Sarah Murnaghan’s Road To Recovery

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(Sarah Murnaghan, with her mother.  Credit: CBS3)

(Sarah Murnaghan, with her mother. Credit: CBS3)

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PHILADELPHIA (CBS) – The 11-year-old Delaware County girl who underwent a double lung transplant on June 12th and a second one on June 15th is now home.

Sarah Murnaghan, of Newtown Square, Pa., underwent the double lung transplant surgeries at The Children’s Hospital of Philadelphia (See Related Story).

Her mother, Janet Murnaghan has been posting updates on Sarah’s recovery. Those updates will be posted below:

Tuesday, August 27, 2013:
CBS-3 has learned Sarah Murnaghan left The Children’s Hospital of Philadelphia, and has arrived at her Newtown Square home.

Monday, 8/26 – 3:13pm:
WE ARE GOING HOME TOMORROW!!!!!!

Monday, 8/26 – update from the family:
The family tells CBS-3 they expect Sarah to go home this week, as early as Tuesday. They tell us she is walking short distances with a walker. She no longer requires oxygen via vent, the first time in 2.5 years, but is still trached. Her recovery is now focused on building muscle strength in her legs, arms, core, and muscles around her lungs, so she can begin to breathe properly without the trach. Because she was immobile for so long, waiting for lungs, her physical strength deteriorated significantly. Sarah’s new lungs are showing no sign of rejection. Her x-rays are the best of her life. Sarah beat the pneumonia she caught from being intubated; this was not the same pneumonia that was cut out of her new lungs before transplant.

Saturday, 8/24 – afternoon:
After two-and-a-half years on oxygen Sarah is officially OFF oxygen!!!!!!!

Saturday, 8/24 – morning:
Things are going well here. Sarah is working all day at physical rehab, its exhausting but we are making great progress.

Friday, 8/16:
12:20pm- Sarah is still in pain but pushing through it. She did her PT and is sitting up in a chair.

Thursday, 8/15

4:23pm:
They took lung biopsies during surgery yesterday..NO REJECTION!!! WOOOOHOOOO!!! Thank GOD!!!!

Around 3pm:
Sarah is having a hard day, she is in some pain.


Wednesday, 8/14

Around 9pm:
Sarah’s receiving great care. She’s mostly had a sleepy day. I am so thankful for all of the support. It finally feels like we are in the home stretch of our hospital stay. Praise God!

Around 2:35pm:
Sarah is all settled in the PICU.

Around 1pm: She is done! It went great! The surgeon was able to do it laparoscopically. We are expecting to spend the next day or two back in the PICU for the initial recovery.

AFTERNOON: They are closing her now. I have no other details yet. Hoping they were able to do it laparoscopically as planned.

AFTERNOON: Thinking of all my baby has been through surgically since June 12th:

1st transplant
ECMO
2nd transplant (returned chest open)…
closing her chest
diaphragm plication
tracheostomy
And now fundoplication.

God has given her the the strength, praying our next stop (after rehab) is home.

Around 9am: She is in the OR.

Tuesday, 8/12:
Scheduling bumped our surgery to Wednesday morning.

Tuesday, 8/12:
Sarah has a history of mild acid reflux, very common in CF. Since before transplant our team has told us that post transplant Sarah would need a surgery called a fundoplication. That surgery is tomorrow.

We are anxious (Mom and Sarah especially) to have her go back to surgery, but thankful she is strong enough to do so. Please keep Sarah in your prayers especially tomorrow.

Sunday, 8/11:
Sarah walked 3x further today than yesterday. She just keeps improving, and we are overjoyed! Just one week ago she was learning to talk with her trach now she can talk anytime.

Wednesday, 8/7:
Highlights of my day: holding Finn, Sean and Ella on my lap all at once; watching Sarah and Robby, her cousin/BFF, talking in her hospital bed about how he desperately needs her to come home and help him with all he little kids who are driving him crazy; Sarah and Ella informing me that they are going to share a room when Sarah is home; and finally just having my whole family together again.

Wednesday, 8/7:
Sarah has a fabulous 11th birthday with her family! She is exhausted and off to sleep already, but I was so pleased she was really able to last a good long while energy wise. The CF Team, especially her life-long doctor, Dr. Panitch, and the Transplant team made a big deal of the day. She felt really special! Child life at CHOP made it all possible, I couldn’t have done it alone. I must say having my whole family together again made me more impatient then ever for our HOMECOMING. Thank you for all the birthday wishes. This extraordinary birthday would not have happened without everyone’s support. Thank you ALL of you who supported us over these last three months.

Wednesday, July 31, 2013:
Another “graduation” for Sarah tomorrow, she will move from the PICU to the Progressive Care Unit (PCU). This should be our last stop before home. Home is on the horizon but still several weeks away.

Monday, July 29, 2013:
Sarah just had the best x-ray of her life!!!!!!

Sunday, July 28, 2013 (afternoon):
Finished TPN today (IV food), all nutrition is going through her G/J-tube now. This is a big step, Sarah has been fed by IVs for the past five months.

Sunday, July 28, 2013 (morning):
Sleeping with Sarah in my arms last night, I could hardly sleep, overwhelmed by the miracle of her life and breath. Everyday I am so thankful to the two hero’s who gave Sarah the selfless gift of life. Praising God!

Saturday, July 27, 2013:
We continue to push getting out of bed and strengthening Sarah’s muscles. You’ll notice the fullness of her face, those extra kissable cheeks are the result of two things; 1. High dose steroids, and 2. The pressure of the trach ties. It’s just an added bonus that there’s more of her to kiss!

Thursday, July 25, 2013:
“We are getting little bits of Sarah’s voice here and there as she tolerates the cuff on her trachea being deflated.”

Wednesday, July 24, 2013:
Sarah is in Rehab mode, getting out of bed multiple times day, practicing going from standing to sitting.

Monday, July 22, 2013:
We are back in the PICU. Can you believe we are in the same EXACT room we had pre-transplant? Beautiful, nice room….hard memories. We are moving forward this time!

(She’s been moved out of cardiac ICU to just their Pediatric ICU)

Sunday, July 21, 2013:
Sarah stood today in physical therapy, after months in bed and lots of time paralyzed and sedated this was a huge accomplishment. Here she is sitting up in bed all by herself.

Friday, July 19, 2013 (afternoon):
Sarah’s feeling such pride in her accomplishments this afternoon…(1) She had her first Trach change, (2) She had her last chest tube removed and did a dance in bed over that, (3) they moved her back to a traditional ventilator!!!

Our heads are spinning, definitely not slow and steady today, just improving left and right. I am so proud of her! We are told a move out of Cardiac Intensive Care Unit is in our near future, now that will be a victory. Stay tuned… :)

Friday, July 19, 2013:
Sarah’s G-tube switching to a J/G went well. Tomorrow [today] is her first Trach tube change and she us very scared, please pray for her little heart as she endures so much.

As I watched Sarah sleeping tonight, after her latest procedure, I couldn’t suppress the tears of joy—what a difference a month makes! Praising God!!!!

Thursday, July 18, 2013:
Well overall we are so hopeful and grateful. Sarah’s slow and steady progress continues. Tomorrow they will convert her G-tube to a J/G- tube to aid in getting more nutrition into her. (G-tubes send food directly to the stomach, J/G allow you to go directly to the intestines if your stomach is not digesting well–this is temporary). It’s a no big deal procedure as they use her existing G-tube–but she will be sedated. Her stomach has been giving us a hard time, you can tell it keeps her pretty uncomfortable :(, but in the grand scheme not a big problem to have.

We are still maintaining her at 40% oxygen, which is great, just a few days ago we were stuck on 60%. Tomorrow we will try switching vent types, ever since the pneumonia she has needed a different type of vent, this will be a huge win if successful.

We continue to be so thankful to God for blessing us with this amazing little girl and three other awesome kids, our families who will do ANYTHING to help us at any hour, and all of you. Truly you all have cheered us on, and somedays have been depressing and hard, yet we always knew we could do it that we were not alone. Our love to each of you. We are forever grateful.

Wednesday, July 17, 2013:
The goal come Friday, when the trachea has healed, is to start pushing Sarah hard physically. I am excited for this next step because I think it will push our lungs to make that next step in improvement. Sarah is so determined that I know she can do it. She has one goal in her mind right now, going home.

Tuesday, July 16, 2013:
Oxygen needs weened back down, praying they stay down.

Monday, July 15, 2013:
Sarah overall is good. Her progress is two steps forward, one step back. This is apparently normal for transplant but totally unnerving for Mom.

Friday, July 12, 2013:
Sarah is out of surgery and resting comfortably. I am relieved that it is over, and it is a joy to see my babies face again without tape and tubes!

Thursday, July 11, 2013 – afternoon:
Sarah will go into surgery first thing tomorrow morning for a tracheostomy. (A tracheostomy is an opening surgically created through the neck into the trachea (windpipe) to allow direct access to the lungs.)

The trach tube will replace the breathing tube that currently goes down her nose and throat and will be temporary.

Sarah needs a trach because she has been on long term ventilator support and the wean off the support is slow as a result of how sick she was going into transplant, as well as, the setbacks we’ve had since transplant (pneumonia in one of her lungs).

The tracheostomy tube is a better long-term option: 1. It’s more comfortable than the endotracheal tube in the mouth or nose. 2. It will allow Sarah to speak, eat and drink while getting ventilator support. 3. She can get out of bed easier and do more aggressive physical rehab. 4. We, eventually, could go home on ventilator support with a more stable airway like a Trachea.

I am disappointed that she needs a trach, for me it is another hardship Sarah must endure, and I wish things would just sail smoothly along. That being said, I know it is the right decision at this point, I have no doubt in my mind. We’ve prayed about it a lot and debated the pros and cons. So while I am at peace with the decision I am simultaneously heartbroken.

God Bless you all for the love and support.

Thursday, July 11, 2013:
This public struggle to save Sarah has taught me how many beautiful, amazing people there are in the world! I am so thankful for all of YOU!

Wednesday, July 10, 2013 – night:
Tears, tears, and more tears tonight. It’s so hard, five months in the hospital. The road is so long, slow and has so many ups and downs. Sarah and I are terribly homesick. We miss being a family. Tomorrow’s another day, pray for our emotional strength. Please always know we are so grateful for the gifts she’s received from her two hero’s. It’s just somedays you want the suffering to hurry up and be over and the living to start.

Wednesday, July 10, 2013:
Sarah is making small steps in a positive direction. Over the weekend she required 100% O2, today we are down to 50% O2! Her X-rays show more air in the affected lung. Her vent support is still very high. Overall we are cautiously optimistic.

Tuesday, July 9, 2013 – afternoon:
Bronchoscope results indicate the pneumonia is not from aspiration but from a pseudomonas infection. We are playing with antibiotics to provide greater coverage. This will be a slow recovery but we are on the path.

Tuesday, July 9, 2013:
Sarah is about the same this morning, no worse but no better.

Monday, July 8, 2013:
Sarah has developed pneumonia in her right lung. They believe its caused by aspirations from her belly. Yesterday was tough. Today she is more stable, but this is definitely a large set back. Thank you for the love and prayers. We have an amazing team of doctors who go above and beyond but also walk this road with us in such a kind and compassionate way. Thankful to God for this day!

Thursday, July 4, 2013:
Sarah’s first lung biopsy, taken during surgery, shows NO REJECTION!

Wednesday, July 3, 2013:
Sarah had a nice, stable night. Her pain is increased, but they seem to be able to manage it. Overall she seems relieved the surgery is over, sitting waiting yesterday made her very anxious.

Tuesday, July 2, 2013:
We are scheduled for 10am in the OR. *** Her mom previously said that Sarah will be undergoing Diaphragm Plication Surgery to pull the diaphragm down, allowing her lungs to expand better. Later this week, they hope to try and remove Sarah’s breathing tube again ***

Following the surgery, Janet said:

Sarah is still mostly sedated, waking periodically in pain, so aggressive pain management is underway. She has one chest tube back in place.

Tomorrow we will start slowly weening vent settings. By next week I expect we will know whether her other muscles are strong enough to do the job of breathing after extubation or if she needs a temporary tracheostomy while we recondition her muscles. Praying she can do this without a trach.

So proud of her strength and determination. This is her fourth surgery since June 12 (1st tx, ECMO, 2nd tx and diaphragm plication).

Sarah and her two donors are my heros!

Friday, June 28, 2013:
The Murnaghan family is speaking out for the first time since 10-year-old Sarah underwent lung transplant surgery. They released a statement on Sarah’s journey over the last two weeks. Read more here.

Thursday, June 27, 2013:
My sunshine sat on the edge of the bed today doing leg and arm exercises!

Thursday, June 27, 2013:
Sarah got a second chest tube out today, only two more to remove. Progress!

Wednesday, June 26, 2013:
This sleeping beauty is my miracle. I thank God for her everyday!

As people commented on this post, Janet said:

“She has come a long way, despite today’s set back, this picture I took tonight was a good reminder of this fact.”

“This is her just now sleeping back on the vent.”

“Her lungs are working beautifully, as you can see with her coloring. The issue is her Diaphragm — muscle weakness from the long hard road pre-tx. Thats why extubation was a fail. We need more time to strengthen her.”

“Sarah is on huge steroid doses.”

“Her donor gave her beautiful lungs! Our hero. And her body is accepting them! We just were so sick going in that climbing out is hard. We will get there, especially with all this love and support.”

“Oh yes she is very alert for good parts of the day and knows she got her lungs. She is a kid who likes to know all the details.”

“I have been thrilled the past couple of days because the swelling has gone way down and she looks like Sarah again!”

Wednesday, June 26, 2013:
It’s been an excruciating day. We extubated Sarah and her body could not handle the reduced support. It was impossibly painful watching her struggle to breath and panic. She was sedated and re-intubated. I have cried quite a bit, I just wish everything wasn’t so ridiculously hard for her. Her doctors assure us that this does not change her long-term out come but just means she needs more time to regain her strength. Thankful for the amazing doctors and nurses at CHOP, who always keep my sweet Sarah safe! One day Sarah will take that first glorious breath and we will celebrate!

Tuesday, June 25, 2013:
Tougher 24 hours. We are weening sedation and some pain meds to make Sarah more awake in preparation for extubation, but she is in a lot more pain. Its a BIG thing for such a little girl, but we know she can do it! Praising God for all the progress.

Monday, June 24, 2013:
Fevers went away and have not returned :). Sarah had one of her four chest tubes removed today! Continuing to ween vent settings in in preparation for extubation this week.

Wednesday, June 19, 2013:
Great update: Sarah was able to move from an oscillator (type of vent) to a traditional ventilator. This is a big step towards being able to wake her. Few more hurtles to make but my heart is so full of joy and thanks!
Monday, June 17, 2013:
I definitely have the best FB friends. All the prayers and love are so encouraging. Sarah made a tiny step in the right direction, being able to back off some of her vent settings in terms of her O2 requirements. Sarah’s x-rays improved a little today too. She is still fully sedated and critical.

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