Eat For Two, Breathe For Two

I will never forget the moment I became a mother. It wasn’t when my son was born. That was just giving birth. Any woman can do that. No, for me, it was the next day. The doctor discharged us 10 hours after delivery, but I walked in the door of the house to find the phone ringing. It was Matt’s pediatrician telling me to bring him back to the hospital immediately because they needed to run some tests. My idiot OB/GYN didn’t check me for Strep B before labor, so I didn’t get antibiotics during labor and Matt contracted it. When we got to the lab, they needed a urine sample from him, so they put a little plastic bag on him that had tape around the top. After he peed in the bag, they just ripped it off him and he started screaming because it hurt. I was ready to kill the lab tech, and I would have given anything to take on the pain for my baby. THAT was the instant I became a mother. That feeling never stops, no matter how old our kids are.

On Thursday, I went with Matt to his one week follow-up with his cardiologist, and to get the results of his echo from last week. Dr. B. said that he wanted to do a cath procedure to double check that the cardiomyopathy wasn’t caused by a blockage, and he ordered it for the next day. He asked Matt how he was feeling on the meds, and Matt said the coreg was making him really tired. Dr. B. told him that is the point of the coreg. It lowers his adrenaline to give his heart a chance to rest, so Matt will have very little energy over the next six months. He explained that he would double the dose each time we see him until Matt’s at 25mg twice a day, and then he’ll start raising the dose of his lisinopril. The goal is to get Matt feeling as tired as possible.

After Matt’s cath test yesterday, the doctor sat with me in front of a computer and showed me the video of the scan while he explained in ever more detail what it all means as far as Matt’s treatment plan. The good news  is that Matt’s arteries are perfectly clear, so it is definitely viral. The bad news was that Matt’s left ventricle is so enlarged that the doctor couldn’t get the lead in there. Every time he tried, Matt’s heart rate and blood pressure would jump. Instead, Dr. B. ordered a MUGA scan so they can determine if Matt’s ejection fraction has improved. I asked what his ejection fraction was during his echo. We had assumed that it had to be over 35% since they let him leave the hospital. We were very wrong. Matt’s ejection fraction was 30%, which is pretty damned bad. Anything below 35% is worrisome.

Dr. B. explained that the MUGA scan will tell us whether or not Matt is responding to the medications. If his ejection fraction has increased, then we are good. If not, then Matt will need to be fitted for a “life vest” that he’ll need to wear 24 hrs a day, except when showering. The life vest will detect any arrhythmia and will shock his heart to get it back to a normal rhythm. Without the life vest, Matt could develop an arrhythmia that could lead to flash pulmonary edema, which would then cause his heart to stop, killing him instantly.

Of course, Matt is at high risk until he gets the scan. It’s not like he’s magically protected for the next week or two until he either responds to the meds or gets the vest. While I appreciate Dr. B.’s candor, knowing that my son could quite possibly die in the next few weeks really sucks.

Fortunately, the meds do seem to be working, as Matt isn’t quite as swollen and he’s exhausted, so we are all hopeful that his ejection fraction is improving. Matt’s medical team has been sure to point out that a negative outcome is worst case scenario, and Matt does not seem to be a worst case. Dr. B. told me about a patient he had when he was doing his fellowship; he was a 28 year old male with congestive heart failure, just like Matt. However, this patient’s cardiomyopathy was caused by a blockage. The damage to his heart was so extensive, there was nothing they could do, and he died.

Last night when I got home, I was completely exhausted. I couldn’t knit or eat, let alone cook anything. Ron and I had popcorn for dinner. I walked around the house, wracked with guilt that I didn’t make Matt go to the doctor sooner. I knew that swelling in his ankles and feet was a bad sign, but I didn’t do anything except encourage him to eat better and lose weight. I should have dragged him to the doctor months ago. It doesn’t matter that Matt should have been responsible for his own health; I’m his mom. I’m ultimately responsible, because it’s my job to take care of both of my kids, regardless of their age.

For now, I have to keep those feelings compartmentalized and take this all one day at a time. I do not get the luxury of “losing it” quite yet. I talked to Leigh yesterday and told her that I’m afraid to cry because I’m not sure I could ever stop, so I just swallow it down and keep moving.

These are the things that make us parents. Anyone can take a kid out for ice cream, or buy them things, or spend time at an amusement park. It takes a lot more to sit with your child while they are sick, worry over them, and do what’s best for them, not you. It is not biology, it is beyond genes. It is being present for the bad stuff, not just the good.

 

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