It isn’t often that we talk about certain personal information as most of the time, we try not to bring people down with OUR problems.
But there comes a time when we are left with no choice but to sdhare our burdens. So, in a nutshell, here it is:
27 years and one month ago, our only child, Allison, was born(on our second annivversary, BTW(.
Our joy as first-time parents was tempered the following day, when our newborn daughter was diagnosed with what the pediatric cardiologist descrimed as a huge heart defect, called a VSD(ventricular septal defect). The normal VSD is just a hole in the wall separating the right and left ventricles of an otherwise normal heart.
But in Allison’s case, there was no wall at all, and her lower heart was essentiall just one chamber, the size of one ventricle.
She had her first open-chest surgery a few days before she was 6 weeks old. The surgery was to place a band around her pulmonary artery, to prevent excess blood pressure to the lungs. This surgery not only saved her life, but it gave her time to grow, so that whenever another surgery became necessary, she would have a larger heart and chest cavity for the surgeons to work in. She was able to come home a few days after the surgery.
A week later, we had to race her back to the hospital as she was blue and had stopped breathing several times. This time, her paracardial sack had filled with fluid. They were able to put a catheter in her chest and drain all the fluid, and she was healthy enough to go home after a couple days of observation.
Fast forward to February 1993. She was two years old, and her heart was having a hard time keeping her oxygenated. The cadiologist told us it was time to start planning a trip to Portland, Oregon(Did I mention that we lived atr the time in Anchorage, Alaska?).
Just one day before we were supposed to fly to Portland, allison contrracted RSV, a respiratory infection in babies that is very aggressive and even healthy babies can get gravely sick from it if it isn’t detected in time. The doctors immediately admitted her to Providence Hospital in Anchorage, and put her in an isolation tent and fed nebulized medicatiuon to treat the infection in her lungs. this was considered the most radical treatment to eradicate the infection. As it was, it delayed our travel plans to Portland by about two weeks.
We finally arrived in Portland, where she would remain at Emanuel Children’s Hospital. After several extensive exams and tests, the doctor mapped out the plan for her surgery. She would have what is called a “full Fontane” surgery, where the surgeons carefully reconstruct the heart, placing shunts to provide blood flow to the lungs, and rerouting of certain blood vessels to provide proper pressures to her lungs, and other vital organs.
This surgery’s main purpose, once again, was to buy her time to grow, so that she would have a better chance for growth, and to give doctors more options as she grew. It was by no means a permanent solution, but it was the best stop-gap procedure for her condition.
After surgery was complete, the doctors gave us a run-down of possible side-effects she might suffer from at some point months or years down the road. It was a pretty long list. But one week after surgery, she was well enough to fly home.
That list, which the doctors told us could happen in perhaps the next 8 to ten years, happened to Allison within the next 12 months.
Once we were back in Alaska(we had moved from Anchorage to Wasilla), a couple of months went by, and Allison began having wildly varying arrhythmia. Her pulse would shoot up over 200. She was clearly in distress. Several hospitalizations would follow, and she was struggling more and more each time. By late summer of 1993, I noticed a significant change in Allison’s digestive function, Seems whatever she ate would come out the other end looking pretty much the same as it did on the way in.
The doctors would do blood-work and find that her protein and lipid numbers were very low, so they would start IV’s and give her protein and lipids. This would make her feel a bit better for a time, but then we would end up going through this again…and again…and again, and she was losing ground every time.
Then, a few days before Christmas of 1993, Susan called me while I was at work, and told me Allison was listless, and wanted to be held and rocked all day long. I asked her to call the doctor and fill her in, and she did. When I arrived home, Susan told me that the doctor said if she wasn’t doing any better by the following day, to bring her in.
But I took one look at Allison, and realized something Susan had not been able to notice(because she had been with her all day). I told Susan that Allison wouldn’t make it to tomorrow. She was a darker shade of blue, and was fading into and out of consciousness. I immediately called the hospital to tell them we were on the way. We lived 50 miles out from the hospital. I told Susan to pack a diaper bag for allison and an overnight bag for her. As Susan packed, Allison had a major blowout in her diaper, and it was filled with blood!
In what seemed like 30 seconds I had her changed, and popped her into her coat and had her in the truck. Susan and Allison and I raced to Anchorage. We were fighting the clock now. There was no time to wait for an ambulance or a life-flight. I sped at speeds approaching 90-100, and we arrived at the Emergency Roomentrance to the hospital. I grabbed Allison and stormed into tyhe ER, and started barking instructions to nurses and residents. “get her 0n O2 NOW! Get an IV started! Get Dr. Brauner here ASAP!
Her Blood Pressure fell to almost nonexistent(42/40). The nurses and resident could not get an IV started because her veins kept collapsing.
As I was kneeling next to her cot in the ER, talking to her, I felt something brushing the back of my neck. But my focus was totally on Allison, our precious and only child. a minute later, Dr. Brauner arrived, and he immediately started a Broviac in her neck, which was the fastest way to get her IV fluids started. When he cut into her neeck and started taking over, one of the nurses asked me who I was(she thought I was a doctor).
Susan filled in the blanks for the nurses…I was Dad, not Doc. And with tears gushing, Susan told me what I did not see, but what I felt on my neck. The room had been visited by 4 angels, hovering above the cot. My body was so filled with adrenaline that something almost knockd me to the ground once Susan told me what she had seen.
Once the doctor had the Broviac in place, and Allison got fluids in her bloodstream, she began immediately to pink up. 30 minutes later, up in pediatric Intensive care, She was sitting up in the hospital bed, with her legs crossed when Dr. Brauner came into the room, she said ” Hiya Doctor Dave!” In the course of 30 minutes she had gone from death’s door, to looking and behaving like a toddler with a larger vocabulary than any toddler should have.
After several days of monitoring levels, and keeping her hydrated, they sent her home. How I wish that had been the end of the hardships. But just a few weeks later, the entire scenario would play out again, this time, it was even worse. it was January 1994.
Once again, we stormed into the ER, and went through the whpole process again, and after again having Allison so very sick, Susan and I were literally nervous wrecks. How I found the energy to speak, I am not sure, but I sat down with the doctor(Dr. Dave), I insisted that he and the rest of the cardio doctors pay close attention to what I was about to say. The problem isn’t just her heart, it is her gut. Now YOU need to call in the best gastro-intestinal; specialists we have in this state, and we need to get to the root cause of the problem, instead of just pumping her full of proteins, sending her home and then repeating this a few weeks later. And I emphatically told them: “You are NOT going to send her home until we know what the problem is, and we have fixed it!”
And just as emphatically, I told them that Susan and I simply cannot handle one more episode like this, as it took such a toll on our nervous systems. Wer prayed like never before. Susan lived in Alliuson’s hospital room nearly the entire time for the next three-and-a-half months.
I had to keep working, as I was the soul breadwinner at the time, and I had to keep house and home going.
As January was ending, I had to fly to Fairbanks to cover the State High School Basketball Championship tournament. While I was in Fairbanks, my schedule was full all day covering 8 basketball games each and every day of the tournament. Susan and I finally connected on the phone on February 2nd(the day before our anniversary and Allison’s birthday. The Gastro-intestinal doctor and the cardiologists ran more tests and discovered the cause of the probolem. A fenestration(a hold purposefully put in the wall between the left and right atrium(to correct blood pressures in the chambers of the heart) had closed up over the course of the 11 months since her Fontane in Portland. This caused blood pressures in her vital organs to be dangerously high, which had resulted in the intestines beginning to break down(like Swiss cheese, full of holes, weeping all the proteins she was eating into her belly, and starving her at the same time.
The solution? Go into her heart with a catheter, and re-open the fenestration, correcting the pressures in her belly. The surgery was schedule for mid-morning oin…you guessed it…Allison’s third birthday, and our 5th anniversary. And I was going to be calling basketball games all day. It was the single longest, most difficult day of my life to that point. Aftyer hours of waiting to hear some news, I finally heard from Susan…the surgery was successful, but then the real waiting started. They would have to keep Allison in the hospital for another three months, feeding her intravenously wiuth an NJ tube feeding a spoecial formula for her intestine that would heal them from within.
Allison could only have very limited intake. She was allowed to drink milk, but no real solid food for a long wait.
I had kept on working, and would get to the hospital on weekends to reconnect with Susan and Allison, as I spent the rest of the weeks keeping the home fires burning. I was as drained, tired and lonesome as I could be. I was so listless, I lost all track of time.
So when I finally got to take my wife and daughter home, it occurred to me that I had left the Christmas tree up in our living room, with all the presents still beneath the tree. That is when it hit me what we had just been through.
That takes us to a convenient point to pause this story. We’ll bring you part II on Wednesday on The JJ McCartney Show.