Hospital madness

Hi everyone,

Just a quick update from our visit the hospital. We asked for as many as possible appointments over the two days visit, and we got them!

Monday morning 8.30 the eye doctor.
We were there a bit longer than expected as Noah needed some eye medication so we were there till about 10, with some waiting in between.
We had to quickly return home, as we'd run out of time to complete our packing and so we needed to finish that and return just in time for our 12:30  appointment with the nurse of the breathing (machine) team.
At 13:00 the doctor from the breathing team.
At 13:30 an electro cardio gram, (Noah's night time heart rate has been dropping to 39 bpm!). 
At 14:00 the hospital social worker, followed at 14:30 with the IC nurses that will take care of noah. 
15:00 the dietist dropped by.
15:30 the IC doctor.
Finally at 16:00 the ear nose and throat specialist.

You'd think that would be the end of day one, but oh no! Then the IC nurses from the evening shift were next to visit followed by the hospital vampire! Noah needed to have some blood taken for his blood gass control levels. At 17.00, we started preparing him for bed, but it took till 19.00 for all the hospital equipment, monitors and everything to be set up.
The visit to the hospital is a chance to monitor Noah through the night with lots of different systems. The idea is to pretend like Noah is at home, so they can see how he does 'normally'. He's in a seperate room from the other patients and we, the parents, are responsible for his care, just like at home.
We quickly went to make and eat some dinner at the Ronald McDonald house around 19:30, back at 21:00. Louise stayed the night in the Ronald MacDonald house, whilst I took care of Noah through the night at the hospital.  So I put his food on, and waited for him to settle to sleep.
At 23:00 another blood sample, so I got to sleep just after that.
00:00 Noah's alarms went off  a few times till around 02:00.  It felt like I'd just dropped off to sleep when ... at 3:00, they needed to take another bloodsample from Noah.
At 4:00 the night nurse came in and apoligized, but the doctors decided they needed another E.C.G., while he was sleeping. Well, that involved 10 more stickers on his chest, so Noah was not sleeping anymore by the time we had stuck them all on.
Oh well, 5:00 his food needed to go on, as he was not allowed to eat after 6:00 and it takes an hour to feed him.
Louise came to take over at 7:00, so I went to the RmcD to try and catch some sleep... Unfortunately the hospital is a big building area, as they are building a completely new hospital, so that didn't work out too well either. Louise didn't sleep much either as the worry kept her awake.

Oh well, operation day was more quiet, but basically just a long long long day of waiting, (and of course the worry that it will be alright). First waiting for when he was going in for surgery, and then waiting for when we were allowed to leave.


So what were the results from all this waiting and meetings?

1. His airway looks good, they didn't measure it against the previous time, but it looks allright. Some scar tissue around the canule, and no news on his vocal cords.
2. He now has a smaller size size canule to allow/force him to breathe through his mouth and nose more. Still no real sounds though.
3. Noah came home ill (again). A nice 36 hours of vomiting followed by being blocked followed by... well check our next post.
4. His eyes are okay.
5. Noah's heart looks allright, but his extremely low heart rates have the doctors worried. A follow up investigation is planned.
6. We decided to start seeing a psychiatrist, as our stress levels on even approaching the hospital are out of all proportions. 
7. The dietist told us he should have more food, he lost about 1 kg in weight in the last month. He has also grown to a cool 1 meter exactly. Other then more food, he does not drink very well (at all really), so we need to give him more water when he eats by himself.

So that is 2 days  in our lives, we'd call it "Sleepless in Rotterdam" if it was at all funny or romantic. I'll add this song to describe a bit better:



Thijs