Saturday, November 15, 2008
The Tortoise Won!!!

We've missed a day of blogging because we couldn't connect to the wireless router at the Ronald McDonald House, so there's a lot to get into to.


Friday morning we called the hospital from our hotel room to see how Tre`s night was. The nurse on duty said that he had another good night, but that the E.N.T. doctors came in again early this morning when he was having another one of his coughing spells and again they were reluctant to discharge him. See now here is the problem. When Tre` is sick, he has coughing spells in the morning when he wakes up, whether he has the trach in or not. Now the E.N.T. doctors only see him first thing in the morning when he is having one of these episodes so it concerns them. We wanted to get to the hospital as soon as possible, but we had to find a place to stay. Our hotel didn't have any rooms left, so we called the Ronald McDonald House, and after getting their books in order they found that they did have a room available so we took it. We checked into the Ronald McDonald House and then we were off to the hospital to check on Tre`.


We had previously asked for a consult from Tre`s pulmonary doctors. When we got to his room, we met up with pulmonary who examined him and thought he looked great (keep in mind that Tre was not having his coughing spell). So pulmonary spoke to E.N.T. and this is how we found out about the confusion. E.N.T. thought that Tre`s coughing spells were the norm for him all day. They didn't realize that after he wakes up and gets it out of his system, that he is fine for the rest of the day. When pulmonary told them the results of their examination and E.N.T. learned that his coughing spells are only there when he first wakes up in the morning, they said that Tre` had passed his decannulation trial, and he could go home.


For the first time in his life, Tre` was breathing completely on his own, without the assistance of any medical device whatsoever. We are so proud of him. It's been a long fight, but no matter what any doctor ever said, we know our boy and we knew that he could do it.


So Friday night we left the CHOP, and as soon as we got Tre` into his stroller, he wouldn't stop talking. It was Elmo this, and Ernie that, and a little bit of his own made up language that no one has been able to translate yet.


We stayed at the Ronald McDonald House because we didn't want to be too far from the hospital the first night. Tre` got to watch Elmo in Grouchland, and then we went downstairs to play in the playroom. After that we all got ready for bed and just crashed for the rest of the night.


Saturday moring comes and we pack up all of the things, checkout of the Ronald McDonald House and head home with our now trach-less son. We still have a lot left to do. Just to name a few, we have to get him walking, chewing whole foods, and get the G-tube out. But for now, we're just happy that he won't shut up.


Nov 11, post decannulation

Just got my trach out. How do I look?

Playing at the Ronald McDonald House

Who's Bad?!?!


posted by Tre's Mom @ 2:08 PM   6 comments
Thursday, November 13, 2008
Part 2: The Tortoise and the Hare (quick update)
So we were supposed to bring Tre` home today but there's been a change of plans. Last night was a good night, best yet. However, when he woke up this morning he had yet another coughing spell. When he coughs hard, he desats. They never have to act because he brings himself up but they want to watch him "at least" one more day. There is also a lot of mucus that he's coughing up but this is brand new. He's been used to coughing secretions into a tube and being suctioned.

Of course, I'm nervous. He's a strong kid...but I'm his mom.



posted by Tre's Mom @ 9:02 AM   0 comments
Wednesday, November 12, 2008
The Tortoise and the Hare
One night down and another to go! It's kind of weird seeing him without a trach. This morning was a bit of a scare. You see Tre` has had a cold since Thursday. No matter how many doctors or nurses we told it always sound as if it was new news. OK fine... So the nurse was alarmed by the amount of coughing, respiratory rate, chest retractions, and mucus. This is a typical (sick) Tre` but since they didn't know him, it was alarming. Their worries has (still does) have me worried. I was ready to hear, "we have to put the trach back in." I kept asking the same questions over and again. I'm not sure why but I'm guessing it was my nerves. Vic claimed I kept asking question that I knew the answer to. Uh huh whateva! LOL

The doctor came in late in the afternoon to inform us that she will discharge him in the morning. HELLO!!! Of course I had to inform her that his is suffering from a cold, his symptoms, and the fact that they sent cultures to the lab. I just wanted to make sure she felt as though he was ready...to go off in the world...without a trach. Anywho she said his numbers were optimal but they are good. If you think that gave me a sense of relief, think again. I have been so worried I can't think straight. If someone ask me a question, I would drift off to la-la land. Vic has been cool, calm, and collective.

Vic said he believes that he will start to thrive now since the trach is gone. I completely agree with him. Now there are other issues we can address and check off "the list." Tre` has come a long way.

  • This is the same child that the doctors (the pesky hare) didn't believe would survive his hue date (April 16, 2006.)
  • This is the same child that was deemed to be ventilator dependant for the rest of his life.
  • This is the same child that they thought would be a vegetable. He'd never walk, they said. He's never talk, they said. He'd never show emotions, they said. They didn't give him much hope.

While he's not walking (yet!), but we are working on that and his physical therapist believes he can do it. Tre` has inspired me so much, it's hard to explain. After witnessing everything this little child had to go through, I have a new appreciation for life and how blessed we are. He's a happy child. I don't know why but the boys laughs at everything. No matter how bad he is, he'd do something to make us laugh. Oh, and lets not forget that Tre` LOVES to talk. He goes on and on and on...but I appreciate that, too.

Miracles happen and prayer changes things!

Again, I will remind you that I am still not home so disregard any and all typos, please. This computer is evil! LOL


The tortoise and the hare Pictures, Images and Photos
posted by Tre's Mom @ 8:52 AM   0 comments
Tuesday, November 11, 2008
Tonight's The Night, The Finish Line Is In Sight
Right now Tre` is having his decannulation trial. While setting up the appointment, a nurse explained everything in detail. Tre` was supposed to sleep capped for the first night and if he has a successful night he will be decannulated early in the morning.

Vic, Tre`, and I arrive at the hospital. We got into the room pretty quickly. I was feeling nervous because he was just getting over a cold, and I don't know if that will hinder his performance during the trial. The doctors and nurses arrive in his room, and tell us that they have to coordinate with the E.N.T. doctors because they have heard two different stories about what is supposed to go on tonight. We went over his history with the doctors. The last time he was admitted into the hospital, he was on so many meds, but now he is not. The P.I.C.U. doctors examined him and then went to talk to E.N.T.

So the E.N.T. doctor walks in and says, "Are we all ready for decanunulation?" Vic and I said yes, but there was something strange about the way he asked, so Vic ask when he was planning to pull the trach out. The doctor said right now, and the both of us almost passed out. We knew that he was being admitted for a decannulation, but it was just so sudden. We figured that we had another night before the big day. The doctor said that his results from the sleep study were so good, that they feel comfortable with decannulating right now.

He then proceeded to remove the trach and covered the stoma with guaze and tape. I can't remember the last time we saw Tre's neck without having to hold a trach in place. After the trach was removed, Tre` acted as if nothing had happened. His SATS were between 98 - 100 and he was not trying to go to sleep even though it was past his bedtime. All he wanted to do was play and flirt with the nurses. I hope that he can keep his SATS high all night and prove to them that he is ready to leave the trach behind him.

I'll give updates as we continue the trial.

If my font or color looks weird it's because I'm on another server. I would like to apologize if there are typos. I am soooo tired.
posted by Tre's Mom @ 11:26 PM   0 comments
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