October 30 was the day the Boston Red Sox won the World Series less than 1 mile from Children's Hospital where Hayleigh has been since October 5. It was the first time in 95 years the Red Sox have clinched the championship in Boston. But the cheers I heard outside on the street that night to me were cheers for our girl.
Championship Day was the day she moved OUT of the ICU and into a 'regular' hospital room!
Packing up before the move....notice the lack of machines all around the bed....that is why she was kicked out of the ICU (plus the fact that she was making regular rounds with her walker all around the floor). My black roller bag is in the back of the room as this had been my home as well since the night of October 12, the day Isaiah was born.
The 'wow that is an odd stat' of the week: The last time Hayleigh was on ECMO we lived in Dallas. She came home within 1 week of the Dallas Stars winning their only Stanley Cup Championship. What are the odds of her going on ECMO and another hometown team winning another Championship probably within a week of her going home? I DO NOT want to test this out anymore!
Two things remain before she can come home. First, she needs to be weaned completely off 1 of the 2 remaining narcotics she is on. Doing this incorrectly can result in a terrible withdrawal which would elongate her stay in the hospital. Without question, this is the primary reason she is still in the hospital. The other narcotic we will wean her slowly off once she is home. Second, she needs to continue building her strength and regaining her balance.
Amazingly, she weighed 43kg when she walked into the Maine hospital (95 pounds) and she now only weighs 38kg (84 pounds). We need to put some meat back on our girl! The 950 calorie shakes she is now getting every day are probably helping that effort!
Bottom line....she is much closer to being home. Championship Day will be remembered in the Scott house for more than just the Red Sox victory! We thank the Lord for this day.
The Other Side of the Day We Almost Lost Hayleigh
I had two interesting conversations in the past couple of weeks. Dr. Wood was her primary doctor in Maine on that Friday and Saturday (October 4 and 5). He happened to be in Boston and visited her just a few hours before they pulled the tube out of her mouth and took her off the ventilator.
There are a lot of people who saved Hayleigh's life. That list starts with her teachers for recognizing the danger in what was going on that Thursday night in the Middle of Nowhere, Maine, to the two helicopter teams, many nurses, several surgeons, and many doctors. But Dr Wood would most certainly play the most prominent role early on.
I asked him about some of the things that happened that day. I remember on Saturday October 5 when he told us she had to turn around or she was going to die, he had a phone lodged between his shoulder and his ear over the next hour even when he was working on Hayleigh.
He told me the primary reason that happened was he was trying to coordinate the helicopter flight to get her to Boston. He was trying to cut through the red tape....and what finally happened is the doctor in Boston affectionately known as 'Skooch' (due to his long Italian name) told the Boston team to send the helicopter and worry about the paperwork later. Thank goodness for these two men cutting through the bureaucracy to get the helicopter to Bangor, Maine.
A few nights later Nurse Heather aka 'Nurse Boston' worked with Hayleigh. She was the nurse on duty the first night Hayleigh came into the ICU in Boston. I call her Nurse Boston because there are 3 nurses named Heather who took care of Hayleigh. This Heather is Boston through and through from her accent to her tough exterior, soft heart, hilarious laugh. She really knows her stuff after 15 years on this job, and she really loved our girl....
Anyway, as time passed and things started to improve with Hayleigh there was a part of me that started to wonder if that Saturday in Maine really was that bad. Was I just assuming the worst? Was she really that close to death? Or was I just hearing something the doctor really didn't say?
Nurse Boston told me about the preparations that went on as Hayleigh was in flight as well as the communication between the doctors in Boston and the doctors in Maine (what they were saying etc). She told me they had the ECMO ready and the teams prepared because everyone knew she was going on ECMO. She said "when you have oxygen concentration readings below 50%, you will die. The heroic measures they took to get her concentrations above that level cannot be done for more than a few hours before they start working against the patient. If we didn't have the ECMO here or if 5 people had already been on the ECMO machines we have then the call to Maine would have been 'I'm sorry, there is nothing we can do' and she would have died that day."
It was chilling hearing her say that. I wasn't imagining anything or overdramatizing. We were one helicopter ride away from losing our girl, one ECMO machine away. Sobering. I told my mom that story and she started crying again.
What an amazing blessing that next week she will probably be walking into our home again for the beginning of the rest of her life.
Nurse Boston also said we better not mess up because God definitely has this one (ie Hayleigh) high on his list. Hayleigh was only on ECMO for 5 1/2 days; Nurse Boston expected her to be on it 2 to 3 weeks so she jokingly said to me she felt like getting on her knees when she came in the room after 7 days and saw her off the ECMO. (Boston accent) "God is definitely in this room!"
Our Family Honors All Those Who Worked With Hayleigh
(sorry if we missed anyone below)...
Her Doctors Kate, Christa, Kate
There was a third Doctor Kate who rotated off the floor so she had 3 Doctor Kates and 3 Nurse Heathers. There were many other doctors and surgeons as well but I don't have photos of them. We thank each of you for your dedication to your profession and the care you gave our daughter.
A couple of things I learned during our time in the ICU. First, you DO NOT want to be the first case talked about on rounds each day. That tends to be the sickest kid and the team tends to be huge. I remember one morning early in the process looking at a team of 14 people listening to Hayleigh's morning update (12 women, 2 men by the way). The last day in the ICU, the team was 3 or 4 people and the timing was after 11am.
Second, these doctors make huge sacrifices in their personal lives to do what they do. But thank God for them as they are so smart and so caring. I sensed by the last day that they really were going to miss our Hayleigh....and I sensed as well that it is patients like Hayleigh who give them the professional satisfaction to continue doing what they do and making the sacrifices they make. May God bless each of these women and the others doctors who worked on Hayleigh's behalf.
The Nurses!
We had AWESOME nurses. If you are going to have a sick kid, this is the place to be!
The other two Nurse Heathers (with Hayleigh from the first few days in October until the last few days of October)...
Nurse Tara...
Nurse Christine (the one to the right during 'Operation Change Bed) Christine has a heart for disabled kids and was commenting on how she wish it wasn't so expensive to fly to a camp she has been to before to work with disabled kids. One of our pastors, Tim Lafferty, has disabled sons and I have heard many times about the great work Joni & Friends does right here in New England. They have been connected via email. So, perhaps she will now be able to serve without having to pay a lot of money to fly somewhere else.
Nurse Christine is also the one with Hayleigh on her first walk out into the hall in this post (opens in separate window)
Nurse Colleen...
Nurses Nicole and Anna...
Nurse Brienne who helped her get out of bed for the first time...
We honor these women who worked with Hayleigh to bring her from near death to moving out of the ICU. We thank God for these women and pray blessings upon their lives.
My next post will be the day she comes home! Rachel and I have switched places as of Halloween night because Isaiah can be in the regular rooms in the hospital but was not allowed in the ICU. So, Rachel is at the hospital with Hayleigh until she is released, and I will be CEO of the home front. It was a good switch for a number of reasons. But we are all looking forward to being together again.
God bless,
Andrew
Other pictures / happenings
Family visit last weekend...
Hayleigh holding Isaiah
AJ loving the big ball 'thing' in the lobby of Children's Hospital...
Pumpkin carving contest in the cafeteria (my two favorites)...
Visitors...Teri Garza and her sister Donna
The WONDERFUL Delacy sisters....they were at the ICU front desk when Hayleigh was walking around the ICU floor. She practically started jogging when she saw them! They brought her a boatload of candy for Halloween. As kind and giving as they come...
Halloween night
We got these masks in Venice during our trip this year....
Our kids favorite part of the night....THE TRADES (I'll trade you 2 snickers for 1 butterfinger and some taffy)
This sly young high school girl charmed the 6th grade boys who had an instant crush on her. They just GAVE her candy 'because she didn't have much' LOL!
And finally, Rachel's favorite picture of Isaiah (so far)....
Recent posts:
SHE Walks! (opens in separate window)
http://www.tsfga.blogspot.com/2013/10/hayleigh-she-walks.html
Championship Day was the day she moved OUT of the ICU and into a 'regular' hospital room!
Packing up before the move....notice the lack of machines all around the bed....that is why she was kicked out of the ICU (plus the fact that she was making regular rounds with her walker all around the floor). My black roller bag is in the back of the room as this had been my home as well since the night of October 12, the day Isaiah was born.
Two things remain before she can come home. First, she needs to be weaned completely off 1 of the 2 remaining narcotics she is on. Doing this incorrectly can result in a terrible withdrawal which would elongate her stay in the hospital. Without question, this is the primary reason she is still in the hospital. The other narcotic we will wean her slowly off once she is home. Second, she needs to continue building her strength and regaining her balance.
Amazingly, she weighed 43kg when she walked into the Maine hospital (95 pounds) and she now only weighs 38kg (84 pounds). We need to put some meat back on our girl! The 950 calorie shakes she is now getting every day are probably helping that effort!
Bottom line....she is much closer to being home. Championship Day will be remembered in the Scott house for more than just the Red Sox victory! We thank the Lord for this day.
The Other Side of the Day We Almost Lost Hayleigh
I had two interesting conversations in the past couple of weeks. Dr. Wood was her primary doctor in Maine on that Friday and Saturday (October 4 and 5). He happened to be in Boston and visited her just a few hours before they pulled the tube out of her mouth and took her off the ventilator.
There are a lot of people who saved Hayleigh's life. That list starts with her teachers for recognizing the danger in what was going on that Thursday night in the Middle of Nowhere, Maine, to the two helicopter teams, many nurses, several surgeons, and many doctors. But Dr Wood would most certainly play the most prominent role early on.
I asked him about some of the things that happened that day. I remember on Saturday October 5 when he told us she had to turn around or she was going to die, he had a phone lodged between his shoulder and his ear over the next hour even when he was working on Hayleigh.
He told me the primary reason that happened was he was trying to coordinate the helicopter flight to get her to Boston. He was trying to cut through the red tape....and what finally happened is the doctor in Boston affectionately known as 'Skooch' (due to his long Italian name) told the Boston team to send the helicopter and worry about the paperwork later. Thank goodness for these two men cutting through the bureaucracy to get the helicopter to Bangor, Maine.
A few nights later Nurse Heather aka 'Nurse Boston' worked with Hayleigh. She was the nurse on duty the first night Hayleigh came into the ICU in Boston. I call her Nurse Boston because there are 3 nurses named Heather who took care of Hayleigh. This Heather is Boston through and through from her accent to her tough exterior, soft heart, hilarious laugh. She really knows her stuff after 15 years on this job, and she really loved our girl....
 |
| Nurse Heather aka 'Nurse Boston' with Hayleigh |
Nurse Boston told me about the preparations that went on as Hayleigh was in flight as well as the communication between the doctors in Boston and the doctors in Maine (what they were saying etc). She told me they had the ECMO ready and the teams prepared because everyone knew she was going on ECMO. She said "when you have oxygen concentration readings below 50%, you will die. The heroic measures they took to get her concentrations above that level cannot be done for more than a few hours before they start working against the patient. If we didn't have the ECMO here or if 5 people had already been on the ECMO machines we have then the call to Maine would have been 'I'm sorry, there is nothing we can do' and she would have died that day."
It was chilling hearing her say that. I wasn't imagining anything or overdramatizing. We were one helicopter ride away from losing our girl, one ECMO machine away. Sobering. I told my mom that story and she started crying again.
What an amazing blessing that next week she will probably be walking into our home again for the beginning of the rest of her life.
Nurse Boston also said we better not mess up because God definitely has this one (ie Hayleigh) high on his list. Hayleigh was only on ECMO for 5 1/2 days; Nurse Boston expected her to be on it 2 to 3 weeks so she jokingly said to me she felt like getting on her knees when she came in the room after 7 days and saw her off the ECMO. (Boston accent) "God is definitely in this room!"
Our Family Honors All Those Who Worked With Hayleigh
(sorry if we missed anyone below)...
Her Doctors Kate, Christa, Kate
There was a third Doctor Kate who rotated off the floor so she had 3 Doctor Kates and 3 Nurse Heathers. There were many other doctors and surgeons as well but I don't have photos of them. We thank each of you for your dedication to your profession and the care you gave our daughter.
A couple of things I learned during our time in the ICU. First, you DO NOT want to be the first case talked about on rounds each day. That tends to be the sickest kid and the team tends to be huge. I remember one morning early in the process looking at a team of 14 people listening to Hayleigh's morning update (12 women, 2 men by the way). The last day in the ICU, the team was 3 or 4 people and the timing was after 11am.
Second, these doctors make huge sacrifices in their personal lives to do what they do. But thank God for them as they are so smart and so caring. I sensed by the last day that they really were going to miss our Hayleigh....and I sensed as well that it is patients like Hayleigh who give them the professional satisfaction to continue doing what they do and making the sacrifices they make. May God bless each of these women and the others doctors who worked on Hayleigh's behalf.
The Nurses!
We had AWESOME nurses. If you are going to have a sick kid, this is the place to be!
The other two Nurse Heathers (with Hayleigh from the first few days in October until the last few days of October)...
Nurse Tara...
Nurse Christine (the one to the right during 'Operation Change Bed) Christine has a heart for disabled kids and was commenting on how she wish it wasn't so expensive to fly to a camp she has been to before to work with disabled kids. One of our pastors, Tim Lafferty, has disabled sons and I have heard many times about the great work Joni & Friends does right here in New England. They have been connected via email. So, perhaps she will now be able to serve without having to pay a lot of money to fly somewhere else.
Nurse Christine is also the one with Hayleigh on her first walk out into the hall in this post (opens in separate window)
Nurse Colleen...
Nurse Brienne who helped her get out of bed for the first time...
Nurse Kelly who said she had all the fun days as she was there the last 2 days and is the one in the first picture taking her out of the ICU....
Liza, her physical therapist (who was motivational and awesome as Hayleigh has an interest in potentially being a physical therapist for kids....)
We honor these women who worked with Hayleigh to bring her from near death to moving out of the ICU. We thank God for these women and pray blessings upon their lives.
My next post will be the day she comes home! Rachel and I have switched places as of Halloween night because Isaiah can be in the regular rooms in the hospital but was not allowed in the ICU. So, Rachel is at the hospital with Hayleigh until she is released, and I will be CEO of the home front. It was a good switch for a number of reasons. But we are all looking forward to being together again.
God bless,
Andrew
Other pictures / happenings
Family visit last weekend...
Hayleigh holding Isaiah
AJ loving the big ball 'thing' in the lobby of Children's Hospital...
Sisters...
Visitors...Teri Garza and her sister Donna
The WONDERFUL Delacy sisters....they were at the ICU front desk when Hayleigh was walking around the ICU floor. She practically started jogging when she saw them! They brought her a boatload of candy for Halloween. As kind and giving as they come...
Halloween night
We got these masks in Venice during our trip this year....
This sly young high school girl charmed the 6th grade boys who had an instant crush on her. They just GAVE her candy 'because she didn't have much' LOL!
And finally, Rachel's favorite picture of Isaiah (so far)....
Recent posts:
SHE Walks! (opens in separate window)
http://www.tsfga.blogspot.com/2013/10/hayleigh-she-walks.html
Shoes for Kenya Kids:
Bone Marrow Registry:
wonderful wonderful wonderful news!!!
ReplyDeleteShe talks! She walks! She runs (well, almost)! What next! And what wonderful news! Wish I could be there and give her - and all of you - a hug! Love and continued prayers from me and my church friends here in Birmingham.
ReplyDeleteNetagene here. This is mostly a test for a friend who's been trying to comment here, so I'm doing this and going to use the anonymous profile so that I can walk her through it. Barbara Gurtov, my age, from NYC, is a long time member of the HLAA and was my roommate for the 2 conventions we both got to attend. She bought some tube twists from Hayleigh. She sends her love but if you eventually get a post from her, you can delete this! LOL! Love y'all!
ReplyDeleteAndrew, this is such wonderful news! Thank you, Lord!!! And thank you to the 1,000's of people around the world that sent good thoughts, energy, prayers, and love to Hayleigh, Rachel, Baby Isaiah, and the Scott family. What an unbelievable month and an extraordinary outcome! Can't wait for the Coming Home post! Will continue to keep you, all, in my thoughts and prayers.
ReplyDeleteLove,
Linda McCoy
Wonderful, adorable pics! Keep improving Hayleigh!
ReplyDeleteHayleigh, maybe you might want to be including your own thoughts down as well -- perhaps on Facebook?
The Blog is awesome. We love your writings, photos, and hearing the ways God moved in Hayleigh's life and how many angels He put around her! Love it!!
ReplyDeleteWe think your family photos are great. Hugs to all the kiddos and for sure Daddy and Mommy deserve a night out alone!
Oh, and get the protein going for Hayleigh! She will need it.