The Cath Lab

Owen's next step was The Cath Lab. The Cath Lab would send a catheter through his groin and up into Owen's heart to measure the pressures of his heart, lungs, and to take some pictures to get a better idea of everything that was going on inside. Owen was going to have this procedure before his Glenn surgery (2nd heart surgery) regardless, so they decided to move it up in hopes of getting more answers on why he was having his desaturations.

The Cath Lab was scheduled for Thursday, September 18. This meant that we had about another week and a half to just hang out. Thankfully, they decided to let Owen have a break and not to subject him to anymore tests. Owen deserved the chance to sleep and play without being poked and prodded.  Owen loved this. He played and smiled and let Mom dress him up in some of his cool outfits that he wasn't really allowed to wear. Owen has only been allowed to wear outfits that button up because of the wires and frequent examinations.

He even got to show off some more of his dance moves

Owen still had his desats and it was clear that these would occur depending on the position that he was in. When Owen is held, he doesn't have any issues. When he is laying in bed is when these issues seem to occur. The results of his previous sleep study showed that he had some sleep apnea. Because of this, they decided to do a Flexible Bronchoscopy and Microlaryngoscopy which are two scopes that would go down through his nose to get a better look at his throat and lungs. The hope was that we would get a lot of answers from this procedure.

 Cath lab day arrived and the procedure began at 7:30 am. The Cath Lab was right next to where we were in the step down unit. We carried Owen to the lab and gave him some kisses. The entire procedure was supposed to take around 2-3 hours. After we dropped off Owen, we were told that we had to pack up our stuff and move back to the CICU where Owen would recover. We were hoping to get to stay in the step down unit, but the protocol was to go to the CICU. Because of Owen's previous arrythmia issues, the Cath doctors were fairly sure the procedure would trigger another event while the catheter was in his heart. The CICU was the safer option.

The two scopes went first and took less than an hour. A doctor from pulmonary and ENT stopped by to discuss the results around 8:30. Owen's tongue rests back in his mouth when he sleeps and causes some airway obstruction. They also noted that inside of his lungs, some of the lobes were a little floppy, which means when he exhales, they collapse a little bit more than normal. This was positive news because both seemed to contribute to his desaturations and both would hopefully be corrected with time and growth.

We hauled our stuff over to the CICU and waited to hear the results from the cath. The procedure finished up around 10:30 and we got word that Owen did great. He did not have any arrhythmia and had handled the procedure wonderfully. Owen was brought to the CICU and we discussed the findings with the doctors. The doctors explained that everything looked good and it appears that the main culprit, along with some of the airway obstruction, is that the PA band that was placed during surgery had gotten too tight. As Owen has grown, the band does not adjust and therefore gets tighter. The band was always going to be removed during the Glenn procedure, so now this gives even more reason to move it up and have it done sooner. Since Owen had done so well during the procedure and recovered well for about 4 hours after the Cath Lab, we were sent back to the step down unit.

The fact that so many people continue to reach out and support us has been incredible. We received special notes and gifts from The Folke's, The Klecka's, The Goodfellow's, Ken and Linda Graham, Barry, Amy, Mary, Will and Meg Fagel. We were treated to a nice dinner and gift for Owen and us from Amy Karpowicz. We also received a note from a special girl named Isabel Ganz. She ran a lemonade stand in Owen's honor and donated the proceeds to Owen the Little Warrior. We were so touched by her care, generosity, and selflessness and it was a special and surprising moment to she what she did for us. Thank you all so much for your thoughtfulness. It means so much to us to feel so loved and supported.

We will hopefully get more answers on the plan on Tuesday when the surgeons and doctors get together for a surgical conference to discuss the best plan going forward. Until then, we will be hanging out in the step down unit enjoying our time with our little warrior.

Overwhelmed

I was hoping our next update would be a little different. I thought we would be able to announce we had finally made it home, but unfortunately, that's not the case.

The past two weeks have been an emotional rollercoaster as we try to overcome the last hurdle keeping us in the hospital. Owen continues to battle with desaturation episodes that the doctors just can't explain. Being a few credits short of our honorary medical degrees, I can explain what this means. A person with a normal heart has oxygen saturation levels of the blood at or around 100%. With Owen's physiology and having a single ventricle heart, his saturation is expected to be in the mid 70's. We all have dips in our saturation, like when we sleep, but because our baseline is 100%, the dips are not noticed and no concern. Owen is having dips that go below 70% and sometimes stay below, which can be very dangerous.

We thought the cause of the dips was the para influenza that he caught a few weeks ago. As he battled the virus, he was on oxygen to help maintain his saturation levels. Going in to Labor Day weekend, it appeared that Owen was overcoming the virus. On Friday of that weekend, he was taken off oxygen and placed on room air. He did very well on room air and we went into Saturday looking good. We talked with the doctor Saturday morning and he said that things were lining up for a discharge on Monday. It was such exciting news. We had a few more things to do over the weekend to prove we were ready to care for Owen at home and he also had to undergo a glucose challenge before we could get out of there.

The glucose challenge was a test they wanted done because a few weeks back, Owen had a very low glucose level. They wanted to see how long Owen could go without food before entering a dangerous state with low glucose. His glucose had been fine since that one episode, which they thought was due to coming off a drug, but they wanted to do this test to make sure. The test involved Owen not being fed for 8 hours and having his blood tested every hour, until his glucose level hit 75 or lower. Once it hit that, they would test his blood every half hour until it got to 45. Then they would take a large blood draw to run labs on. It was a very stressful day. Owen was hungry and getting pricked often, but he handled it like a champ and his glucose never even dipped below 75. He passed the challenge and that was the last step to going home.

Unfortunately, shortly after the challenge ended, Owen started to desaturate. He dipped low and stayed low. They had to put him back on Oxygen. This was not good. We could tell that Monday was no longer happening. We were deflated. The doctors were frustrated. We all thought we were over this and reay to go home, but that wasn't the case.

The next week was spent trying to figure out why he was still having these episodes. There were no answers. His lungs looked and sounded good. His heart looked good. We had been noticing that position was a huge factor in these events. When Owen was being held, he was "satting" beautifully. He would even get up into the mid 80's, but as soon as he was laid into bed he would drop. The doctors took note, but they didn't think that was the only answer. They thought reflux may be the big culprit, so they decided to place his feeding tube further down and actually past his stomach so it would be physically impossible to reflux. That didn't work. On Friday night, they performed a sleep study that would monitor him in depth as he slept. Owen had over 25 sensors taped and glued to him to gather information. He had 10 on his head and face and the rest all over his body. They monitored him from 10pm to 5am as he slept. It was not a fun process, but they said they got some good information and Owen was an absolute warrior through it all.

Through all this Owen has kept his warrior attitude and showed such toughness and resiliency. We are so proud as parents and he his an inspiration to us everyday. The thoughts from the doctors are that Owen will not go home before his next surgery. Without an answer, it just won't be safe and they are talking about moving up his 2nd surgery in the next 4-5 weeks. The Glenn will give Owen a much more stable physiology and should have him "satting" in the 80's which gives him a lot more room for error. everything seems fluid at this point, but we are lucky that Owen looks and acts like nothing is wrong. Even with this tough, unfortunate situation, we are still able to enjoy these precious early months with our little warrior.

The support we continue to receive has been unbelievable. The Price's sent over a couple gift cards for some massages that will be surely appreciated sometime soon, the Cox's gave him a few stylish outfits, the Minnehan's sent Owen a couple of books that he already loves to read and look at, and Owen's slightly younger cousin Max sent him a toy and wrote him an encouraging and uplifting letter that will be framed in his room. We also received a special package from The Allen's and their son Hudson. We met the Allen's for unfortunate reasons, their son Hudson also has heterotaxy. Owen and Hudson were briefly neighbors in the CICU when Owen first arrived and Hudson was preparing for his Glenn surgery. We know a lot of the same people as The Allen's were introduced after it was realized that they were going through what we were going through. Hudson sent Owen a very nice letter and a t-shirt that says "Miracle Baby". They also sent a very special little statue with a supportive meaning. Hudson and Owen are very special boys that will forever be connected through their incredible journey.

Saturday, September 6th, was one of the most overwhelming days throughout this entire process. Our brother in law Craig Murphy had the fantastic idea of organizing an event in support of Owen and our families put so much thought and effort into planning a sand volleyball tournament at the Sandbar. The support was greater than I could have ever imagined. Hearing of all the generosity, kindness, and support that so many people put into this event for us was so inspirational and heartwarming. It was stunning hearing about the number of people that were there and participating. We weren't able to make it until later in the afternoon, so we weren't able to see everyone, but we want to thank you from the bottom of our hearts each and everyone of you that took time out of your busy lives to support us. It was so uplifting to talk to people and hear how much you all care about Owen and us. We will never be able to thank you all enough, but you all have no idea the impact you have had on us. A big thank you to Jeff Ehrman at Harlan Graphics Art Services, Inc for donating the Little Warrior Banner for the fundraiser, to Greg Ruther and the Sandbar for letting us use their facility, to Archie Gleason and Stagnaro Distributing for donating the alcohol, and to everyone who donated the countless baskets for the auction. All of you made the event the incredible day that it was.

To our family, I am not sure where to begin. There are not any words to describe our feelings. Thank you and we love you from the bottom of our hearts. We would not be able to do this without you.