Sam - update 9

Sam is home, with daddy, mummy and Jip!!!!
As far as we understand, they are doing very well.

Hello all!
 
It has been quite a while since you received the previous e-mail from us. A lot has happened in the meantime.
We have been getting an awful lot of interested phone calls and text messages about the CT scan and the plan of action for the next few days. In fact, there are so many that we haven't even answered them all yet. So it's high time again for an update!
 
In our previous email, we mentioned, that Sam would get a CT scan that Monday. Should this have a good outcome, the cardiac catheterisation might no longer be necessary. That Monday, Sam did not have the scan. In fact, on Sunday night he suffered cardiac arrhythmias. At 3am, we were called about this. Anne then immediately went to the hospital and John and Jip stayed in the RMD house, as Jip was of course asleep.
The moment Anne got there, she immediately saw that Sam himself was not bothered by it. That was a huge relief. He was lying wide awake, looking around, impressed by all the white coats, which were suddenly around him, and more and more of them. After some examination and checks, it was decided that Sam should be given a drug, to bring his heart rhythm back under control. However, they were not allowed to administer this medicine on the nursing ward, so Sam was transferred back to the paediatric ICU. That was quite a scare! Sam was given another drip and an hour after the medicine was administered, he fell asleep peacefully.
From 6am that morning, Sam showed no abnormal heart rhythms again. Nevertheless, he remained in the ICU for 2 more nights just to be sure, before he was allowed to return to the nursing ward. To prevent him from suffering from any more cardiac arrhythmias, he will now be given an extra medicine, which he will have to stay on for his first year of life.  
 
The CT scan was pushed back a week. He has since had it and we have received the results. The CT scan showed nothing unusual about his coronary arteries, so the cardiologists decided to postpone the cardiac catheterisation. They say postpone, but if there are no more complications, it does not have to be done at all. So we hope, that from procrastination, comes procrastination!
Unfortunately, Sam suffered some abnormal heart rhythms again that day. Not as extreme as the week before, but enough to have to adjust the medication. The medication still did not suppress the problem sufficiently. After this, Sam would have to stay on the monitor for at least another week and show no more abnormal heart rhythms, in order to enter into discussions about discharging Sam.
 
In between, Sam also had the weekly ultrasounds. His heart is still recovering nicely. Besides the valve leakage, which is now gone, the heart (the left part) is now shrinking. It was so incredibly enlarged and therefore stretched, making it less able to function properly. This is probably also the cause of the cardiac arrhythmia. The heart cells have been stretched so much, causing it to be a bit off now.
 
Last week, we already noticed from the nurses and doctors, that things are now really moving in the right direction with Sam and the day of discharge is getting closer and closer. We also see Sam getting stronger and stronger. He is cheerful, smiling a lot and chatting away. His drinking is also improving, although he is still not off the tube. We are still practising a lot, but we have to keep up the pace Sam tells us. We don't expect him to be off the tube before he can come home with us. Since we will then have to be able to work with the tube ourselves, we are apprenticing for this. Anne has now obtained her 'diploma' and is allowed to independently administer medicines and nutrition via the tube.
 
Yesterday we finally met with the cardiologist to discuss the progress and possible discharge. She is extremely satisfied with Sam's recovery and therefore sees no reason to keep him in Nijmegen any longer. Sam can go to Veghel tomorrow, where he can stay in hospital for a few more days, before going home with us. There, the monitor will be further reduced and we can get used to it at home again and prepare well for the homecoming of our little big miracle!
 
We find it incredibly exciting, but are really looking forward to being home, first with the three of us and soon after with the four of us!!! We have been living in Nijmegen for over 2.5 months now. In that time you collect a lot of stuff in your room! After the good news yesterday, we immediately started cleaning up. We packed all our stuff and loaded it into the car. We only left a bag with some clothes and toiletries for Anne, for the last two nights. John and Jip have already gone home with all our stuff and Anne and Sam will come to Veghel by ambulance on Wednesday (probably in the morning)!
 
Who knows, see you soon in Veghel!!!
 
Love,
 
John, Anne, Jip & Sam