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.

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.

How Preemie Moms are Chosen

How Preemie Moms Are Chosen (Adapted from Erma Bombeck)

Did you ever wonder how the mothers of premature babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles. "Give her a preemie." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel." "But does she have the patience?" asks the angel. "I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy." "But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness." The angel gasps, "Selfishness?! Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." "And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice."

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.

Off Cpap!

I got to the hospital yesterday and Miss Addisyn was off the Cpap. When I walked in the room, I noticed that the room was much quieter than it was the day before, which is the tell-tale sign for Cpap for me. I looked at her Cpap machine and it was turned off, then I looked at the O2 bottle and it was bottling. She was on 1 lt of flow and 34% when I walked in which is wonderful for her. I also walked into another surprise. She was wearing her Christmas shirt that says "Is it too late to be good". I bought that for her because they always say she is being naughty. I held her forever yesterday. She just seemed so content that I couldn't put her down. I think I finally left around 8 pm last night and I held her the whole time. A conversation came up the other day while I was in the hospital with her. It was either the LC or Chaplain stating how hard it must be. I have to admit that it is hard, but when I look at her, I think of my gandmother's babies that never made it and all of the other babies who never even got this chance. She may be early, she may be living in the hospital, but she made it here and is going to be Ok. She shouldn't have made it this far, but she did. So many people are not as lucky as we are.

Back on Cpap

Well, Addisyn put up a good fight for the past 2 weeks with her cannula trying to be a big girl, but today she told everyone she needed a little extra help. They did a chest X-ray and it was very cloudy. Her lung sacs were closing and she was starting to shut down. She was desating quite a bit last night to the point where she needed to be bagged. I was pretty bummed for a few minutes, but she seemed so comfortable on the CPAP. Her breathing wasn't labored, her little nose was getting a break from the high flow and she was finally satting high on low oxygen. Her sats were in the high to mid 90's and her oxygen was at 25% when I left. On the cannula, it was usually around 40% and she would desat quickly. The last time she had a setback, she went back to the vent for a few days, but after they put her back on CPAP, she was smooth sailing and went to the cannula after 2 days. I am hoping this extra help will help her progress faster when she graduates back to the cannula. I am also hoping that the CPAP doesn't interfere with her feeds like it did last time. She was also given meds for reflux (reglan). When the dr said he was going to give her Reglan, it sounded like rideline. He said the rideline is for him.