Sunday, June 27, 2010

The View From Base Camp

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 Unfortunately, the wild stress of the roller coaster ride has been replaced by the quiet stress of anticipation.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.


  1. Jason and Rachel, you have a very strong, fiesty, determined daughter. She has awesome parents, miraculous guardian angel and more family and friends praying for Ginny and you than anyone could imagine. As you take this next crucial step to recovery know that although you need to be "away" from everyone for the best interest of Ginny, you are never alone. Much love to you all, and special hugs and kisses to little Miss Ginny!

  2. Jason
    I've told you in private how proud I am of you and your Army service, I want the public to know this as well, especially the Sapper training. We didn't have that when I was in the Army. I had some very difficult training and a year in Vietnam as a Recon Platoon Sergeant. I also thought I was a tough guy. When I went home last week, I ended up in the emergency room when my tough old body gave in. LOL I'm very proud of all three of you. You, Rachel and Ginny will all be fine. I had a talk with the old man when I was in Vietnam (I came home alive), Again I had a talk with him last night, he said all will be fine.
    Love to all

    Doug (Grandpa)

  3. Jason & Rachel got the prayer part covered. I read your blog every day and Willis and I have you in our thoughts and prayers.

  4. Jason and Rachel, I think your decision about keeping visitors to the both of you is very smart and I commend you for that. We all want what is the absolute best for Ginny. There will be plenty of time to love her when she is recovered. Ginny has proven to all of us that she is a fighter and with the next phase of her treatment upon her, she will continue to be the fighter we all know she is. I am saying extra prayers for our Precious Ginny. We Love the 3 of you very much.

  5. I agree with Grammie. If people get mad than so be it. Then they really aren't concerned with what is good for Ginny. You and Rachel are awesome parents and know what is good for her. I will pray for her. Sorry that I was able to see you when I brought up the Sonny's but me and Laura did get to spend quality time with Rachel. Take care of your family Jason.

  6. Jason and Rachel,

    All of us at the March of Dimes have Ginny Lee, the two of you and the doctors, nurses and others who will care for her in our prayers. We wish all the best for tomorrow's surgery. We will be eager to learn how things are going. Our love to the three of you.

  7. Jason, Rachel & Ginny,
    You are all in our thoughts and prayers!
    <3 <3 <3

  8. May God guide the surgeon's hands and may he watch over precious Ginny Lee. I will also be praying to angel Mary Lee to watch over precious Ginny as she recovers. My friend Geralyn and I will meet to pray at the office in the morning. Love to all of you!

  9. Jason and Rachel, you are so clever and smart to find activities to keep you busy while Ginny is in surgery. The day will pass a little more quickly for you both.

    Every day I pray for each of you; Ginny, Jason and Rachel and then I add the list of people who love you and Ginny. Then I add the doctors, nurses and support staff who watch over Ginny while you can't be there with her.

    Extra virtual hugs to all tonight and tomorrow. Many heartfelt prayers and good thoughts your way.


  10. From COL. Donnie Shelton

    During our Military reunions we all get in a circle, hold hands and give each other strength. We pray to help our friends that need help.
    Dan called tonight and said we were having a "Circle of Strength" on line. Donnie sent this email as if we were all in a circle

    Thanks to all for the prayers

    Doug, I just saw the latest video. What a precious child.

    May GOD hold Ginny in loving care and bring her to complete healing " Lord, I come asking for spirtual strength,courage and healing for baby Ginny and her entire family. I ask that you work through the Doctors, Surgeons, Nurses and all the care providers that come in contact with Ginny in order for the surgery to be successful. The surgery will be a long one tomorrow, so give the family comfort, love, peace and understanding knowing that you are with them. In Jesus Christ, Amen