9:45 p.m. last night

Trey has his watch alarm set to go off every night at 9:45 (the time Nate passed away). The alarm beeps for like 10 seconds. He did this to say a little prayer at this time, or just think of him. Last night I was just getting to bed and the alarm went off. As soon as it went off, I heard Owen over the monitor wake up from a deep sleep saying "pool, pool, pool" over and over again, until the alarm stopped, then he went back to sleep. Now, let me just say that Owen is a VERY good sleeper. He rarely ever wakes up in the middle of the night, and he has never woken up and "talked". I truly believe that this was a sign that Nate was visiting Owen in his dreams and they were playing in the pool together in Heaven! I know it! I had a rough evening last night and this put a smile on my face and I fell asleep smiling! :)

Youtube Video of Owen's Prayers

Every night, before Owen goes to bed, we all go into Nate's room and say prayers to Nate. Then we all blow a kiss to Nate and Owen tells him he loves him. HAD to get this on video!!!

http://www.youtube.com/watch?v=jScqdmToIbc

Owen is loving the pool!

I'm MAD! But getting over it...

It's me. I haven't been able to post anything in a couple of days because I'm really just sick and tired. Sick and tired of depressing news, stress, sadness, etc. I needed a few days to accept reality (AGAIN!), and get over my initial feelings of random emotions, the most popular emotion being anger. I mean, what in the world? A heart defect, seriously??? It was, needless to say, a crazy weekend. I initially wanted to beat someone up, yell at God, scream at the top of my lungs. It took time for me to process what was going on. I didn't really even know exactly what Owen had until Monday I think. Didn't want to know. Didn't want to hear the three initial diagnosis of one of my son's, AGAIN! Didn't want to know what caused it, NOTHING! All I wanted to know when this all first happened that he was going to be okay. I didn't get that feeling until late Friday afternoon. So, here I am posting about Owen and SVT, not Nate and SMA. And in the midst of major loss and grieving, a curve ball is thrown our way which distracted us for a few days - all focus was on Owen. And still is of course. But the grieving for Nate has reappeared. And now we have grief, which will always be with us, but also a heart problem with Owen. But, I am relieved that SVT can be controlled, and when he's 12 to 14 years old, can be healed of this heart defect.

Owen is doing fine. The heart medication he is on slows his heart rate and has caused him to sleep more and get a little more fatigued easily. But, the dr. said his body will adjust to this new medicine in time. Our main worry was him actually TAKING the medicine. He is a bit picky about medicine. It has been a little bit of a battle, but I think we are making progress and with each dose, he seems to do better. Thank the Lord because we're not talking about tylenol here, we're talking about HEART medication! UGH! And, supposedly if he takes the medicine, he should have no more episodes of SVT.

I've posted a few pics of Owen. One is of him Monday when he had to wear a halter with probes all over his chest to monitor his heart rate for 24 hours. We had to give him a sponge bath that night. Also one of him listening to Trey's heartbeat. Now we are using Nate's pulse ox on Owen (unbelievable!) to check his heart rate throughout the day and also listening to his heart with the stethoscope. So now he likes to take part and listen to everyone else's hearts :) - my darling boy!

Random pics of Owen

Owen Update

If you don't say or think "Are you freakin' serious?" at least a half dozen times while reading this update, I will be surprised!

As you know, Jen and I had planned to make a quick getaway to Las Vegas but since I am posting this message, you can tell that we're not in Las Vegas...

On Friday morning, Jen took Owen to the doctor's office because he was running a fever of 101. He started running it on Thursday morning and that evening complained that his ear hurt. Our thought was that his ear infection had flared up again and that he probably needed to start his antibiotic again. We just wanted him seen by Dr. Cyrus or Dr. Rippy before we headed out of town. During the initial part of the exam when Jen is telling the nurse about his symptoms and she's checking his vital signs, she says that his heart rate is too fast and that she needs to get a pulse oximeter to get an accurate reading. When they hook it up to Owen, the reading shows a heart rate of over 200 beats a minute...in fact, it ranged from 215 to 250 bpm while they had him hooked up to it.

The nurse immediately gets Dr. Cyrus who checks him out and tells Jen that he has SVT (Supraventricular Tachycardia) and that he needs to get to the hospital right away. Needless to say, Jen freaks out given all that we've been through with Nate. I am walking out to lunch with a buddy when I get the call from her while she's sitting with Dr. Cyrus in his office. I am thinking that she's calling to tell me that we were right about the ear infection and she is off to get the prescription filled. I stand stunned in the parking lot as she tells me that Owen has a heart problem, his heart rate is over 200 bpm and Dr. Cyrus wants him to get him admitted to St. Francis. This is extremely hard to process since Owen is not showing any outward signs that this is bothering him at all!

I met them at the ER and we get in pretty quickly. Dr. Cyrus has called ahead, told them that we are coming, told them about Owen's status and that Nathan just passed away on April 28th. The ER doc has us try a couple of things with Owen to see if we can get his heart to "reset" itself naturally...of course, none of these work. Now, we must try Adenosine so they start to put in an IV while the doctor talks to us about the risks of Adenosine. The way she explains it, the Adenosine will "stop" his heart then it should immediately restart and beat normally.

Jen and I are totally stunned by what is taking place...we had hoped to never see the ER at St. Francis again and definitely not 24 days after losing Nate. Owen cannot have a serious medical condition...this has got to be some fluke incident...these are the thoughts going through our minds.

After getting everything prepared, they inject the Adenosine and his heart rate immediately starts dropping and within a minute or two, it's down to a normal rate. The situation is back under control and things begin to calm down somewhat. Eventually, we get him transferred to room at The Children's Hospital and get a chance to talk with the resident on the floor and the pediatric cardiologist.

The cardiologist explains that Owen does in fact have SVT and that it is an "electrical" problem with his heart. Basically, he has an "accessory pathway", which is an abnormal "bridge" of tissue that connects the atria and ventricles. This extra pathway provides a second route by which electrical impluses in the heart can reach the ventricles and it allows these impluses to travel abnormally fast. In Owen's case, something triggered this accessory pathway to start working and the electrical impulses in his heart got into a circular pattern...they were going down one pathway (the normal or the accessory), and then back up the other. This circular pattern is what caused his very rapid heart rate.

The next part of the discussion is a blur of medicines, options on how to treat this and a discussion of a procedure in 10 or so years to "zap" this accessory pathway. Even though we have a pulse ox at home and can hook Owen up to it for the night, she wants to keep him overnight for observation. They hook him up to a handheld EKG monitor that will record every heart beat and be monitored by a tech in the PICU downstairs. If he has no other episodes for 24 hours, then he can go home.

I went home about 7:00PM to shower, change and grab stuff for an overnight stay at the hospital. Jen and I sit with him until about 9:00PM when we can tell he is about ready to fall asleep. She heads home as he & I spend an uneventful night at the hospital...he slept for 11 hours and only looked up at the nurses when they took his blood pressure and temp. during the night.

Morning comes and he is back to his normal self...constant motion, numerous walks around the floor, visits to the play room and the solarium...hard to believe that this kid has a heart defect!

The cardiologist comes and we talk some more about the next steps. We'll go to her office on Monday and they will give us a monitor for him to wear for 24 hours. This will record every heart beat and then we'll go back on Tuesday to get it off. In a week to ten days, they will have the results of this and we'll visit with her about the report. She'll also do an ultrasound of his heart just to make sure there are no "physical" or "structural" problems.

The good news is that this is not life-threatening...it can be controlled by medicine and he can undergo a procedure when he is about 12 years old to "zap" the accessory pathway.

The bad news is that Owen has a heart defect and it friggin' sucks! Yes, I know that he is going to be fine but the timing of all this is terrible and I feel that we've already had WAY MORE than our fair share of medical issues to deal with!

Since we've gotten him home, he's been fine. The medicine does not taste too good so it will be a challenge to get him to take it 3 times a day...bribery for a bite of a brownie or a cookie worked last night but not this afternoon!

Jen will do another post tonight or tomorrow so stay tuned...

Both of us know that Nate will watch over all of us, especially Owen, and things will turn out all right. We continue to thank you for your love, prayers and support during these difficult times!

Trey