Tuesday, February 26, 2013

The tests just keep coming!!!

Sunday night was a rough night for Zack. He spent most of it coughing, tossing and turning. The mattress' never arrived, so I slept on the Chinese Torture Chamber (as the nurses refer to the couch). Actually, "slept" is being rather optimistic. But this is not about me, this is about an amazing young man, who has yet another hurdle to jump.   Monday I asked the nurse to see if there was anything we could give him for his cough. They were waiting for the Doctor to arrive and then we could assess the situation better. He is still on IV fluids and antibiotics. We were advised that protocol with high fever in patients under treatment is to give 48 hours of antibiotics. 

Dr S. came in, checked Zack's chest for any murmurs. He said his chest still sounded clear but would call in Robitussin for the cough. He headed out and Zack decided to move into the chair for better comfort. At least he realizes that sleeping in the bed (he usually likes the torture chamber) is better for him, since he sits up. Zack started watching a movie on Netflix and feeling more comfortable about leaving him for a couple of hours, I head out to the local store for our weeks supplies.

It takes me the full two hours to get a few drinks, snacks and lunches. We had left the house with just a couple of days of clothing, so I purchased a couple of t-shirts and undergarments for Zack. I grab lunch for the two of us and head back to the hospital. When I arrive back, the x-ray technicians arrive to do chest x-rays. I see that the mattress' haven't yet arrived, so I head down the hall and ask a nice young lady who is cleaning one of the rooms, for the number for housekeeping. I go back into the room, pick up the phone and call. A woman answers the phone, I simply state "I would like two to three mattress' delivered to Pediatric Floor Room 389 please!" The woman repeats what I said and I confirm. She says "may I ask who this is?", " yes I am a parent that will be staying here for at least a week and if I sleep on this couch one more night, I will have you join me to see just how horrible it really is." The woman laughed and said "I will have them delivered right away!" within thirty minutes, two men delivered them questioning "three?" I responded with "the princess and the pea, hello... I'm the princess!" With a laugh, they dropped them off and told me to sleep well.

The room is starting to take shape, just as it does when we stay for chemo. I have the lamps set up, my "bed" made up with Rhonda's beautiful comforter and she surprised me in the morning by dropping off her ottoman as well. It  feels so much cozier and more like a home than Hospital. The nurses all comment about how homey it looks and how good it smells. We have an electric wax burner that gives off the constant aroma of spearmint or peppermint which helps with the nausea from Chemo. Since it's not healthy to sit under incandescent lighting for extended periods of time, the overhead lights are turned off and lamps are the main light in the room at night. All the light we need during the day comes from a large window overlooking the flat roof. Though it doesn't  offer much of a view,  the sun shinning in on a beautiful day makes up for it.  I know I will sleep better tonight, but my main concern is, how will Zack? With the constant coughing and his head hurting more, we decide that Benedryl at bedtime will be the best solution. The Doctor returns in the afternoon and tells us that Zack does have pneumonia. They are going to order a CT scan, but since it is so late in the afternoon it won't happen until in the morning. They will continue to monitor his temperature, which is staying right around 99.7F.  He has tried Robitusson and Sudafed but neither has much of an effect on the cough.

Zack and I settle in. He is watching a show on football. At first he thought it was a movie, but soon realized it was in fact a documentary. He became so engrossed he asked me to join him. "Undefeated" as it turns out, won an Academy Award in 2011. It is a documentary of an underdog football team who look to reverse their fortunes with coach Bill Courtney. I would highly recommend watching it, even if you don't like sports, it's amazing to see how these kids lives are turned around, by a handful of loving, caring people. THIS is what it's all about!! What we can do for others!!

Rhonda stops by so we can have a quick dinner downstairs, I'm not really in a talking mood tonight, with every word I am angry, frustrated and want to just cry. I am second guessing everything I do for Zack. Were we right to send him to the Monster Truck Show, did I get him here fast enough, am I right in trusting all they are doing for them, are they doing enough for him and fast enough, is there a question I didn't ask, or a test I should have demanded. We did find out later that Zack could not have gotten sick this quickly from the show, this has been gradually working into an infection.

I return back to the room and Zack is feeling worse. He is loving and asked if "I" was okay! I tell him I just need to make a quick phone call. As I walk out into the main entrance to the Pediatric Wing, I sit in a chair near the large picture window overlooking the parking deck. As soon as I sit down the flood gates open and I have a good cry. I call Nancy (BFF) and share my feelings. It wasn't that long ago that they were in the same position, staying at the hospital around the clock with their daughter (from a life threatening car accident). I believe in the medical field, that there are great benefits, but I was raised more on the spiritual and holistic approach. Having been raised by a Christian Scientist father and witnessed healings in my own home and with myself, I still hang on to a lot of those beliefs. I know there is room for both, but have forgotten the spiritual aspect (I'm not talking prayer.. I have Unity on speed dial). Nancy reminded me how my thoughts can effect the situation. She reminded me to change my negative thoughts into positive, to see Zack as healthy and not accept every word given as the ONLY word!! We both shared how our mother's are strong women and how much we lean on them, but there are times when we want to protect them. I tell my mother everything! That will never stop! But there are ways to tell and when I'm crying and feel like I'm falling apart, it's not that time. By the time we end our conversation, I am relaxed and re connecting with my inner calm. Frank calls to check in on us both. I can hear how upset he is, that he can't fix this and he is reminded of his own experience with pneumonia when he was a kid. To this day he remembers the head pain from coughing and having to be in the hospital for five days. Of course, he realizes nothing compares to what his son is going through, but he can be empathetic. We have been advised that it will take all week to get Zack healthy and next week will start his chemo treatment. Frank and I are making arrangements for him to come Wednesday night and Thursday so I can at least work one day this week. I will then return Thursday night through Sunday. We will then figure out next weeks schedule.

It is now Tuesday morning. Zack had a fairly good night's sleep. He would cough when he had to get up to use the restroom, but otherwise slept well, thanks to the Benedryl. We are awakened at 9 am by Chris, our nurse for the day (and as I tease him, a Vin Diesel wanna be).  He is accompanied by a young lady who is here to bring Zack down for his CT scans. While Zack is away I jump in the shower and get the room in some semblance of order. The counter is full of chips, danish, Gatorade, water, ginger ale and green teas. There is a small "parents room" down the hall with a small refrigerator. In that is a tray of cheese, salami and crackers, as well as his favorite hot wings and Greek yogurt. Never knowing what or if Zack will eat, I want him to have enough of a variety. By the time I am finished with the room, Zack returns.

Karen, our social worker from the Cancer Center comes in to visit for awhile. Zack is sitting in the chair and in good spirits. He is talkative, but soon realizes that it comes with the consequences of coughing. He tries to eat a little danish, but after two bites, gives up. I received a bill from the Hospital for one of the Hospital stays last December and it shows that we owe $9,000. Knowing that the deductible and out of pocket has been met I freaked out. Since I am not home and left a lot of the paperwork there, I ask Karen if she can get me a print out of that day / week of services so I can determine what the problem is. I'm hoping it is a billing error, but one never knows. Insurance doesn't guarantee they will pay everything! She returns with the printout from "their" orders and offers to help should they need to fax anything to me, by bringing it back to the hospital. Luckily, I find the insurance website and look up the Explanation of Benefits (EOB). Though it is still not clear, I can make the necessary phone calls tomorrow and hopefully figure it all out.

Dr. OB is on call today and comes in with confirmation that Zack does indeed have pneumonia. They fear it is fungal by the looks of the scans. They also did a CT of his sinuses and he has all but one area that is clogged. Though this is considered "normal" for one under the type of strict protocol treatment, it is still a concern. The good news is they now know what medicine to give him for his sinus infection. I make a comment about wishing Drs. Steve or Nancy could be here with their activators. (we had an ice storm last night so everyone is grounded) Dr. OB asks what that is and what is done with it. I proceed to explain how it helps to relieve the pressure on the sinus when used in specific areas of the face and the sinus in most cases open up and drain. He is fascinated with this and says "hey if it works" to which I reply "it does!!!" Like I said, there are many things out there that work!! I further explain that since working for the Cagens I have not had to take sinus medication and I used to have to take it every year!! The Dr. then tells us he has contacted one of the best Drs to do a Bronchoscopy . He tells us that Zack is not to drink or eat after midnight tonight and the test will be done at 11 tomorrow. He will be given anesthesia during this and once done and several biopsies are performed they will know exactly if it is viral, fungal or bacterial. They will then move right into the proper treatment.  (A bronchoscope is a device used to see the inside of the airways and lungs. Although it can be flexible or rigid, a flexible bronchoscope is almost always used. The flexible bronchoscope is a tube less than 1/2 inch wide and about 2 feet long. Rarely, a rigid bronchoscope is used.  The scope is passed through your mouth or nose, through your windpipe (trachea), and then into your lungs. Going through the nose is a good way to look at the upper airways. The mouth method allows the doctor to use a larger bronchoscope.) They will go through his mouth. 

The good news is that Zacks counts continue to be up, which means his body is able to work on healing itself as well.  We spend the rest of the day relaxing, Zack watching shows to keep his mind occupied and me trying to catch up on reviewing medical bills, EOB's and phone calls. I had a Webinar that I signed up for a couple of weeks ago, discussing  Medicare Billing, Coding and Procedures ( I know, but I find it interesting). I had originally thought it was noon EST and turns out it was Pacific, so at 3 pm I sat in for about two hours and listened to the most boring voice, not a good speaker at all!! with um and you know's all over the place, but the information was good, nothing new, but good. 
By late afternoon we had Leah, her baby and new boyfriend (this week) come to visit. It was a nice short visit. I played "mother" and twenty questions to him. At first he was stand offish, but by the end of the conversation he said "you're pretty nice." DUH!!! Of course I am! (smile) . Once they leave I sit and start writing the blog. I'm never sure why, maybe I'm long winded, but it usually takes me a couple of hours. I take a break and head downstairs to grab dinner. My "partner in crime" Sister Rhonda could not join me tonight. She got a new job and starts training next week. With me being in the hospital and work, we are spread thin for a week or more, so, She was taking Mom shopping today for groceries. Enough to last a couple of weeks! 
On my way through the cafeteria I see the young man that would usually bring Zack's meals to him (had we not cancelled them all). He walks up to me and while giving me a hug, asks how Zack is. His name is Nick and he is the same young man that stopped me in the hall earlier this week asking the very same question. I filled him in on the latest and he tells me to tell Zack hello and he is wishing him well. He tells me he will be back on Saturday and even though he doesn't deliver the meals to Zack, he will stop in to say hi! THIS is what makes these days special. To the Pediatric Team, we are not a number, we are a family and we all form a special bond that I will take with me forever!
I am in the middle of my meal (which was so dry I was trying to figure out whether to finish it or throw it out) when I got a text from Zack asking me to come back up! He NEVER has done this, so I jump up, grab everything, throw out my dinner and run down the hall, around the corner, up the elevator to his room. He looks upset and scared, he had thrown up (something he HATES!) He apologizes and says he didn't mean to take me away from dinner. "That is what I'm here for!"  It turns out he had such a bad coughing spell that he lost what little was in his stomach. I get the nurse to come in and he gives him some percocet for the head pain. Since it's better for him to have some food in his stomach with that medicine, I grab some saltine crackers from the nurses station and he manages to eat a few along with his water. 
I have him order a PPV movie on his computer from DirecTV (free advertising) as I know it will keep him occupied until time for bed. Rhonda calls and says she has presents for us and will bring them by in the morning. More spoiling!! We are exhausted but feeling that things are heading in the right direction. It will be weird to go home tomorrow night and return to work on Thursday, but I am looking forward to a "normal" day and know that Zack will be in very good hands with Frank and the Nursing Staff and Doctors. 
It is now time to rest my head, get hooked on the next episode of "24" and pray for another good night's sleep for Zack. Until tomorrow, Thanks for all the notes, texts, phone calls and posts on FB. We are NOT alone in this Journey and THAT is what makes it more bearable!! 


  1. Ok teary here...strong baby boy (always babies to aunties) Love you all so very much. Prayers for resolution of the pneumonia and sinuses to be swift and simple. Prayers for the strong will of Zack. And for you Brie. You are amazing. We may not be there physically, but spiritually we are not far. And in thought. And you have these crazy long days! You do so much. And we feel helpless to help you. Zacks strong, smart, and loved. And im sappy. Xoxoxo

  2. Aw thanks Mushy mini sis!!!We love you too!!