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!

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.

Another busy week....

Last week, Addisyn had her 6 month appt and shots. It went well, however the redness around her trach was not going away with Nystatin, so her pediatrician did a culture. It came back with a mild staph infection, so we were given an antibiotic gel and all seems to be getting better now. Addisyn is now 14 lbs 4 oz, and in the 10% for her actual age. She is in the 25% for her height and her peanut head still hasn't caught up yet.

Addisyn is discovering her hands this week. She will lie and look at them and then reach out for whatever she wants to touch. Yesterday, she was amused by batting at my face. This week we had pulmonology, GI and speech. Not much changed pulm-wise. Soon we are going to start talking about when the trach comes out. It won't be within the next 6 months and will be a "wait and see." We should have a better idea sometime in early summer. Speech is working with her on her PMV (speaking valve). Today she wore it while she took her bottle and she finished it much quicker than normal. We were also given the recipe to mix baby oatmeal instead of simply thick. Hopefully it will take care of some of her belly troubles.

Look Ma, No O's!

That's right no O's! We ha ve been weaning Addisyn from her oxygen and it has been going pretty well. She went a good part of the day with no supplemental oxygen yesterday and the majority of the day today. She was satting 95 on room air. I have had to put her on a little while napping today, but we are off to a start.

Cootie Season is Coming to an End

First Pulmonologist appt & almost there

We finally made it to the pulmonologists office yesterday. We changed about everything. He had us downsize her trach back to a 3.5 to give her a leak, he DC'ed one dose of pumicourt, DC'ed er Xopenex and increased her Aldactone. We are now trying to wean her from her O2. He told us to keep her sats at 92 and we are hoping the aldactone will help with the weaning process. Yesterday was A's first trip to the zoo. Unfortunately, mom forgot the camera- and her bottle.