This post is a day late because I didn't want to jinx myself in talking about going home until I knew for sure we were going home. And for those of you wondering, we are coming home tomorrow!!!! Gavin had blood/lab work, chest x-ray, and EKG this afternoon. We met with the nurse practitioner and Gavin's chest x-ray looked amazing! It looked better then it did at discharge. So the minimal fat diet seems to be working. Gavin's
INR levels were low which has to do with the
cumadin he is on, so they increased his dosage in hopes of it leveling out. We will have one day to re-coop then it's off to the city on Thursday for post-op check up with the doctors there. Please, please pray that Gavin's blood levels all stay in a good range and that he doesn't get anymore pleural effusions (fluid on the chest). Gavin has had two since surgery, they are very common for post
Fontan kids but they always require re-hospitalization. So those are the main concerns for Gavin right now.
On to the sentimental post about Mother's Day. Yesterday was a great day, we took a trip to the beach to see the seals and had brunch with Dr. Peter's (Gavin's surgeon) wife and daughter. Dr. P left for Boston on Saturday for a conference. So we had a girls day!
...Stop here if you don't like to hear my "real, raw" emotions that I have wanted to share for a long time. A lot of people talk about how strong we are and ask how we can stay so positive... but that's not always the case. I am a
real person, with
real feelings and a
real life changing experience.
Yesterday, as I was holding Gavin and looking out to the ocean I thought about the last 3 years of our life. It was enough to bring me to tears...
Starting when I found out at 22 weeks about our unborn sons condition. That same day we had to tell our family and watch them break down, I think that was the first time I had seen my dad shed some tears. Then we prayed and begged God to heal our son. The following weeks/months were filled with fear, anxiety, doubt, and worry. I had nightmares every single night...ask Adam or my mom and the entire church camp that my mom counseled that summer (later I found out that a group of the kids in the youth group petitioned to God on our behalf that night). I woke up every night sweating and crying. I still remember the morbid nightmares, I don't think I will ever forget them. I remember planning in my head my sons funeral. The flowers, the songs, where he would be buried. At the time I had only confessed that to another heart mom and she completely understood, she had been there. However, through the midst of this storm I was saved. On August 23, 2006, two months before giving birth to Gavin, my husband baptized me. Then we held each other and cried. I was baptized in middle school but felt I did it for the wrong reasons. Those next weeks came easier to me, God had given me a sense of peace. Fast forward to Gavin's birth day, October 13
th, 2006 the room was filled with doctors and nurses. Then there was the moment he came out SCREAMING and full of color, not blue, limp and lifeless like they warned us he would be. Surprisingly that day I was the calmest/strongest I had been in the past 20 something weeks. Adam on the other hand lost it, I think he had built up emotions that just needed to be let out... and rightfully so. It's amazing how that has worked out, we always seem to balance each other out. Gavin was doing great, he had to be
intubated but they believed it was because of the medicine they had to start him on before surgery. Then the night before surgery as I held our son for what we thought could have been the last time ever, Gavin quit breathing... and then my calmness turned back to fear and anxiety and helplessness. I cried as the nurse bagged him in my lap. Fortunately, no compressions were needed and Gavin was
ok again. Then the time before surgery when Dr. Peter sat in a room with Adam and I and told us that there was a slim chance our son would survive the surgery. We then began the process of what would haunt us for years to come, signing consent forms, the forms that made us aware that our son could die. We kissed Gavin as they rolled him away in that tiny incubator with tubes and wires coming out every where. It took every thing in me to not pick him up and just run, run far away. Again came the moment where Adam and I held each other and cried, broke down with our real and raw emotions. Surgery took all day, felt more like a year. We were taken to our own private room where we could shut the door and try to "relax". There were more than 20 people there, it was always the joke with the staff about how our family and friends took up the entire waiting room. Our rather large group circled around the room and again prayed that God would protect and heal our son. That evening Dr. Peter came in and said there were issues with bleeding and that Gavin had to be re-cooled and put back on the bypass machine for the second time in surgery to see why he was bleeding. Gavin was critical and back in ICU. I honestly didn't know what to expect, I had seen pictures to try to "prepare" myself, but nothing prepared me for seeing my
own son looking lifeless on a bed. I took two steps in and broke down, there he was naked with tubes coming out of him filling with blood. His chest was wide open and I could see his heart beating. He looked like a 10 month old baby he was so swollen. I stepped right back out of the room. It was to much, I think my post-par tum emotions were kicking in along with the emotions of a mother whose 5 day old son just had open heart surgery. Adam was strong and stayed by his bed, so thankful he was alive. Don't get me wrong, I was very thankful, that is just something I never want to experience again, and no one should. The weeks went on, Gavin coded one day while we were at lunch. Honestly, I am thankful I wasn't there because at that point I would have needed a tranquilizer if I was present. On November 7
th, 2006 we took our son home. With monitors and oxygen tanks in tow. We were quickly greeted that evening with a home health care nurse and the home health care equipment. I don't know what I was thinking when I thought we would come home to peace and quiet and get some rest. We still had the beeps and dings of the monitors, but it was comforting and reassuring to have it there. The next few months were hard, Gavin wouldn't eat, he would sweat and arch his back when we tried to feed him. He got really sick and had to be hospitalized He quit breathing in the parking garage of our pediatricians office, fortunately after screaming at him and flicking his foot he took a deep breath and gasped for air. I ran as fast as I could and the doctors quickly checked him over. Again, he was hospitalized. Then came surgery number two, February 5
th, 2007. Another day of consent forms, waiting, worry and anxiety. Again it felt like we waited forever for surgery to end. Dr. Peter came in and said that it was rough and Gavin had a lot of scar tissue built up and his heart was stuck up under his breast bone. Dr. P actually cut into his shunt because it was so stuck Over time, Gavin became addicted to the narcotics and had to be put on methadone "legal heroin" to ween him off. He then starting having seizures and had a CT scan that showed he had a minor stroke either during or after surgery. We were re-assured that Gavin would come home and recover quickly with physical/speech therapy. Then on February 16
th, 2007 we came home with a feeding tube and we were greeted by the therapists. Gavin progressed and was discharged from therapy at the end of 2008. For the next 2 years Gavin had several hospitalizations, tests and procedures. It was hard, but we made it through all the vomiting, bleeding, seizures, addictions, intestinal problems, etc. Which brings us to the present, and we don't need re-hash all the
up's and
down's with this surgery. I am just thankful and it's such a bitter sweet moment. I feel like things can go slower now, we can enjoy our son more. We don't have to "wish" for the next surgery date to get here and be over. We can somewhat relax, take it easy and watch what else God has in store for this little boy. I know that we are not out of the woods by any means and this is something that Gavin will have to deal with for the rest of his life. But I am still thankful, thankful God gave me Gavin, thankful for our circumstances, thankful for our blessings, just thankful. This Mother's Day had a special meaning... a meaning of thankfulness.
This is the view I am getting while I type, so good to be "home"....
Today was a pretty good day for Gavin. He had his central line removed and played in the playroom with his new friend Diego. Tomorrow he is scheduled to have a sedated echo. We are praying that Gavin will be released to come to the hotel tomorrow!!!! We will let you know...Mitzi
You can tell how much happier he is in these pictures... look how skinny he is getting! We need to fatten him up!
