Okay, for people that don't follow MWOP, that title doesn't make much sense. But its actually a tongue in cheek joke for those folks. I am going to do my best to detail the events of July 15 to July 23rd. If I get too detailed, I'm sorry, I am doing this for my benefit just as much as for people wondering.
For several months now TJ has been extra anxious, even for him. He's also been severely depressed at times and became very overwhelmed with school. He was so agitated that I made an appointment with his Pediatrician for April 22nd. At that appointment his pulse read at 196. The nurse was so shocked that she left the pulse ox on his finger for awhile to make sure it wasn't a malfunction. By the time we left that appointment it was 180. That figure will become significant later in our story. His doctor said he was just really stressed right now and he wasn't going to give him any medication. However, his pulse was a little (!) high and he took him out of school for the rest of the year to relax.
Mom and Aunt Janice went to Missouri and TJ wasn't getting any better. His heart rate was still high and would average about 140-150 at rest. We didn't take it all the time but we were keeping track. His doctor did say to do that at least. Fast forward to July 7th and we take him back to his Pediatrician. His pulse rate has never come down and he's been nearly suicidally depressed. This time his doctor said that (maybe) he should see a Cardiologist since it hadn't gone down in two months. So on July 15th (that is sooooooo fast considering we had to go through insurance) he had a appt with a Cardiologist at 4:15 pm.
We got back there with him, they did the pulse ox thing and an EKG. The only reason I know what his pulse was is because the doctor came in highly agitated that a healthy sixteen year old at rest was 180. He said something about his P waves were completely missing on the EKG and he could not even begin to deal with this situation. Now remember, three months ago he was at 196 and nobody batted an eye. Now he's the 180 he ended that original appt with and this guy is hitting the roof. We were sent directly to the hospital, which was right across the street. By the time we got there and they took his rate it was 192. Things moved rather quickly after that.
The first thing they tried was a 6, 12 and 12 of adenosine. That brought it down to 180 but it wouldn't budge below that. The poor kid was electrocardioverted and that finally broke it. For those not in the know, they actually used CPR paddles on him to "reboot" his heart. He was given versed first and they said he probably wouldn't remember the experience. Yeah, well, that didn't happen. You never ever want to see your son's legs flop up and down as they shock him with paddles. Luckily, my Dad had pulled me aside so that's all I saw at the time. TJ still has the burn mark pattern on his chest.
They put him on oxygen to help with his heart and we waited in the ER for a few hours. Three hours later it shot back up and this time adenosine worked. Now we were officially admitted. The hospital my son was in is really an adult hospital. He was literally the baby of the cardiac floor. Its a good thing he's such a level headed kid because otherwise he would have been rotten! He was terrified so I stayed with him, sleeping in a hard backed chair. Not that I got much sleep. While there they did another EKG (yay, the P waves were back) and an electrocardiogram. The whole time he was on oxygen. The situation was just surreal.
They put him on a medication but he continued to go into SVT. On Thursday night I took his oxygen off for him to eat dinner (it made his nose run and drove him nuts) and he did it again. That night it was decided that he should be transferred to Loma Linda Children's Hospital for better monitoring. The next morning I was told the ambulance was on the way and he would be in the Cardiac ICU just in case. He went into SVT three times in the ambulance but he was always coherent and able to tell everyone just how he was feeling.
We got to LL and they got him settled in bed. He was in and out of SVT constantly. They wanted him to do it so they could get it for their tests and it wasn't hard. Just the guy coming in to draw blood set it off. Then I could hear all these cardiologists all discussing how his rhythm was all over the place. Its not a good thing to stump the people trying to help you. Finally, I was allowed to come back in and was hooked up to everything under the sun. Now I didn't have to wait for vitals to see if he was in SVT, he was on a monitor. The next day they started him on the same medication that he had at the other hospital in a larger dose. For two days we had peace. My nerves were shot from constantly hearing his alarm go off, his nerves were shot from waiting for it to go off.
I had been home once in all this time for a brief 6 hour stay. The rest of the time I was with him. I did go down to the cafeteria of course but I never went home. On the third day he got up to go the bathroom and went into SVT again. You could have heard the sigh from wherever you live. It was literally to the point that we both would tell the monitor to just shut up. Yeah, it didn't scare us anymore, it was just plain annoying and we both wanted to go home! Later that day he again went into SVT and it was obvious that the medicine was not going to work. He took the meds twice a day so he missed the next two doses. SVT episodes were coming often and lasting a little long. Finally, a little before his ablation they ended up with adenosine again since he was at 214 without breaking.
I can't tell you much about his ablation since I wasn't there but I can tell you that he fully remembers it and it was not a problem getting him into SVT in order to find the pathway causing it. He said he heard the machine go off four times that burned different areas in his heart. He felt the tubes going through his body and can tell you what happened if you want to ask. Where he messed up is refusing pain meds in recovery, thinking he could get by on Tylenol. He didn't realize that pain meds were already working for him and they would wear off. He was nearly crying by the time they gave him some Tramadol and it kicked in.
The good news is the ablation broke the SVT but the bad news is that his particular kind usually comes back. His resting heart rate is still 110 or thereabouts and it shoots to 160 when he walks. He's supposed to exercise for short amounts of time and let us know if he has any problems with his heart rate. He's so in tune with his body now that he can tell you fairly closely what his rate is. He has had three bouts of SVT since the ablation but they break in a second. For those that are in the know, his SVT starts with an H and ends with a T. I have forgotten the middle letter!
We got home yesterday and things are pretty much back to normal here. I've done some laundry, dishes, etc. TJ said his heart rate was up earlier and got us all panicking but it broke. He said he's felt it race a few times, it just always stops within about a second. So here is praying that it stays that way and even goes down some. When your resting heart rate is already a bit high, it has less distance to go up. The doctor that did his ablation is not totally confident that this will stick, that's never a good thing to hear. All we can do is go day by day, but I really appreciate everyone that prayed and/or sent good thoughts.
TJ's firsts for this: First heart medication, first IV, first shock, first hospital stay, first ICU stay, first heart monitoring, first electrocardiogram, first chest x-ray, first ablation, first time using a urinal, first oxygen use- I may be missing some firsts but these are things I would rather forget.
I regret to inform those of you with MWOP that I do not have pictures of my child being shocked, on oxygen or receiving the adenosine. You will just have to use your imagination.
Monday, July 7, 2014
TJ finally had his long awaited appointment with the doctor today. First of all, despite what Mom thinks, he did not grow while they were in Missouri. LOL He's still a respectable 5'8", and growing. I didn't ask about his weight but they said he was fine. The nurse did the pulse ox and got a 180, she was not impressed. She gave it five minutes and it was still 180. Did I mention the nurse was not impressed? The doctor came in and we talked to him about the depression, stomach problems, headaches and high pulse rate. He gave us the good/bad news that his heart problems could be the cause of all of these. Yes, even the depression to some degree. He did put him on a lower than the lowest dose of a anti-depressant. The lowest dose is 20 and he put him on 10. He is referring him to a cardiologist and I pick up the referral tomorrow afternoon. Normally referrals go through the insurance and then they are mailed to the house. They are not wasting any time here. I have been concerned about his pulse rate but happy when it was as low as 106. I was informed today that is not acceptable for a teenager at rest. He swings anywhere from 130's to 180's and that's just not going to work. The only thing here is I was supposed to get him exercise and now I am glad I didn't get out. His pulse has been doing this since at least April 22nd (that's his first appt where they took the pulse) and that's too long. I just cringe though thinking of how high its been and if I had taken him to go swim. Would I have been calling 911 from the gym? Would my kid have had a stroke or heart attack at 16? I don't know, but I am glad I didn't find out the hard way. I will keep everyone informed on what's going on with him as I get information myself.
Posted by Michelle Bogart at 9:50 PM