I didnt write yesterday. It was another night at home for me and the exhaustion hit me like a tonne of bricks. Craig and I are trying to trade off every day. The idea is that we are able to get rested up and Nevan and Nylah get to spend equal time with both of us. My plan for most nights is to go 'mom'-stop until I am super tired and then go to bed, knowing that I will fall right to sleep and morning will come that much quicker.
It's such an odd place to be right now... For Nevan I want the next 2 years to go by as quickly as possible, but for Nylah, I want to savor every moment and not have her grow up too fast. Last night 'super tired' came super early and by 10pm I was sleeping like a baby....until my actual baby woke up calling for me "mommy pease!" "mommy pease!". Nylah has started waking up every night, all she wants is a bottle and some snuggles and I am happy to oblige! Even with the midnight cuddle session, I was able to squeeze in a good 6 hrs of much needed sleep.
Everyone has warned us that there will be good days and bad days, yesterday was a bad day, today was an amazing day! Saturday night was a tough one. Nevan was having reigers all night and as I climbed into bed with him, his fever shot up to 104. Tylenol was given and I tried to get him back to sleep, but he was too uncomfortable. I think we managed about 2 hours sleep most of which I was sleeping with him in his bed, trying so carefully not to disturb his fresh PICC line. He woke up and seemed to be in a fairly good mood. They began his day with a dose of steroids and that good mood did not last long. He went from happy to barely responsive, staring off into space. This went on, for most of the day with brief moments of interaction throughout afternoon. Finally daddy showed up for shift change. Nevan was engrossed in his transformers movie so I knelt down kissed him good bye and stood to walk away... All of a sudden Nevan started crying. I immediately checked him all over and asked if he was ok and where it hurt and between uncontrollable sobs he said "I don't want Mommy to go!" What do I do now? I know he is sick, but he is also 4 years old and under any other circumstances, no request would be fulfilled if asked during a tantrum. Obviously this situation is different and much of it, the work of the nasty steroids. They have advised us to set some basic ground rules (no hitting, spitting, pushing etc) and then give in to the rest. So I gave in. I picked him up and cuddled him in his bed for about half an hour. He seemed to calm down just as quickly as he had gotten upset and Nylah was waiting patiently for me to take her home, so I attempted my escape for a second time and this time it was successful!.... sort of. I got about half way home and Craig called me and put Nevan on the phone. I could barely understand him, he was crying so hard. Poor Daddy was trying so hard to make it better, but Nevan was beside himself upset. I could hear Craig in the back ground warning me that I may have to turn back. I didn't even talk to Nevan, he wouldn't have heard me anyway. I took a deep breath, hung up the phone and kept drive home. He was safe, Daddy was there as were the nurses and a room filled with everything a little boy could want. He would be fine.... it was Nylah's turn.
The next day I went to the hospital worried that Nevan would be so mad at me for leaving him and I was armed with an explanation as to why.... not needed! Nevan was back! He was happy as could be sitting up in his bed. It was a good day... a very good day actually. We got the results back from his Lumbar Puncture and it came back clear! The Leukemia had not infected his Central Nervous System! Nevan will remain a standard risk patient! Craig left right away as he was utterly spent and needed to rest. Nevan and I spent the afternoon playing games and reading books.
He also got a visit from his Child Life worker Maria. She came in and together we explained to Nevan that his blood got sick, all on it's own and that it wasn't his or anyone elses fault. We also let him know that although he may be able to go home in a few weeks, he would have to come back and visit his friends at McMaster hospital many times, sometimes even for a sleep over. He looked at Maria right in the eyes, the entire time she spoke and listened to her more closely than he has even been listening to his dad and I. I think he really needed to hear this.
Maria, also got him a very special gift! A beautiful Spiderman quilt that was donated by a group in Niagara Falls. Maria decides which of the children get the quilts, and she gave the Spiderman one to Nevan. He loves it! She must have liked seeing the smile on his face, because she came back in 3 times to give him more gifts! Making sick kids happy... what a great job to have!
The day ended in a very special way... Nevan took his meds! Craig let me know that the nurses had to force Nevan's meds down the night before so I started prepping Nevan an hour before. I told him that him, Daddy and I were a great team and that if he didn't take his meds, the nurses would have to come in and break up our team. Down the hatch it went! With a drink of water and a call to the nurses to let them know that he had taken his meds all by himself, he went to bed proud and happy.
Let's see what adventures tomorrow brings!
Cute Story of the day:
The baby down the hall was crying...
Nevan - "Mommy, why is that baby crying? I can't sleep when he is crying"
Me - "That baby is sick and he has to be poked and take medicine just like you.... he just isn't as brave as you, he is too young. That's why he cries"
Nevan - "Well maybe he should come back to the hospital when he grows up a bit because I need my sleep!"
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