The day started out a little later than most. It was 8:30 am and Zack was still sleeping, He was up and down most of the night, but that's to be expected with all the fluids they pump into him. His breakfast arrived early at 7:30 am and laid on his roll away bed tray waiting for him to wake. I lift the lid to see what treat he is in for today, and voila! Two pancakes and one sausage link, a small bowl of canned fruit and milk. I check the date on the carton laughing while thinking about the other morning and see it is a good date.
Shawn (sister in law) is coming for me, so we can go to to the mall for a couple of hours. Zack had already said he didn't want me "hovering" all day, in fact I heard that from four of five people the previous day. "Give him some space, let him breath" OK I get the message. I'm not used to my child being "sick". He has always been healthy and we have gone from to 0 - 60 in 3.4 seconds with a lot of turns ahead of us. The good thing is, Zack will tell me when he wants his space and we listen.
Zack wakes up around 9 am long enough to eat his pancakes and sausage, get more Benedryl and go back to sleep. This stuff really knocks him out, so I tell the nurse, Melissa , we will be back in a couple of hours. We head out to the mall to look for a couple of things ( I buy new glasses as mine were thrown out the window from my dash a couple of months ago) I don't really even care how they look, at this point I haven't worn mascara in months, wear the same outfits so I don't even have to think and put on the same earrings, IF I even remember them. I need the glasses to handle bifocals and cheap enough that it doesn't break the bank (and they can!). We then head to Walmart (again) and I help pick out her list of items she needs for school and home. I already know my way around this store after only being here a couple of times. I pick up some waterless shampoo and wipes for Zack to us to "bathe" . He is not allowed to shower with the IV line in, so this will make it easier while in the Hospital. We go out for a quick lunch and catch up on a lot! It is again good to get out, even if just a couple of hours, yet I feel guilty that I can be out and he can't.
Shawn drops me off at the entrance to the Hospital and I run upstairs anxious to see Zack. How weird it is that you can make your "home" anywhere. I find that returning here to our temporary sanctuary is a comfort, there are people that we can call on when we need help. They are right around the corner. Zack is still sleeping, so I enter the room very quietly. He opens his eyes just a little bit and all of a sudden sits up and smiles. (something he hasn't done so easily while here) He tells me he has eaten lunch, which was horrible. I offer to bring him food, but he doesn't want this food to go to waste, so he eats it anyway. I show him the snacks and personal items I picked up for him. We just sit and he starts talking about random things. He is even a bit chipper and I am relieved. We watch a couple of shows together, I get my "comfortable" clothes on and he teases me about my "fashion statement".
Zack is sitting up a bit more, playing his game and has heard from Drake and Trenton that they will be coming to visit. Frank calls and is on his way as well. Within two hours the room is filled with laughter and teasing. Frank came in with the license plate for Zacks car. I think he is going to sleep with it tonight. Frank also shares that he and Jeff finished putting in the floor in Zack's room. We will finally be able to move him back in on Sunday! While visiting with everyone Dr. Bottom comes in with Karen (our social worker), they are making rounds to see how all of their patients are doing. We discuss the discharge date and time. Because Zack must have fluids for up to 24 hours after chemo treatment he may be able to leave by 2 pm on Sunday. We were hoping we would head home on Saturday but whatever he needs will be done.
In order to give Zack and his friends some time to just be kids, I agree to meet Rhonda for a quick dinner. We meet at the steak house up the road. This is one of Zack's favorite places, but he still doesn't want me to bring him anything back. I decide to tease him a bit and while at the restaurant I get in touch with Zack via Skype. He says hello to Rhonda and I then I move the phone towards the server who in turns says hi to him and tells him she can't wait till he gets better to come to the restaurant. He gives an embarrassed wave to her and teases me about it when I return. I told him there was a group of servers in back of me, they saw the him and mention how cute he is.
Once I return, Zack is sitting up in a chair and playing one of his games. His color looks good, he has been having moments when he is ashy so it's nice to see color in is face. His friends had to leave and he is again bummed. We watch a couple of comedies and he all of a sudden is feeling nauseous and hot inside. I call Amy, who is back on again tonight and ask her to call the Doctor to make sure that he is okay. We hear so much about how some of the treatment can cause burns, that's why they coat the bladder with special medicine before beginning. He has never complained about being hot (under his skin). The Doctor says to make sure the room is cool, put a washcloth on his head and keep her posted. She said sometimes this happens when they are nauseous and if he is kept cool it will pass. The Nurse, Amy turns the AC down, I get a wash cloth damp and place it on his forehead. He quickly falls asleep.
As I settle back down on the love seat, starring at my sleeping "boy", the tears start to flow. Even those are controlled, I can't let him hear me, can't let him see me. I am the parent, I am the strong one and must be strong for us both right now. I can hear Frank tell me to" pull it together". He is right, there is a time and place to loose it and this is not the time or the place. I decide to write the blog so that I can release the days events, I put on my show and drown myself in the fake hospital world of Greys.
It is midnight and things had gotten rough. Zack's stomach was upset and he has developed the "shakes", not externally but "inside" as he says. I again call Amy and she comes in to check on him. She is covered from head to toe with protective gear, she is giving chemo to another child next door. She returns a couple of minutes later to administer Adavan. She feels bad that he is having such a hard time tonight. Amy is so compassionate and really takes the time to listen to Zack and my concerns. She understands the pain of the family members, having lost her mother to breast cancer when she was young and now her father in a nursing home with dementia resulting from a stroke. She continues to share that she was also in a car accident when she was 16 and suffered a severe TBi (traumatic brain injury), she shows the scare across her forehead where they had to remove her scull cap. "All of this", she says, "all of what life has dealt me, is what has made me who I am today and Zack is such a special young man and will be more so from this life experience," She put the monitor on his finger to make sure his oxygen and pulse rate are normal. He is moving his finger around looking at the light at the end of it, and smiling. He is feeling no pain at this moment and falls asleep.
I fix up my "bed" and am ready for sleep. Sleep well dear world! Tomorrow is another day closer to us being home.
Thank you, Brie for this blog. I feel so far away and this helps me understand what is going on day by day. Thank you and you are doing it so very well. Love you very much, Mom.
ReplyDeleteThanks for keeping up with us. I Love and Miss you so much!! Sending you big hugs!!!
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