Mazzy had her first surgery (a BT shunt) at 5 days old and spent 9 weeks at Children’s National Medical Center. She had her second OHS (Glenn-Kawashima) and an additional surgery to place a pacemaker at 8 months old, spending an additional 5 weeks at Children’s. After her second OHS, Mazzy thrived and started daycare a few months later, where she made lots of friends! She loves to sing and dance (Row Row Row Your Boat is her favorite), paint and play with bubbles! We planned to have her third OHS (the Fontan) when she was 2.5-3 years old. This surgery involves connecting her liver (hepatic) vein to her lungs (pulmonary artery).
At a recent pediatrician appointment on June 8th, we discovered Mazzy’s blood oxygen saturations (sats) were in the low 60’s when they should have been in the 80’s. We thought this may have been due to a virus she had earlier in the week, but on the advice of her cardiologist we went and were admitted to Children’s expecting an overnight or weekend stay. Soon it was apparent that the situation was more sever -- on June 13th, Mazzy underwent her fourth cardiac catheterization to diagnose what was going on. We expected the cath to fix the issue, but we were surprised to discover that Mazzy developed a rare complication called pulmonary arterio-venous malformations (PAVMs). Unfortunately, the only solution to this complication is to perform her third surgery, the Fontan, about a year earlier than anticipated. We expected her recovery to take about 2-3 weeks.
Mazzy underwent her surgery on Tuesday, June 20th. Her complex heart required some non-traditional modifications by the surgeon, but overall the surgery went well. Unfortunately, shortly after her surgery, Mazzy had problems maintaining her blood pressure and suffered from an episode of severe hypotension (low systemic blood pressure) resulting in some damage to her internal organs. Mazzy’s liver and kidney ended up in acute failure and, after seizures were discovered on an EEG, a CT scan revealed some brain injury/stroke likely due to the low blood pressure.
On Saturday June 24th, Mazzy had another cardiac cath that luckily showed that her heart was functioning well. Her liver seems to be slowly recovering most of its function, with a few important exceptions doctors are still trying to figure out. Her renal function has been not improved significantly and she is on temporary dialysis to help give her kidney a rest. She is on medication to control any seizures, and yesterday she cracked open her eyes for the first time in a week and a half and squeezed my finger. Unfortunately, her liver dysfunction is leading to high ammonia levels in her blood, which are leaving her almost completely sedated. She continues to rely on a ventilator for respiratory support.
The doctors can’t predict what will happen with Mazzy at this point. She is showing slow signs of improvement in some areas, with some areas still needing significant improvement. The effects of the brain injury will not be clear until her other systems have recovered and they can do a clinical assessment. What we do know is that Mazzy will be at Children’s for quite some time.
We don’t usually ask for help and thus far have managed through Mazzy’s other surgeries and weekly doctors and therapy appointments for the last year and a half with the help of our super supportive family (thank you Grandma Dianne, Grandma Kathie, Grandpap Jim, and Aunt Suzi!). Unfortunately, we weren’t quite prepared for this turn of events. We will likely be “living” at Children’s for at least a month, and likely longer. The costs of meals and parking certainly add up. We continue to pay for Mazzy’s daycare, to hold our spot, since we aren’t certain when she’ll be able to return.
Her father, Matt, and I have nearly exhausted our paid leave in the last three and half weeks. We are both going back to work while Mazzy is in the hospital, but working full-time is difficult under the circumstances and we will have to begin taking unpaid FMLA leave soon. If Mazzy has any neurologic impairment from the stroke or requires extra medical care after discharge, we anticipate that Matt will have to take extended leave from work to help take care of Mazzy. In addition, I’m 6 months pregnant with Mazzy’s little brother (we’re taking name suggestions!) and, as a juvenile diabetic, have high risk doctor’s appointments every 2-3 weeks and soon, every week. All we really want is to spend time with Mazzy and help her heal and recover. Thank you for your prayers, thoughts and support! ~The Holmes
If you want to follow Mazzy's progress and get a peak into family life in a pediatric Cardiac ICU, go to our Facebook page at Mazzy’s Amazing Heart Journey.
- Joe Turner
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