PDP Exclusives by Rebecca

Saturday, July 24, 2010

Things are Better Every Day

Addy had her appointment with the ENT last week. They were running an hour behind, so it was difficult to keep her busy that long. I found it sad that Dr M knows her by Addy now. You know you have been seeing a Dr for a long time when he knows your child by her nickname. He has been following her since she was a tiny little newborn in the NICU.
Dr M listened to her and said he didn't hear any squeeky noises from the tracheomalacia, which means it must be resolving pretty well. It was determined that her stoma still has a little tiny depression that air can escape when she is really upset. Otherwise, he doesn't think anything is coming out or in. In about year, he will remove the scar tissue and close the stoma. We got the OK to sent back all of our equipment. We are keeping the oxygen and pulse-ox for another winter to see how she does. I have a feeling we won't be needing it anymore, but I am not ready to give it up just yet.

Sunday, June 20, 2010

Won't Be Long Now!

We had a playdate with some friends today. Addy doesn't get out with kids her age very often, but we have been working with that. She spent the day watching the two little girls run and chase each other around the house. It must have motivated her somehow because by the end of the day, she kept standing up and trying to let go. Pretty soon we are going to have a WALKER on our hands!

Tuesday, June 8, 2010

The good, the bad

About two weeks after Addy was decannulated, Chuck lost his job. This was major since he carried Addy's insurance, not to mention the loss of income. Luckily, my former employer allowed me to come back as a temp. I didn't want to go. I am not ready to me away from Addy yet. I did enjoy the social interaction, but my heart was at home with Addy. About 2 weeks after I went back to work, Chuck received a really good offer from an IT Consulting firm. He is beyond happy with his new gig and we are happy for him. The good news is that Addy now has long term care, which makes no sense, but I will take it! My semester is over. I got 3 A's and a B. I am pretty satisified. Hopefully in the next few weeks, I will apply to the nursing program. I am pretty stoked.

The kids are out of school and we have adjusted to being a trachless family again. Her equipment is in the garage with the exception of her pulse-ox. We are still using it at her ENT's request, but hope to stop using it by the time she sees him again next month. Addy is talking a little. She calls the dog "Da" and babbles a bit. I am working on getting her into speech therapy. She flunked her last swallow study, but I think we did it too soon after her decannulation.

Thursday, April 22, 2010

The end of one chapter

Addisyn's trach Journey has come to an abrupt stop. We have been discussing decannulation with Addy's pulmonologist for quite some time. He saw her when she was sick a few months ago and ordered a chest x-ray. He was very happy with what he saw- a visible airway below the trach tube. The left main bronchus was still collapsing, however it will collapse with or without the trach. In other words, the trach was doing nothing for her. She no longer needed it. The next step was to get the ENT to agree. Her ENT is who placed the trach and is responsible for handling her tracheomalacia. He is more conservative and less likely to agree to decannulate. We saw him on Tuesday and he scheduled the bronch and trial decannulation. Now, fast forward to Friday- Trach Change day. I changed Addy's trach after her bath since her ties were wet. She has a lot of granulomas and I was unable to get the trach in. She was screaming, so I put the smaller trach in and called the ENT. They had me bring her to the hospital and were going to do a bronch and put the bigger trach back in. We received front of the line privelages in the ER. A while later I received a phone call from the ENT asking if I was willing to do a trial decannulation in the PICU instead. Hell Ya! Addy was admitted on Fri the 16th and a cap was placed on her trach forcing her to use her upper airway. She was capped over night with no problems and the ent came in at 11 to remove the trach. She stayed in the PICU another day to make sure she could handle being a nose-breather and was sent home on Sunday. We are slowly getting used to it. I haven't suctioned a trach since Friday night!

Tuesday, January 5, 2010

The Holidays are over and a new year

I really need to get better at keeping up on here. Addisyn had her bronch on Dec 7. I didn't go as planned and I was bummed about it for a while. However, I am now over it. Addisyn's bronch showed significant malacia in the lower airway. It is basically unchanged from her first bronch in the NICU. Because of this, she is scheduled for an MRI and will have that tomorrow. If there is something pressing on her airway, it will require a major surgery called an aortapexy to fix. However, tracheomalacia typically resolves by 2 years old and is its worse at around 18 months. All of this information I found on the internet, so I am not sure why her Dr is jumping the gun so soon and ordering the MRI. I am fine with it though, because if there is something that needs correcting, I would rather know sooner than later.

Aside from everything else, the Holidays came and went and everything went pretty well. Addy stayed healthy with the exception of a cold. It was wonderful being able to celebrate the holidays as a family instead of having one of our children in the hospital and the others at home. Addisyn has come so far in the past year and never fails to make us laugh. She is truely a crazy, funny little kid.