Lion Lungs

20130704-113938.jpgResearch varies in the length of time it takes for a person to form a habit. Most say it takes three weeks or 21 days to form one. The time can vary depending on the person and the habit that is either being made or being broken. Our best habit is Owen and for me it only took a day… actually I think just a minute to love him! I have formed daily habits or routines that have become my new normal since Owen was born. As I have mentioned before, I wake up, head to the hospital, take breaks for a walk and a meal, head back to be with our son, then go home at the end of the day, and sleep, repeat. It took a few weeks to settle into this “normal”. But when it formed it felt right.  Today marks day 50 that we have been in the hospital with our sweet baby Owen, well beyond the 21 day mark. Feelings of being homesick are now far and few between and I feel comfortable in my new surroundings.  When we learned about Owen’s condition, we spoke to the doctors and surgeon about his recovery and we were told to plan for anywhere between 2 to 4 weeks. I prepared our hearts and our minds for 6 weeks so we would not get disappointed. However, when 6 weeks came and went I felt discouraged and disappointed. Jeff had to return to work and I would be left alone with Owen. This was not in our plan. We were not supposed to leave until we all left together as a family. I found myself getting very frustrated and analyzing the actions that had been taken with Owen’s recovery. I wanted to point fingers at doctors and/or nurses because it had to be somebody’s fault that we were still here. I called a friend and told her how angry I was at God and that all of this just wasn’t fair. Why was our child still sick? Why did he have to endure so much? Why did it happen to us? What did we do wrong? Through my prayers and sadness I realized that this was not something that had happened to us or anything that anyone did. This was NOT God punishing us. The anger is not towards God but rather towards Satan and the sin that he has brought to this world. Everything that our family has been through is God’s perfect plan for our son and we were chosen to protect His child. Again I was drawn to the life verse we chose for Owen, “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11). I realized that Owen has defied all odds. His condition is incredibly rare. He is truly a miracle and has overcome more than any of us will be faced with in our lifetime. In 50 days Owen has touched the lives of people around the world and inspired people of every race, political view, and religion. When his little broken heart was healed it also healed the hearts of everyone that would meet him. Owen’s condition is not something that happened it was something that was planned. God’s plan is so much bigger than anything we will ever understand. I am grateful for everyday that I get to spend with Owen and see God’s incredible work. While I would love for his plan to be played out at home, we will stay as long as needed in the CTICU enjoying our new habits and watching our son overcome every obstacle he is faced.

20130704-113947.jpgOwen has climbed mountains this week and started his first Fourth of July out with a huge BANG! This week his feeds were increased and a lot of time was spent on his lungs. He has struggled with fluid in and around his lungs as well as atelectasis (collapsing of his lungs) throughout his recovery. The doctors have been questioning if it was his heart and/or chylothorax causing all of the issues. The new formula has worked wonders and has cleared up the chylous effusions from around the lungs but they still had the issue with the fluid in the lungs. His echocardiogram showed moderate stenosis (scarring) at the confluence (surgical repair site) from the TAPVR surgery. This could have been the cause of all of the fluid in the lungs and Owen was given an ultimatum. He had till July 9th to prove he could be extubated or he would have to go to the cath lab. Owen has proved he is 110% boy and does not do well with ultimatums! The whole team wanted to avoid him going to the cath lab and have been very aggressive with eliminating the fluid. They started a treatment called “pulmonary toileting” basically it is getting all of that gunk out of the lungs however we can! They have been proning him (putting him on his tummy), doing regular chest percussion therapy and rotating him every hour. I laugh every time I hear the doctors say that the “swimming” and “beating him” is working great. The surgeons have used the words remarkable and wonderful when describing his progress. His x-rays have shown that all of the toileting has been working and today he had the best x-ray ever! In fact, it was so great that he gets a radiation break and will start getting x-rays every other day instead of every day. He started his “workouts” again on Tuesday and has been doing very well with them. In rounds this morning they told us the news we have been dying to hear, as long as he does not fail extubation, the cath lab is off of the table! If Owen keeps up this momentum, the plan is for Owen to be extubated early next week! And as we have seen thus far failure is not an option in Owen’s book!

20130704-113956.jpgAll of this hard work is really tiring our lil’ guy out. The respiratory therapists have started to call him “Lion Lungs” to help encourage him to keep up the good work. Please pray that he continues to do well and that extubation is a success! He is also continuing to be weaned from the narcotics and we ask for prayers to minimize withdrawal symptoms. It has been a long few days for Jeff and I being apart and we are looking forward to all of us being together for our first Fourth of July as a family, well almost all of us. Our furry son will be with his Nana and Papa and we pray that he does well with the fireworks.  Thank you for being with us every step of the way!

Wishing our heart family a very happy and safe Fourth of July!

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