Thursday, August 16, 2012

Where are we and who are you?

Wednesday, Aug  15, 2012
The first night was rough for our "little man". Not the treatment, but the care. Don't get me wrong, the nurses here are amazing and are doing their job. They have all, one by one fallen in Love with Zack. Pediatric nurses are a breed all their own. What courage it must take to care for all of these "sick" children, to walk into the room with bright smiles on their faces, knowing what they know about the condition of each child. Every hour or so a nurse would come in, check the IV drip, open a bag, replace the IV fluid , take his blood pressure, take his temperature, change the settings on the monitor. Every two hours the monitor alarm would sound, Zack would turn it off and call the nurse. He would quietly get out of bed to use the restroom, quietly open the squeaky door, quietly unplug his monitor. HE was worried about waking ME up!

Being a heavy snorer (there I admitted it) we had an agreement that should I keep him awake (little did we know what we were in for) he should just say "MOM", and I'll wake up.  Zack had decided to try his own method. He told me in the morning that as soon as I would start, he would make a light whistle sound and I would stop!

We wake up about 7:30 am ,I decide to shower and get ready for work when his breakfast arrives. Keep in mind we are in the pediatric wing of the hospital. Zack is 6'5" and 320 lbs. They bring him a "children's" portion of pancakes and one sausage link, milk and what appeared to be oatmeal. He takes two bites and the meal is gone, takes a big gulp of milk and with a sour look on his face spits it out. "Mom... NOW the milk tastes bad because of this treatment." I feel bad for him and tell him we will just have to figure out what tastes good." As I'm cleaning up his area around the bed, I take the carton of milk and pour it down the sink, clump after clump comes out, I look at Zack and tell him "it's not the taste, the milk is bad, it expired three days ago". He is relieved and pissed at the same time. New lesson, check the date on all foods while in the hospital, mistakes can be made.

I run up and down the halls three times trying to locate his new nurse (Chris), Chris has his head shaved, and could pass for a younger (less attractive, sorry NO ONE can match my guy) Vin Diesel ( Okay so I'm obsessed!!).  The shifts run from 7 -7. It is already 8:30 and I need to leave by 9 to make it to work. I meet him in the hall and introduce myself. I have heard that he is great with the kids, especially teenagers and immediately he is talking about the different X-box games, he assures me he will tell the cafeteria about the milk incident and will show Zack around the unit. He was surprised that Zack was already up, most of the kids sleep late around here. He has a calm demeanor and I feel confident enough to leave Zack in his care, I give Zack a big hug and tell him Dad will be in this evening after work.

As I'm pulling out of the Hospital I want to cry, the tears don't come easily right now. I am in caregiver mode, I am in tough, I have, as Oprah likes to say "taken a big girl pill". NOTHING is going to get me down. I can do this, I can leave him and know that he is going to be well taken care of. He has become his own advocate after all and has become accustomed to telling the nurses what he needs. He doesn't want me hanging around all day staring at him or maybe it's me watching Grey's Anatomy that irritates him. Ha ha.. He knows the names of the medicine as if he has been taking it his whole life. He knows what they are giving him, for what, when, how he is expected to react to it and what he can ask for to help him tolerate it better. He tells them how fast or slow to put the IV flush (when they are cleaning out his IV). I tell myself it will only be a few hours and Frank will be there with him, then I can go home, crawl into bed and take a break.

I walk into work like a zombie. My head is in a fog. I am having problems seeing the papers in front of me. I can't remember patients names and yet I just saw them the other day. I see peoples mouths moving, but don't understand what they are saying to me. Wasn't I just at the Hospital? Did I just leave my kid there? Is this a dream and I'm going to wake up? Wait a minute.. I know this feeling. I had it not too long ago. I'm tired, maybe even exhausted though don't know what the difference is anymore. I know if I ask to go home, Steve and Nancy would hold the door open and say "yes, go home and rest", but I don't want to do that either, if I'm not at work then I need to be in the Hospital. I decide to snap out of it as best as I can and focus on one thing at a time. What is right in front of me that needs my attention. Oh.. I remember now.. Step One.... Two... Three.... Four... By the time the day ends, I feel I have done my best.  I remember " The Four Agreements" by Don Miguel Ruiz. "Always do your best. If we do our best, that is good enough, some days our best is 100% and sometimes it is 75%, but as long as we do our best we are honoring ourselves and those around us." I am my own worst critic when it comes to doing my best, I can be hard on myself, but that's what makes me try even harder in everything I do. That's a big part of who I am.

I Skype Zack at lunch time. He has an MP3 player and I have a phone that connects with Skype. I can see he is in a good mood. He has had a lot of company, his Uncle Mitch took an extended lunch break to spend time with him. Our friends Jeff  & Kelly came bringing her homemade "healthy cookies".. Zack likes to call them "Kelly Cookies" and are they ever delicious. Jeff brings him a bunch of hunting magazines. His best friend Drake and Amy (yet another Mother he has claimed) ,with such friends I will gladly share the title. Visitors help pass the time.  It was only a couple of hours after everyone left that Frank arrives bringing his hard drive for the x-box (now he can store more games) and then Forrest arrives bringing more games.  Zack is in a good space as he visits with Forrest and Frank. He loves having people around and being in an enclosed room for days is tough, even for a person that likes to "hide out" in his room at home. I feel better after seeing him and finding out his treatment is going well, with little side effects this time around.

I text Shawn and Floyd and ask if they are up to having dinner somewhere. I need to do something "normal" have a light dinner with someone before heading home to an empty house. Most times it would be a welcome relief, but today, I find myself  wanting to be with some people, even just for a short time. They are happy to "join me", we agree on the location and have a wonderful dinner together. What a nice surprise when Floyd picks up the ticket and refuses to let me pay. I have had my little bit or normal and am ready to head home. I call the hospital on the way home, missing both Frank and Zack. They have brought an air mattress in for Frank to sleep on, as per my request from earlier today. I know they are both going to have a better night's sleep. Once home, I find there is billing to be done for Frank's business, I take care of that, then decide to color my hair (oops, you thought it was natural?) and take the scissors to cut it as well. At this stage of the game I don't have the time or inclination to make an appointment and try and fit another thing into our schedule. (I am told later that I did a good job, yeah).

Thursday Aug 16, 2012
Frank and Zack had a good night's sleep. The air mattress worked well. Zack was even teasing that Frank snored more than I do. As the day progresses, Zack's mood gets worse. He is done with the treatment, he is done with being in the Hospital. Nothing I can say will cheer him up. He asked if I could call Melanie to come over and visit. I immediately text her and asked if she was able to do so. Being the kind of person she is, Mel brought her daughter to her mothers house and was on her way within an hour. When people tell you they want to help, BELIEVE them!!! ASK!! They are good people, wanting to make someone's life better, easier and we all want to be there for someone, to help anyone. We are so grateful, Mel was able to pull him out of his funk for a little while at least. Who can blame him. He is a 16 year old that is used to hanging out with his friends, who are now in school. He just got a car and is unable to work on it until he recovers from the treatment. So, yes, He has a very good excuse for being bummed out.

Zack is thrilled to have yet another photo taken!
I arrive at the Hospital and Zack's color looks good. He usually is very pale during chemo, but he actually is a bit flushed. He tells me that it he had to take out his contacts, another "side effect" as his eyes get bloodshot easily. Rhonda as already been around thinking I would be there already, she went to pick up Peter to bring him back to see his cousin. I get settled in and a new nurse Amy enters. She is young and full of energy, is teasing Zack and he teases back. It's nice to hear him sound better, though I can tell he isn't feeling that great. We visit with Rhonda and Peter awhile and the head nurse announces over the speakers that it's time for visitors to leave. Rhonda offers to pick up dinner for me and bring it back, but I'm just ready to relax and visit with Zack.

He receives multiple texts from friends with promises to visit tomorrow after school. The news seems to cheer him up a bit. Within the hour, he calls for the nurse and asks for his nightly Bendryl. He is feeling nauseous and the medicine helps him relax and fall asleep. Amy brings in the medicine, and soon he is fast asleep.  Day three is down, but who's counting.

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