During my almost 8 years in the Army I attended - and graduated from - the Sapper Leader Course. Sapper school is not the toughest thing the Army can do to you, but it’s pretty damn tough. There, high stress, sleep deprivation, hunger, and extreme physical exertion are the normal states of being. I won’t go through the whole thing - Google it or just watch the Military Channel. My point is, when I finished Sapper school, I thought I was pretty tough. Having never served in combat, it is probably the toughest thing I have ever done. The last month has been pretty stressful and - in some respects - I think it rivals my experience in Sapper school.
We spend most of each day at the hospital. We arrive sometime between 8 and 9 each morning, and we leave sometime between 6 and 10 each night. Although we are lucky in the fact that we sleep in our own bed each night, the sleep is not as restful as I wish it was. This adds a little to the stress.
From after the first week or so – when the roller coaster ride leveled out a bit – up until the time Ginny came off the ventilator, our days were filled with incremental improvements. Each day Ginny got a little bit better and there was something to aim for. Over the last week or so, we’ve been able to hold her and take a more active role in her care. She has been awake and alert and has even started to show a little bit of her feisty personality. That has been great. We’ve been trying to get her to breastfeed, though not yet successfully. Unfortunately, the wild stress of the roller coaster ride has been replaced by the quiet stress of anticipation.
Tomorrow will be our last day with Ginny before her surgery. We plan to spend most of it with her while she is alert. Early Tuesday morning – probably around 7 o’clock - she will be transferred from the NICU to the surgery floor. They will begin her day by getting the anesthesia going – including a paralytic – intubating her and getting her hooked up to a ventilator again. The surgery will start by opening her chest at the sternum and then hooking her to a heart-lung bypass machine. The surgeon will then correct her transposed arteries. It sounds simple enough, but he will have to disconnect (read: cut) her aorta and pulmonary artery, switch them around and stitch them back together in the correct positions. While they are in there, they will close her duct (PDA) and repair the hole between her atria (ASD).
The surgery itself will take around 8 hours. Rachel and I do not plan on spending that time in the waiting room. We are going to get away from the hospital, get some breakfast, see a movie – something other than sit and wait. The surgical team will have our cell number and we won’t be too far away from the hospital.
Ginny will go from the operating room to the Pediatric Intensive Care Unit (PICU) after her surgery. Although the correction will be complete, her chest will remain open for 3 to 5 days. She will have a gore-tex patch and a sterile dressing, as well as several tubes and lines into her chest. The lines are there to administer medications and measure the pressures in the chambers of her heart and great vessels. I’m told they keep the chest open to eliminate the need to re-open in case of complications and to avoid complications from swelling or fluid around the heart. As she starts to recover, the lines and tubes will be removed.
Once the swelling has gone down and the surgeons are ready, they will close her chest right there in the PICU. Until that happens, we’re going to limit her contact with people other than Rachel and me, and we’re going to limit our contact with other people. We’re trying to reduce her risk of infection - so, if you’re in Gainesville, please don’t be offended if we don’t invite you in.
Ginny will stay on the ventilator for about a week after her chest is closed. She’ll remain sedated to some degree until then, so we probably won’t see her very much with her eyes open for a couple weeks after tomorrow. After she comes off the ventilator, her big challenge will be learning to feed.
As you can see – even though we’ve come a long way in a month – we still have a long way to go before we can bring our beautiful girl home. We’re guessing it will be somewhere close to another month before that will happen. We couldn’t have made it this far without all of the loving support and prayers of our friends and families. Please keep praying as we head into this new phase of Ginny’s treatment. We’ve made it to Base Camp, now we’ve got to make an attempt at the summit.