When I was a teenager, I’d pour all my angst into my journal. Every crummy thing that transpired was recorded with detail. I had many happy moments and much to celebrate but those times would always get left unwritten because I was too busy enjoying the good. I didn’t mean it to be that way. It just became the best method for me to vent my frustration with life.
It seems that this family blog has met the same fate as my high school journal. I have many wonderful memories of our summer’s activities and autumn doings that I’ve meant to share but have been hard pressed to find a free moment to relay them. Instead, I’m writing today with bad news.
Maddie was hospitalized late Tuesday night. Bringing her into Children’s Hospital with suspicion of pneumonia turned into the discovery that she was experiencing heart failure. Her liver was extremely bloated (4 cm) and her body was under severe stress.
Let me back up. All four kids had been sick with a viral illness for several weeks. Maddie was actually the least affected one. Jake and Joe started antibiotics for sinus infections and Maddie started the same medication just to be on the safe side. Her complex anatomy and recent heart surgery keep us erring on the side of caution. Warren’s asthma was bad enough to visit a specialist who started him on heavier medications. They all completed their course of antibiotics, everyone seemed to be improving, and we moved on with our busy schedules.
It’s been fairly cold here recently. Some days were in the low 30’s. Little feisty Maddie often refused to wear proper gear when going outside. Her bluish lips didn’t seem that out of place as she stood at the school bus stop with minimal coverage.
When the third day passed with a progressively worsening cough, prolonged cyanotic symptoms (blue lips, etc.) even after the blankets were piled on, and decreased energy, we decided to take her back to the doctor. There we were told that her chest x-ray showed some fluid accumulation. It could be a pneumonia. We’d better go to Children’s Hospital’s ER for further testing.
Upon arrival, we learned that her INR level (used to measure the thickness of her blood while on Warfarin) was through the roof. Her normal range is 1 to 2, where she’s been since the Fontan surgery. The lower the number, the thicker the blood, the higher the number the thinner. Both ends of the spectrum have their problems, especially for Maddie’s circulatory system. That night she was at a 12. My jaw hit the floor.
Meanwhile, we’d watched her oxygen saturation levels lower on the monitor. They started her on oxygen and tested for bacterial and viral infections. Nothing was showing up and after a few hours of monitoring and a bit of sodium chloride to help her dehydration, they were considering letting us go home. When the ER doctor tried to wean her off the oxygen her vitals stopped looking good. At 2:30AM, she was admitted for closer observation.
Everything took a turn for the worse the next day. The doctors and medical team held “rounds” that morning and were still debating on the symptoms. It didn’t seem like pneumonia, though they continued new antibiotics just in case. An echocardiogram ordered for the afternoon would provide more information about her pulmonary veins, which are always problematic for her, and of course would see what was going on with her special little heart.
The results were like a blow to the head. She was experiencing heart failure. Because her heart muscles were not contracting properly, fluid was backing up causing increased pressure in her Fontan circuit and bloating to her liver. Nobody really had answers for why it was happening. She’s always a challenging cardiac puzzle to piece together.
Did the virus she contracted along with the rest of the kids become too taxing for her heart to handle, making her circulatory system weak? Or was she already experiencing failure slowly over time and we just had no idea?
It’s Friday (technically Saturday since I’ve finally gotten the emotional strength write this down at midnight), and we think that we’ve gotten things figured out as best as possible.
The most likely case is that she was already deteriorating. This virus was just too much for her to handle. The fact that finding her veins during blood draws for INR checks had become increasingly more difficult over the last couple of months may have been a sign we just didn’t recognize. The IV fluids she received probably pushed her over the edge, since pumping extra fluids directly into an already taxed blood stream only causes backup in the system. In other words, it was only a matter of time and we just didn’t know. At least it was sooner rather than later.
But things are looking up. Once they began draining the fluid with our old friend Lasix and starting her on Enalapril for her heart muscle contraction she’s been showing steady improvement.
In order for her to go home she needs to be completely off the oxygen, have little fluid in her lungs and liver, and show stable vitals: good heart rate and respiratory rate. They’re hopeful for the beginning of next week. We’re hopeful that it’s at least before Thanksgiving.
This is a set-back to her overall health but a manageable one once she’s stable. Her echocardiogram today showed improvement in pumping function but also a new issue with leakage in her tricuspid valve. We don’t know how that will resolve yet. At the very least she’ll be taking the Enalapril medication indefinitely.
We are exhausted. It was all so sudden and unexpected. Everyone, especially Warren, Jake, and Joe, have felt the emotional impact of this situation. They miss their sister incredibly. Maddie is holding up but would give anything to go home and be with her brothers. I could barely bring myself to write this story down because it’s so raw and lengthy and unbelievable. But as I was watching “Grey’s Anatomy” to zone out and realized that I understood about 95% of the medical jargon and procedures they were rattling off, I figured I was ready to share.
And I am ready to share. This has been a roller coaster ride with many unknowns but we have already witnessed miracles and felt the strength of endless prayers. You, our dear family and friends, have stepped in once again to provide support and encouragement, meals and babysitting, and so much faith and love.
One day I want to share with you the happy times that we lived this summer as we watch our fighter girl Maddie run and play like she always wanted to do but never had the energy for pre surgery, and post pictures of all the laughing we did as we had adventures and breathed in the summer air. But right now I will share with you our gratitude for our precious girl’s life, for our happy family that has unified under the strain of this trial, and give our unending thanks for the kindness that you continue to show to us.
We appreciate all of your prayers and good thoughts.