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Posts from the ‘Medical Updates’ Category

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.

What’s an Itch Anyway

Written August 1, 2013 8:03pm by Beth Waltemath
We have a date to return to the ENT surgery team. September 12 to 16. We will scope on Thursday and admit her for three nights of capping.

We wish we could prepare, train for this like a runner increases his cardiovascular gradually, but that’s not how this team does it. Run the marathon first in this case.

We have been in a holding pattern this summer when we expected to be Free to take family vacations and trach free travels. Our nurses had dreams of moving on too. One is due with her first child soon. Disappointment has a way of testing the nerves.

Since our failed test, Margaret has showed new anxiety over doctors visits and definitely the little plastic cap. She found it one day in a box and said ” mommy I need to return this to the hospital. I don’t like it.” This week she cried I. My arms while feverish in the pediatrician’s office begging to go home even though the doctor barely touched her.”

We are itching to move on! And now she has an all over skin rash . She scratches up against everything like a cat. Oatmeal baths, calamine, Benadryl, cool layer pajamas. No relief. “Mommy, mommy why? Why?” Each day the bumps just multiply. What is that sensation that torments us under the skin, in our
heads? What causes it? Where is its source? If waiting it out is the only treatment, how long can you bear it?

Two Steps Forward

Two Steps Forward

Written June 5, 2013 2:15pm by Beth Waltemath
We are back at the hospital. We came for a follow up Bronchoscopy. It was supposed to be a quick trip so we tried flying for the first time. It was not as easy as we hoped with her equipment and the plane had mechanical problems which led the pilot to come to a lurching stop on the runway right when we’d excellerated to the point of lift off. Enough of a scare to make anyone lose their breath in fear!

More surprises were in store but now they are potentially good. We have been admitted to the complex airway unit again. They want to do a capping trial and sleep study. This is early for this step forward but they felt like she had 3 of the 4 signs that she is ready to try this. We are still several steps from decannulation but this , if it works, will be a good advancement.

It does delay my return till the weekend or longer.

Thank you for your prayers.

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