Byrne Family... of five!: Weening and Waiting

It has been nearly four weeks since Samuel came of the JET ventilator... and he is still rockin' the CPap!

Being off the JET has been fantastic for many reasons, the top two being:

1. He doesn't have to listen to the constant, 24/7, sound of "dut, dut, dut" (sounds kind of like a jackhammer or a helicopter... it's enough to drive you crazy ).

2. Now that he's on CPap, he's also on a normal trache connection which means it is much easier to hold him! For the first time since June we can hold him chest to chest like a little baby!

This is mom's favorite... Samuel looks pretty comfy too :)

Now we are in the weening process... both on the CPap settings and his meds. Samuel's CPap settings have come down incredibly over the last four weeks, and he continues to amaze everyone. He needs to ween to "home vent" settings - in other words, the settings have to be low enough for us to maintain once he comes home. So far, he is on the right track :)

We are also weening the meds... his morphine and versed. Actually, after a couple unsuccessful tries (watching Samuel withdrawal was terrible), the NICU team tried something new and he is now completely off the versed! It is wonderful - I really think it's almost like a fog has been lifted. Samuel has been so smiley and playful! They also continue to ween the morphine... slowly. Samuel does not do well with change, hence the couple tries it took to get off the versed.

Now comes the waiting... we will wait for the feeding tube surgery for a little while. It's called a G-tube, and he will also get a nissen. Below are more in-depth descriptions of what these are, but in general the g-tube is how Samuel will get nutrition while he learns to eat, and the nissen is a procedure where they wrap the stomach to prevent reflux and, more importantly in Samuel's case, reduce the risk of aspiration. For kiddos on traches aspirating is extremely scary.

Samuel is strong enough to get the g-tube, but not the nissen... so to avoid two surgeries, we will wait. During the nissen surgery, CO2 is used to puff open the stomach... CO2 is exactly what Samuel has been trying so hard to get rid of! Anesthesiology is reassessing him weekly, and once they give the thumbs up, the surgery team will reconsider him. But, waiting isn't all bad. I can't believe I just said that. From what I understand, we have been working so hard on Samuel's respiratory status and we need to remember how far he has come... and unfortunately, how fragile he still is. He has amazed us! And, since there's no reason to rush the surgery, DB and I just need to practice our patience. Yea :)

G-tube: A gastrostomy feeding tube insertion is the placement of a feeding tube through the skin and the stomach wall, directly into the stomach.

Nissen fundoplication: During the fundoplication surgery, the surgeon improves the natural barrier between the stomach and the esophagus by wrapping a part of the stomach known as the gastric fundus around the lower esophagus. This prevents the flow of acids from the stomach into the esophagus, and strengthens the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily.

I love to suck my thumb!

Check out my toy! It's not a tube, but it will do :)