Day 13 - Hoping for a better day

Chelsea has had a couple of rough days. The upper GI yesterday showed things moving very slowly. This is not abnormal, doctors says it is common in transplant patients; especially coupled with the amount of medications she has been on. Her gut has just not fully "woke up" yet.

But Chelsea is rocking it out with Physical Therapy - she has had 2 sessions; one yesterday and one today. Both have taken a ton out of her - she is still super weak but she sat up yesterday and actually stood for a minute today. So she is moving in the right direction. I can only imagine where she will be this time next week!

Chelsea also received a special present today from her big sis, Kelly. Kelly had Chelsea's favorite childhood blanket made into a special quilt. Chelsea loved it! Kelly is definitely special in every way - and I am so grateful to have such wonderful daughters.

Thanks to everyone for all the calls, emails and texts! We are missing everyone!

Day 12 - Test Day (Worse Than Finals)

Yesterday morning was really tough on Chelsea.  The entire morning was full of different tests and procedures that really took everything out of her.  She knows these things are necessary but there were so many back to back that she got tired of people constantly messing with her.  As usual, Chelsea handled everything like a champ.

Chelsea is still dealing with a lot of pain and discomfort.  The nurses have started pushing pillows under her back in order to lean her to one side or the other to help relieve the pressure.  This too is painful but once situated it does help make her more comfortable.  She has basically been in the same position since we arrived here 12 days ago.

We did have some concern yesterday when a test showed her liver function was not in the normal range.  Those results precipitated even more tests.  The doctors determined the elevated levels were due to a medication they had been giving her and made the necessary adjustments.  The entire team here in Pittsburgh has been wonderful and we really feel confident they are watching every little thing to help care for Chelsea.

We did see some signs of our girl coming out yesterday.  Chelsea sent Michael a text message and watched a movie on TV.  The text was quite a challenge and she had trouble holding onto the phone and navigating her shaky little hands on the keys but she really wanted to send a message herself.  Slowly but surely my Sunshine is breaking through the clouds!

Day 11

Great news- Chelsea moved to regular room late yesterday! She is progressing ahead of schedule. She is still dealing with pain and stiff muscles from being under the paralysis medicine. And she is still very shaky and a little confused but that is to be expected. She is doing just amazing so far and we are so proud of her! She has had 2 popsicles and is craving Brisk tea (her favorite drink); it may be awhile before she can have that.

Will post more later today as we can but thanks again for all the prayers! God has been so good to us. It is so powerful what prayer can do.

Day 10 - June 26

Hi Friends - Chelsea has really had a rough 36 hours coming off the paralytic and dealing with pain. It is so good having Chelsea awake and talking to us again; we missed her so much.  The doctors turned off the Paralytic late Friday afternoon.  It didn't take long for her to star moving and slowly waking up.  Due to the large amounts of medications she was on, it took until this morning for her to get most of it out of her system.

She is dealing with a lot of pain but being the trooper she is, Chelsea is doing amazing handling everything.  The doctors are still really impressed with her improvements.  It seems like she takes leaps and bounds every day.  This morning they said she could have her first request - A Cherry Popsicle.  If she keeps improving, she will likely be able to move to a regular room in the next day or two.

We told Chelsea about the blog this morning and she really liked the name.  We are almost through the interruption and can see the wonderful future ahead.  I can't wait until she feels like reading the blog and all the wonderful comments family and friends have posted.

We will try to keep blogging as we can the next few days but our primary focus is on Chelsea's care so posts may not be as frequent.  Keep following and posting comments about Chelsea's amazing journey.  I know she will be on reading this in the next few days.

Hayley & David's wedding

Quick note to my niece Hayley who is getting married Saturday. We are so disappointed that we will not see you walk down the aisle this weekend. We know that you will be the most beautiful bride ever. Best wishes to you and David,
Love Stacye, Bryan, Eric and Chels

1 Week Down- Closure

Hi Everyone-

Today is definitely a day for us to celebrate!  Chelsea's incision was completely closed today! We have so much to be grateful for.  We have made one week into the journey, Chelsea is completely closed, and no complications to date that were unexpected.

 Dr. Soltys said that everything still looks great - absolutely no negatives in his report.  Praise God for his continued miracles on Chelsea's behalf!  And a big thanks to Dr. Soltys as well! He has been more than incredible!

The gameplan is to keep her under paralytic through the night, then in the morning start to wean her off with increased sedation.  She hopefully will have the breathing tube removed sometime tomorrow as well.  Then if all goes well, we could be on the regular hospital floor by Monday!

Friends & Family, thank you so much for all the prayers, thoughts, and well-wishes.  Christine and Jim, thank you for all the extra effort you are extending on our behalf; at home and with having so many people pray for Chelsea.  We love you both very much.

Michael, Happy Birthday!  I know that you were hoping that Chels would get through her surgery today successfully and you got your wish!  We will take you to Cabo Fish Taco when we get back home to celebrate.

In closing, please continue to have the donor family in your thoughts and prayers.  I know this one week marker is also significant for them today as well and our hearts hurt for them.

Statistics - Chelsea's Favorite Subject (not!)

Being new to blogging we are finding out new things every day.  I found statistics about the number of views related to Chelsea's blog and I was really surprised.  The Blog has over 1800 views from 7 different countries!  It's amazing to think so many people are interested in her story.  Chelsea - when you wake up we are going to discuss just who it is you know from Portugal!  Thanks for all the interest.  I know Chlesea is going to love reading this when she is feeling up to it.

Chelsea is resting peacefully today.  Her nurse is Linda.  She is very attentive and making every effort to be quiet and let Chelsea rest.  Tomorrow the Doctors will finally close Chelsea's incision and start waking her up. We'll have our girl back in less than 24 hours.  But for today just rest and heal.

Day 6 - Top Ten List

Things we miss about Chelsea being awake:
1-  Her radiant smile - she lights up the room!
2-  Her evil laugh - how can someone so angelic have such a devilish laugh?
3-  The way she smells - she always smells like a little vanilla cupcake.
4-  Her funny stories - especially about her adventures with Amber at ASU (Amber, you are so dear to her)
5-  The way she smiles when she talks about Michael (Michael, you know how crazy she is about you -and so are we!!).
6-  The way she and Eric talk to each other - twins do have a special way of communicating that doesn't always make sense to anyone else.  She does love her Tyrell :)!
7-  Her flying fingers when she is texting -  I think she could take home the Gold if texting becomes a sport!
8-  Her cooking  - especially now that we are eating cafeteria food!
9-  Watching Food Network and Top Chef with her.
10- Her attitude - you've got to love her spirit!

Especially missing her today, can't believe that we have been here almost a week.  It has been a lifetime; and it has been just a moment at the same time.  She continues to do great and today should be a quiet one.

Beautiful Organs!

Hi Friends -

Your prayers are so helpful and God is definitely acting on them! We had great news from the surgeon today - to use his exact words "everything looks beautiful!".

Dr. Soltys did decide to hold off until Thursday to close the incision completely in order to give Chelsea the smallest incision possible but the main thing was that everything looks great. And that Chelsea's progress is exactly where it needs to be with very little complications.

Chels, you will be asleep for a couple more days and then we expect that they will take you off the paralytic after Thursday's procedure. Although yesterday was a little hectic when you woke up, the doctors have a better game plan for Thursday to keep your pain managed. We are so looking forward to having you awake! It is pretty unnerving to see you so still and for so long; but I am sure it has been a good thing while you are healing.

Love you so much and we will continue to keep everyone updated on all your excellent progress!
Keep kicking it, Chickie!
Love, Mom

Day 5 - Closure

Dr Soltys came by last night to let us know they would be performing the follow-up surgery to close the incision this morning.  I wish Chelsea could have been awake to hear him.  He really has quite the personality.  Somehow he and Chels must have worked out a plan for him to give her a belly button ring while he was operating.  We obviously put a stop to that!

Chelsea's nurse today is Diane.  Again, we are fortunate to have an experienced, caring professional nurse caring for Chelsea.  That is going to mean a lot today when she comes back from surgery.  The staff here has been incredible with very few exceptions.

Please pray for Chelsea today as she goes through what will hopefully be her last major surgery.  Stacye saw this verse yesterday and we wanted to share it with everyone.

"Come to Me, all of you who are weary and burdened, and I will give you rest.  All of you, take up My yoke and learn from Me, because I am gentle and humble in heart, and you will find rest for yourselves.  For My yoke is easy and My burden is light."  Matthew 11:28-30

Please pray that all goes well and thank you all for your continued thoughts and concern!

Chelsea Wakes Up

Well we have confirmation - Chelsea is definitely in control of all her faculties. While we were at lunch, the doctors decided to take her off the paralytic medicine as they hoped to control her movement by using pain medicine.

That was a mistake! We were only 10 minutes back, when a monitor sounded loudly and woke her up. She was not happy at all with the tube down her throat. She was definitely yelling at all of us and was thrashing about with full strength. I had a hard time reading her lips but I am pretty sure that we were being cursed, along with all of our ancestors.

The doctors threw every pain medicine in the arsenal at her - morphine, adavan, fentanyl. She was not calming down at all. Chelsea ultimately wore them down because they went back to the paralytic to keep her immobile.

She is now resting peacefully but we are all in for it when they eventually take her off of the paralytic! I hope there are enough drugs in the hospital to cover her, me and Bryan!

Day 3 - Father's Day

Once again we had Colleen as the ICU nurse during the day and she was wonderful.  I could tell she truly cared for Chelsea's comfort as if she were caring for her own child.  When she came in first thing in the morning she wrote "Happy Father's Day - Bryan" on the white board.  It hadn't even entered my my mind it was Father's Day.

Kelly called to check in and I told her that I would have the best Father's Day ever if we could just get through the day with Chelsea continuing to improve.  Well, for awhile I wasn't sure it was going to work out that way but it ended up great!  It was a mostly uneventful day.  Chelsea continued to rest under sedation and the reports from all of the doctors were positive.  No more issues with the bleeding through the NG tube all day.

For the most part, Stacye and I just hung out in the room reading, Blogging and planning the logistics of the next phase of this journey.  We were able to do a load of laundry yesterday at the Ronald McDonald House.  In the mad rush to get out the door, I only packed a few pair of jeans and a few t-shirts.  It's funny how the smallest of things can help take your mind off the heaviness of the situation.

I talked to Eric early in the afternoon.  He was going to go stay with his brother Stevie for the week.  It is such a comfort having a responsible young man that we don't have to worry about and who is being such a big help back home.  There have been so many people reaching out to help in any way they can.  We are so appreciative of everyone's offers. It really means a lot to know the little things at home are under control.

Late in the day Chelsea's blood pressure started to hold at a level slightly higher than the medical team liked.  The nurses and doctors collaborated to ty to determine the cause.  And as usual with Chels, nothing they were trying was having much impact. In fact, one medication made her flush like a sunburn. Chelsea, you are one complicated girl!  Finally by late evening they got the right mix of medications and everything settled back to a good level. Whew!

As I stated earlier, this would be the best Father's Day ever if we could get through the day with Chelsea continuing to improve.  I can't imagine ever having a better one.

Day 2 - June 18th

We saw Dr Bond on Day 2 early in the morning.  He was also one of the surgeons who operated on Chelsea.  There was a concern over blood coming out of the NG tube that indicated some blood from Chelsea's new stomach.  She did receive some blood product overnight to compensate and her urine output had slowed too (Sorry Chels, hope this is not too much information to share about your bodily functions!)

But by lunch time, things had started to trend positively.  Blood from NG tube had slowed quite a bit and urine increased so that was great news!   Chels was doing exactly what they hoped that she would do at this stage of the transplant.  She was resting comfortably and showing no signs of any other problems.
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We had a new ICU nurse on Day 2, Colleen.  She is also fantastic and kept us informed of everything she was doing and why she was doing it.  The folks here at Childrens are awesome.  For those of you who know me well, you know I can be a little "assertive" when it comes to Chelsea's care.  But the Mama  Bear in me has not had to come out  - not even a bit!  Everyone is handling our baby with kid gloves.  So that is good for all of us :).

We also landed a room at Ronald McDonald house which is also super news.  We now have a place to shower and a place to rest while being less than 5 min from her room.  We took our stuff over and got the tour of the facility.  We can stay here indefinitely while Chelsea is in-patient and out-patient. 

Day 2 turned out to be a pretty quiet day.  I called Chelsea's youth pastor Matt Barcalow and found out he will be in Pittsburgh all this week on a special Youth trip.  What a great coincidence!  Matt baptized Chelsea last summer and is very special to her.  He may try to pop over if she gets out of ICU before he leaves town.

Michael also sent some of his music so that we could play it for Chelsea while she is sedated.  I am sure that she can hear it although she can't show it. 

An excellent Day 2 and we continue to thank God for all his blessings!

Day 1 - June 17th

Friday was a long day in ICU.  We were able to stay with her in her room as much as we liked but felt we were probably in the way of the Staff more than anything else.  Chelsea's first ICU nurse was Nicole and she stayed with Chelsea until 7pm that night.  She is an adorable girl and was so helpful and nice.  She was extra gentle with Chelsea and made sure she told her everything that she was doing before she touched her. (Just the way Chelsea would want if she was awake!).

Chelsea did great on Day 1 - there were no issues that cropped up that were out of the ordinary or unexpected by the Transplant Team. 

Bryan and I tried to get a room at the Ronald McDonald house, which is connected to the hospital.  Families of patients can stay there if they are out of town etc and they have 60 rooms that are like small apartments.  We got on the list but there were no rooms available.  By Friday night we had not had any sleep since Tuesday night so we were getting pretty brain dead.  And I dont think we smelled too good either - well, at least Bryan didn't.  So we booked a room at a nearby hotel to spend the night.

Chelsea, dont be mad when you read this.  We really didnt want to leave you for even a minute but thought this would be the best time to catch some sleep while you were completely sedated.  The ICU nurse had our cell phone numbers to call in an emergency so we took the shuttle to the hotel around 7pm. 

We turned on a Seinfeld episode and I never heard Bryan turn the TV off at the end of the show.  We were both exhausted and had a pretty decent night sleep.  We got up the next morning early to take the first shuttle back to the hospital and to see what Day 2 would bring.

Chelsea, I have to tell you how many people were calling and texting to find out your status.  Your dad, Eric, Kelly, Stevie & April, Sherry, Ruby, Nick, Bill, Michael, Christine, Steph and others were all concerned and wanted updates.  Dr. Sandberg called to check on you too and was actually the one who suggested this blog.  You are very loved by all!!

A Hard Day's Night

I left the story with us thinking Chelsea was facing a 6-7 hour operation.  We kissed her good-bye at 5:30pm on Thursday night June 16 at the OR.  We received an update around 10pm that Dr Soltys was on the way back with the organs and that they looked great.  So we figured with that update that 6-7 hours was probably too optimistic since we were already 4 hours in and the organs were not here.

Bryan and I tried to rest but our bouts of crying kept getting in the way - we were both worried about how she was doing.  We alternated waiting in the family waiting room and her hospital room since the Operating Room nurse had our cell phone numbers to call.   The time between updates was getting very lengthy so Bryan called to the OR to have Erin (OR nurse) to go in and ask what was happening.  Around 2am they said things were progressing but not all of the organs were placed yet.  The surgeons were still working hard to finish the operation.

At 6:30 am (13 hours in), Dr. Sindhi, one of the surgeons, came out to tell us that a complication had cropped up after 2am;  the new organs they placed had moved and constricted a vein.  The whole surgical team was called back in. The surgeons solved the issue but it had been tricky.  He was very positive that things were going well and that Dr. Soltys was closing out the operation in another hour or so.

We saw Dr Soltys around 8am and he was very optimistic on how the operation had gone.  In fact he acted like it was just a normal day in his life, no big deal about the problem they had encountered when the organs moved.  We were surprised how energetic he was, even though he must have been up all night working on our little angel.

We got to see Chelsea in ICU around 10am.  They had prepared us that she was going to be under very deep sedation for several days.  In fact she would be paralyzed by medication in order to keep her from moving so as not to disturb her new organs.  Chelsea would also be intubated so that a machine could help her breathe during this time.

We were expecting the worse when we saw her - that she would look puffy, bloated and unlike herself.  And although she was hooked up to what seemed like a million machines and tubes, she looked beautiful to us.  She was not puffy in the least and looked just like Sleeping Beauty.

The ICU plan was that she would stay sedated until the transplant team was ready to do a follow-up procedure for complete closure.  This could be several days away.

Bryan and I kept all of her family and friends updated of her situation and Chelsea was put on many prayer lists.  We were all thankful to God for looking after her!  And thankful to the donor and her family for their incredible sacrifice to help Chelsea.  Whoever they are, they are amazing people and we are so sorry for their loss.  It is too sad for words that in order for Chelsea to have a chance for a better life that someone else loses theirs.

The Wait

We met with the surgeons at 10am and the gameplan was laid out.  Dr. Soltys did a quick peek at her tummy as he was going to be the one to bring back the organs and wanted to have a good idea of size.  He was leaving Pittsburgh at 11am for the donor trip and thought we would probably start the operation some time around 3-4pm.  The donor organs were coming from out of state so there was a bit of an unexpected wait once were were admitted.  It made for a long and emotional day.

As it turned out, they took Chelsea to OR around 5:30pm on the 16th.  Chelsea made the anesthesiologist wait while she made a quick phone call to Michael, who had just got off of work at 5:30pm.

We headed off to the waiting room, expecting a 6-7 hour operation.  But boy, were we wrong!

The Trip

Within minutes of the call, we went into action. Bryan and Matt had to load the boat from the marina in pitch dark and pelting rain.  They did that in record time!  By the time they were back, Chelsea and I  were all packed and ready to go.  The ride home was slowed as an electrical storm moved in. Bryan was tensed over the steering wheel the entire trip. Honestly the whole ride back seemed dreamlike.  We were all nervous, scared, and excited!

Once we hit Charlotte, we ran by the house to drop off the boat and pick up our pre-packed bags to take to Pittsburgh.  Chelsea also had an opportunity to see her boyfriend Michael and his sisters for a few short minutes before we had to catch the flight.

Bank of America had graciously offered to fly us on the corporate jet and the flight crew was so awesome to us!  The flight was incredibly fast to boot; we arrived at the hangar in Charlotte a few minutes before 7am, and we were on the ground at Allegheny County airport by 8am!  I think some angels were helping push the plane because it was the fastest trip we have ever been on.

Once we landed, an ambulance was waiting to drive us to Children's Hospital.  We arrived before 9am and were immediately admitted.

THE Call

It was a dark and stormy night....

No kidding, it really was! But let me start at the beginning.

Chelsea was on a family vacation at Fripp Island, SC.  We all arrived around 4pm on Saturday June 11th.  And the first indication that we were going to have an interesting family reunion came at 7:30pm.  The transplant team had contacted Chelsea's aunt Sherry to find us - there was a possible donor and Chelsea was put on alert.  Since this was the first alert call that we had in over a year, the entire family was on pins and needles until we received notification that the donor was not viable a few hours later.

The vacation continued even though Chelsea was really not feeling great.  She was having some stomach issues and was not able to fully participate in vacation activities.  She did have fun cooking with her uncle Bill and riding around the island on a golf cart.

Now back to the storm! Wednesday evening seemed uneventful, Chelsea went to Karaoke with Kelly, Matt, Daniel, Mae and Eric.   A pretty heavy rain had started and everyone went off to bed by midnight.  A call at 12:30am on June 16th changed all that.  Kim, Chelsea's transplant coordinator, said a very good donor match for Chelsea was found and for us to come right away to Pittsburgh.  This was very different from the previous calls we have had, where we were put on alert for a few hours before being called off.  This call took us to a whole new level - we were going to Pittsburgh!

Chelsea's Journey

This blog was created to capture Chelsea's story as she goes through a long awaited multi-organ transplant.  And the blog will also serve as a way to update her friends and family as she progresses.  We will update this blog as frequently as we can.

Bryan and I also want Chelsea to have a record of what transpired when she was out of commission.  Maybe we will get some new respect as parents (but knowing Chelsea, probably not).

So the story begins with the next post.....