After a number of intense weeks, in which Nienke's body clearly had to find a new balance, I can finally say that she is back at the same level she was before the operation. Looking back, the operation really put her through alot. Praying that in the months to come we will se that removing the tumor has a positive effect altogether.
The search for a suitable assistance dog was quite intense this past week. Last Friday we met a potential assistance dog. We immediately loved her and I could immediately notice that it was a dog that wanted to work. Today the inspection took place in Nijkerk at the Kibo foundation. The dog did not disappoint us. What a great dog! After the behavioral test, she went to the vet for a medical examination, but unfortunately she was rejected there for medical reasons. We were very disappointed. She did everything so well and not being allowed to go home with us at the end of the day was a huge downer! But...Somewhereout there is a dog that is a perfect match. I hope we find him or her soon!
Last night Nienke had a small incident that was easily solved and everything else is well under control today. Her numbers have improved a lot! Today after dinner I even got Nienke to leave her room. It all costs her a lot of energy, but past experience has taught us that the sooner she is back on her feet, the quicker she stabilizes. So, I arranged a wheelchair with the nurse and walked down the hallway and eventually ended up in the Ronald Mc Donald Living Room. Played some nice games and when the game was finished I told her to put it on the shelf. This was about 5 steps and she did this without even thinking. She even walked a few more steps next to the wheelchair. She was so proud and obviously so was I ;-)
After a pretty restless night Nienke had a very scary incident in which a lot of accumulated mucus was released from her lungs. It was probably already there since the operation, but because Nienke breathes using her diaphragm pacer, she didn't cough it up. The mucus must have been bothering her quite a bit.
Nienke's condition is still very fragile. Every now and then we see that things are getting better for a while and then it just starts declining all over again. When she feels better she can sit up and we have a bit of "fun-time".
The last two days have been very tough. Nienke started the day quite well yesterday and was therefore allowed to go from the ICU to high care at the end of the morning. Once there, things went wrong. Nienke's body just wasn't functioning properly in various areas and deteriorated rapidly. Last night she seemed stable but this morning it soon became apparent that she was still in very bad shape. She has been getting a bit better since 2 pm this afternoon. In the coming hours/days we are hoping to see her continue to improve.
Yesterday I went to the Princess Maxima Center and the WKZ with Nienke for further testing and to have all the last conversations before her surgery. It was a tough day. We had to go back and forth between the two hospitals a lot. Fortunately they are connected by a beautiful covered bridge with colored glass. At the very last minute we thought of taking Nienke's scooter with us. She had loads of fun scooting to all of the appointments.
Four years ago a tumor was found in Nienke's abdomen. A ganglioneuroma. Nienke was so ill at the time because of her ROHHAD that we didn't pay much attention to it. The oncologist told us that it is most likely benign and therefore did not have to be removed.
Today we celebrated Nienke's 7th birthday!!! She has been counting down the days. Busy making wish lists, coming up with treats, baking cakes and all the other fun stuff little girls do around their birthday. It was so much fun!!