Wednesday, January 23, 2013

Hit with a 2 x 4!

Well we made it into the Hospital! All of Zacks counts were high enough, now we just needed to wait for a room to become available. The Cancer Center must first reserve a room for their patients and since his counts were so low last week they weren't sure he would make it in again this week. He always manages to surprise everyone! Angie enters the room and says "well guess what?, you're going in!! Zack is fine with it, he is prepared, he had a great week with his friends and is interested in his video games once again, so he has a plan on how to entertain himself. We already discussed the fact his friends couldn't visit this time due to the flu restrictions. He simply reminds me that they are all working or in school and he will probably be sleeping most of the time anyway. He adapts really well, it doesn't mean he likes any of it, but he has learned to adapt. 

Angie tells us it will be a couple of hours, so she starts him on IV fluids (he previously had his port accessed). I'm guessing the emotions from yesterday wiped me out, as I immediately laid down on the tiny couch and was sound asleep. An hour later, Angie comes in to tell us the room is still not ready. It turns out the hospital is full to capacity with flu patients. The room they had were going to place us in is the smallest on the pediatric floor and the Hospital staff, already quite familiar with Zacks stature, told Angie it would not work out. One of our fellow patients was getting ready to check out so they advised us to go get lunch, take our time and we would be called once it was ready. 

We went to our new favorite hang out TGI Friday, I must say the food is delicious, but for a "girl" trying to stay on Weight Watchers program, "It 'aint easy". Zack and I were reviewing the menu and he was picking out everything marked with "under 750" calories.  Nothing appealed to me! I ended up getting an appetizer which involved three tiny chicken skewers, kind of funny actually, as that was the morning exercise at my WW meeting. We were to create a menu item under 10 points and chicken skewers was part of our menu. What I am realizing, the salt content is so high and my body can feel it. We had a nice relaxing lunch, but "the call" never came, and knowing it wasn't safe to go into large public places, we decided to head over to the Hospital and see what was going on. On our way there, Zack starts to have chills, it didn't subside until awhile later when we were settled into the Hospital. So I didn't think much about it, although I kept stored it for future reference if needed.

As confirmation of what we had already been advised, a large sign is posted at the entrance to the pediatric ward,"Due to flu season, visitors are restricted to immediate family and caregivers only, children under the age of 12 are not permitted!"  We walk through the double automatic doors and as we were greeted by the usual smiling faces,  my stack of containers comes crashing down from the suitcase dolly.  The nurses immediately come up and help us collect our belongings and tell us the cleaning crew were wrapping up and it would be about thirty minutes before our room is ready. We are placed in the children's play room, which is now closed to the children in order to keep toys sterilized.  As we are walking down the hall in the pediatric ward, each door has warnings posted. We usually see children running or walking in the halls while their parents push the IV pole, today the halls are empty. You can hear the babies crying behind closed doors, with caution signs with restrictions sign on each. 

Once our room is ready, we take our time to get settled in. The lamps are plugged in a placed in their strategic spots, I set up the aromatherapy container, the Keurig is set up and ready to go, clothes hang in the closet, food is set up and his special multi -colored blanket is laid across the bed. Zack still insists on sleeping on the couch so once we receive the sheets and blankets , I try and make it as comfortable as possible. Donna comes in and starts him on fluids. We are settled in, I fall into a deep sleep when Rhonda calls. We have agreed to meet for dinner (to celebrate her Birthday). I also need to go to the grocery store to get more supplies for Zack's stay. 

I purchased everything we needed and head to the bakery for fresh breakfast danish (Zack's favorite of late). I ask a woman if the ones out are the freshest as my son is in Hospital and can't leave for food. She assures me they are and starts telling me about her daughter, aged 48 who is being cared for by Hospice. She has a rare blood disorder.  I listen as she shares her grief of loosing a child and try my best to hold it together. This is about HER not ME! Zack is fine, he is doing well, I must keep reminding myself of this whenever I hear others stories. I wish her the best and head out to meet with Rhonda. While waiting at the entrance of the restaurant for Rhonda, I ask about their take out and see if they have hot wings (another of Zacks favorites), of course I mention the Hospital (I don't do this all the time, but at times something tells me I should and I follow my instincts). Our server, as it turns out, has liver cancer and was just recently diagnosed. She tells me that she doesn't have insurance and doesn't like her doctors who will not answer her questions or give her tests she feels she needs.  Rhonda asks for a piece of paper and I write down contact information for the SECU Cancer Center, Hematologists she can call and on the bottom of the note "YOU are in control of your life NOT the Doctors". I also write about Inclusive Healthcare, which just today learned is going away in December, 2013. It seems that January 2014 we will be able to pick our own insurance and pre existing will no longer determine if you can have coverage or not. I will believe it when I see it!

Dinner is finished and I'm anxious to return to Zack. He is thrilled with his hot wings and devours a portion of the meal.  All of a sudden he says he is so hot, I turn the heat down to 66 degrees and he is still sweating. I call the nurse in who checks his temperature. It is 99 degrees F (37.2 Celsius . I then remember and tell her of the chills. She calls the Doctor and is advised to take blood from his port. It wasn't until the next morning (today) that we learn the reasoning for all of this. I felt like I was hit by a 2 x 4 smack dab in the middle of my face! There was a possibility of infection in the port line , should this ever occur there are two ways to handle it. First we would have to bring Zack home and they would show us how to flush out his port with antibiotics. If this didn't work, he would need another surgery to remove and reinsert a new port. Luckily, his fever didn't last long at all, by 2 am he was 98 F (36.6 C) and by 10 am he was 96 F (35.5 C) degrees.  These numbers may seen low to the "normal" person, but someone undergoing chemo and who usually has a low temperature, it was high. 

As the evening winds down, Zack finally manages to fall asleep. It took me a little while to feel like I didn't have to hover and the nurses assured me that they would wake me if anything changed. Zack didn't get much sleep as he was up every few hours, but he woke up in a pretty good mood. I had decided to wait to go to work until the Doctor came in. I wanted to make sure everything came out well with regards to the blood tests. She said there is no sign of infection and his counts were still good after the first day of chemo. They are going to bump up his time by an hour each day so we are able to get out early Saturday evening.

Zack tells me he will be fine, though a part of me feels like he wants me to stay. I give him the option, I know if I need to I can call work and they would be fine with me staying the day. He says "it's up to you Mom." I tell him that he needs to be 100% honest with me and he says he is probably just going to sleep and watch movies. So I decide to head out. Missing one day at work can set me back several hours and I would rather not miss an entire day.  It wasn't until I was in the car that I see a text from my boss and Jess telling me it's okay not to come in. By that time I had already said my goodbyes and felt I needed to go in to the office.  I guess I should have listened to my gut. I wasn't much use to anyone and managed to make things worse at work. At some point during the day two of Zacks friends from his Boy Scout days come by the office. He was involved in Scouts with them since they all first started in 1st grade.  I see them and it takes everything in my being not to cry on the spot. Here are two young, healthy kids, bouncing in with such energy and excitement, going to school, dating, working. I remember back when they all would camp together, have fun together and yes have the occasional fight. Our reality hits me again as one asks if we are having our annual Super Bowl Party? A part of me wants to say "who cares?", but I just look at him and say "if we aren't in Hospital". He just stands there and looks at me as if trying to find words, not wanting to make him uncomfortable, I wink and tell them to take care of themselves and as quickly as they entered they left. 

I ended the day promising to get my shit together and give it my all!  Since Frank was already with Zack tonight and I'm going to stay with him tomorrow until we come home, I decided to stay late and get everything caught up. As usual, when it's quiet I can do the filing, recording and overall clean up of the files. Doc Nancy had already sorted through most of the files and had separate piles ready for me to conquer.  By 8:30 pm I had accomplished what would have taken me all day, while checking in patients and answering the phones.  

I checked in on Zack several times throughout the day and he did very well considering. The nausea is again very bad and taking the usual medicine only helps to a certain degree. The best part of every day is we have a chance to make tomorrow a better one, with new hopes and maybe after a good night sleep, our lives won't seem like it sucks as much as it did today!

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