Recovery

The recovery process for open heart surgery is complicated and intense. There are wires and tubes everywhere giving fluids, medicines, and oxygen and draining and clearing out fluid. It is a slow, meticulous process to start removing and weening things. Each removal of a tube or wire is a small victory and a sign of progress.

Owen did very well overnight after his surgery. He was heavily sedated, but his numbers were looking good and the doctors were very pleased. There had been talk of removing the breathing tube Saturday, but since he arrived late on Friday, they decided to let him rest all day. Owen remained sedated and on pain mediction while the breathing tube was in. He would stir every once in awhile, but the best thing for Owen was to keep a low heart rate and blood pressure and to sleep.

Sunday morning the breathing tube came out. In order to take the breathing tube out, Owen had to come out of his sedated sleep so he could breath on his own. He did wonderful and quickly started breathing well, but he was still pretty out of it and dealing with some pain. There were a couple of major sources of pain for Owen that he had to deal with. The first and most obvious was from the surgery. The second source was from the chest drainage tubes that were clearing fluid out of his lungs and chest. These were up in his chest and against the nerves in his lungs. Those would come out as soon as the drainage subsided. The third source of pain was coming from intense, migraine like headaches. The Glenn procedure takes the Superior Vena Cava, which in a normal heart connects to the right atrium, and connects it to the the pulmonary artery. The Superior Vena Cava brings blood from the head to heart and then is pumped into the lungs. Because Owen has a single ventricle physiology, the blood flowing from his head is now flowing to the pulmonary arteries and into the lungs. This new path of blood flow causes some pressure to build up in the head before the body gets used to it, causing severe headaches. Owen has been a warrior dealing with all these sources of pain. We were lucky enough to get to hold Owen on Sunday. It was alot of work to get him out of bed with the tubes, but we were encouraged to hold him because it soothes him, helps clear out his lungs, and it helps with the headaches to have his head up.

Owen got one of his chest tubes out Monday morning, but the other two were left in to continue to drain. He was very puffy from the surgery and had retained alot of fluid that needed to be drain. He started to wake up a little bit more and he opened his eyes and looked at us for the first time since his surgery.

On Tuesday, Owen had an EP study to determine if an arrythymia could be triggered and if he needed to go back on his heart meds. We got great news that they were unable to trigger any abnormal beats and that they would not be putting him back on the heart meds at this time. It does not mean that he would not have the arrythmyia anymore, but it was a good sign.


Owen had a little more pain on Wednesday and had trouble sleeping. The exhaustion was evident on his face, but he just could not sleep. He finally slept well Wednesday night, thankfully, because he had a big day Thursday. He had the remaining two chest tubes removed, which immediately eased the pain. Owen also had a line in his jugular from surgery that was being used to give some meds and fluids that needed to be removed. Unfortunately, they still needed access for emergency meds or fluids, so instead of another IV, which have not been the greatest with Owen, they decided to place another PICC line. Owen had a new PICC line placed in his right arm which goes all the way through his vein and sits in his Superior Vena Cava. Owen did great with the procedure and with having his jugular line removed.

From this point on, the main focus is getting Owen to tolerate his feeds and weening him off of oxygen. He continues to progress and do well and everyone is pleased with how he is doing. As of Friday morning, the hope was that we would be moved to the step down unit on Monday.

We would like to thank all of you for your thoughts and prayers. The support has once again been overwhelming. We would also like to thank The Browns, The Mix's, and Amy Celesti for sending very thoughtful gifts for Owen. We were also lucky to have Aunt Carol and Uncle Randy send up a homemade dinner and a gift and the Hambleton's also sent a homemade dinner, which all really hit the spot. We can't thank you all enough for continuing to support us and Owen.

This has been a tough week for Owen but he continues to fight and we can't wait to see that smiling face again sometime soon. He is getting close to flashing it, but not quite all the way there.

Surgery Day #2

The mood in our room was tense. We decided to move forward with Owen's surgery on short notice, but it was not confirmed that it would actually happen on Friday.

We prepared for surgery which included a special bath with disinfecting wipes, a trip to Radiology for an Xray, and placement of an IV for a lab blood draw and for fluids that would begin at midnight. We spent the night swapping Owen between the two of us, fighting off going to bed to spend every moment with our little warrior in our arms. A little after midnight, Owen was sound asleep and Michelle and I knew we needed to rest for the day ahead. Sleep was hard to come by as we still were waiting in suspense for final word on the surgery. We woke up around 5 and jumped with every opening of our door.

By 6:30 there was still no word, but the nurses were told to continue with another disinfecting wipe down of Owen. In the middle of the bath, we finally got the word, we were a go. Dr. Morales came up around 7:30 to discuss and get our consent for the surgery. He walked us through what his plan was for Owen's operation. There were three phases to Owen's surgery today. The first step involved the pulmonary artery band that was placed in his first surgery. Dr. Morales had to decide whether he was going to remove the band or potentially tighten it. This depended on how Owen's AV valve was performing and how fixable it was.

The AV valve was the second step and the most important step. Owen has what is called a Common AV valve. A normal heart has 2 AV valves, 1 each between the atrium and ventricle. Since Owen's heart formed with basically 1 big ventricle, he had one big AV valve. His valve was leaking and fixing it was part of the first surgery. Dr. Morales was concerned with the valve after the first surgery and he proved to be correct. The first fix did not work very well. Owen's valve was a little underdeveloped and it was going to be a very tricky process to try and fix it. This was his biggest concern and he wasn't quite sure what techniques he would be able to use to fix it until he got in there.

The third step was the Glenn procedure. This basically involved removing a passageway that was going from his head to his heart and rerouting it to passively drain into his lungs. This process works in babies because they are so top heavy and there is more blood flow to the top part of the body. This
is a temporary set up and when Owen gets bigger around 2-3, they will have to perfrom the third stage of his heart surgeries called the Fontan which is a permanent circulation pattern.

Dr. Morlaes left and we were told to be ready to go by 8:30. Owen, being the little warrior he is, was awake laughing and talking to us. He is an inspiration. Michelle and I were terrified, but we did our best to not cry or let Owen know how scared we were. He let us know to be strong and that he wasn't scared.

Around 8:15, they were ready to take Owen down. This immediately put a lump in my throat. Michelle held Owen,who fell asleep right before, in her arms and got on the stretcher to be taken down to the OR. We received many positive  comments and encouraging comments from the nurses and people that we have grown to know. Even though we have done this once before and we know it is necessary, it does not get easier to walk your child down for open heart surgery. There were so many thoughts and emotions running through our heads. We were wheeled into the staging area where they processed him and we met with some more doctors before they told us it was time to go. We walked with Owen in our arms up to the OR door where they told us to give our last kisses and loving. The tears poured as we kissed our little warrior and told him how much we loved him. He opened his eyes as we handed him off, almost as if to give us one last sign that he would be brave and see us soon.

We made our way up to the waiting room leaning on each other for strength. It was an emotional time and we kind of let out some built up tears from the last 3 months. We were fortunate enough to be given the same large private waiting room we had for the first surgery because the surgery was going to take a long time. Our gratious and supportive family showed up to be there with us through out the day. We can't thank them enough for everything they have done for us and Owen and given us additional strength to get through this.

Our first update came around 11:30. Owen did great with the anesthesia and they had started to make the incision around 10:30. Dr. Morales was going to take a look at the band first and get an idea of what he was going to do.

We received our next updated around 1:15 and were told that Owen had been put on the heart and lung bypass machine without any problem. They were going to take a look at his pulmonary arteries and veins to see if the size was appropriate and they would also start to assess the valve.

By 2:45 we got another update that Dr. Morales had decided to put Owen on Circulatory arrest for his valve repair. This was different than the heart and bypass machine, because it completely drained Owen's heart of blood and stopped all of his circulation. They cool him down to 21 degrees celcius to preserve his organs and it gives them a clear view of what they are working with. This was the most intense part of a stress filled day. The process is terrifying to think about and truly makes you appreciate what these surgeons are able to do.

Our next update came around 4 when we were told that they were finished with the valve and had moved on to the Glenn. We were told that the initial indication was that the valve repair went well. They would not know for sure how the valve was working until they took him off the heart and lung bypass machine and performed an echo to see it in actions. This also drove their decision to remove the band completely from his pulmonary artery. The Glenn was the "easy" part of the operation and would be the final part.

We got another update around 4:30 that Owen had been taken off of the bypass machine, but the oxygen saturation levels in his blood were in the 60s and 50s. This was obviously not wanted they wanted to see or what we wanted hear. The Glenn was supposed to get us over the hump of the saturation issues. The doctors were obviously not satisfied and put Owen back on the heart lung bypass to try and figure out what was going on. They gave Owen some Nitrous Oxide to help with his lungs and they were going to look and see if his pulmonary arteries needed to be made bigger or if there were any other fixes that they could do to get his sats up.

Our final update was that Dr. Morales decided to expand the pulmonary arteries using a patch. The way they explained it was that they cut along the arteries and place this patch to make it bigger. The patch is eventualy replaced by natural tissue over time and expands it. This seemed to do the trick and his sats were now in the high 70's. They had begun to finish the procedure.

Dr. Morales came out to talk with us shortly after. He was very pleased with how it went. Most of the discussion revolved around the valve. He explained how he used a technique that he not used before which he was thinking about doing the night before because he was worried he would not be able to fix it. He tightened the valve and basically folded the flaps over so when the valve closed, a flat part of the flap was connecting with a flat part from the other flap. Owen's flaps were a little ragged, so when they came together, there was still space for leakage. This appears to have helped to minimize that. This is still something that will be monitored closely, but Dr. Morales seemed very happy with how it looked and worked and in turn, we were happy.

Thank you everyone for the thoughts, kind words, and prayers. It was an exhausting, emotional day. The outpouring from all of you has been such an amazing, uplifting experience. Around 8:30, We were allowed to go up to our room and see Owen in the CICU. We were very nervous because the first time was such a jarring experience to see him, but he looked so much better than the first surgery.

He will be sedated until tomorrow morning and then the plan is to remove his breathing tube and begin to allow him to wake up. We cannot wait to see his smiling face and get to work on the road to recovery.

Surgery #2 - Friday, October 17th

Nothing has gone according to schedule since Owen, our little warrior, arrived in early July and it should come as no surprise that Owen's second surgery will be no different. We were told last Saturday that Owen was on the schedule for Tuesday, October 21st. We were disappointed because we thought Owen would have the surgery this week and be one step closer to heading home. Instead, we would be spending another week in the hospital just hanging out.




Today, Thursday, October 16 was just another day until about 5:30 pm. We were told a surgery was cancelled for tomorrow and they would like to move Owen's surgery date up to that slot. The emotions that we are going through are hard to explain. We have the opportunity to refuse and stick with Tuesday, but each day that passes is another day that Owen might get sick and postpone his surgery and keeps us at the hospital. We have decided to proceed. There is still a chance they will decide they would like to wait, but at this time, we are preparing for Owen's Glenn procedure tomorrow. We are ready to take this next step, but it hit us hard that we would be handing our little guy over again for another open heart surgery in the morning.



Owen has been doing great and when he found out about the surgery he immediately busted out his superhero outfit and put on his theme song by The Script - "Superheros" to let us know he is ready to take this on.

"When you've been fighting for it all your life

You've been working every day and night

That's how a superhero learns to fly

Every day, every hour

Turn the pain into power"

Thank you all for your thoughts and prayers and we will update everyone tomorrow after Owen shows us all what a brave little warrior he is.

Round 2 on the books

The end of September is a special time for us. There are a number of reasons for us to celebrate and this year was no different.

After his Cath lab, Owen has been steady, stable, and happy. It took him about a day to shake off the grogginess, but he was quickly back to his fun loving self.


It was perfect timing because it kicked off his Mommy's Birthday weekend. It wasn't an ideal situation to be spending Michelle's birthday in the hospital, but being with Owen made it a birthday to remember. We put up some decorations in the hospital room and made sure to make Michelle feel special. Grandma Juju was nice enough to come up on Michelle's actual birthday and sit with Owen and let us get out and enjoy the day. The weather was perfect and it was wonderful to spend some time outside doing normal things. It was a day that Michelle deserved.


The following week was uneventful, which was a good thing. Owen wasn't presented at the surgical conference as we had previously expected because his surgeon, Dr. Morales, was out of town. His analysis and opinion was obviously very important, so they pushed it to the following Tuesday. They
told us that this wouldn't cause the surgery date to be a week later as they had already targeted his surgery for the week of October 5th.


My sister Emily was motivated by Owen and his strength through this entire process and decided to train and take part in a sprint triatholon. We were so touched that she would put all that time and effort into something in support of Owen. Owen showed his support for Emily to help her get through. She did an awesome job and Owen is so lucky to have Emily on his side.


On Monday, the 29th, Michelle and I celebrated our second wedding anniversary. We were able to get out for a quick dinner to celebrate the wild ride that we have been on. It has been a crazy two years filled with highs and lows. It's hard to believe all that has happened and changed in our lives in just two years. Looking back on that time further cemented how lucky I am to have such a wonderful person to call my wife. There is no one else that I would want to share all of this with. I love her more every day and she continues to amaze me with everything she does.


The surgical conference was the following day and they agreed on surgery the next week. They had not selected a firm date, but told us that it would be Wednesday or Thursday. We knew that surgery was coming and we wouldn't be going home until after, but it still put a knot in our stomachs knowing that our sweet little boy would be going through another open heart surgery in about a week.


We continued to enjoy and cherish our time with our little warrior. After some persistence and determination, Michelle, with the help of a couple great nurses, was able to get permission to take Owen outside for the first time. This was a huge moment for us. Owen had never been outside and after twelve weeks of knowing nothing but the hospital, he was finally going to breath fresh air and see the sun. We had to be accompanied by a nurse and hooked up to a portable monitor and oxygen, but it was something so incredibly special. We were taken to a little courtyard on the roof of the third floor where Owen felt the warm breeze on his face for the first time. He loved being outside almost as much as we did. It was an emotional experience time for us to finally get Owen out of the hospital walls.



We were able to get outside another time before the weekend weather unfortunately turned cold and hope to get him out a couple more times before his surgery. We were also fortunate to have the staff secure us a big mat to lay on our floor so we could lay down and play with Owen. This was a fantastic find for us because it offered us something different to do with Owen. We have been limited to sitting in our rocking chair and holding him or putting him in his bed to sleep or play. Being able to put him on the ground and lay with him allowed us to play with him and interact with him in a different way than ever before. He was a little confused seeing us lay by his side, but he quickly fell in love with this new set up. It may not seem like much, but it has made the future stay here much more tolerable.



Dr. Morales stopped by Friday morning and informed us that the surgery was going to be pushed back a week. He said that each week would help in his recovery and the fact that he was stable meant we could wait another week. This was bittersweet to hear because we want Owen to have the best chance possible for a quick recovery, but a week delay meant a week longer in the hospital. We do not have a date yet, but his surgery is now scheduled for the week of 12th.


We continue to be overwhelmed by the support we are receiving. The fact that people continue to think about us and go out of their way to help us out in so many ways shows how lucky we are to have such wonderful people in our lives. Our family continues to be our rock through this all. Our parents continue to visit Owen and give us the opportunity to get out of the hospital for a stretch of time. We had a delicious and much needed home cooked meal from Aunt Lorie and Uncle Charlie. We received thoughtful gifts from Megan Ball, The Coleman's, The McBride's, Audra Koncal, The Goodfellow's and Linda Klare. Ali Stigel made us some very thoughtful and inspirational bracelets  for our families that say "Owen Strong". The gift cards, outfits, and toys will all be put to good use. Owen is one lucky boy to have so much support. We also continue to receive very nice notes and comments which mean so much to us that people are thinking and caring for our little warrior.



Owen spent Sunday watching football and getting ready for the Bengals Sunday night game. He continues to be very talkative and especially flirty with all his nurses. He flashes an irrestible smile at them and is already showing the makings of being quite the ladies man. There is no doubt he is a special little guy.


My updates have been a little less frequent of late for a couple reasons. Things have been a little boring as we wait for the next surgery and it keeps getting more and more difficult to find time as we get more ways to play and entertain Owen. I hope to have another update this time next week as we prepare for Owen's next surgery. Thank you again for following and all your support.