Stoma Pics

I tried so hard to get a good pic of Aidan's stoma (trach incision) but he would not cooperate. This was the best I could get. From what he let me see today it looks like it's healing nicely. I had initially covered it with gauze but found that it was locking in moisture rather than keeping it dry. He seems a lot happier since the trach removal. I think he really appreciates just being a kid and not having to be held down for trach and g-tube care.

As far as learning to breath through his nose, it's still a struggle. Practice makes perfect. He gets better and better each day and got up to drinking 5 oz from the bottle in one sitting. That's a big leap from 2 oz yesterday. I'm so proud of him. He is such a trooper.

Trach Free!

FINALLY! The trach is gone! What an ordeal it was but it is finally all over. Everything went smoothly. No complications at all. The day of the surgery and the day after were rough days. I don't know why it always works out this way but Rich had a final during the surgery and one the morning after the surgery so he wasn't with me hardly at all. It was nuts. This is Aidan on our way to the hospital.



Rich dropped us off at the hospital at 7am and Aidan went into surgery at 9am. At around 9:45 he came out of surgery and he was not a happy camper. I've heard that coming out of the anesthesia is pretty rough so that would explain why he is always so angry.
Right before they took him back for the surgery.

In the pre-op waiting room we met this sweet little girl named Ellie. She had a trach too and came right up to us to meet Aidan. It's so rare to see another child with a trach so I instantly bonded with her mom. We had a lot to talk about. It made me sad because she started to cry when she found out that we were there for a trach removal. I can understand how she was feeling. The good news is that I spoke with her after Ellie's surgery and found out that after waiting for 6 years Ellie is ready to get the trach out too! Hooray for Ellie!!

After the anesthesia wore off completely Aidan was up and ready to play. He was back to his old self in less than 2 hours...breathing on his own!

Life without the trach has been AMAZING! There are so many things that parents take for granted that I will forever be grateful for. Last night, our first night home, I asked Rich to put Aidan to bed. He sighed... Then he got up and a light bulb went on. Wait a minute...That's right! No long process of suctioning with saline. Put him to bed. Go back and suction again. Wait until he falls asleep and then sneak in and put a "nose" on the trach. He just took him to his room, sang him a song and put him to bed. That was it! We are very happy and Aidan is doing fantastic. He is enjoying his voice a lot. Thank you so much to all of you that have kept our family in your prayers.

Day before the BIG DAY!

Can't believe that it is actually going to happen! The trach comes out tomorrow!!! We are beyond ecstatic. All day today when I would suction him or change the gauze or lug around the suction machine I kept saying to myself, "LAST DAY!" It's really hard to even imagine what it's going to be like to not have to worry about the things that we've been constantly worried about for the past 15 1/2 months. Just so happy. Anyway, this was our last day with the trach and it was a fun and busy one. First thing this morning we went to the doctor for a pre-op appointment. Just had to get Aidan checked to make sure he is healthy for the surgery. Then we went to the park for a play date.

Aidan with his pals. They are all within 2 months of each other.


Last pic of the day, taken right before I put him to bed tonight. Our appointment is at 6:45am so I got him dressed and ready to go so we can just wake him up and go. He should be in the operation room at around 10-10:30am so please keep him in your prayers. The next pictures you see of him will be trach free ones. What an exciting time. How blessed we are.

pH Probe...blah

Fhew! Thank goodness for the end of a tough day! Today Aidan had to get the pH probe put in. I explained in an earlier post that the last pH probe didn't work the first time it was done so we had to do it all over again. For those of you who missed that post a pH probe is a wire that is put in through the nose, goes down the throat and into the stomach. The other end is connected to a monitor that records the pH in his stomach so that we can know if he has any acid reflux. He has to have it in for 24 hours. This is a requirement before he can get the trach out on THURSDAY!! We are so crazy excited. It stinks that he's had to go through so much to get to this point but it is almost over. I just want to warn you that there are a lot of pictures coming up...

Right after the probe was put in :(

It was really sad to watch.

After all of that he still wanted to give me kisses. Sweet boy.

Since the monitor wasn't designed for him to be able to carry it around I had to put the pack-n-play in the living room. He was going to have to stay in it most of the day :(

I thought maybe it wouldn't be so bad if I gave him toys and put on some cartoons but after about 30 minutes I decided there was no way I was going make him stay in the pack-n-play.

So I started trying to think of a way to make it possible for him to carry the monitor around while he played. This was my first attempt which failed miserably. My second attempt was putting it in a boppy case, compliments of my sister-in-law Rebecca, and tying it across his shoulder. Failed. I tried like 2 other things after that. Failed.

Finally I did it! I got a pair of pajamas and put the monitor in them and buttoned it up. I tied the legs to the arms and made him a little backpack! It worked perfectly! He crawled all over the place with that thing!

He didn't mind it one bit. I'm sure there was a simpler and better way to do this but what can I say. You work with what you've got. We are learning to make lemonade when we're handed lemons. So here is the update: Tomorrow morning the pH probe comes out. We get the reflux results on Wednesday and the trach comes out on Thursday!!!!!!

Just throwing in this cute pic of Maya. This is what she did while I was trying to figure out what to do about the monitor. She is such an amazing baby.