Going Home and Continued Recovery

It has been 3 weeks since Owen's surgery. This operation and recovery has been night and day compared to his first two surgeries. Even our concerns handling Owen as a 2 year old instead of a baby has been much easier that we expected.

On Wednesday morning, 6 days after the operation, we were informed that we were being discharged from the CICU and sent to "The Floor" or the the step down unit. Owen still had two chest tubes to alleviate some drainage from the operation, but he no longer needed to be under the care of the ICU.

We packed our stuff to leave in the morning and waited for the transportation process to begin. We waited for a couple hours when someone finally came in and told us they had some bad news. A patient had been admitted and there were no beds available. While we would be considered as out of the CICU, we would have to remain in our CICU room another night. This was unfortunate news, because being in the CICU room vs. the Step-down room is like being in a motel instead of a resort. However, we understood the situation and were not overly concerned as long as it didn't delay our discharge from the hospital. Around 5pm, after we had unpacked a re-settled in the room, we got some unexpected news that we would indeed be moving to the Step-down unit immediately. This was unexpected and welcomed news, and we have a feeling someone pulled some strings for us to get moved.

We settled into our new room Wednesday evening, which included much more privacy, significant reduction in noise, better parental sleeping conditions, and the ability for us to eat in the room. At this point, the only thing keeping us in the hospital was the drainage into his chest tubes. Once the drainage reduced, the tubes would come out and we would be even closer to going home. On Thursday, the drainage was borderline, so they decided to keep the tubes in for another day to be safe. Given how smooth and rapid his recovery has been, they didn't want to take any risks. Thursday included some time in the playroom on The Floor, some additional walking, and enjoying the peace and quiet in the new room. On Friday, the drainage was still right on the requirement borderline to have the tubes removed. They did an X-ray before removing the tubes and saw a little cloudiness in his lungs. They talked it over for awhile, and came to the conclusion that they could remove the chest tubes. They increased his diuretic and  had us stay until Sunday so they could get an X-Ray on Saturday and Sunday to be sure fluid didn't build up in his lungs.

The chest tube removal process was painful for Owen. He was given some morphine before, but he was still very uncomfortable as they pulled the tubes out and stitched him up. With the tubes out, he was generally much more comfortable. With each step and each day, Owen regained his personality and attitude. Saturday was spent hanging out and watching The Lion Gaurd movie over and over and over and over.

Owen had his chest X-ray bright and early Sunday morning to confirm everything looked good and we were sent home. It was very exciting to be able to take Owen home that soon after his operation. Owen was immediately more active at home than he was in the hospital. He had some visitors that he hadn't seen in awhile to welcome him home.

A couple days after being home, Owen started to swell up significantly, especially in his abdomen and legs.We had a follow up visit the Friday after being released, and everything cardiac wise looked great, but we couldn't figure out what was going on with the swelling. His diuretic was increased to try and relieve the swelling. It took a couple days, but the swelling started to subside on Tuesday. It is obvious he is still adjusting to his new circulation, but he is getting better each day. He should be fully healed in about 3 more weeks, just in time for the warm weather.

Thank you again for all the support through this journey. Owen will never be fixed, but we look forward to getting back to normal and staying out of the hospital for a very long time.

Surgery Day and Recovery

The morning before Owen's surgery was filled with pre-op appointments at the hospital. From 8-1:30, we spent the day doing blood work, X-rays, ultrasounds, and meeting with the surgical team to discuss the surgery the next day. Owen was an absolute trooper through all of it, especially after a rough experience getting blood drawn to start the day. He may have been bribed with McDonald's after the appointments, but regardless, he couldn't have been better given the circumstances. We enjoyed the rest of the afternoon with each other at home knowing that this was going to be our last normal day for a while.

We woke up at 5 AM on surgery day to be at the hospital by 6:30. We woke up Owen and gave him a special bath to clean his chest. We packed the car and got ready to leave, but just to make things interesting, as Michelle walked out the front door holding Owen, she promptly slipped on the ice and slammed on her back. She was able to keep Owen from hitting the ground, but it scared both of them pretty good. It was not a great start to the day.

We arrived at the hospital and got Owen prepped for surgery. We were able to give Owen some medicine to make him loopy in order to make the transition of handing him over to the surgical team. We walked Owen back right at 7:30 to hand him away. We gave him hugs and kisses, said I love you, and watched him be carried away into the Operating Room. The rest of the day would be spent in the waiting room watching the clock tick by. Our supportive family all showed up to keep us company throughout the day. We got our first update around 9:30 that the incision had been made and they were beginning the surgery. The receptionist told us they had scheduled the surgery for about 7 hours, but we knew that the time allotted covered the unlikely scenario that they would perform the Fontan. From 9:30 on, we received updates from the surgical team nurse every 1.5 -2 hours. The first update around 11 was that he was on the bypass machine and they were in the middle of the procedure. The second update came around 1 that he was doing well and they were moving along nicely. The next update came around 2:30, which we were expecting to hear that the surgery was finishing up. Instead, we were told it looked like Dr. Morales was working on the Fontan. This brought gasps from all of us. The nurse couldn't confirm 100%, but she said from what she could gather, it looked that way. If true, it meant a lot of positive things. It meant Owens pulmonary vein was possibly not as big of an issue as originally believed. It also meant Owen would potentially be spared from a guaranteed 4th open heart surgery in the year to come. We were on pins and needles waiting for the next update to confirm. We theorized that the longer the time between updates, the more likely they were indeed doing the Fontan. After about an hour of waiting, Michelle couldn't take it anymore and decided to text the nurse with hopes she would confirm. Sure enough, a quick response back confirmed "Yes!". We broke out in tears and hugs with this unexpected good news. A little later we were informed they were finishing up, Owen was doing well, and Dr. Morales would be out soon to talk to us.

Dr. Morales filled us in on the details, most of which we didn't understand because of the medical terminology. The pulmonary vein was open and the obstruction was caused by a thin membrane inside the vein, not a build up of scar tissue. He was confident the pulmonary vein would not be a problem. The pressures in his pulmonary vein, artery, and Superior Vena Cava were all the same, which is exactly what we want for the Fontan. He cautioned that there was still the possibility that the Fontan would not take, and if that were the case they would quickly have to take it down. He indicated that it would probably become evident in the next 48 hours if the Fontan would not be supported. They would take it down and try again in a couple of years if that were the case, but he felt good about it working. We were so happy to hear the update, while trying to remain cautious. Before Dr. Morales left, Michelle asked if she could give him a hug. She hugged him tight at told him that he was our savior.

Around 5, we were told we could go see Owen in the CICU. We rushed up to see him. Our cardiologist, Dr. Madsen, was in the room waiting for us. It was very comforting to have a familiar face waiting there and to talk through some of the next steps. They had removed the breathing tube from Owen, which was an important step, and he was already starting to come out of the anesthesia. We were shocked that he was somewhat awake and talking, even though he wasn't making sense. It was incredible looking at his color and seeing the monitor show his blood saturation levels at 99% oxygenated. For those that remember, Owen's blood saturation levels were in the 60's after his first surgery, which kept us in the hospital for 4 months until his second surgery. Even after his second surgery his oxygen levels were in the mid 70's which attributed to his blue color and his heavy breathing when active. To now be in the range of where people with healthy hearts are, was amazing.

Owen did great on his first night of recovery. Dr. Morales came by with surgical rounds in the morning and said the night went as well as we could have expected. Owen was a little more out of it on Day 2 of recovery, which was to be expected. Around 3 on Day 2, we got our first scare. Owen started "de-sating" and we had a team of doctors and nurses converge on the room. They increased his oxygen significantly and did a blood draw to run some tests. His CO2 level in his blood was high and his O2 level was low. Michelle and I initially thought the worst, because we were told that if the Fontan did not take, Owen's saturation would drop real low. The respiratory team told us they thought it was due to Owen's throat being inflamed and some weakness with his throat muscle. They said this was completely normal occurrence for kids with the heavy sedation and having a breathing tube removed. He was given a couple doses of steroids and was back to normal in a couple of hours.

The days after were filled with keeping Owen comfortable and trying to get him to start eating and drinking. With each day, Owen is having lines and monitors removed. On Monday, Owen got his first of three chest tubes that collect drainage from his abdomen removed. Physical Therapy also came by and had us take Owen out of his room to go play. He didn't have a ton of energy and was still a little uncomfortable, but it was good to get him out of the bed.

On Tuesday morning, Dr. Morales was by with surgical rounds and to check on Owen. He smiled and gave Owen a thumbs up and said "thank you for doing so well, buddy".  Owen has continued to improve his eating and drinking. All of the IV fluids and medicines have been turned off and they plan to ween him off of oxygen as well. The plan is for transfer to the step-down unit on Wednesday. We are very happy and excited with his progress. The step-down unit will offer a more private room and allow us to simulate home a little bit more than the CICU. Hopefully, the stay in the step-down unit will be short as Owen continues to improve.

Thank you to everyone that has been praying and thinking of us. We have received an overwhelming display of support from so many people. We are so appreciative of everything and it has kept us positive through some tough times. 

Heart Surgery #3

It's hard to believe it's been over two years since our last blog update on Owen. We knew from when we first found out about Owen's condition that this would be a step by step journey and he would never be "fixed", but for two years we have been enjoying a happy, normal life. Owen has overcome so many of the early obstacles thrown his way. He graduated quickly from physical and occupational therapy. He ate is way off of a feeding tube and had the feeding tube button removed from his abdomen just over a year after having it put in. He has hit all the appropriate milestones for his age and has even exceeded some, including his verbal skills. He loves seeing his family, reading books, going to the zoo, and playing with animal toys.

We were expecting Owen's 3rd Open heart Surgery sometime between the Fall of 2016 and the Summer of 2017. He was set to have what is known as the Fontan procedure. His last surgery was the Glenn procedure, which took the Superior Vena Cava carrying the non-oxygenated blood from his head and connected it to his lungs, bypassing the heart. Because Owen has what is known as a single ventricle heart, his physiology is going to be changed so that the one ventricle will pump oxygenated blood to his body and the non-oxygenated blood will passively drain into his lungs. The Fontan completes this new set-up and sends the non-oxygenated blood from his lower body to his lungs. They wait to do the Fontan until kids get bigger because the blood from the lower body needs to be assisted by muscles in the lower body to get to the lungs and until they are actively walking, that is not possible.

Owen was presented at a surgical conference in December to review his records and decide when to have his next operation. After the conference, our cardiologist, Dr. Madsen called to update us on the determined path for Owen. Since his last surgery, Owen's pulmonary vein has been a major area of focus. The vein carries the oxygenated blood from the lungs to his heart to then be pumped to the rest of his body. There is some obstruction in Owen's pulmonary vein which does not allow free flow of the blood. Because of this, adding more blood to the pulmonary vein without ensuring it is as unobstructed is possible can be risky. We met with Owen's surgeon Dr. Morales, and he talked to us about how they wanted to be cautious in their approach. Because of the obstruction in the vein, the want to make sure that is open before moving forward with the Fontan. They could do the Fontan, but if the vein could not handle it, it could be exteremly harnful and they would have to operate quickly after the first surgery to take the Fontan down. Instead, they want to operate on the pulmonary vein, make sure the obstruction can be relieved, and then do the Fontan about a year later. There was a lot of back and forth during the surgical conference because obviously they would like to limit the number of surgeries, however, they want to take the safest approach. Doing this surgery in two stages was determined to be the safest path. There is a small chance that Dr. Morales will perform the pulmonary vein correction and determine that it is safe to do the Fontan, but that is highly unlikely at this time and there is no way of knowing until he is performing the operation.

 So, on Thursday, February 9th, Owen will be going back in for his 3rd heart surgery. It is hard to compare this with his 2 previous heart surgeries, but this surgery will present a new set of challenges. Owen is smart, he is aware, instead of a being a little baby who doesn't know any better, he is a toddler who understands and we have grown more in love with everyday. Seeing him in pain and not able to do the things he loves will be excruciating.

We greatly appreciate all the kind words, thoughts, prayers, and gestures as we get ready to embark on another diffcicult stage of this journey. Owen is a fighter and we know he is up for the challenge. We will update the blog as much as possible to keep everyone updated on Owen's progress. Please keep our sweet boy and his medical team in your thoughts and prayers.