Pierce - Age: 29 days

Happy New Year to all! Yesterday Nicole and I had a family meeting with Pierce's medical team. Among the topics of conversation were how Pierce has been doing, next steps and general Q&A for us. The doctors are not all on the same page. Some think that we should wait a couple of weeks to see how he grows and see if there can be any more progress made in a couple of weeks. The other side of the team thinks that we should have a tracheostomy.  After discussing the pros and cons with the Occupational Therapist, NICU Attending, Neurologist, Plastic Surgeon and the ENT surgeon, we decided that we will put him on the list for trach surgery for two weeks. That way we get the best of both worlds...two weeks to grow and make progress and if not, then we can go ahead with the surgery. Everyone seemed to be in agreement that this was a reasonable course of action.

There has been a decent amount of progress and a trach is a very life changing (for us - it is reversible for him) event. It requires a lot of care, time and effort and even though it can come out, it would be in a minimum of a year. That is a scary proposition and we could not just call a babysitter, go to any daycare, etc., so we like waiting, but we know that we cannot be here forever.

Anyway, here is a video that I took a few days back. You will see Superman socks on his hands cause he kept reaching for the stitches and the nose cannulla. Grandma K is there showing him his parrot (which he loves) and he tries to reach out for him.

All in all, not a bad couple of days. Ben

Pierce - Age: 27 days

And he is back at it again.... supporting the niners, sleeping and waiting to go home.

Nicole and I have a family meeting with all his doctors on Monday to discuss next steps since it seems like h he is not getting any better in the breathing and swallowing department so we will have to make some hard decisions once we figure out what the doctors think.

With that being said I will have more info for everyone tomorrow, but as it stands now he is dreaming of football, Bentley and Murphy.

Pierce wants everyone to know that he thanks them for all the prayers and well wishes, thinks that birdie has a good voice, wants to know who that handsome fellow is in his mirror that he keeps running into and that he looks forward to meeting everyone soon.

December 25, 2013

Merry Christmas!

Pierce - Age: 22 days

Alrighty, it is Christmas Eve and all the 'rents are in town. I picked them up last night from the airport. It is great to have everyone here. Andrew has been a huge help this last week and everything is set to have company. Yay! 

Another great thing is that Pierce's surgeries have healed wonderfully per the surgeons. That means that they are weaning him off the vapotherm. That have been dropping his liters per minute of air that is going in through his nose. This is positive cause he has to be at 3 before they try and turn him over. He is down from 7 to 4 overnight. Hopefully we will be down to three soon so that we can turn him over.

He is so uncomfortable and needs to be in a different position. Plus, I think it is harder to swallow and breathe on my stomach so I can't imagine it is easy for him. This is getting crazy and I think it is time for us to push things a bit farther. Nicole and I are sick of hearing him cry and looking all pissed off, so it's time. Everything is going well except for a few minor setbacks each day which I think are created by the docs, a bit. All in all, a rough couple of days, but I think that we are real close to being at the finish line.

Update as of 1030 am...genetics came by and they have the results of the micro array and they said that no chromosomes are missing or added, so that is great news! They said that a gene that might be mutated or misplaced (as we all have one or two that are out of place or strange) and without more specifics, which they don't have cause every test has come back fine, they won't be able to tell us which one cause they can't test for them all. Not to mention that of the 40,000 genes that we have, geneticists only know of about 10,000 and can only test for about 5,000...so we may not know for a while, if ever...

Pierce - Age: 18 days

So, I have not been posting anything as there really has not been much change. He has been on a breathing machine, on morphine, strapped down to the bed with weights on his head. This had been to keep everything where it is supposed to be and not cause undo trauma. All we could really do is watch him lay there asleep.

But today is a different story. This afternoon they extubated him which means he doesn't have the tube in, no drugs and is breathing on his own. He still had to keep his weights on his head, but he looks much better, is breathing, sleeping and swallowing. Yes, swallowing. It looks like he is working it all out.

That is the update for today. Great news!

Pierce - Age: 15 days

It's 700 in the morning and we are waiting for the surgery spot. We were told that they might have brought him earlier if a spot opened up, but nothing did, so he went down to the OR at 1130.

He was not a happy camper when we went down. I think he just wanted his diaper changed. Oh well. So the first couple of pics are of Pierce on his way down to surgery.

30 minutes after he went in and we were banished to the waiting area (where you can't eat or drink) we were summoned by the front desk to talk to one of the many doctors.... This time it was the ENT Doc that wanted to tell us about the scope work that he had just completed.

He said that all looked really good pay the jaw and that when he was looking at the tongue in relationship to the throat, that he has a mild problem. He said it wasn't that bad but was obviously positional so they were moving forward worth the other surgeries. Phew.... That is good news.

Update: 330pm... Pierce is out of surgery. All went well. No complications. All was routine. Dr. Oh said that the tongue lip adhesion really brought his tongue forward anf opened up his airway. The g tube went in fine and the nissen was routine. All in all the little fella is good. He is currently sedated and on a breathing machine and will be either until tomorrow or next week. Just depends on him. 

So, yay for surgery and we will see how this works for him. 

Pierce - Age: 13 days

Go niners!