Vulnerable State

By Susie | Published: December 3, 2005

Today Amber is sleeping restfully due to the heavy doses of sedatives she’s being given. Is is still important for her to remain in this induced coma, (as we like to call it, sleeping) state and will be so for a couple more days. We patiently await the time for her to be extubated (remove the breathing tube) and for her to regain consciousness. She has had some slight coughing bouts which are caused by secretions although it’s nothing that the doctors are concerned about. In fact, it’s expected. Today the doctors will be doing a broncoscopy to look into her lungs and to check the condition of the sutures and to suction out any secretions When her sedation level lightens up, she starts to “wake up” and her reflex to cough is intact. She sometimes tries to sit up, but she is restricted. Her arms are restrained so that she won’t try to pull out her breathing tube. Amber is in a vulnerable state right now, yet she continues to have very good vital signs and shows wonderful progress. She is on some 20 different medications which are continually monitored and adjusted. Amber will need to remain in a contrtolled environment for several weeks, yet. She’s basically
in the bubble so that she isn’t exposed to germs or infection. When it comes time for her to go home, it’s expected that it will be 4-6 months for her recovery, when she will still have many restrictions, including contact with people, animals, plants, and some foods. Many people have expressed their love for Amber and their interest in keeping updated. Thank you for all the support, it really matters. I will continue to write these daily updates and report any new changes in Amber’s condition as she progresses. We love you. Susie (aka Aunt Susie) ps- please feel free to reply or ask questions

Posted in Transplant Journey | 5 Comments

Messages, Thoughts & Prayers

By Laurie | Published: December 2, 2005

Hello everyone! This is my first chance to visit this incredible forum that Scott had provided us all with to keep in touch. Thank you so much Scott!!! Also thanks to Mackenzie and my sister Susie for their efforts to keep you all abreast of what’s going on here at the hospital.

I want to thank you ALL for the wonderful messages, thoughts, prayers and energy given to our family and especially to Amber, She is doing amazingly well so far;;way ahead of the norm. We understand that she received a very healthy set of lungs luckily. That has been stressed, so I can’t help but think it may have been an unusual circumstance,,,lucky beyond out hopes maybe. This is such a precious gift, and we realize it is at the expense of someone’s profound loss.

We hope the family will know that their aultruism saved Amber’s live and find comfort in that. I cannot answer all the e-mails and phone calls right now, but please know that each one means so much and this is a snowball of positive energy here! There is still a very long road ahead, and it’s bound to be bumpy at times, But, hoepfully she’ll cruise right along, because Dr. Dorkin said today that Amber is a Ferrari now, not a Chevy. Much love to you all!!!! Laurie

Posted in Transplant Journey | Leave a comment

Vital Signs Are Holding Steady

By Susie | Published: December 2, 2005

Today Amber’s vital signs are holding steady and everyone is still impressed, relieved and amazed at how well she’s doing. She continues to try to wake up from the incredible amount of sedation she is under, but at this stage, she still needs to be kept asleep while the doctors slowly wean her off the ventilator, She is overbreathing the vent, in other words, her natural breathing reflexes are driving the process and her new lungs are trying to do the work they are meant to do. This is great, however, she still needs to have the support of the ventilator. The doctors wnat her to be awake but not anxious (before they can remove the breating tube and fully wake her up) which is a fine balance, given that she is hooked up to several machines, has lots of tubes and drains and monitors and a breathing tube down her throat. The instinct to bolt upright and try to “make things normal” is very strong and difficult to consciously overcome. Surrender is not a comfortable posture, especially to Amber who is such a fighter and strong individual. We know that this attribute will serve her well in her recovery process. So many people have shown their love and dedication to her. We have so much to be grateful for and are expecially feeling blessed for the gift of a healthy pair of lungs for Amber. We know that somewhere a family and circle of friends are grieving the loss of their love one. We can only hope that their grief will be assuaged from the knowledge that the lung donation is, in essence, the saving of another’s life.

Posted in Transplant Journey | Leave a comment

Continuing To Do Well

By Mackenzie | Published: December 1, 2005

Amber is continuing to do well. She has been taken off her blood pressure medicine and is doing fine without it so far. The doctors are hoping to gradually reduce her reliability on the ventilator over the next couple of days. The nurse told Laurie that she woke up again during the night, even though the doctors increased the medicine to keep her asleep. Her nurse was in the room with her when she woke up. She asked if Amber was in pain and Amber shook her head. The nurse told Amber that she had received two beautiful lungs and Amber nodded. The nurse also told her the date and Amber seemed aware of it. It’s comforting to look at her sleeping. She seems so far away, deep in dreamland. It was truly an amazing feeling to see her open her eyes and acknowledge us looking at her. She’s covered in blankets but you can see her toes and fingers wriggling to communicate with us. If there is one thing Amber is, it’s a fighter. Thank you so much for the caring phone calls and messages. Her family greatly appreciates them. Amber is loved by so many and I am a believer that she gains energy from knowing that. I’ll update later. Love, Mackenzie

Posted in Transplant Journey | 6 Comments

Amber Remains Stable

By Susie | Published: December 1, 2005

Amber remains stable and well cared for in the Surgical Intensive Unit (SICU) at MGH. Her room is a positive pressure room designed to keep out germs since her immune system is suppressed in order to prevent rejection of the new lungs. We are able to watch her sleep from behind glass doors and send her all the positive energy and love we are feeling from all of you. She always has 2 nurses on duty taking care of her and they are great! Her doctors are also wonderful and very attentitive. Amber wants to wake up and has opened her eyes, mover her legs and hands, and responded to the nurses questions. She is aware that she has a new set of lungs and has indicated she’s not in pain. It seems she’d like to get out there to finish her Christmas shopping, which was one of her anxities about having the surgery sooner than expected! However, when she’s awake her pulmonary-artery pressure goes up which is an indication that her body is not yer ready to breathe on her own, without the help of the ventilator, which she will be slowly weaned off of during these next fer days. We are all in anticipation of her transitioning to breathing on her own and being awake and are eager to hear how she feels with her new lungs. She will have 5 times more lung capacity , going from 20% to 100% capacity and she will not longer have CF in her lungs. For now, though, she just needs to sleep and let her body adjust to the incredible transformation she has just experienced.We know you are thinking of her and that means a lot. Thank you again for all the love- it is truly incredible. She will not be able to have any visitors for some time so the website is a great way for communication. We will continue to give daily updates and keep everyone informed about Amber’s healing. She will not be able to receive flowers or plants as her environment will continue to be highly monitored. Your positive thoughts and well wishes are much appreciated, Love to all.

Posted in Transplant Journey | Leave a comment

Email From Aunt Susie

By Susie | Published: November 30, 2005

Hi all, we wanted to let you know that Amber is doing very well. All the love and support is amazing and the energy is most definitely felt here. Last night 20 membes of the family and friends were at the hospital until after midnight waiting to hear the results of her transplant surgery. Today, some of us are camped in the intensive surgical waiting room and taking turns going in the observe her, behing a glass wall. She is hooked up to many machnies and monitors right now and her new lungs are working with the assistance of a ventilator. She will be woken up slowly from the induced coma, over a period of day a her body adjusts to her new lungs. Amber opened her eyes and moved her hands and legs a little and then went back to sleep. Her vital signs are good and stable and so far, things are going very well. Thanks you to everyone for your love and support for Amber. more later, Susie

Posted in Transplant Journey | Leave a comment

Amber Remains Heavily Sedated

By gonzales | Published: November 30, 2005

The latest is that Amber is doing very well. her primary doctor said that she is extremely optimistic. Amber remains heavily sedated (not conscious) and stable. She remains on the breathing machine.

My opinion is that this means the concern of post-operative bleeding or complications from the surgical technique are minimal if not eliminated all together. Since Amber’s doctor is optimistic, there must be evidence that her new lungs are functioning well.

I will continue to update the web site as I receive information.

Posted in Transplant Journey | Leave a comment

Amber’s Operation Finished

By Susie | Published: November 30, 2005

Amber’s operation finished around 12:15 AM. Her surgeon said she did very well and they are very peased with the function of the new lungs. She did have to go on cardiopulmonary byupass for a while during transplantation of the second lung.

Currently she is in the surgical intensive care unit and stable. She is receiving medication to support her blood pressure, although the surgeon stated that this is not unusual.

It is anticipated the she will remain on the ventilator for at least a couple of days. She will come off the ventialtor as soon as her new lungs function at an appropriate level to support oxygenation and ventilation. We will find out more about this over the next 24 to 48 hours.

The immediate critical issues are:
1. How will her new lungs function? Again, we will know more over the next 24 to 48 hours.
2. Any problems with bleeding. This is an issue with all operations but more so with Amber since this is a more complicated operation. This issue should be settled over the next 24 hours.
3. Rejection of the graft. As you know, Amber will be on medication to avoid rejection for the rest of ther life.

Laurie is very happy with the outcome. Amber’s surgeons were very encouraged. More updates will come as soon as they are received by me.

Posted in Transplant Journey | Leave a comment

First Transplant Surgery

By gonzales | Published: November 29, 2005

Laurie called me and gave me updated information. She will call back periodically to update me so I can update the forum.

Amber went into surgery around 1:00 PM today. The lungs arrived around 6:00 PM. She is doing very well and the nurse said the emvironment in the operating rom is very positive. The first lung has been successfully transplanted and they are working on the second lung.

For those of you who read my note on how the transplant is done, this means that Amber did well ventilating on her single native ling as they transplanted the first lung. She also has done well ventilating on the first transplanted ling as they transplanted the second lung. These are critical momnents when Amber may have had to go on cardiopulmonary bupass. To me, this means that two of the critical points have been passed successfully and is very reassuting that Amber will do well.

Posted in Transplant Journey | Leave a comment