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.
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