Medical update

Hi everyone,

As promised an update about the results of our hospital visit. 

It is still a mixed story, but some good came out of it. Noah had an appointment with the throat specialist, who  said that his breathing problem could be caused by having a too small canule, like breathing through a very small straw. He wanted to schedule a full operation (in a few weeks) to replace his current 3,5 mm canule with a 4 mm canule. This because the new larger one may not fit in the hole, so he wanted to sedate Noah completely. We managed to convince him to give a try immediately, and it went very well. The doctor even mumbled that a 4,5 mm canule would have fitted easily (so we will insist on that size the next time we are in the hospital).

This bigger canule seems to make a very big difference. His hearth rate is a lot lower, which means he doesn't have to work as hard on his breathing. He also seems to be sleeping less, and has more energy for playing.

His diaphragm was also examined, and it has moved up a little bit, but is not yet in the place it should be. Also one side seems to be a bit more rigid, moving less. On that side his liver could be a bit in the way. What it all means is unclear, but it is not the best for his breathing that much is obvious. 

So to summarise, we are enjoying a more active Noah, but the future is still unclear.  

On different fronts, we are starting to enjoy more nursing care for Noah, so we get a break in the form of a nice diner out tonight! We are really looking forward to our first night out since February 16 followed by our first night solid sleep. Since we have some time I am sure Louise will upload the promised movies either to the website or youtube..... 

I better stop posting now before I get hit on the head..

Bye 

Thijs

Bij deze een film van 3.30 minuten. Zal wel even duren voordat hij binnen is, maar goed...

Sorry, ik kreeg hem nog niet gedraaid, kan wel met de Mac, maa heb er gewoon geen rijd voor.

Statistics, pictures and news

Hi,

First of all the statistics:
As we said, we went to the hospital on Friday for a check-up. Noah now weighs 10.830 kg, and is is 77 cm tall. (almost 24 pounds and over 30 inch). He now has 6 teeth broken through, and seems determined to grow a few more. It looks like he may get 4 more soon, but it is hard to tell as he is not opening his mouth, it must be very sensitive with all the new teeth. He also refuses to eat anything, which is very frustrating as we have to rely on the feeding him through his feeding tube completely.
The doctors were very impressed by his growth and development, but less so with his breathing. We had already noticed that the amount of time that Noah can be without his machine has dropped from 8 - 10 hours a day to anywhere between 2 - 4 hours spread over the day. This is a very scary development, as he needs to be of his machine completely (24 hours/day) to get his throat reconstruction surgery. Also with his breathing machine he is even less mobile than without. After some blood tests and an x-ray, the doctors confirmed that his lungs are not developing/growing at the same speed as the rest of his body. Although he seem very big, he actually has a small ribcage which may also be a problem. We are not sure what this means exactly, except for the fact that he needs to be om his machine more, not sure for his oxygen levels, but also for getting rid of the carbon dioxide.
We have some further investigations lined up, with a lung specialist, a heart specialist and the canule specialist to investigate the cause and hopefully cure for these breathing difficulties.
As you can imagine we are not very happy about this, but there seems to be little to do, except wait and hope for the best. So far for the pure medical news and statistics....

Now some more general news:
I'll throw in a few pictures soon to keep you all interested :-) .

First of all, our care budget (Persoonsgebonden budget or PGB in dutch) is finally going in the right direction. They have paid us the first amount, but because of all the delays, we are getting 5 months of budget in three months. This means we can now hire more help, to recover from near exhaustion after taking care of Noah on our own for the first two months. Not sure how helpfull all these delays were.
We wrote two appeals, on each to the main burocracies that handle the care budgets. The first one got turned down, was rewritten and is now being processed. This appeal is because this agency thinks Noah can be without supervision for up to 5 minutes...... We disagree. Hopefully we'll hear something soon because if we can win this we'll be entitled to a lot more care.
The other appeal we have won. This was a different agency who determines how much money the care is worth. They felt it would be a lot cheaper for Noah to be admitted to hospital, so wouldn't pay us the full amount we are entitled to (even before above appeal) . They conveniently forgot that Noah needs to go to an intensive care unit instead of a normal hospital.... Luckily it only took a few letters to convince them to pay us in full.

We have now hired nurses to give us some time off, mostly during the weekend. Also we have hired a lady to help Louise during the week, for 4 mornings. All of this doesn't mean daddy can now lounge about, he still has to take care of Noah! :-)


Noah had a fantastic bath, which we had on loan for two weeks. Next Thursday someone from the municipality comes by to see if we are entitled to get the bath permanently. But for now it is back to washing with a cloth, and only an occasional bath in the big bath. As soon as I figure out how to edit, reduce and upload the movie you can see for yourself how much fun the bath was/will be again.

Opa and Oma are also helping us out, and Noah loves their visits. The grandparents have been taking care of Noah on their own mostly, which is another break for us, so we all feel better after their visit.


Some times they even bring a present along! Even if the present is not for Noah there is always wrapping paper to play with! hooray!


As I mentioned before, Noah is doing better on his development, he is grabbing stuff much easier (glasses are no longer safe), and rolls from side to side easily. He still doesn't roll on his belly, but with all the teething problems he has also had a sore belly very often. Can't be nice to lie upon. Here daddy is trying to help Noah do some fitness (It could also be a general playtime, though :-) )


Another thing mentioned before is that Noah doesn't eat anything himself anymore. We still try to get him to eat, by sitting him with us during dinner and trying to feed him some stuff.


But lets be honest, when you manage to get more home made chocolate ice cream around your mouth then in it, we are not sure that you deserve any real food.....


We now manage to leave the house together sometimes, when we have a nurse. Although Louise wants to go shopping I sometimes manage to convince her to do some healthy stuff, like walking on the beach. Lilo is very grateful for these walks.


Louise exercising. She is actually taking her exercise very seriously now, not only by weightlifting Noah, but she also has a fitness trainer coming by the house once a week to help her with a custom made fitness program to get back in shape after the enforced bedrest, operation, and stressful times from the last year. I could probably do with some of that as well, I guess....

And a dog trying to find the ball in the foam


For all of you that managed to get this far a few bonus pictures. noah is trying to show of how cute he can be for our new camera.


And the last, where Noah pretends to be an angel. We know better though.....


I hope you've enjoyed all the pictures, we have some more on the camera, and some movies that I haven't uploaded yet. Still to come: bath video, play videos, walk outside and more news. We have another oppointment in Rotterdam in the hospital on wednesday, so I hope to be have the technical details sorted by then to give you another proper update.

Thijs

Very Busy Doing ... Stuff!

It's been far too long since we've posted an update; don't worry though, there is nothing seriously wrong or anything like that.  Noah has just put his considerable will to growing teeth, and that is exactly what is happening.  He's not able to be off his machine for very long which makes it a bit of a nuisance to move about and a little more work.  

He now has 6 teeth cut, and he has 4 more on the way.  This means that his system is a little bit run down so it's pooh nappies, infections and just a pretty miserable time for him and not that much fun for us.  It's not all miserable though.  As you all know, Noah is one tough little cookie.  His development is coming on in leaps and bounds, he's a totally different boy now to how he was in the hospital.  

Some things have taken a step back, like his breathing off his machine and his eating solid food, but we're confident that this will improve once he's not so focused on growing teeth!!

We've got some pretty cool videos and pictures stored up to show you what Noah has been up to and how he's changed in the last 4 weeks.  So we ask for your patients a little while longer and we'll try and get them uploaded as soon as possible.

We're off to the Sophia hospital tomorrow for a routine check up so we should have some official statistics on Noah's length and weight to share as well.

Speak to you soon,

Drostens