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Posts tagged ‘trach’

The News I Did Not Want to Bear

September 14, 2013 7:43pm
No one wants to be the bearer of bad news and it is bad news I must carry. My silence is not “no news is good news” as I promised before. That promise only reveals how I had mistaken hope for a sense of control and a belief that I could know all the possible outcomes. I should have known better after the NICU, but oh, how easily we fall back into old patterns… No amount of updates could convey the roller coaster we have been on this week and honestly, it didn’t feel right to put others through it. I did not update this site because I did not want to bear this news, and yet it is not unbearable. We will forge ahead although with more pain to Margaret Grace.

MG did not breathe easy with the cap over her trach. She made it almost 24 hours, but she struggled a bit. Maybe not to you, but to those who know her or know all about airways, she did. She put on such a brave face. She knew she needed to pass. Even today she will tell you she didn’t mind the cap. But she was stridorous asleep; she pulled a bit in her ribcage, and she often caught a huge breathe to catch up when she was active. She was eeking by. Some people may have let her go on, but our ENT believes breathing like that would limit her activity over time or enlarge her heart. Those are not side effects we want.

When they took the cap off the trach and said she could go home, she was ecstatic. She got out of bed and walked around the complex airway unit to hug every RN, RT, PCA, social worker and said “goodbye, I am going home” Then blew kisses. She didn’t know how soon she will need to return and for her least favorite procedure. Her spirit is so resilient that it is infectious.

She will need another reconstructive surgery (LTP) with a graft of her rib cartilage. Yes, this means harvesting more which Margaret Grace will tell you is the most painful part. She still feels sore at the site of her last wound when she coughs.

This graft will go in the front of her neck where her trach is. Since she was trached young, the cartilage in her trachea did not develop but the area remained floppy and relied on the artificial tube to hold it up. This is a side effect of the trach not the original problem. She now needs a surgery to take the trach out. Because they take the tube out to repair this area, she will be intubated and sedated for several days in the hospital. This was the surgery we were trying to avoid all along.

In addition to this graft, they will also laser off scar tissue above her vocal cords at the arytenoid. This could effect her speech and swallowing, but we hope that in the hands of our skilled surgeon that it does not. Ultimately, we are thankful that the first surgery is behind us and she regained her speech and swallow. Two surgeries is painful and time-consuming and not our preference, but we believe the first surgery could not have been done with the precision it was if we had tried to address all of her trouble spots at once. We had hoped that the collapse at her trach site and the scarring at the arytenoid were not going to hold her back, but they do and so we must address them.

Honestly, we thought there might be more options than to take another rib cartilage, so we are a bit surprised. We also had let ourselves put hope on a timeline and therefore are anxious to get the trach out and resume a normal life. This means we are making the surgery the first priority and trying to schedule it as soon as the surgeon can find a time. We hope you will support us in this decision and are grateful for all your prayers and help over the last 3.5 years. We are particularly grateful for Sally and Scott, who have given us a warm home and family in Cincinnati.

For now, we are glad to have a normal week as a family in Atlanta.
We do not need anything special but prayers and patience if we cannot talk about it.

“As to Be Expected”

Written April 17, 2013 1:24pm by Beth Waltemath
We can move forward slowly. Today’s scope showed swelling: “as to be expected,” but also the grafts still taking nicely. To me the whole area looked puffy and oozy like a jelly yeast donut, but our surgeon and his fellow are satisfied with the results and tell us to return in 4-6 weeks. We hope to plan it for the first of June.

Apparently the aspirating she is experiencing is disappointing but “not uncommon” and most likely will resolve in 6 weeks with the help of a feeding therapist and as the swelling goes down. “Persistent aspiration is rare” reassured the surgeon before our scope.

We also had them check her exhalation pressure when she uses the PMV (speaking valve) and were cleared to use a modified one (with 1/16 drill bit hole) to encourage better swallow and eating.

Overall, today brought good news. They will still only tell us what is happening one step and no further ahead. But considering the range of other possibilities we’ve heard from veteran trach parents: grafts dissolving, dislodging, airways swelling closed, stents needing replacement, new rib grafts, multiple balloon dilations etc, we feel this is the best realistic outcome to say we are swollen but on track and no further intervention needed for now.

My dad flies up tomorrow morning to help me drive Margaret to Nashville for the night and then back to Atlanta. I can’t wait to start Harry Potter, Book 2 with James!

Discharged after 1st Stage of LTP

We were discharged this afternoon, just in time to take home a happy bouquet and Dora balloon from our Sunday school teachers.

Honestly, it’s been really rough. Margaret isn’t doing as well as we’d like. She is choking on her saliva and aspirating everything she eats. Think the worst cold you ever had–unable to sleep or lie down without coughing. Think about salivating over your favorite foods and then everytime you open your mouth, what is in it goes down the wrong pipe!

After a chest X-ray that showed no aspiration pneumonia (yet), the hospital said there’s nothing they can do that we can’t do ourselves so we took Margaret home with an NG tube in her nose and a feeding pump so she can receive all her meds and nutrition that way.
She was on an NG tube for the first 1.5 years of her life. I struggled long and hard to get her to eat by mouth so it’s hard not to feel mad and sad about this setback. I’ve considered it my greatest accomplishment in life to teach her to eat (once I learned how truly difficult it was for a kid who wasn’t allowed to learn in the first 4 months when it is instinctual). Beware of tempting wanton gods with our pride!

Did we give her a wider airway but not a functional one? Only the future will ease the doubt that keeps us awake.

Time, practice, more practice, those are what is in the arsenal for our plan of care.

And so we step backwards and begin again.

David returns Saturday. James on Sunday. Margaret and I will be here next week for follow-ups. We won’t know till another scope on Wednesday how her airway is reacting to the grafts with the stent out and if we will need further dilation or to put the stent back in and stay in Cincinnati longer or return home.

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