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Posts tagged ‘surgery’

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.

Hope is too Busy to Wait

Hope is too busy to wait to be discovered

The past three days have been exhausting even with the help of friends and family and the fun surprises delivered. Thank you so much for bringing light to our days. Spring blossomed overnight here. On our walk to the playground there is a canopy of pink flowering pear tree I stroll Margaret under and it reminds me of all of you surrounding her in prayer, light, hope, good vibes, whatever it is you call what you do when you write “thinking of you.” Even the 20 something male clerk at the Whole Foods told us “I am not really a pray-ER but you are in my prayers.” The honesty of his statement disarmed and entertained me so I squelched the urge to question where exactly that put us “if in prayers never prayed?”

Margaret has shown signs of progress each day from energy level, to less pointing to her rib and complaining of pain, to more willingness to abide by her rigorous schedule for bolus feedings to taking yogurt or thick purees by mouth successfully with concentration. The latter helps yank me out of the part struggles with PO feeding and believe this recovery can actually be shorter and dare I say, complete, if there is such a thing.

Tomorrow we go back to the OR for a bronchoscopy to see if her airway have held the shape of the grafts without the stent to hold it open or if it has collapsed in, dissolved the stents away, or merely swollen shut. The reaction of her body to the grafts will determine our next step and possibly chart a course for recovery over the next 3 to 6 months.

Today a hospital mate of ours who had the same type of surgery (although all cases are different when it comes to airways and trachs) got great results today and sent me a photo of a good looking airway and grafts so I am feeling more confident going in tomorrow than before.

Someone recently told me they just had a feeling it would all work out that you can tell just by looking at Margaret and her spirit. While this is true, I am also aware that it is not just some glimpse of luminosity that determines our hope for the future, it is also the attention to the details of her care that get her back on track and allow her to heal. Some have the privilege of looking at a distance for hope among the forest, but a few of us can only look for it while tending to the trees.

The day of MGs surgery I learned a mom from my trach parents support group lost her daughter much like Margaret but two years younger with a twin brother. She turned blue without warning and no trach change, CPR or EMT could bring her back to consciousness. They donated her organs two days later. Hope for the future feels very different when experienced through the vigilance of the present.

Today, I saw a bright red cardinal in the wooded area beyond my room. It sat regally on a high branch of a very tall tree. In my state of sleeplessness, I envied its stillness. I worried if I opened the door, the sound would scare it away and that my approach would surely make it fly. I went outside anyway. It remained but watched me and I it, then a saw a flash of burnt orange in my periphery as a robin swooped down into the muddy creek bed between the trees and the bank where I stood. The robin moved frantically around looking for worms. It registered me but kept moving in my directions in search of food. My eyes darted back and forth between the two birds. My attention wanted to draw closer to the cardinal’s scarlet silhouette but pulled back to the robin’s bobbing breast. The cardinal flew off in search of solitude or a safer distance. The robin remained aware but undisturbed by me, not allowing distraction or fear to keep it from its task at hand.

Too often, when we talk about hope, we describe it like the cardinal in the tree, a streak of scarlet in stark contrast to a dreary landscape but that image never lets us come too close before disappearing from sight, looking for a higher perch or a quieter setting where it can sit undisturbed by human on-lookers. That hope flew off the moment (3 years ago) I realized a healthy child is not only an unattainable goal it is an illusion for human life than the label “medically fragile” we brought her home with.

I could not outlast the robin. I grew tired before I could watch her fly off. She was just too busy wading through the mud, searching for food, maybe for those who share her nest. Her orange breast now the brightest thing in the wooded area and also the busiest. When it comes to hope, I suppose I trust the robin’s perspective more than the aloof one the cardinal took today.

So tomorrow at 9am, don’t search for some quiet place or anesthetic mental state to send up a flare for us. Make yourself busy and useful and hope that one day MG (sedated for the 18th time) will be that too …very soon.

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