To subscribe to Email updates click the Email List Tab above.
Finally Under One Roof
Discharge Day finally came. Our last remaining and seemingly unattainable hurdle has now been conquered. Zachary has left the building.
The transport people had loaded Zachary into the ambulance and were prepared to leave The Children's Home. Normally on ambulance trips such as this, I resume a role as "Traveling Dad" and sit next to Zachary on a bench seat of sorts. However, this time there were a tad too many people in the back of the ambulance for me to sit next to my son. So this time I got to ride shotgun.
Wow! Riding in the passenger seat in an ambulance seems like such a cool thing to do. There was the CB radio, the lights, the siren... all kinds of fun things to play with. I was feeling like a little kid in a candy store. This was gonna be such a fun ride out to the regional county airport. A mighty convey of one. Breaker breaker good buddy. If only the ride wasn't so short.
However, reality soon entered the picture. The radio was off limits. There were no lights or siren to be used. To make matters worse, the driver of the vehicle, a man who apparently hasn't seen another human being for years, began to ramble on about the evolution of the ambulance. Let me add that it was a long ramble. It looks like I was a captive audience to a driver who sole job wasn't just to drive from Point A to Point B but also to educate me on this illustrious history lesson. If only the ride wasn't so long.
Fortunately the past two years of sitting next to Zachary's crib has heightened my ability to tune out the bells and buzzers associated with his various monitors. I adapted this newly developed skill to tune out the nonstop chatter from Mr. Historychannel and focused on the days ahead with my soon to be reunited family. If that didn't work then I would resort to Plan B. This would entail raiding Zachary's accompanying medicine box and consuming as many of his sedation drugs for my own personal use.
Fortunately we arrived at the airport before the raiding commenced.
Pulling up into an airport venue via an ambulance gives one a sense of power. With great power come great bragging rights as we proceeded to bypass the usual entrances and pulled right up beside our plane. It was like we got to Pass Go and collect our $200 without security screening. It didn't take long before I realized that driving up in an ambulance when taking a trip on American Airlines was certainly the way to go. Of course, owning your very own private plane has some merit too.
The flight to BWI went off without a hitch. There was little to no turbulence and I got a window and aisle seat at the same time (a small plane has its advantages). Add to this perk the fact that there were plenty of snacks on board and no one had to tell me to put my seat in the up-right position before landing. Yes, I really have to get my very own plane... all for Zachary's benefit of course.
The final leg of the trip involved a 30 minute ambulance ride to our final destination. Coming home was a great ending to such a long journey. Many months away from home make one appreciate squeaky hardwood floor, sticky doors and occasional low water pressure. But when your family is finally under one roof who really cares about the flaws of the house.
I just have to enlarge the driveway for my new plane.
To be continued...
Brian and Deanna
Parental Decision Making Ability
Most of last Wednesday is a blur. I remember getting up somewhat early, brewing some coffee and visiting Zachary at his crib to view a very comfortable and sleepy child enjoying the last few hours of his good night's sleep. He didn't see it coming (nor did I for that matter) of the amount of activities that were in store for the both of us that day.
Zachary was scheduled to be picked up by the ambulance people at 10am. With this in mind I figured that I could get in all of the packing if I started at around 9:45am. This, of course, is how all men think. Give us a few boxes, some tape and a handful of pillow cases and we can pretty much pack up anything. Zachary's female nurses, on the other hand, had other thoughts in mind. They insisted that I start packing up stuff at 7:15am.
Seven fifteen? Are you kidding me? Even the birds aren't up that early. Well... some of them aren't.
Ask any man and they will confirm that this course of action is overkill. As everyone knows, successful packing requires two initial components: ample caffeine in the bloodstream and about 15 minutes of planning. Anything more require a college degree. Besides, I wanted to finish my coffee and watch a little CNN before I started to pack things up. After all, it doesn't take much time to gather up a child's things. This would take, at the very most, three pillow cases. The nurses however were insistent about packing Zachary's belongings as soon as possible. So to make things a little easier on all of us I struck up a compromise.
We started packing things up at 7:15am.
Of course my role as the father of the patient carried little weight when it came to parental decision making abilities. For instance:
Nurse: Do you need these 3ml syringes packed for the trip?
Brian: Um, probably not. I think there are plenty of these at my house in Maryland.
Nurse: Well, your wife may need these so we had better pack them up just the same.
I'm not really sure why I was needed in the room in the first place.
Throughout the morning I spoke to various medical vendors, doctors and other various official looking people carrying clipboards. I answered many questions pertaining to discharge and downed a few donuts in the process. It seems that I may have underestimated what needed to be done and thus didn't have quite the free time to pack that I was hoping for. It's a good thing that I had help. The swiftness and efficiency of the nurses to pack up Zachary's medical supplies, paper records and toys was something that U-Haul could take a few notes on. The best thing that I could do to help was to stand back and stay out of their way.
As the clock struck 10am there were several well packed boxes that were taped and stacked neatly on top of a cart just ready to be wheeled down to the lobby. In the end, discharging Zachary from The Children's Home proved to be a rather easy task for me. It's amazing what a cup of coffee and some planning can do.
To be continued...
Brian and Deanna
Thousands of Footprints
I hear the election results blaring from a tv located in a common room about 20 feet from this computer at The Children's Home. Even though this election night is an important night for people all over America the only person that I'm concerned about at this moment is my son Zachary. He is spending his last night at The Children's Home in a warm bed surrounded by monitors that glow and machines that ring. His last night here will be just like his first. The nursing care will be constant. Their attention to his needs will be no different than the night before. Zachary will, by all accounts, never know the difference.
But even though the routine is the same, everyone knows that this is not just any normal night. It is Zachary's last night in Pittsburgh. It is a special night to be savored in the same way a young child savors Christmas Eve with the anticipation of presents the next day. Although it is getting late for me too, sleep will have to wait. For now, I am too edgy thinking of what lies in store for my family tomorrow.
Wednesday is Discharge Day for my son. This is the day that we have been looking forward to for a very very long time. The plan is for the ambulance to pick Zachary up at 10am and take him to Allegheny County airport. From there he will board a medical plane that will fly him to Baltimore-Washington International Airport where an ambulance will take him on his final leg to his home in Severna Park, Maryland. Arrival time is somewhere around 1pm.
I've been asked numerous times if I am excited about tomorrow. To be honest I am somewhat calm about the whole thing. We've seen this date pushed back more than one time over the past few months. Perhaps when the plane is taxing down the runway I'll start hyperventilating with excitement. I can say with 100% conviction that I look forward to returning home to see Deanna, Aidan, Maddie and my dog Bailey. I am looking forward to walking around in my house in my socks, seeing familiar photos on the wall and of course, sleeping in my own bed. Watching Zachary sit on the floor with the rest of the family milling about is what I have been visualizing for months now. These moments are just within my reach.
What my family has gone through over these past several months has been daunting for sure. We have put our lives on a slow motion pace while the rest of the world kept moving forward at regular speed. Even though we endured this gauntlet we know that we didn't do it alone. Many friends, acquaintances and even strangers have helped us along the way. This was a journey that left behind thousands of footprints on our path.
Tomorrow will certainly be a special day for my family, our friends and everyone else who has followed Zachary story over these past two years. But this story doesn't stop here. It will continue for many years to come. Maybe it will be my son's name blaring from a tv set on Election Day years from now. The world is a large place with plenty of opportunities and Zachary is just getting started.
As I mentioned in a prior blog, I have written a book describing Zachary's ordeal with his hospital visits, transplant and other insights. A publishing company has recently accepted my manuscript and is now in the process turning this into a book. I will continue with my shameless promotion of "A View From Bed 15" well after the book is available for all interested. Keep checking back on this site for more continuing blogs on Zachary's progress and life at our new home... I mean our old home. I've got to get some sleep.
Brian and Deanna
johnjoss22@msn.com
Happy Halloween
PICC, The Days After
Just a few days after coming back from Children's Hospital I was in proud daddy mode. After all, Zachary had just received his brand spanking new PICC (peripherally inserted central catheter) line in his arm and was smiling at just about anyone who came within ten feet of his stroller. He was moving his arms more and more and in general making a great leap of improvement from one day to the next.
Later that day exhaustion overtook my son and he settled in to a good night's sleep. I went to bed that night feeling pretty good about everything.
Then that all ended the next morning when I got a call from Zachary's nurse at 6am. It seems that my nocturnal and over exuberant son decided to take advantage of his new found motor skills and promptly pulled the PICC line nearly out of his arm. The nurse calmly assured me that all was fine but that Zachary would need to make another day trip to Children's Hospital that morning to mend the problem.
Being that I was awoken from a sound sleep at 6am I can't be held accountable for my response. However, I'm sure of two things:
1. Whatever I said wasn't elegant and
2. I am pretty sure that whatever I said can't be repeated in this forum.
So back up to Children's Hospital Zachary went to undergo yet another line procedure. It wasn't even a week before that PICC was inserted and I was once again discussing this procedure with the same surgeon and same nurse practitioner. It's a good thing I bought the PICC Line extended warranty. This time however, the line is in a different spot (Broviac for all of you medical folks) and not as easy for Zachary to pull out.
So once again my son is back at The Children's Home resting, smiling and watching the video Shrek for the 15th time in a row.
Brian & Deanna
johnjoss22@msn.com
Early Morning Smile
It can be an uplifting experience when you walk into your child’s room in the morning. Usually you expect to see them sleeping soundly all snuggled in bed as the hints of the rising sun announce its inevitable arrival through the window. It is one of those Zen moments that you look forward to each day.
This morning however, threw me off guard as Zachary was not sleeping peacefully but fully awake and happy to see me. Yeah, that’s right. Me! Upon my entrance he turned his head and watched me approach his crib where he promptly flashed me a smile. For a kid that has recently restarted to grow his teeth this took some effort. His smile really made my day . . . and it was only 9am.
Let me bring everyone up to date on Zachary. Last week he had a line infection that required his admittance to the PICU at Children’s Hospital. The peripherally inserted central catheter or PICC line that Zachary needs for the administration of various drugs was found to have some nasty bacterial bugs growing on it. The best way to take care of this situation is to remove the line, begin dousing the patient with antibiotics and after 24 to 48 hours reinsert the line.
Zachary now has a newly inserted PICC line in his left arm . . . no wait, it is in his right arm. Wait, no, left. Ah, this has happened so many times that I really can’t remember. The point is that my son has a new line that is bug free. We paid extra for that. Zac has been discharged from Children’s Hospital and has been occupying his old room at The Children’s Home for the past several days. He is back to his daily routine of stroller rides, tummy time exercise movements and a few episodes of Mickey Mouse videos. His new hearing aids appear to be doing the job as Zac is fully attentive to the tv in his room as it blares at near full decibel volumes.
His mood has been incredible. Zachary is smiling so much during his waking hours that I am beside myself with joy (and somewhat deaf now that the tv is this loud). Instead of acting like he is in some type of discomfort with frowns and grumpy faces, Zachary will look at anyone with interest and happiness. The early morning smile is not something of an exception. Lately it has become the norm.
So the question is this: Is Zachary in a better mood because the doctors at Children’s Hospital did a great job or is Zachary just happy to be back at The Children’s Home? Since I have friends at both locations I will hedge my favoritism and say that it is probably a little bit of both.
Zachary’s doctors want to wait until his regiment of antibiotics has run their course before discharging him to Maryland. Using a complex algorithm of highly advanced mathematical calculations I have determined this to be next Wednesday. Basically I took the 14 day regiment and followed the calendar although I must admit that the math thing sounded way cooler.
So Deanna will have to hold the fort down a little while longer at our house in Severna Park. Just another week. Just another 7 days. Just another 168 hours. More than enough time to see smiles from Zachary.
Brian & Deanna
johnjoss22@msn.com
15 Minutes of Fame Continues
It looks as if Zachary Johnson will be a household name during the next few days in and around the Pittsburgh, PA area. He was photographed last week for an interview in the Post-Gazette newspaper focusing on our new digs at The Children's Home.
Upon clicking on the link below you will see a well dressed and sleepy Zachary sitting on my lap. Zachary looks good of course. I, on the other hand, was fighting a cold and was wearing a mask. Thus, I look like a maraudering bandit with nice hair. For all of you who will no doubt notice the blue glove on Zachary's left hand, don't think that we are trying a new 80's retro fashion statement. The reason for the glove is that Zachary was prone to scratch his face with his now fully functioning left hand.
Just think, several weeks ago Deanna and I were hoping to see more movement from Zachary arms. Now that he was scratching his face we were hoping that he would move his arms a little less. I guess we as parents are never satisfied.
Follow this link to read the Pittsburgh Post-Gazette article:
http://www.post-gazette.com/healthscience/health.asp
Follow this link to view the Pittsburgh Post-Gazette video:
http://www.post-gazette.com/multimedia/?videoID=101076
Brian & Deanna
The Fish Hook Story
|
I have buddy in Rhode Island who makes routine trips to the local Emergency Room. It seems that his 11 year old son is quite the athlete and thus tends to push the boundaries of the human body a little more each day. Perhaps a little too much at times. It is not uncommon to find my friend driving to the hospital to deal with his son’s issues of broken bones, stitches or even a fish hook stuck in his head. In all fairness to the fish hook story, I’m told that he still managed to catch a nice sized fish although I'm not quite sure how to visualize that. Apparently this trait (the broken bones, not the fish hook) is common in active kids and although I can’t remember it myself, I was reminded by my mother that I too acquired some frequent flyer miles at the local Ohio hospital. These events, of course, are lost in my sea of youth; apparently blocked out by a brain barrier of sorts. Selective memory is a wonderful thing. As Deanna and I were making plans for our return to Maryland one of the transplant doctors made an odd off-the-cuff comment to me. He said that Zachary will return back to the Children’s PICU at a later date. It is not a question of if, but of when. He said that all of the transplant patients return for one reason or another - whether it is an organ rejection issue, an infection or blood test irregularity. The comment was made with such indifference that he barely broke stride while sipping his hot coffee. His prediction came true last Friday. That afternoon, just a few days before our discharge from The Children’s Home Zachary spiked a small temperature. The usual first wave of remedies was ushered to the front line. A fan usually does the trick. Tylenol was next in line. Neither option worked. A few hours later his temperature showed another slight increase. Later that afternoon his temperature increased even more. At this point the nurse drew blood samples to determine if an infection was brewing. Within 24 hours we got the bad news. The culture was positive – Zachary had a bug. The obvious decision was made to transport Zac from The Children’s Home to the PICU at Children’s Hospital for closer observation and antibiotics. The very place that we were fighting like hell to escape from a month earlier has now become our sanctuary. Ironic isn’t it? It’s been a few days now since the initiation of antibiotics and it appears that Zachary is doing just fine. The absence of a fever or low blood pressure suggests that the bug was contained to the intravenous line and not running rampant throughout his blood stream. Zachary is currently resting in his crib, unaware of the close call that he experienced. Like my buddy in RI, the Johnson family has to accept the fact that we will visit the hospital several times each year. Aidan may require a cast. Maddie may need a stitch or two and Zachary will most probably need further doses of antibiotics. However, let’s hope my kids stay away from the fish hooks. Brian & Deanna |
Halloween Gourds
|
I remember watching the Macy's Thanksgiving Day parade on tv with my dad when I was a kid. Throughout the parade the announcers would always bring up the fact that Santa Claus would soon be upon us. That kept me glued to the tv. Of course, Santa's position in the parade was like the caboose on the train - always destined to be last. In order to catch the main attraction I had to sit through all of the other stuff like the singers, dancers as well as all the Snoopy and Underdog balloons. After two agonizing hours of sitting through the fluffy stuff the moment was upon me. Finally the big guy himself. Santa Claus was on center stage. I was at the edge of my seat. Upon Saint Nick's arrival the cameras would show the jolly guy surrounded by lots of elfin type people prancing around in green tights. I was about to be dazzled. But based on Santa's stature, he was way past the prancing phase of his life and thus managed only a wave from his sled and then it was over. The credits began to roll. Only a wave? I felt jipped. Waiting for discharge from The Children's Home is on par with sitting through the commercials. At first we were waiting for the home health nurses to get on board with Zachary's schedule. Thankfully that part is behind us. Check. Then we were waiting the Children's Transplant team to coordinate all of Zachary's medical information with their Johns Hopkins counterparts. Again, that part is done. Check. Transportation from PA to MD? Done. Check. Like the parade, the fluff in Zachary's discharge plan is over. The big event was soon upon us. Monday was marked as the day Zachary would be discharged. We were ready to leave The Children's Home and hang out with the rest of his family, our dog and our home. Monday was not just a penciled in suggested date. It was marked in ink . . . and red ink at that! The future was soon upon us and history was waiting to be recorded. I was giddy with excitement. B U T . . . (you probably saw this coming) For some unknown reason, one of the Maryland medical supply vendors backed out from their commitment. This abrupt change forced us to scramble for a Plan B supply company which in turn set our discharge date back a few days (or more). Granted, a few extra days of time in Pittsburgh isn't alot when you consider that we have already been here for 14 months but that's not the point. I'd really like to find this company's knucklehead employee who made this decision and pelt him/her with a large assortment of Halloween gourds found at the local grocery store. Enough of that. Now on to something less organic. Lately I've noticed that Zachary is gradually losing the "fat face" often associated with post transplant steroids. Other signs of growth are appearing as well, like a resurgence of hair growth and the addition of more teeth. Zac even has a new set of hearing aids that are allowing him to listen Thomas the Train videos as well as the Chuck Norris movie marathon on Spike TV. Zachary's quality of hearing is still subject to a best guess. Until he is able to sit in a sound proof booth and raise his hand when he hears a high pitch noise Deanna and I will have to play close attention to his present day body language for signs of his hearing ability. All in all, he continues to make great strides of improvement here at The Children's Home. So if we have to wait for a later discharge date we will past the time by taking a few more walks outside and watching a few more hours of television inside. In the meantime I'll round up some more gourds. Brian & Deanna |
Ally
|
The world is full of unexpected and unforeseen events. Everyday when we get out of bed we walk among these risks. At times we accept the unexpected and embrace good fortune that lands in our lap. But unfortunately there are times when we have no other choice but to face devastation without any hint or warning. The bad news that you don't see coming is the news that hits the hardest. The pre and post transplant world is not exactly a small world. Throughout Zachary's life Deanna and I have had the honor of meeting some very exceptional people who are essentially in the same boat as us. Sometimes you just see someone in the ICU so much that you strike up a conversation at the coffee machine. Other times you meet people through one of many transplant Internet sites. Either way, we seem to share a common bond of watching loved ones wait for organs. It doesn't take long before these people become friends. As friends we lean on each other for strength, happiness and sanity. Deanna and I met such a couple over a year ago at Children's Hospital whose daughter Ally experienced the same type of transplant surgery as Zachary. Ally was a tremendous fighter who experienced many of the same demons of a transplant recipient as our son. Like Zachary she showed tremendous resiliency and fought constantly for survival. Eventually Ally was discharged from the hospital. Readmitted at a later date. Discharged again . . . I believe that this happened several times. Eventually the battles of infection and fever subsided and a healthy child began to emerge. Ally and her sister Ashley started to resume their bonding sessions. Ally even became Aidan's buddy (there is a pix of her in the Photo Album section). Her family was finally turning the page in hopes of moving forward. But transplant recipients are kept on such a short leash in life. It is a harsh reminder to anyone who undergoes this type of surgery. It seemed as all was going well with Ally until the wee hours of Monday morning when she became sick. Ally was rushed to the hospital to fight off another possible infection. This time however, the fight was too much for the spunky 4 year old to handle. At around 5:00 am Ally had passed away. Ally's journey for organs was inspiring to everyone who followed her story. Her death is a tremendous loss and very hard to accept. She was a beautiful girl, a great sister, daughter and a friend to Aidan. Her passing hits a personal chord with all families of transplant patients. I write this blog for a few reasons. One is to share a story of child that touched both Deanna and my life. The other is to convey just how precious life is no matter what the situation. In the life of a transplant recipient you have to accept that there are just no guarantees. In Ally's case are no warnings as well. So no matter what your health, take advantage of the present and be thankful for what you have. Hug your kids today and tell them that you love them for tomorrow may never come. Follow this link to learn more of Ally: http://allyheintz.aboutmybaby.com/
Brian & Deanna |
