him it wouldn't hurt (at least not that part) because he already had his IV in and all they had to do is insert the med into the line. I held him until he dropped off and then watch as they tried to stabalize his sedation. After a bit the Lung Specialist dragged me out to sign some papers saying I didn't need to watch the detail ... probably scared that they would have a panicky parent on their hands since it was taking a bit to get him stable.

The bronchoscopy was completed in the PICU unit (technically now called PCCU - Pediatric Critical Care Unit ... altho everyone still refers to it as PICU). The Lung Specialist came after to say that he found a lot of mucas in his lungs as well as a "milky" substance. He did admit in the many bronchoscopies he's done he's never seen such a substance. Milk usually has a fatty look, but James' formula is not normal, so it could still be formula. The Specialist still hold that we're likely looking at aspiration, which we know we are, but all the normal tests have been sent out, as well as the special tests. Some will come back next week, some will take a couple weeks.

From the PICU Unit (for those of you who know the hospital, what used to be Ward 3B is now PICU) James had to travel down to the Radiology to have his CT Scan. We had a bit of time to wait, so I got to sit with James for a bit while we wait. This time I got to have a look at what he looks like ventilated ...and boy am I thankful we avoided that in ICU as it was not nice to look at, and I only had to for a short period. I think what made it look the worst is that he was sleeping with his eyes more then half open. They were surpised at how often they had to give him more propofol (sedation drug) to keep him from moving around. At one point he started swinging around, kicking and squirming, but settled upon finding my hand.

We have not received any results from the CT Scan yet, but should hear on that today. It's pretty ironic that the last time we needed these tests done we couldn't get them done on the same day due to having to move him while sedated ... and they only had to move him a couple rooms down that time ... here they took him half way across the hospital and down one floor ... talk about politics!! Regardless they both got done at the same time this time and I was able to stay in long enough this time to actually get some pictures, but had to leave because I am pregnant. It's also amazing the difference on what they allow when an inpatient versus an outpatient, normally you get to see them drift off and are quickly asked to leave, this time they didn't care whether I stayed or not ... only the pregnancy thing got in the way.

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After the CT Scan they kept him sedated until they got him back up to PICU and then slowly let the sedation wear off ... once again I was allowed to sit with him, whereas when an outpatient they do not let you in until they've taken all the tubes out and he's fully awake (and usually screaming for mom). He arrived in his room shortly after 6:30pm, on 75ml of oxygen, just a small puff, but still needed to keep his SATs up. While gone we also lost our lovely private room with a bathroom ...and are now stuck in the smaller size semi's with no bathroom :( still in the step-down unit. I was surprised we hung onto our nice room so long so I shouldn't complain, but it really sucks downsizing, talk about absolutely no space in our new room ... never mind how many times I go to the bathroom in a day :) and my cot doesn't fit either :( oh, I want to go home!!

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The night went well, James stayed on oxygen and only dropped his SATs once, likely due to how he was sleeping as once he rolled over he was good again. We ran into a bit of a dilema that we should have asked about before the procedure as it was now evening and the weekend and no doctors around ... should we feed him at night?

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We had just cleaned out his lungs ... we believe he aspirates, especially at night. We now have clean lungs, it would not be wise to start refilling them by feeding him at night. On top of that he had not had his Losec (reflux) med that day due to sedation. But ... we could not withhold his feeds as he is not allowed to go without protein for more then 24 hours. The nurse called the resident who was of no help, saying that the bronchoscopy team said to carry on feeds as normal ... not like the had ever asked how we normally feed him. When the RT (Respitory Therapist) came around he agreed with us that it was not wise to feed him until we got things sort out ... but not being able to make that decision he did say that 12 hours of feed should not do much damage and then to make sure we get it sorted out in the morning ... as well, if his SATs dropped at night to stop the feeds. Considering he was on oxygen I doubted we'd see him deSATing all that much ... which we didn't.

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Today we are feeding him most of the day (short break at naptime) and then we will not feed him at night. This was just our decision, when I left at lunch time the Team had not come back to say what they thought would be best, but the Resident had been in earlier and agreed with our concern, saying the Team would review it. It looks like we'll be heading for a GJ tube, it's just a matter of how quickly this can be done. And then we'll have to see how he tolerates it.

GJ Tube?

Last night James was taken off his continous feeds at 12am and put on IV in order to be prepared for his bronchoscophy today. If all goes well he's scheduled to go at 1pm today for both the bronchoscophy and the CT Scan. The bronchoscopy will be done in PICU, so if a room is no longer available we will be unable to do the test.

At 12am we stopped James feeds. From 12am to 2am his SATs dropped off and on ... long enough to get a strip for qualifying for Home Oxygen .... until they realized that after it drops for 2 minutes they have to have another 3 minute strip showing that putting him on oxygen helps. So they reset up the machine and got the oxygen ready for the next time it dipped ... but it didn't dip again. Two hours after finishing his feeds it came back up into the 95-98% area and there is stayed the rest of the night.

Coincidence? We'll have to test it out and see, but since we know James' has reflux it could be that the continous feeds have been the reason for our nighttime SATs drops. Considering the fact that we slowly increased the amount of his feeds so that he doesn't have to be hooked up as long, it falls in line that we started having more SAT problems once the feeds became larger at nighttime. If this ends up being the answer then we will have no choice but to change James to a GJ tube (tube inserted just past the stomach into the intestine). Not what we wanted to do, but if it means healing his lungs then it's worth the inconvenience.

Thursday

Rob stayed overnight with James last night and I was allowed to sleep in my own bed for a change. Rob took the day off to so he could go with James to the Video Swallow Study since I am not allowed in while it was being done due to radiology and being pregnant. This meant I also got a day off from being at the hospital.

In the morning I went to see our pediatrician. I had booked an appointment last week when I spoke to her, thinking we would be home by now ... but no such luck. I decided to keep the appointment so I could go over things with her and get her opinion/insight as well as keep her up to date on our side of things. I must say that we are much happier with our current Team and they seem to be doing what they can which also relieves our frustrations. We basically just went over all that is going on. She did suggest that even if we were to proceed to a Lung Biopsy it would be better to do it when James is healthier ... otherwise we could get false results because we would be picking up more of what has recently irritated him and not the cause of his unlying lung problems. She also thought it would be better to have a second opinion first, another opinion on if the biopsy is necessary and also to make sure that whent he biopsy is done they look at all possibilities. She also gave a few other suggestions and information about various drugs and treatments.

Rebecca came home around noon hour and Marietta after school. Rob and James came for an LOA at supper time ... so after 2 1/2 weeks we were able to have supper together again. The kids had a chance to play together and feel like everything is "normal". It is unlikely James will get another LOA for a few days seeing as we're counting on the bronchoscopy setting him back a bit ... so we're enjoying the time we have.

The Video Swallow Study went relatively well. He did cooperate enough to get some pictures ... altho his ears are too good and he would hear the machine go when they went to film and would turn his head to look at it ... thus not allowing them to get a good picture. I will get a chance to look at the video tomorrow, but we've been told they did not see anything go into his lungs.

I also got a chance to talk to our Endocrinologist today to get his input on James' lack of growth. We already know that James' thyroid is fine, but our Genetic Doctor express some concern that his hormone levels remain low. The Endo Doc said that this often happens when unwell or not getting enough nutrition. For the first couple year growth hormones are not as important but nutrition is important. He is just over that two year mark, but considering his nutritional struggles all his life he feels this would likely be more the issue. He also said that if it's a hormone issue then you usually still see weight gain, but not height ... James is lacking in both areas. There are additional tests that can be done, but they are not just simple blood work, they require a good part of a day to be hook up to IV, given special meds and then blood work. Since James' nutrition levels have been low he would first like to see his nutrition levels up to par and then we can retest his hormone levels to see what they are doing. Yesterdays blood work showed that for the first time James' nutrition levels were up to par, likely do to the additional feeds he is not getting, but we have to see that consistently before we retest the hormones ... and of course, if he grows there won't be a need to retest.

And now I must go bring Marietta away and James back to his second home. Grandma is coming to pick up Rebecca for the night and tomorrow ... she can't wait ... good thing we brought her home, just so she can want to go away again :)

Wednesday

On Wednesday, after a busy morning we were able to escape for another L.O.A. mid-afternoon. Once again Marietta came home for the afternoon/evening. She was dropped off at home and upon entering the house found both mom and James crashed out, being the considerate child she is she left us sleeping and went off quietly to do something. I woke up 15 minutes later in a panic because I had overslept and Marietta wasn't home ... she snuck up quietly on me and scared the crap out of me ... but she was home :)

Wednesday morning was busy with various things, making the morning pass quickly. Tuesday night we had to put James back on oxygen when his SATs kept dropping to the mid 80's. His SATs had started off low when he went to bed so it wasn't surprising that he didn't make it through the night. Over the past days we have not seen his SATs above 95%, which makes us wonder if he's getting worse again. Over the weekend we were having times during the day where he was actually registering at 98-100% when relaxed and we thought he was finally making good improvement.

The morning discussion shifted to whether we need to start considering home oxygen. His recent SAT problems have also brought a change in the type of SATs monitor we will need to consider when going home. Originally we were just looking at a spot check monitor which we clip on his toe for a minute a few times a day and see how he's doing ... now we will need to be looking at a monitor that can be put on for the night (or day) and has alarms to let us know if he dropped his SATs. Of course that's only a 300% increase in price ... just a mere $3000 ... and we thought the first one was overpriced and were having a hard time making up our minds.

We were advised that there is a loaner program through the hospital which MAY be able to help us out, but they only have 12 monitors and all are in use right now. It is possible they may get one back soon and it would go to us then. The problem with this is that it is loaned to you "as long as you need it". We haven't clarified what this means, but we're guessing that if two months from now he's completely stable again and has been for a period of time then we would need to return it for someone who has more urgent need ... which is only fair ... but how will this help us when a month later he starts to go downhill again? So altho this could help us temporarily it doesn't seem to be the best road to go. We can't ignore that James has an underlying lung condition that makes him a "frequent flyer". Interstital Lung Disease does not go away, it can become stable, but he'll always be prone to flare ups.

James' hospital monitor machine has been changed to a type that does a print-out whenever his SATs drop. If his SATs drop continously below 88% for 2 minutes then he will qualify for oxygen coverage, otherwise we'll have to pay for that as well. He does sort of tend to drop in and out of the 88-91% area when having trouble, but if they want to get picky on that all I have to do is make him cry for a few minutes and we should get a "good" printout.

Since James has sort of be going backwards they did a repeat x-ray and blood work to take a fresh look at things. The x-ray did come back showing slight improvement since May 25, when the last x-ray was taken ... I have to ask them yet how it is in comparison to pre-admission x-rays.

It is interesting to note that during all this time James' ammonia levels have been fine (except the one test that came back high, and a repeat was normal, so seems they way they took the blood that time effected the results). Whenever sick James has no trouble with his ammonia, which is one of the biggest concerns with LPI. This is especially interesting due to the fact that James is getting more via g-tube daily and has been eating relatively well (James style) from regular peoples food. He's just been eating hospital food or my meals, mostly pastas and rices, less the meat if I can pick it out. This has prompted us to challenge James diet and see what he can tolerate. For the next little while we will continue to feed him normal foods - excluding the most obvious protein foods like meat, dairy, eggs - and after he's out of the hospital for a couple weeks we're going to retest his levels and see how he's handling this change. Cooking will sure be a lot easier that way. It's nice to be able to give this a try while at the hospital and so far it's going good.

A good portion of yesterday morning was spent with the Lung Specialist ... yes, after two and half weeks in hospital for respirtory issues he FINALLY showed up!! And probably only because he got cornered from two ends. The Respitory Therapist (who also arranges the SATs monitors, etc) happened to be the RT who works with Frietag and when she mentioned his name I took the opportunity to politely point out his lack of attentiveness to his patients. She said she was heading up to see him and would talk to him right away. While she's doing that our Team Doctor was also on the phone looking for guidance from him ... so he was cornered and finally made an appearance ... only after having been paged how many times?

The results of this visit? He feels that James has recurrent aspiration pneumonia with pneumonitis (general term for inflammation of lung tissue). We were previously told that he does not believe James has PAP, but at this visit he did say he can't rule out the "rare stuff". He also said that even if he has PAP this is only a tissue/descriptive diagnosis but not an infinitive diagnosis.

We were left with 3 options, the first not being an option.
1. do nothing, carry on as we have been with reflux medication and treat when there are flare-ups
2. repeat the Bronchoscopy and CT Scan. From the broncoscopy they will send out some special stains looking at the more rare diseases, including PAP. At the same time they can see if he still has an infection or lots of lipids (fats indicating food in his lungs) in his lungs, as well as see what changes happened in the 3 months since the last bronchoscopy and CT Scan.
3. open lung biopsy - this is an actual surgery, requiring them to cut into the side of his chest and take a piece of his lung

Although he says he is not pro-biopsy he is definitely pushing towards doing the biopsy, telling us that this will give us better results ...first saying a more definite result, but then admitting that it could result in no further information. We have opted for Option #2 as we have read that things like PAP can be diagnosed by just a bronchoscopy. We also feel that we would like a second opinion before we consider doing a lung biopsy.

So on Friday James will be having another bronchoscopy done, this time they will be sending away "special stains" to test for more of the "rare things". They also are talking about coordinating a CT Scan, but we've heard that promise before and seen what happened, so I'll be surprised if it happens. Regardless this means another sedation, intubated (insertion of a tube into his airway), and likely some breathing difficulties afterwards. Last time he had the bronchoscopy done he had some troubles the following week, so we'll see how he handles it this time when he is not doing 100% in the first place.

Before leaving for our afternoon LOA we also made a trip down to the Swallow Video Suite to see what everything looks like, figure out what would work best and give James a chance to see. He didn't like it at first since he had just had an x-ray that morning and it looked quite simliar, but after being pampered and showered with stickers and attention he didn't think it was so bad afterall.

James has been doing fine with the idea of going back to the hospital at nights. The first day I kept reminding him over and over that he had to go back, and it seemed to work ... he's accepted that he has two homes.