Not so happy campers

Hi everyone,

It has been silent here for a while. This is not because nothing has happened that is worth telling you about, but because we couldn't find the energy to tell it all in a proper way. We feel that it is better to wait and write a proper post then a random rambling head nor tail post. Not very web 2.0, proper posting instead of a short tweet, but I guess I'm an old-fashioned kind of person.

So, a short overview of what's been happening recently.

Most important is that Noah had another change of his stent, which was on the 28th of September. After all the good news the last time we were almost looking forward to it, although not completely. It is the hospital after all....

Louise went alone, and I joined her in the early afternoon. Noah was already on his way to surgery with Louise when I came in. It seemed to take a while, but that was because Louise had to change his stomach sonde/feeding tube, which the operating room nurses usually do for us. This is a fairly difficult change, which neither of us has had any practice in. Louise had to explain the usual procedure to the anesthesist team for putting Noah under. None of this inspired much confidence.

When Louise went to pick Noah up after the surgery, the doctor was very abrupt and rude. He did not want to say anything about how Noah's throat looked or how long it would take to heal completely. Louise was left alone with Noah, who was still knocked out with the anesthesia and on a strange hospital breathing machine, a completely unknown machine to us. They failed to give Noah a paracetamol, so he came out of his narcosis in a lot of pain, trying to claw the canule out his neck coughing up blood and no nurse around to assist Louise. All in all a very normal day in the Sofia hospital, unfortunately. I am sure you can understand why we work as hard as we do to avoid Noah going back there for more than a few hours.

The doctor came to see us later that afternoon while Noah was recovering, and explained a bit more about what he had seen during the stent change. Not only was the healing process no as far along as he (and we) thought, there was also an additional complication. Where the canule is going into Noah's airway some scarring has taking place, narrowing his airway. So although a decent size airway has been created with this operation (if it ever heals), it may not be of much use with a narrower bit just below it. This complication can be treated luckily, but that means more operations and more delays. The doctor was very grumpy just after the operation, which was why he behaved so abruptly. He is very involved, so this felt like a setback to him as well. So no new expectation of when everything is healed, I personally don't expect it this year anymore, but I could just be a bit too disheartened.

More news from the operation room was that Noah has got perfectly normal teeth according to the dentist that had a quick look. A two year old boy having every single teeth and molar he can have is not normal, but hey what do we know...... So we are back to the formal procedure of getting a normal dentist to have look (which they can't as Noah will not open his mouth long enough), to having a normal hospital having a look under narcosis (which they can't, because they don't have the specialist nurses to take of Noah), to going to the Sofia (yeah, that's going to work).

We didn't really feel like talking to anyone for a week after that experience.

Not that that is an option, but still, you feel like that sometimes. 

After having the horrible hospital experience we quickly noticed that the stoma (opening in his throat) was starting to weep, and getting sore. This got worse a few days after the stent change, with bits of blood and a bad smell coming from somewhere further inside the stoma. It looks like the piece of string that holds the stent in place is sawing into his neck again, nut maybe something else is going on inside, we can't tell. After offloading most of the nursing duties on Louise during the stent change, the hospital now was reluctant to listen to us, and treated us like over concerned parents. Incredibly frustrating and demeaning for us, as Noah keeps amazing every one, and has never had to go back to hospital for any illness, because we have always done all the care ourselves. We do know what we are doing by now! They finally prescribed some extra antibiotics last Sunday, so hopefully that will help. 

To add to the frustration, Noah's earring got lost, which is used as an extra safety anchor for his stent. I’ll try to draw a picture for you sometime so it all makes some more sense, but basically the stent is anchored at top by a piece of string so it doesn't sink into his lungs. This piece of string goes up through his airway, through his nose and is held into place by a plaster on his cheek. So now, on top of having to clean the stoma, which is very painful for the little man, Louise had to reinsert his earring, the hole for which closes up very rapidly. Noah panicked so much we couldn't put him in bed anymore without a big panic attack; it must have hurt so much.

The next item on the list is off course Noah's development. This is going forward, but it is a big responsibility for us. As he cannot go to day care because we cannot risk him getting ill, we need to provide all the necessary stimuli for his development. We get help from the revalidation center, which is very good. We also get some specialized tools, like his walker and the big buttons from one of the previous movies. Everything does seem to take forever to arrive though, there is at least a three month red tape period for anything. We have now ordered and paid for from our own pocket 5 new speaking buttons, but the bigger things are just too expensive to afford. 

Noah's new walker (the previous one was on loan from the revalidation center) arrived last week, but we found out it was broken on arrival. Not sure what is going to happen, but as one of the wheels is stuck in one direction it is not that useful for walking around. Noah's buggy needs new suspension, as he is getting too heavy for his current suspension. We have asked for this almost two months ago, the springs have finally arrived, but nobody knows how to install them...

It just seems to be that we are cursed by some old Chinese witch.... May you live in interesting times.....

Ha! We surely do. On a more personal note, we had to let Noah's personal carer go, as our budget for this year is getting very tight. Yet another thing that is not a nice experience; firing people. The night shifts are too important to be able to keep functioning, so this was our solution. A difficult decision to make nonetheless. 

My work has ordered me to (re)write my CV in a specific style, for which no guidance was given. Oh, and by the way if it is not finished and approved we will give you a bad grade for your yearly review. Thanks, guys, I really needed that as I got 2 out of last 3 projects by myself, without a CV. Needed a CV the last time 3 years ago. After that they cancelled the course I need to do my current job, as there is no money. After I arranged extra care for that week, as this course was in the UK, so Louise would have to cope alone for a week. Thanks for shafting us with the bill for extra nursing care. The meeting to discuss all of this has been postponed to what would have been the start day of the course, for a nice symbolism.

Oh, and there will a course for everyone in your department to make them aware of companywide standards, in a conference center , as the head office is not big enough. Wondering where that money came from..... Luckily I like my current project and my colleges there, but I do wonder what I do it all for.

Now don't stress out completely, we are still standing (cue Elton John) and going strong. It just a very rocky road sometimes. 

Pictures and movies the next time!

Thijs