The decision is.......

I got up early this morning to head over to the hospital and wait for the decision from the cardiac team.  In route to the hospital I got a call from one of Dr. Hanley's fellows, Amy.  She said the team met and decided Reagan is ready for her complete repair surgery! 
The radiologist that did her CT scan said her left main bronchus that Dr. Hanley performed a sliding bronchioplasty on in Oct. '08 still looked good and open. All of the vessels he's worked on also looked good.  There is one pulmonary vein that he worked on last time that he may need to do some work on but he won't know until he gets in there for surgery. She said that because Reagan doesn't have perfect lungs, even after the complete repair she may not get to 100% oxygen like you and I but could at least get in the 90's and then hopefully with time, as she grows her lungs would improve and her oxygen levels increase.  I then said, "so this will keep her heart from having to work so hard in the meantime while her lungs improve" and she said "yes".  I then asked, "but by doing the complete repair right now, it's not going to damage her lungs further" and she said "no, in fact it should help because now she's actually oversaturating her lungs with the shunt and this would help this".
So, needless to say, I'm excited and nervous all in one.  My stomach has butterflies but not to the point of upset, more of excitement and the unknown.  But, as we all know, the Lord is the Master of the Unknown and already knows the end result!
Just wanted to say a word of thanks to our dear friend Lisa Shirley who lives here in the area.  She came by the RMH yesterday and delivered us a ton of food, snacks and drinks to tide us over.  We truly appreciate your generosity and Reagan enjoyed the grapes & bananas for breakfast this morning that you brought.

Also, to our college friend, Freya Ashby, who always helps us out with Southwest tickets for Rod, Nolan and Aunt Kay to fly out to California. We TRULY appreciate you, Freya!

Please pray for the following:

• Reagan's health to stay well over the next week until her surgery on May 5
• My mom's flight home on Friday
• Reagan and I will stay and be by ourselves until Rod arrives next week
• Rod's flight out here on Tuesday, May 4
• Nolan, as mom and dad both will be away from home.  He has had a hard time with Reagan and I being gone already for 1 week.  He will come out after surgery for a visit at some point.

Here are a few pics from our stay so far:

Reagan with her new baby from Mimi (Jen's mom)

Ready for a night out on the town with my new purse and sunglasses from my teacher, Mrs. Melissa

Playing in the life-size playhouse at RMH

Morning of heart cath in my new pajamas from Mrs. Lori

getting changed into our hospital gown and I'm sure wondering, "what the heck are we doing"

Getting her lung profusion scan, now you know why she cried through the whole thing, she hates being strapped down

Warming up to the small dog that came with the Furry Friends to RMH.  She didn't want anything to do with the bigger dogs.  This dog reminded her of Gracie, our neighbor dog that she loves from home!

Reagan's Cath

Sorry for the delay in posting about Reagan's cath.  It was a long day yesterday and we spent the night in the hospital overnight.  Reagan did well with her cath.  She was expected to go to CVICU afterwards but ended up going to the regular floor.  The cardiologist that did the cath met with us afterwards and said the pressures in her lungs were 25.  They'd like them to be lower than 30 and 25 was only a slight change from a year ago.  There was slight narrowing on her pulmonary artery and pulmonary vein but not of significant value to do anything about.  The issue more than the heart was her lungs.  The pulmonary veins which brings oxygenated blood back from the lungs to the heart had good flow in them but not adequate oxygen.  Meaning, the blood is getting to the lungs like it needs to now but for whatever reason may not be getting the oxygen it needs to take back to the heart which would mean we're dealing more with a pulmonary issue than cardiac.  He told us some pros and cons to doing the complete repair now or waiting.  The whole cardiac team will evaluate her case in the morning and we should then know a decision as to whether Reagan will have surgery this time or not.  After the cath now, I'm torn and don't know which way it will go, just so thankful she did better than expected for the cath.
We finally got to see Reagan in the recovery room yesterday and she was not quite too happy with the situation.  Both legs had "no-no's" on them to keep her legs straight and she had to lie flat for 4 hrs.  She wanted momma to hold her, of course, and it was so hard telling her I couldn't just yet.  Spent back-breaking 4 hrs. leaning over the bed as much as I could to try and "hold" her as best I could.  She finally got moved upstairs where we spent the night.  Once she was able to sit up, she was much happier.  She ate some jello, mac-n-cheese, ice cream and cheetos dipped in ranch.  Not quite the best cardiac diet but just thankful she was eating and holding it all down.  Even though Mimi was with me all she wanted was momma so, needless to say, I did not get an update out last night.  I slept in the chair next to her bed last night once I finally got her to give it up and go to sleep.  Then she was up at 3:00, in a strange place and wanting to be held by momma.  So, we read books and watched cartoons from 3-5am.  The resident was in bright and early at 7:30 checking on Reagan.  Reagan was asleep when she came in.  She was feeling for pulses in Reagan's feet when all of a sudden Reagan awoke, slapped the dr.'s arm and said "No".  I told the dr. she's not used to being woke up this way at home and we all laughed.  At 8:30, Reagan had a lung profusion scan done through which she screamed for most of it. We then got our discharge papers and were out of there like bandits.  We grabbed a quick bite at RMH and then Reagan and I went down for a much-needed nap. Afterwards, the Furry Friends organization brought dogs to the RMH so Reagan was able to see some dogs to cheer her up.  It's a rainy day here in Palo Alto and expected to rain again tomorrow which makes it a little difficult with a 3 yr. old that wants to be "outside please".  Anyway, better run and grab a bite for dinner. Again, sorry for the delay but thank you all for your prayers and I'll let you know what the decision is tomorrow.
***Sorry there's no pics this time, I'm having computer issues.  Will try to post pics later.****

Pre-op Day

Yesterday, Reagan had her pre-op appt. at the hospital. She did so well for everything.  She weighed in at 24 lbs., with her clothes on that is.
She had an echo.....

and EKG

and then we spoke with the cath/anesthesia team about Monday.  Reagan has to be there at 7:00 Monday for a CT scan and heart cath.  The CT scan will be quick but the cath will probably take about 3 hrs.  Heidi, the Nurse Practitioner said that there was a suttle change on Reagan's EKG from last year's.  It shows that her heart muscle may not be as strong due to getting less oxygen to the muscle itself.  She spoke with me about her concerns for the cath on Monday.  She said due to this change Reagan may not tolerate the cath as well as in the past.  This will be Reagan's 5th cath and I was expecting it to be a breeze and was totally caught off guard when she told me the next part.  We asked why she may not tolerate it as much and Heidi told us that when she goes under anesthesia all your muscles relax and because her heart muscle is a little weaker there is a chance she could go into cardiac arrest in the cath lab.  She said if that were to happen they are totally prepared and would have to intubate her, do chest compressions and give her a little epinephrine and that usually gets the heart pumping again.  A last resort would be to put her on ECMO, which we do not want and Heidi said she does not want for Reagan either. Needless to say, I was a shocked at what she was telling me but she said they have reserved a bed for her in CVICU Monday night just in case she has a hard time with the cath.  I then asked who the anesthesiologist would be for Monday and requested a certain one that we love.  She wasn't scheduled on Reagan's case Monday but when I requested her they went out and called her and she agreed to be the anesthesiologist on Reagan's case Monday.  Thank you God!  She is wonderful at what she does and keeps all her colleages in check, if you know what I mean, and that's my kind of dr.!!

After our appt. we went by the CVICU to try to find our heart friend Callie and her parents.  In route we ran into several people we knew, the chaplain, case manager, OT and Child Life Specialist.  They all ooooed and aawwwwed over how big and cute Reagan is and could not believe it when we told them she walks, talks and eats now!  The OT said she remembers working with Reagan and how horrible her reflux was and that she couldn't tolerate anything and said it's so encouraging to see that she is eating now.  Callie's mom Sarah said she was also glad to see how petite Reagan is because Callie is the same way and it encouraged her to know Reagan is too.  I then was able to go back with Sarah and see little Callie with all her tubes and wires.  Poor baby, she's such a tough cookie like Reagan.  She had heart surgery last Friday 4/16 and will be having a second one on Tues. 4/27.  Please continue to pray for her recovery and upcoming surgery.  Before leaving, the chaplain gave Reagan a picture of Jesus to carry with her.  We are thankful for such a supportive team here as well as all of you guys around the country cheering us on.  Even though I was a little stunned at the pre-op appt. I know God is always with us and in control at all times. 

We were able to check into the Ronald McDonald House Friday afternoon and just relax a little.  While visiting with all our friends in the hospital Reagan kept saying, "outside please" so that's just what we did once we got settled in Ronald McDonald.  Reagan enjoyed some outside time driving the Cozy Coupe car

and then we walked across the street and had a nice dinner.  We are very thankful to be in RMH now, it's closer to the hospital & has outside place for Reagan to roam, which we intend on letting her do as much as she wants before having to go in the hospital on Monday.  For those of you who wanted an address, it is:

Reagan Williams Family

520 Sand Hill Rd. Room M207

Palo Alto, CA 94304

Just wanted to end with a special note of thanks to many:

• my mom, for coming with me and helping with Reagan
• my stepdad, Lonny, for letting her be away for a week
• Mom and Lonny's friends, Leonard and Barbara, for bringing mom & Lonny to meet me on the interstate Thurs. to go to the airport so I wouldn't have to detour and add time to our journey
• Lonny, for driving us to the airport and then getting my SUV back home to Rod and Nolan
• Leonard, for following Lonny to Temple to drop off the SUV and then bring Lonny back home
• Barbara, who I'd never met until Thurs. morning at Starbucks on the side of I-35 who made me a hand-carved wooden cross necklace
• Rod, for being a great daddy and taking good care of Nolan while we're away
• Aunt Kay, for helping Rod with Nolan
• Mrs. Debra Moore for always taking Nolan to school every morning so I don't have to wake Reagan and even now while we're away
• church family at Temple Bible Church praying for us
• as well as many of you everywhere doing the same

THANK YOU, THANK YOU, THANK YOU!!

Goodbye Texas....Hello California

Just wanted to let everyone know we made it to California safely.  We arrived at the airport in plenty of time for our flight.  All our belongings made it safely through security except the oxygen concentrator.  It had to be inspected by the TSA officers.  I guess they figured we might blow up the plane with oxygen...go figure!  Our flight was overbooked so they were asking for volunteers to go later.  Needless to say, we did not volunteer for that but thankfully someone did.  Although it was a full flight, it went very smoothly.  Reagan slept for most of the flight and did great!  We ran into a little issue with our rental car but finally got it all straightened out.  Poor mom had Reagan, an oxygen concentrator, a stroller loaded to the max, and two huge suitcases waiting for over a hour at the airport while I was trying to get our rental car.  An hour and 20 min. later I finally pulled up outside baggage claim to pick them up.  We are now comfortable in our hotel room and hope to get a good night's rest.  Tomorrow, Reagan has her pre-op appt. at 1:00.  Will update later.

Reagan with all her belongings trying to call Daddy & Bubba from our hotel

Crazy last day

Well, it's almost 10:00pm Wed. night and it's been a very busy last day at home preparing for our big trip to California tomorrow.  It started as a great day, turned into a nightmare afternoon and then ended on a sweet note.
The first part of this week Nolan has been having headaches and stomachaches.  The nurse called me from school Mon. and I went and picked Nolan up. Tues. morning he stayed home but after seeing that he seemed fine I went ahead and took him into school.  After having a nice talk with his Kindergarten teacher Tues. night, both of us debating whether Nolan has a little bug or if it's just nerves with everything going on at home, we came to a nice end that hopefully it would soon pass, either way, and that she would do whatever she could to help Nolan through this if it was related to mom and sister leaving for California and that she would be praying for us.  I told her how nice it was to have a teacher that cared about Nolan so much and didn't just shove him under the rug with all this.  Anyway, I tell you this story to lead to this:  Nolan said he had a stomachache this morning but after convincing him to go ahead and try it for the morning and that I would come have lunch with him, he went on to school.  At lunch, Mrs. Sims told me how wonderful the morning had been and Nolan was acting like his old self again...no tummy complaints! Nolan and I then enjoyed a nice Chick-fil-a lunch and laughed and cut up together.  He truly seemed all better!

I then left school to meet Reagan and Aunt Kay at the nail salon for Reagan and I to get our toes done for the big trip.  Reagan was not sure what to think about the whole experience but sat in the chair like a big girl and let the lady paint her toenails her favorite color- yellow with pink dots.

After Reagan's toes dried, Aunt Kay went ahead and took her on home for a nap while I finished up.  Unfortunately, this is where my afternoon turned bad.  While finishing my pedicure, I got a call from the surgeon's office saying Tricare was denying authorization for Reagan's cath on Monday and wanted me to call the insurance company to see what I could find out.  So while tying to grocery shop for the boys, I was on the phone with insurance, dr.'s offices, etc trying to get everything cleared up.  I ended up going to Reagan's pediatrician's office to get it straightened out.  They had already submitted the referral twice to Tricare and Tricare was telling them they had never approved Reagan to go to California .  I then had to contact Reagan's case manager for Tricare and luckily she was able to straighten things out.  Apparently, enough time has gone by with Reagan not being seen by the drs. in California that her file had been placed in inactive status.  How ironic is that, seeing that although we're not in California, we're always 'actively' charging Tricare for lots of things on Reagan's behalf like meds, home medical equipments, therapy, dr. visits, etc.  Anyway, to make a long story short, our case manager reopened her file as active and was going to get her referral approved by end of business day today.  I'm laying my head down tonight praying it all works itself out because the surgeons' office already informed me that if we get there Friday for Reagan's pre-op appt and the referral is not approved, I will need to sign a financial waiver of responsibility.......HA.....NOT this mama!!!!  I've seen the bills this girl can rack up and I'm not about to sign responsibility for any of that just because of an insurance company's mess up.  Oh, and by the way, we have government insurance, so I'm sure we'll all be dealing with this kind of mess when Obamacare kicks into action.....ha!!  Not to get started on that, but let me end on the sweet note.....

Our precious friends, Warren and Lori Kostencki and their boys, Caleb and Cody, stopped by our house this evening and had a nice prayer with us for our trip, Reagan's drs, decisions, procedures, surgeries and overall recovery.  That truly meant alot and we love you guys!!

Last but not least, before Nolan went to bed, I asked if we could go ahead and pull his first tooth.  He's had a wiggly snaggle tooth for some time now and since I'm leaving tomorrow, I did not want to miss this memorable event.  He reluctantly agreed and thankfully I had it out before he even knew what happened.  Yea, what a note to end this crazy day on.

Well, it's a dark-thirty call in the morning as Reagan and I have to leave Temple around 6:30 am to head to Hillsboro, pick up my mom, and then off to Dallas to the airport.  Please pray for an UNeventful day of travel and we will update later.  Night-night everyone and thanks for your support!

Hurry home Reagan!

Rea-

  Your brother and I want you home quick. We're praying for no pain and a speedy recovery because no one deserves what you’ve gone thru. You’re the toughest little girl and our little hero.

Photo and video editing at www.OneTrueMedia.com

It's that time again......

I can't believe the time has come to even be discussing this again but..... two weeks from today we fly to California for Reagan's heart cath and other pre-op procedures.  One year ago, May 2009, we flew out to LPCH thinking Reagan was about to have her last of many heart surgeries and get a complete repair of her heart.  God had other plans.  After the cath, CT and bronch, the cardiac team decided it would be beneficial  to Reagan if she have more time for her lungs to get in better shape before going through with the final repair surgery.  We were told to come back in one year and they would re-evaluate her and make the decision at that time.  So, April 22, Reagan and I, along with my mom, will be flying to California for Reagan's pre-op appt, heart cath, CT and bronch.  On April 28, the cardiac team will review their findings and make a decision about whether to do Reagan's surgery now or send us back home again.
I have had mixed feelings in the past about this, not knowing whether she's ready or not but in the last several weeks, I feel like God is preparing my heart for another hospital stay.  Reagan has become much more active in the past year and it seems to be catching up with her heart.  What I mean is, she tries and wants to do so many things she sees her brother and other children doing, but her little heart can't beat fast enough to keep up.  Her work of breathing has increased and there are days she requires oxygen on and off.  I feel like this is God's way of telling me although Rod and I may not be ready to see her go through another surgery, Reagan is ready and will be better off for it.
Another reason I've had mixed feelings about the surgery is that several months ago, we found out that Rod's unit will be deploying to Afghanistan this summer for a year long deployment.  In fact, Reagan was set for surgery in June but after finding out this news, we had to call the surgeon's office and get her bumped up sooner on his schedule.  2009 proved to be a good year for us and as soon as 2010 rounded the corner I had alot in my field of view making me think it was going to be a horrible year.  Why was God making us go through two huge stressful events, back to back?  However, in reading my devotional one morning,  I came across the following and it gave me the peace I now have heading into our next trip to California.  It also caught me attention, when the verse was the same verse I have in the sidebar of Reagan's blog with her picture from a past hospital stay.

A Few More Scenes

"In this world you will have tribulation," Jesus promises, "but be of good cheer, 

I have overcome the world."  John 16:33

God has kept no secrets. He has told us that, while on this yellow brick road (of life), we will experience trouble.  Disease will afflict bodies. Divorce will break hearts. Death will make widows and devastation will destroy countries. We should not expect any less. But just because the devil shows up and cackles, we needn't panic.

Our Master speaks of an accomplished deed....."It is finished" (John 19:30).  The battle is over. Be alert. But don't be alarmed.... The manuscript has been published. The book has been bound. Satan is loosed for a season, but the season is oh-so-brief... Just a few more scenes, just a few more turns in the road, and his end will come.  

Taken from Grace for the Moment by Max Lucado

This devotional gave me the thought that yes, we do have alot on our plates in the next few months, BUT....'don't be alarmed', 'the season is oh-so-brief'.  I feel like if I look at it this way, when those long dark days come, I can remind myself that "this too shall pass" and "God is still in control through it all."

A few things to be in prayer for:

• Our travel safety- April 22
• Reagan's health (to stay well)
• All pre-op procedures to go as planned (no postponements)
• A room to open at Ronald McDonald House
• For our family as we are separated during this time.  Rod will stay back initially, until we find out if the surgery is a go or not.  If so, then he will fly out right before surgery. (With the deployment coming up, he only has 2 weeks leave to take and wants to use it at the best time)  Nolan has school until June 3 so he will stay back for that.  Pray for him as he is away from momma and sister during this time.
• ALSO, HUGE REQUEST:  Nolan does not know about the deployment yet.  Rod and I are praying about when the best time will be to tell him.  He is very sensitive and analytical so telling him too soon would give his little mind too much to think about.  Reagan having surgery is enough for him right now.  The other day he said, "How many surgeries is sister going to have to have?  I wish they could just fix her heart on the first one so she wouldn't have to have any more." O.k. God, just stick a knife in my heart and twist it, why don't you, 'cause that's about what that statement felt like!!  Like I said, pray for us as we figure out how and when to tell Nolan about Rod leaving for a year.  
• Our heart friend, Callie Carver, who is having her cath this next week to decide if she needs another surgery now. There is a link to her blog in the sidebar: Caring for Callie

Once again, thank you all again for all you do.  You do not know what your support means.  The comments you leave us are what get us through each day sometimes so keep them coming....