Today was Troy’s visit to the Apnea Clinic at Phoenix Children’s Hospital. I thought I would post a picture of Troy in his apnea belt with the monitor because I figure most people haven’t seen one before. If you look closely at the upper left picture you can see that the monitor records heart rate (high and low) and the respirations. Troy’s monitor will alarm if he has as few as 60 heartbeats per minute or as many as 200. If he stops breathing for 16 or more seconds, the monitor will record an event and it will alarm at 20 seconds.
The results were sort of a mixed bag today. It was as I predicted but a little worse. Good news was, the alarms on the 21st and 22nd WERE labeled false alarms. They assumed a loose belt and I confirmed that I felt that is exactly what it was. The loose belt wasn’t catching his shallow breaths. The other thing I liked knowing was that they commented on every alarm I was aware of (including the first day alarms when the RT put it on wrong) and I felt they interpreted everything just as I had seen it. The bad news was that the alarm on August 2nd, WAS in fact, absolutely real AND that he has had several more (I’ll call them) near misses. In total, they evaluated the report as “abnormal”.
The clinic nurse said that the event from the 2nd was a definite but that there were several others that she felt the Dr. was going to classify as real events as well even though they fell just short of the 20 second mark (therefore I was unaware of them). Technically speaking, a “normal” baby may have periods where they stop breathing – even as much as 15 or 16 seconds BUT that is not common. When a baby is having REAL apnea plus several of these lesser apnea events, it is cause for concern. She agreed though that Troy was on the lesser end of the apnea scale (which I am well aware of post Ty and boy am I thankful for at least that).
She said that in total he has had over 100 recorded events. Some of those events were tachycardia. His heart rate was too high. These we can discount because he was crying. No biggie. A few were the ones from the July 7th when the RT put the belt on incorrectly. Then there were the ones from the morning of the 21st and 22nd. All the rest though were those minor apnea events that just came shy of the 20 second mark. For this reason, they have advised that he be on the monitor at all times unless he is awake or being held by someone who would know if he stopped breathing. She said the EARLIEST he would come off the monitor would be October because he needs to reach 45 or 46 weeks gestational age first (he is 42 right now) AND he needs to be a full 2 months past any event. He will be seen again in early October to see how things are going.
I love Phoenix Children’s Hospital. When a child is admitted to one of their clinics, they get such great universal care. Ty was admitted into the pulmonology clinic there as well so this is my second clinic experience. When you see a clinic Dr., they concentrate on the area of specialty but they don’t stop there. They discuss everything else as well and even send a nutritionist in with every visit. Because of this, we had a good long talk about the continuing reflux and projectile vomit issues and they decided to take Troy off zantac and pull out the bigger guns of Prevacid which is a pro-inhibator. They said to give it about a week but that the Prevacid should help to start slowing the vomiting down with very little side effects. Hope it works.
He weighed 10 pounds 6 ounces today and was 20 inches long. (Tanner was 9.11 and 22.25 at birth). The Dr. said that preemies are notorious for looking really chubby because their weight increases ahead of their growth usually. I am surprised that Troy is only 20 inches long. For two weeks/two months old, that is pretty diminutive so far it seems. He’ll catch up soon I am sure.
I also must let you know that his amazing cuteness became a hallway discussion because the last nurse to come in said that she had to see him because everyone in the office was discussing what a beautiful baby he is. You know what I think about that.
So no that isn’t the news I wanted to hear but it is what I expected to hear. My gut did tell me that the first incident was the real deal so I wasn’t surprised. I am not happy to learn that he has come close to several more too BUT I AM glad that he obviously started breathing on his own because the alarm didn’t remind him nor did I so I can look on the bright side of that I guess. I am so GRATEFUL that his pediatrician supported me in getting him a monitor!!!!! We’ll never know what could have happened without it. I feel even more concerned today than I have been knowing that technically speaking, he is continuing to have events but we have been through MUCH worse with Ty and all lived to tell about it so I am just trying to be thankful that we HAVE the monitor and leave it at that.
The nurse suggested that I contact the electric company and let them know I have a child back on medical equipment so that they prioritize us in case of an emergency and she also suggested I try to get insurance to agree to synergis (RSV shots). That will be a toughy because he is borderline for qualifying but I HOPE HOPE HOPE we can push him through. Will help me feel much better this winter. I also wanted to add that they sent me home with a CPR kit that includes a little practice doll. The protocals for infant CPR change all the time it seems. The new standard is 30 compressions to two rescue breaths. As of Dec 2010, they want you to start with compressions first because keeping the circulatory system going is the most important to keeping the brain alive. The kit they gave me still starts with the rescue breaths but that is fine in Troy’s case because chances are, him not breathing would be the primary issue anyhow. After Jim and I watch it, I want to pass it through the family because I think a 22 minute investment is wise for all of us.
One other thing I found interesting…the nurse said that from her 21 year experience, premature babies often go home after the NICU experience and don’t have their first apnea event until they are a month or more older. This is exactly what happened with Troy. No apnea in the NICU thus the reason they refused him a monitor. It worked out in my case because of my relationship with Troy’s pediatrician but if I should ever adopt a premature infant again, I will INSIST upon a monitor until they are a couple of months old. (And no, we are not planning on another adoption but one can never tell what will happen in life so if a baby fell in our laps…well who knows).
I am a little blog AWOL lately because this is my last week before I start school with the kids and I have a long list to accomplish. This blog post is serving to set me even further behind so off to work I go. Busy busy busy…