This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

July 26, 2007

Tuesday, April 27, 2010

A Brief History ...

There is not much news to report today. Michael got some time in a swing he borrowed from the boys across the way and had a great time, but it was otherwise an uneventful day. (Hard to have action when you've already accomplished everything, I guess!) Mom suctioned the trach tube for the first time ... but that about sums it up.

So, in response to several questions we've received, I thought I would back up a bit and tell you all what happened from the time Michael was born until we opened up this website. Basically, how did we get to that big ugly word "surgery"? Feel free to stop reading now.

Michael was born on June 19th at 2:27 in the afternoon. Due to complications from a surgery I had as a teenager, I delivered him by scheduled C-section, under general anesthesia. By the time I woke up, he was in the NICU already. He scored very well on his APGAR tests, failing only in one aspect -- he was struggling to breathe. In fact, they had to keep pinching him to keep him breathing. As fate would have it (or the OR requirements) a NICU respiratory specialist was on-hand waiting for the delivery, and it was only a few short minutes before the neonatologists were on their way up to take Michael to the NICU.

Michael had such a significant retraction when he breathed (retraction = the amount his chest pulls inward when he draws a breath) that nurses and doctors frequently referred to it as a pectus (pectus = malformation of the chest wall that makes it curve constantly inward). Basically, each breath was a huge effort for the little guy. (Post surgery there is no pectus or retraction.)

We also knew Michael was born with a rather significant cleft palate. (Just the palate, not the lip.) At the time, we thought the palate, and transition, were probably the cause of the difficulties. Little did we know. As it turns out, Michael has a condition known as Pierre Robin Series. It is a name given to a series of symptoms when they occur together -- specifically, a cleft palate, a small or retrograde chin, and a tongue that rolls backward into the airway, blocking the airway and causing breathing problems. The average person has a 1 in 30,000 chance of getting this series. There are genetic causes, and pure coincidence. Michael's version is genetic, but it is not the typical genetic cause. There is a version of this Series that comes with severe additional complications that we are told Michael does not and probably will not have. Basically, it boils down to a lazy tongue he can't really control that covers his airway. For his entire life before surgery, Michael had to be on his stomach (except during careful periods of observation) so his tongue could not roll back as far. He also had a pacifier to help him keep his own tongue forward.

After a few weeks of observation, during which Michael did improve quite a bit, it became clear he was not going to be able to conquer the problem himself any time soon. Surgery became our only option, so they inserted the trach to give him a stable airway. The G tube in his stomach is to guarantee a stable source of nutrition regardless of Michael's ability to each by mouth (either because of the cleft or because of the trach). We hope it won't be all that necessary.

When will the trach come out? We don't know. It could be a few years, or it could be 7 months. He will have cleft palate surgery sometime between 6 and 9 months of age, and it may be that closing the cleft and 6 months of growth are enough to take out the tube. It may not be. We will have to see.

If anyone has any questions, please feel free to post them on the message board. We'll be happy to answer what we can.

And again, thank you all for your concern, and for your curiosity. It helps us (well, me at least) to talk about what Michael has been and is going through. I always worry that no one wants to know the "gory details" so when folks ask, it gives me an excuse to talk about it.


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