Hope you all had a good weekend!
We keep being amazed by your involvement, generosity, sweetness and support! We’re so much appreciating the mail, messages, phone calls, the great food!! Everything!!
We had an ‘interesting’ Sunday as Trudy and I and Niels spent about 6 hours in the ER of Childrens. Everything is fine now. It was just a matter of being overly careful. I just see it as a dry-run of what is about to come.
Niels felt really hot on Sunday when he woke up; and he fell back asleep in our bed (which he had never done before). On Saturday night he already looked very tired. When we finally checked it on Sunday (around 10.30; we still had to buy a new thermometer; shame on us) it was 101 under the arm-pit and they told us to come over (and because it was Sunday we had to go to the ER).
So this was our first experience with the port!! Wow, that was so helpful!! We put on the numbing cream when we left the house and Niels was only a little bit upset because they touched him, but not because it hurt. Putting the needle in the port (really it was more like an outside port with a very short needle that c,licked right onto the inside port) was done very quickly (the cleaning took more time).
They took blood and then the waiting started. The difficulty this time was that he had brain surgery 3 weeks ago, the port surgery on Monday and soon he’ll be treated by oncology, so all 3 teams needed to be involved. The nurses did a lot of calling while we were waiting (to determine next steps). It turned out that his white blood cell count was much higher than normal and his sodium somewhat low–the latter later turned out to be fine when they took a little bit more blood and rechecked. Fortunately we were allowed to go home after he got antibiotics. Given the fact that we weren’t called back afterwards, I assume that the bloodcultures were negative or the bacteria were covered by the antibiotics that he got. This anti-biotic works for 24 hours so we’ll see by 5 PM tonight if he is still fine. (later edit: forgot to mention that they did not really know what caused the fever. The port area looked fine, his head wound still looked great too and he had no other symptoms than fever and tiredness. He did say "owie" a lot but a fever does not feel good)
Niels slept great. He only woke up at 3AM. Still felt warm and we were allowed to give him tylenol for 24 hours. So we gave him some, plus some milk and he went back to sleep (well, Wilbert had to lie down with him for a little bit). When he woke up this morning he was fine.
Generally at home we won’t be allowed to give him tylenol as it suppresses feaver. Feaver (especially when undergoing chemo) will indicate something is wrong and they’ll need to know. Once they know what is going on, you are allowed to give it for 24 hours. So against pain, we’ll need to give him other medicines.
I have to say that I was stressed out the whole time in the ER. I guess we’ll get used to it over time, but so far test results (especialy those in the ER) had not been so happy. And Niels looked so sick. But after they had given him the tylenol he felt much better.
Any how, the learning of this experience: next time we’ll have to go to the hospital w’ll always bring a cooler with food, severval toys, dvd player. and a book (just in case Niels does fall a sleep).
Today is a quiet day–well, hopefully,it is only 1PM
(Elke actually got home at 11AM as the tireswing ast school had smashed into her face, she has a swollen lip now. All three kids are sleeping now).
Because Niels felt good this morning we went to Kindering. This is an early childhood intervention center for kids with special needs (at Crossroads park, next to the firestation, so really close!) where he was being evaluated to see what services they can offer. The outcome was that development wise he is totally on track right now. So they could only offer him physical therapy once a week to work on his right side. That was also my goal: to get PT close to home! And also hav taht at a place where they can potentially offer more help once we get deeper into treatment or after treatment in case we would notice a regression in his development.
The funniest part was that at one point Maria walked by the window (she was there in the park with Finn, who was biking ahead of her). I did not notice (neither did Maria notice us), but all of a sudden Niels started yelling excitedly: Maria (more like Mja mja), Maria, Maria, da da da!