Enjoying Home

It has been an amazing month since Owen was discharged from the hospital. Owen has done wonderful in the weeks since coming home and had so many fun experiences. It has been a true blessing to finally be home after such a long stay in the hospital.

Owen quickly adjusted to being home. He has been smiling non stop and making up for lost time at the hospital. He sleeps without being interrupted. He has been able play with all his toys and continues to develop new skills. He gets to wear new outfits and not just pajamas that button up. Owen met all his cousins and had a number of visitors stop by to meet him.Here are a few things that he has been able to do:

He enjoys his baths and his warm towel.

He got to see his first snow .

He discovered Mom's "Owen Strong" bracelet and fell asleep holding it. 

He gets to hang out on the couch and read books. 

 

He gets to talk, hold hands, and play with his cousin Max.

Owen has a had a couple of doctors visits including his first peditrician appointment, a follow up with cardiology, a meeting with the surgery team for his hiatal hernia operation, and a meeting with Hematology to discuss his high platelet count due to his asplenia.

Cardiology was very pleased with how Owen's heart was performing. The valve ia holding up and his heart function actually improved a little from the last time he was evaluated. We scheduled his Hiatal Hernia operation for December 11. The procedure is laproscopic and minimally invasive. It will bring his entire stomach below the diaphragm and help him feed in a more normal fashion. Even though the procedure is minimally invasive and normally would be an outpatient procedure, Owen will have to spend a couple days in the hospital due to his heart condition. The doctors want to monitor is heart for a little bit post surgery. As part of the operation, Owen will have a G tube placed in his stomach which will be accessible through a port on his side. owen will need to be able to tolerate his feeds in this new way before leaving the hospital. This will also allow Owen to have the NG tube removed from his nose and face. Once he fully tolerates feeding orally, the G tube will be removed. We are very excited to have the NG tube removed from his face and be able tos see his huge cheeks and adorable face more without tubes and tape.

The Saturday after Owen came home, his Great Grandma passed away after 96 years. He only got to meet her through Facetime, but she loved Owen and his smile. My Grandma lived a full life and her last wish was that she could offer a trade with God, she would go to heaven if Owen could come home. The fact that she held on long enough to see Owen come home was a truly special moment and showed what a wonderful woman my Grandma was.

Owen was fortunate enough to experience his first Thanksgiving with his family. We were so lucky to be home to be able to experience the holiday with everyone. It was extra special to spend the time with out family after all that we have to be thankful for this year.

Owen is such a lucky boy to have so many people praying and caring about him. He continues to be spoiled and receive some extemely thoughtful gifts. We would like to thank Brendan Hosty, Alison Kropf, Emily Kaniecki, The Mirtes, Great Grandma Fagel, Debbie and Jim Murphy, The Brown's, Katie Lowstuter, The Thelen's, The Bolger's Steph Miles, Holly Piddock, and The Thompson's for sending Owen toys, books, and clothes and also food and wine for Mom and Dad. We can't thank you all enough and let you know how much it has meant to us to have your support. We wouldn't have been able to get through this without all the prayers and support of so many wonderful people.Owen also got a pair of custom Nike's from The Frericks that he looks awesome in. Thanks again to everyone for everything.

Owen quickly got in the Christmas spirit and loved looking at his first Christmas tree. He even helped decorate with his very first ornament thanks to Ali Stigler.

Owen is ready to take on this next operation and move forward. The hope is that after a quick recovery, Owen will work on eating, growing, having fun, and being a kid. We look forward to more great experiences ahead for our Little Warrior. 

The Frericks, Holly Piddock, Steph Miles, Brendan Hosty

Home

After almost 4 months, 17 weeks, 119 days, 2 open heart surgeries, and countless tests, pricking, prodding, beeping machines, and an overwhelming outpouring of support and prayer; Owen is home.

We moved to the step down unit Tuesday, October 28th. It was great to get out of the CICU and take the next step towards going home. Because nothing has come easy, Owen did not have a good first night. He experienced some more of the desats while he slept that were an issue prior to surgery. This was obviously not a good development. The doctors decided that Owen would have to undergo another sleep study to try and determine what was going on. Owen did much better Wednesday and Thursday and the sleep study was performed Thursday night. Owen had to go through being covered with sensors and watched all the night.The preliminary results from the sleep study were encouraging, but we wouldn't get final results until Monday morning.

Owen celebrated his first Halloween on Friday. We were thinking about what to dress him up as, but Grandma Lulu surprised us with the perfect costume "Owen with a Bee on his nose".

Owen continued to do well and on Saturday morning, we were told that the goal had been set for a Tuesday discharge. This was the third time we got a discharge goal, so we tried to not get our hopes up, but we just couldn't. We knew, this time, we would be going home. We decided not to tell anyone in case it didn't happen, so we kept it a secret from our family all weekend.

Monday morning we got the results from the sleep study that showed Owen still has some sleep apnea. While sleeping, he stops breathing for a short period of time and his brain does not trigger him to breathe right away. Because of this, the doctors decided it would be safer to keep Owen on a small amount of Oxygen while he sleeps. Fortunately, this didn't delay our discharge, it just meant we would be getting Oxygen for him at home.

Tuesday morning arrived and it was all systems go. Our room was packed and ready to go bright and early. We had picked up all of his medicines, arranged for Oxygen delivery, and spoke to the doctors about his care and follow up appointments. Finally, Owen got in his fancy clothes and was ready to see the world.

We said our goodbyes to many of the nurses and doctors that we had developed relationships with over the last coupe of months and headed for the door. It was truly surreal to put him in the car and drive away from the hospital. Mommy sat in the back seat and talked to Owen as he took in all these new experiences.

We arrived at our house and brought Owen in for the first time. It was such a special moment after all the things that he has gone through in the last 4 months. We quickly took him up to his room and set him in his crib and took a short video to send to our family to surprise them with the news that we were home. They were all shocked and elated to see Owen at home and in his crib.

I don't know if Owen knew he was home or if he just reacted to our faces, but he literally did not stop smiling all day. He got to meet his Cousin Max for the first time and they like each other already.

We went on our first walk outside to get some fresh air.

He got to meet his cousins Josie and Leo for the first time.

And most importantly he got to sleep at home for the first time and not deal with people checking on him every couple of hours and taking temperatures and blood pressures. Owen finally got to feel like a baby.

We would again like to thank everyone who has supported and prayed for us. We recieved a very thoughtful note and gift from Maria Schmitt and we countiue to be overwhelmed by all the thoughts and prayers. This was an ubelievable milestone in our lives and it was such an incredibly happy and sepcial day. This isn't the end of the journey for Owen. He will be undergoing a quick operation to fix his hiatal hernia in the next 4-6 weeks and after that fix we can begin to work on a more normal feed and eventually getting rid of the nasal gastric tube. We have to see the Cardiologists every two weeks to check on how things are progressing. He will have a follow up exam in the next couple of months to see if his sleep apnea has improved and can come off the Oxygen anytime soon. He still has to take a number of medicines. We know our Little Warrior is up for any challenge that will come his way.
Even with all that lies ahead, Tuesday, November, 4th felt like we had won the lottery. We finally got some normalcy in our new life as a family of three.

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.