Renal Ruckus

The last few days have been all about Reagan's kidneys.  Her BUN & creatinine levels continue to rise.  In fact, her numbers are at levels that normally kids would have already been put on dialysis.  But, in Reagan's case, because she is so complicated & prone to infection they are trying to hold off from dialysis for as long as they can.  From all of her other systems (cardiac, lung, etc) standpoint, she remains stable so their plan is to try to support her kidneys through this acute renal injury as best they can. As long as nothing else gets thrown in the mix hopefully, we can avoid the whole dialysis thing.  Reagan is producing urine but just not clearing all of the toxins from her body that she should.  Yesterday, her creatinine level was 4.5 and today was 4.6.  The renal dr. said once you see this trend of only going up a tenth of a point, the injury has usually reached a plateau and the levels will come down from there.  The plateau could last 3-4 days before her creatinine levels come down.  They are now checking her levels twice daily to stay ahead of it in case it were to go the way we don't want it to.  It's a day by day decision to either do dialysis or give her kidneys more time to correct themselves on their own.  He told us even if she corrects herself without the dialysis he would like for her to be followed by a nephrologist in Austin when we get back home.
She also has had a few fevers over the last few days but nothing has grown from any cultures and we are praying these don't cause us any complications as far as the kidneys go.
In other news, she is suffering from delirium.  She looks at her hands as if they're snakes and has weird looks on her face as if she's hallucinating & gets very frustrated when people invade "her space".  The attending said she's got a worse case of it due to all the drugs she was on and that it will just take time and good management of her withdrawal symptoms to help her through this.  It is totally correctable though and nothing permanent as far as cognition.  Today, in fact, she has even improved and we have gotten a few slight smiles from her- the first in over 3 weeks.  In helping her with the delirium,  Dr. Roth said we need to help her distinguish her nights from her days, so Rod & I have been trying to keep her awake during the days with various activities in hopes that she will be able to sleep at night.  We have been sitting her up in the bed and letting her watch Dora DVD's which although she doesn't smile at, she seems to enjoy watching.

We also got to take her on her first trip outside of her room today. 

We took her on a wagon ride up to the roof for a little fresh air and then circled back down through the CVICU stopping by and saying hello to some of our friends. 

We took her by baby Arden's bed and let her look at her and then Arden's brother Elliot came by and wanted to play ball with Reagan.

We got one smile out of her when we were on the roof enjoying the fresh air and talking to her about being at home and swinging in the backyard. 

Other than that, she didn't budge and let any other smiles out on the wagon ride but did seem upset when we finished and returned to her room.  We told her we'd take her on more wagon rides each day.  Needless to say, the event wiped her out.

Because Reagan had a yucky day on Saturday (our anniversary) we did not do anything as we had hoped until MiMi & PawPaw came to relieve us for night shift and brought us a Fleming's gift card as our gift.  They had come a little earlier than they normally do and surprised us with the gift card and told us to go have a nice dinner on them.  So, we walked over to the Stanford Shopping Center and had a nice steak dinner, compliments of my mom & Lonny.  Thank you guys so much for helping us escape our "reality" for an hour or two.  It was delicious!
In the morning, I will be taking Rod to the airport for him to fly back home.  He and Nolan will finish up their duties (school & work) through Thurs. and then if Reagan's stay looks like it will be extended they will be flying back out probably Sat.  It's been a nice weekend with Rod here.  Thank you, baby, for surprising me the way you did!

I know Reagan has enjoyed a little daddy time as well.  

Can't wait until we can all be together at home!

Thank you again to the Schuhmacher's for hosting Nolan for the weekend.  It appears from the pic below that he had a rockin' time.

Thanks again for helping him escape his "reality" as well!

Happy Anniversary

Jenn, remember our first 2 years of being married? Our take home pay was $1000 a month. We were poor and knew it. Good thing (or good luck as Nolan would say) we started out in upstate NY, because NY is one of the few states that pay $.05 for coke cans and beer bottles. At night after work we would ride our bicycles along the roads picking up cans and bottles. I really cleaned up after the single Soldiers would throw their nightly parties in the barracks. 400 cans later we would go to dinner and a movie. I pulled up next to you with Wal-Mart sacks hanging on each of our handle bars full of cans and asked, “Did you ever think having our degrees we would be picking up cans for money?”
Here we are 11 years later and it has been a fun bike ride, Happy Anniversary.

Also, happy anniversary too our cool neighbors, Butch and Debra (34 years) and Professor of A-9 (Nolan’s teacher) Laurie and Bob (34 years).

Surprise, Surprise!!

Well, last night after leaving the hospital around 9:30pm and heading over to Ronald McDonald, I took my shower and went to bed as usual. Around 1am, I was awakened by the silhouette of what appeared to be my husband. Was I dreaming? No- it was Rod. He had surprisingly flown out Thurs. evening to surprise me for our anniversary this weekend. Needless to say, I was surprised!! He will be here until Monday and then has to fly back home to finish his Army course he has been in for the last 6 weeks.

Nolan stayed back in Texas with Aunt Kay Thurs. night and then headed to the Schuhmacher's house today after school to spend the holiday weekend. Thank you Darren & Casey for having Nolan all weekend so that Rod could come out and celebrate our 11th anniversary with me.

Today, it's been a day of enjoying Daddy.

Reading a book with Daddy

Mercer Mayer's "Just Me and My Dad" (how appropriate)

Since Dad was here, I used the opportunity (having an extra set of hands) to bathe & wash Reagan's hair.

We also changed the dressing on her burn

I know her incision looks bad but it's actually healing. Thankfully, the burn was not bleeding today but we still covered it to keep Reagan from grabbing at it and itching it. Then we were able to put a fresh clean gown on, compliments of our friend Lisa Shirley.

Thank you, Shirley family, for such a comfy gown!

As far as Reagan's status today.... her BUN numbers stayed about the same but her creatinine levels rose even further. She is still on the bumex drip and has been peeing which is good. The renal drs. are not glad that her numbers rose today but are glad she's at least peeing. It will just take time for her system to clear all those meds that her kidneys do not like. Hopefully soon, they will all clear. Also, Reagan spiked a fever last night-- yuck! She has not had anymore today but cultures were sent from her broviac line overnight because of the fever. God, please don't let her get another infection so we can get the heck out of here ASAP!
Lastly, I wanted to say thank you to Judy Hobbs and the members of Menlo Park Presbyterian Church that's located here in the area. The church has been praying for Reagan. Judy came by yesterday and got to meet Reagan for the first time. They also provided us with $100 in Safeway & Chevron gift cards. Thank you to all my brothers and sisters in Christ whom I've never even met. You are God's hands & feet reaching out to help His children. May you be blessed for your generosity!!

Our last 24 hours.....

Our last 24 hours have been better.  Last night, Reagan was given a medicine to make her poop all the extra potassium out of her system and she did just that.  Her potassium levels were much lower today.  She also was started on a Bumex drip today to try to increase her urine production.  She has had 3 peepee diapers today which is more than we were having before so we'll take it!  Because she did start peeing, she does not have to have a catheter put back in at this point- Yeaaaahhh!  In spite of all the measures to help her kidneys, her BUN and creatinine levels rose even higher today.  The renal dr. said even though her levels are high, there is still room for them to rise higher and her kidneys still come back from all this.  I, of course, don't want them going higher but was glad to know they're not as far gone as they could be. 

Today, she has been awake for longer periods of time before falling back asleep.  We were able to read some books together & just snuggle (both good for healing, in a mama's medical book)

As if Reagan didn't have enough going on, she has a burn on the skin to the left of her sternal incision.  Rod noticed this back when he was here after her chest was closed.  She has very sensitive skin and the slightest thing irritates her skin.  We think it was due to some betadine left on after surgery or the sterile drape that she had on when her chest was open for 6 days.  It has been being covered by gauze each time her sternal dressing was changed but yesterday after her incisions were removed, the dressing they put on was not as wide and the tape ended up being put right on top of this burn area.  The dressing has been changed a few times since and with the taking on and off of the tape it has irritated this burn and caused it to start bleeding.  The surgical fellow came in and took a look at it and suggested something they can start putting on it to try to heal it.  It has been driving her crazy and she itches it any chance she gets.  She, in fact, digs at it so much she pulls the dressing off herself.  It is a struggle keeping her hands off of it.  Please pray this heals quickly!

Reagan was weaned to 1L of oxygen yesterday and overnight and today tried weaning further but she did not tolerate it so we are still at 1L.  She, also, is usually a good cougher but today has not coughed at all.  She's very junky and needs to get this stuff out.  I think maybe either her chest or her throat is hurting and so she's not coughing as good.  After having to suction her just to get some of the junk out she fell fast asleep.  Someone who walked by said she looked like a princess on her throne.

Something makes me think she's not quite feeling like a princess at the moment!

If It's Not One Thing, It's Another....(Poor Baby)

Reagan has had an o.k. last few days.  She still remains asleep more of the time than she's awake.  The docs don't like that she's sleeping so much but I'm not so concerned- at least she's healing while resting. 

Our little sleeping beauty

Reagan's BUN and creatinine levels have been rising which reflect her kidney status.  Yesterday, one of her big-gun antibiotics (Gentamicin) was stopped because it's damaging to the kidneys.  Also, one of her diuretics, diuryl was stopped.  In spite of these being stopped, she did not pee very well yesterday, last night, or today.  Also, her BUN and creatinine levels were even higher today.  Renal team was consulted.  A renal ultrasound was done to check the blood flow to her kidneys and check to see if she was even producing urine in her bladder.  Her bladder is full of urine and the blood flow to her kidneys looked good.  So, the focus has changed to helping out her kidneys more through this stage.  The renal doctor said alot of the things that Reagan has been on combined together are not good for the kidneys.  In most cases you would avoid combining all of these at once, but in Reagan's case, she needed them all for various purposes to save her.  She basically got The Perfect Storm combination of all things bad for the kidneys at once and so now her kidneys are saying they've had enough.  Because of this, various things have been building up in her system such as...
-Methadone and Ativan- hence why she's still so sleepy and not waking up
-Potassium- not good to build up (medicine being given to help her body pass the extra potassium out of her system)
-Formula was switched to one that's easier on the kidneys for now until they improve
-Lasix being switched to Bumex because she has been on high doses of lasix for some time now and not responding.  Lasix for long periods can be damaging to the kidneys as well as hearing.
Anyway, I'm sure there's more.  Basically, let's just pray for her kidneys to start working again and clear all these bad things out of her system so she can start moving towards discharge.
In other areas, Reagan is doing well.  This morning she came off the high-flow oxygen and is on regular nasal cannula at 1L now.  Her breathing treatments are now only twice a day which was our normal home regimen.   Also, the surgical fellow took out her stitches and pacing wires this morning.  I'm so glad because she has been itching like crazy and hopefully by getting those stitches out, she will be less itchy.
Well, it's 9:30pm and I'm going to sign off for now and let night-shift (Mimi & PawPaw) take over.  Hopefully by the time I return in the morning, my sweet girl will have peed a river and had a good night's rest.  Will update later.

Post-Op Day 19

Just thought I'd update on how Reagan's been doing the last two days.  Since getting extubated on Saturday, Reagan has been still quite sleepy, drugged, whatever you want to call it.  I did get to hold her on Sunday for the first time in nearly 3 weeks.  Not sure, if she enjoyed it quite as much as mama but thankful for the moment, to say the least.

Her wake times are minimal and she has already begun showing signs of withdrawal during these episodes of being awake.  Her pupils are huge, she's quite combative with anyone trying to touch her.  This is an unfortunate stage we always go through and takes fine-tuning to get her withdrawal meds at just the right dose for her to be somewhat comfortable. She is getting Methadone and Ativan and today Clonidine was added.  She can also have PRN doses of Ativan or Morphine.  She's already received two PRN doses of Morphine today.  It has seemed to make her rest a little better.  She was able to get rid of her Art line today, that had been in since surgery.  I'm sure she appreciates this seeing that it was in her groin all this time.
This morning around 6am, Reagan had another "seizure-like" episode.  PawPaw Lonny was sitting bedside with her when it happened.  There was a fellow dr. who saw the episode as well.  Both described it as her eyes being rolled back in her head and locked, not focusing.  Her head was shaking up and down uncontrollably as well.  It lasted about 20 seconds and then she was done, falling back to sleep.  This time her arms and legs were not locked as before.  She is on a seizure med currently at a small dose.  Neurology wants to give her a day or two of trying to get her withdrawal meds worked out before possibly going up on the seizure dosage.  They feel the episodes still could be medication-related.  I am praying this is so.  Reagan was on by-pass for a super long time and this can affect the brain sometimes.  She's not herself enough yet for me to tell if cognitively she has any affects from the bypass.  Also, her meds were adjusted quite a bit over the weekend to wake her enough for extubation so this could be a cause as well.
When Reagan was extubated Sat. she was put on high-flow nasal cannula at a rate of 8 L at 100% oxygen.  She's now at 7L @ 70% O2.  Her respiratory rate has been really low since Sat.  In spite of this, all of her blood gases and other vitals are normal and she seems comfortable breathing, not in any distress.  They are watching her respiratory rate and hoping it corrects itself the more she wakes up and is less drugged. They are also slow to wean the high-flow because of this so I'm praying it corrects itself sooner than later so it does not hold up our getting out of here. 
From an infection standpoint, she has not had any more fevers since Sat.  She's now on the standard doses of all 4 of her antibiotics to cover her for H flu (pneumonia) and enterobacter.  These doses are due to end Saturday, which is mine and Rod's anniversary.  I pray there's not much hold up after that so that we can get home and enjoy some good family time together.
Thank you all again for your continued prayers & support!!

*No More Tube*- **Updated with Pics**

Reagan was extubated around 4:40pm Sat. and is doing great!!!  

Also, she has been fever-free for 48 hrs now!!!!!!

Here are some pics from our big day yesterday:

"Seriously people, what are we waiting on?"

"As long as we're waiting, I guess Monkey and I will take a nap"

"Dear God, can you please make these people take this breathing tube out?"

"What just happened here and where am I?"

"Aaahhhhhh, sweet relief!"

It truly was a great moment!  She is still quite sedated but we are working on trying to slowly wake her up and avoid withdrawing too badly.  We're trying to find that sweet spot!  It's definitely a work in progress but I'll take it over the breathing tube anyday!!

More thank yous:

I want to thank the LaPointe family (Arden's parents) for hooking us up with members of a local church here.  One of the members has allowed my mom and Lonny to park their RV at a storage place for free.  Now that Rod and Nolan are home we three can all fit in RMH and paying to park the RV was just an added expense.  Thank you so much to that church member for taking that off our hands for now.

Also, I want to thank the Schuhmacher family back home for letting Nolan come over and spend the day swimming so that Rod can prepare his brief that he has to give this week.  I'm sure Nolan is thankful too!  Just can't believe he's swimming today because I'm freezing in northern California.  Hopefully, we'll get back to that hot weather soon enough.

Eventful Evening

Last night, we had an eventful evening but in the end it all worked out.  Reagan went to the cath lab around 7:30 and within minutes Dr. Perry had a new broviac line placed and we were back on our way to the CVICU. Once back in our room, she was able to have her central I.J. line removed from her neck and PICC line that was placed on Thurs.  Now she is just down to the broviac, art line and breathing tube which should come out today.  We are currently on 30 min. sprints or trial runs to see how she breaths on her own and then if -or should I say when- she passes those than we can extubate---Yaaaayyyyy!!!  I will be so happy when I can report that the breathing tube is gone.
After coming back from the cath lab last night, Dr. Zebrack, our new primary attending, had a talk with me about the whole issue of meningitis.  She presented the case for doing a lumbar puncture to rule it out definitively.  She said, I know the CT showed no signs of meningitis but the only definite way to rule it out is through a lumbar puncture.  She said, we do not have to do it if you don't want but I just hate that we are dosing her on such high doses of antibiotics and not knowing for sure if she truly has meningitis.  Plus, it's a long term course (4-6 wks) to commit to.  If it comes back that she doesn't have it, then we are done with those huge doses and we are simply treating our 14 day course for the pneumonia we know she has.  Yes, she keeps spiking fevers but alot of kids in our unit spike fevers all the time and we never get a true reason for it.  She also gave me her resume on how many she's done and is totally comfortable doing it herself and within an hour we could have the results.  After seeing it in a whole new light, we agreed to the procedure and it was done bedside late last night.  Within an hour, we got a free and clean report that she does NOT have meningitis!!  Praise God-- we are so relieved and thankful we did it now so she does not have to get all those unnecessary doses for nothing.  I went and gave Dr. Zebrack and huge hug afterwards and thanked her for convincing me to do it and setting my mind at rest now.  She said she felt so much better about the whole thing now too.  Then we all ate chocolate to celebrate the big news-- LOL!
Now, for today we need prayers that Reagan will wake up enough from her sleepy sedated state and pass these sprints on the vent in order to get extubated!  I want to lay my head down tonight knowing she is breathing on her own without that tube down her throat as it was 2:30 this morning before I went to sleep with the eventful evening we had last night.
Lastly, I'd like to thank Roni McFadden.  She is the author of a children's book called Josephine, A Tale of Hope and Happy Endings.  It's the true story of a little filly horse who lost its mother and got a surrogate mother.  Josephine, the filly, is a granddaughter of Seabiscuit. Roni, the author, worked for the vet for the horses and was so touched by the story she turned it into a children's book.  The book is not even released yet.  This weekend, Roni is having her first book signing.  My mom and Lonny met her out here.  Her and her daughters were staying in the RV parked next to my mom and Lonny's because her husband was here at Stanford having brain surgery.  Roni gave Reagan an autographed copy of the book and has sent more copies to the Ronald McDonald House here in honor of Reagan. Thank you for doing this.  I pray each child, parent or grandparent that picks up these copies at the RMH will be touched by this sweet story.

Busy but Better Days

Yesterday, Reagan had a PICC line put in.  It is not sufficient though.  They did not get it as centrally located as they'd like and overnight it started leaking and not drawing blood anymore.  So, today's plan was to have PICC team come back and redo it essentially but the new attending for the weekend came on and came up with a different but better plan that I actually like better.  At 6:30 tonight Reagan will go to cath lab and Dr. Perry will put in a broviac line under fluoroscopy so we'll know it's in the right place.  Then at that time, she'll be able to get rid of her central I.J. line and the PICC. As Dr. Zebrack put it, we're gonna get her "all cleaned up".  Then, it's push forward to extubation!!!  She really has been doing good on her vent settings but have just been sitting around all day waiting to get this line situation worked out before we extubate. 

While we've been waiting I gave Reagan a pedicure with pink nail polish and flower nail art stickers:

(I know- the pulsox messes up the pretty picture)

Our pedicure is thanks to our friend Lisa Shirley, who came by on Wednesday and brought Reagan a bag of goodies (nail polish, Dora toothbrush, Pinkalicious book, Hello Kitty pajamas, headbands & more)

Thanks Shirley family for all the goodies and pictures Kyle & Quinn colored for Reagan

In addition to the PICC line yesterday, Reagan had an EEG and a CT scan of her brain, chest and belly to look for signs of infection.  The EEG showed no signs of seizures.  The CT scan showed no signs of meningitis in the brain, no problems with the belly and the lungs showed signs of either pneumonia or atelectasis (collapse of lung or small alveoli) in the back of her lungs.  This is not a shocker as Reagan does have H flu which can cause pneumonia as well as she has been lying flat for more than 2 wks now and that area of the lung hasn't had quite the opportunity to expand itself to the fullest capacity.  In spite of all the good reports from all the imaging & all the antibiotics she's on, she continues to spike high fevers (103).

Once again, if she can get her breathing tube out and sit up and move around, it can only help the whole situation!

Reagan has not had any more seizure activity and I am much more confident that hopefully it was sedation-related before.  Neuro has started her on seizure medication to be safe and wants us to go home on it and then follow up with a Neurologist back home for how long the course should be.

It seems like I'm forgetting to tell you something but I'm gonna sign off for now.  We're about to leave for the cath lab.

I did want to say thanks to our neighbor Pat Campbell for cooking my boys dinner & dessert.  You're the greatest, Ms. Pat!

Scary Evening...

Yesterday, Reagan's day was relatively good. They have been weaning her on the vent and she has responded well to all of the new settings over the last 24-48 hrs. I truly think her lungs are in better shape than they were over the weekend. The plan is to try to extubate her later today, if not, by tomorrow.
In spite of her stable vitals she has continued to spike fevers since the weekend. She is on four different antibiotics to cover the H flu and enterobacter that we know she has as well as others just in case due to the continued fevers. Then, yesterday around 4:30 I was sitting by her bedside and she had what looked to be a seizure. Her eyes rolled back in her head and her arms and legs were tight and had resistance when I tried to move them. About an hour and a half later, she did the same thing. Each episode only lasted about 15 seconds and she went back to her normal "sleeping" immediately afterwards. In my fright from the situation, I began looking up meningitis symptoms because the H flu bug that she has can also cause meningitis. Many of the symptoms listed were ones Reagan has had (fevers, seizures, respiratory infections, and petechia (small purple spots in differnet area on her skin- mainly thorax and neck on Reagan). I then starting having my breakdown right there at the bedside. I'm usually one that breakdowns out of sight but with all the stress of the situation I let it all go right there in front of everyone. The docs were convening outside her room and called a neuro dr. in to let them know what was happening with her. We were told that the seizures could be related to coming off narcotics too quickly. They have had some cases here in the CVICU of kids having weird movements that concerned them enough to do a CT scan and all came out normal-- just sedation related. So, Reagan was given an extra dose of Ativan after her second episode. She then had a 3rd episode of stiffening her arms but did not roll her eyes back that time. The nurse and my mom said it was more like she was mad and fighting than a seizure. Overnight, she has not had anymore seizures and has been cognitive the times she does wake up. Neuro and Infectious Disease are now on Reagan's case just trying to figure out the high fevers and seizures. In the interim, the CVICU docs have upped her antibiotic coverage to include meningitis although they are not thinking that it is this at this point.
Today, is a big day aside from the fevers and seizures. Reagan is currently getting a PICC line put in so that once she's extubated and gets rid of her central and art lines we will have a way to administer her big gun antibiotics for whatever course they deem necessary. Also, she has significantly come down on her vent settings and is doing well. So, extubation is planned for today but probably not until later on. Also, there is talk of doing a CT scan of her chest to check to see if maybe these fevers might be an infection in her sternum as well as checking the brain for meningitis. The CT might happen today or possibly tomorrow. We are waiting for all the teams- CV, Neuro and Infectious Disease to come up with a definite plan.
All viral, urine and blood cultures have come back negative so far.
Thank you all for your prayers and I will update as often as I can.
Lastly, I want to thank my mom and Lonny for sitting up with Reagan last night so that I could get some sleep. Please pray they are able to catch up on their rest today.

What a Frustrating Day....

I'm going to apologize up front because this update is probably going to seem quite negative.  Since updating, Reagan has done better respiratory-wise.  She was in distress on Sat. as I described before but with the measures taken she has gradually improved.  Not that this means alot to some of you, but she had already come down to a rate of 10 on the ventilator and Sat. she had to be taken back up to 40.  Since then, she has gradually weaned back down on her rate and is now back to 18.  So we are moving back in the right direction.  Sunday, another bug grew from her respiratory culture (enterobacter).  We are thankful that it is not the enterobacter that is resistant to antibiotics though. 
Today there has been alot going on with other kids in the CVICU so I feel we were short-changed a little in "rounds" this morning because the few people that rounded on Reagan couldn't answer many of my questions so I asked that they re-round with the attending, Dr. Roth.  Well, needless to say, they finally did, but it was 4:30 this afternoon so I feel like today was a wasted day due to not being able to come up with a plan and make changes for Reagan toward her progress.  Also, Reagan was started on a broad-spectrum antibiotic (meropenem) on either last Fri. or Sat.  Once we found out on Sat. that she specifically had H flu, Dr. Roth said he thought there was a more specific antibiotic to treat that.  So, Sunday, she was started on that more specific antibiotic (something that starts with a c- can't pronounce it).  And I was told she would specifically have to be on this one for 14 days per i.v.  Well, this morning I come in to find out that the fellow overnight stopped this antibiotic and restarted her on the meropenem because she spiked a fever last night.  Needless to say, I was livid that this change was made after we specifically decided she needed the other antibiotic and for a 14-day course.  Then, when our "rounds" got pushed to 4:30 this afternoon just gave me more time to brew over the change.  Just awhile ago, I finished rounding with the complete team and spoke my mind about the situation.  I said, "Just so that everyone knows where I'm coming from, each 24 hr period we sit around and don't make changes toward moving forward on Reagan's progress is another 24 hrs. our family doesn't get to be together.  It was my understanding that we were specifically on the c antibiotic for the H flu.  Yes, she spiked a fever but with Reagan sometimes she does things that don't ever amount to anything so rather than making what seems like a small change to her antibiotic based on a fever- I want changes based on facts and not assumptions from here on out because what seems like a little change now means that we have to restart our 14 day course over again on the antibiotic she should have stayed on to begin with.  Also, as far as the ventilator goes, the longer its in the more prone she is to infection and so I want to aggressively move toward extubation and not just make small changes everyday.  I want changes made every few hours based on her tolerance of the changes and get that tube out sooner than later."  They were all quite apologetic and seemingly compliant to my requests so we'll see how things go from here on out. 
Because of Reagan's fever, new blood cultures were sent and as of now (24 hrs.) nothing has grown but we have to wait until 48 hrs. to make sure.  Also, another urine culture was sent today and it has already come back negative so hopefully, we are still just fighting the H flu and enterobacter bugs in her respiratory tract.  Infectious Disease team is supposed to contacted to see if by changing back to meropenem overnight made us lose any of our time on the 14 day course we had already started.  Also, once Reagan gets extubated her central I.J. line and art line can be removed which are good because of risk of infection but that will only leave her with one p.i.v. which is going bad and may not even make it overnight.  The PICC team is going to be contacted about starting a PICC line for her to receive the antibiotics through for the remainder of the course.  Let's just continually pray that her PICC does not get infected.
Now, on to more of a positive note, I wanted to thank our next door neighbors, the Bradleys, for paying to have our yard mowed for us.  Rod and Nolan just got home last night and after two weeks of not being mowed it was in need of a good haircut.  Thank you so much for taking care of that detail for us so that Rod can focus on work, Nolan & his girls back in California. 
Also, my heart mom friend, Victoria Nelson, showed up for a surprise visit yesterday just to give me a hug and brought me lots of goodies to munch on.  Thanks Victoria for your sweet spirit!
Many of you also have sent Get Well email wishes via the Lucile Packard website.  We appreciate them all and they are hanging on Reagan's wall of support in her room.   Also, thanks to Nan & Pop for the get well card and Dora stickers for Reagan. 
Thank you all again for your continued support & prayers.  Just thought I'd share with you how important your prayers are to God:

 Prayers are Precious Jewels

"The Lord sees the good people and listens to their prayers."
1 Peter 3:12

You and I live in a loud world. To get someone's attention is no easy task.  He must be willing to set everything aside to listen: turn down the radio, turn away from the monitor, turn the corner of the page and set down the book.  When someone is willing to silence everything else so he can hear us clearly, it is a privilege.  A rare privilege, indeed.
(Your) prayers are honored (in heaven) as precious jewels.  Purified and empowered, the words rise in a delightful fragrance to our Lord...Your words do not stop until they reach the very throne of God...
Your prayers on earth activates God's power in heaven, and "God's will is done on earth as it is in heaven."....
Your prayers move God to change the world.  You may not understand the mystery of prayer.  You don't need to.  But this much is clear:  Actions in heaven begin when someone prays on earth.
                                                                               The Great House of God

Taken from Grace for the Moment by Max Lucado

Our first and hopefully last setback

Last time I updated things were going in the right direction.  Reagan was getting tubes and wires out, getting close to getting the breathing tube out, etc.  Well, Saturday morning things changed.  Last Thurs. or Fri. night Reagan spiked a temp and they sent blood, urine and respiratory cultures at that time.  Sat. morning her respiratory culture came back positive for H flu (haemophilus influenzae), a type of pneumonia.  Steroids and a new antibiotic was started to treat the H flu bug.  All day Sat. as the day went on her breathing became more labored and by nightime she was super wheezy.  Rod and I ended up staying at the hospital Sat. night until around 1:00am because she was worrying us with her difficulty breathing.  Finally, the head attending, Dr. Roth, came in, accessed Reagan, made his recommendations for course of action and reassured Rod and I that she's not the worst she could be and that we should get some sleep.  He said she was having really bad asthma probably due to the H flu.  She's always had asthma that flares up here and there but with this new bug on board it was just worse.  They started her on round the clock albuterol to help open up her airways in addition to her breathing treatments every 8 hours.  They added a new diuretic because she was more puffy and retaining more fluids and upped her ventilator settings significantly.  Her breaths in were fine but in trying to exhale she simply could not release all the CO2 because of her airways being so tight from the asthma. By this morning, her breathing looks so much better. She is still on the high vent settings and has pretty much just hung there all day to give her lungs a break.  Hopefully, tomorrow we can start coming back down on her vent settings and moving more in the right direction again.  This, of course, put a damper on our weekend as Rod and Nolan leave Monday morning to go home. Rod was not able to hold her as we had hoped but we are just so thankful the measures they took last night have helped her breathing to become more comfortable. The new antibiotic started for the H flu bug is a 14 day course per i.v. so I know we will be here at least another 2 weeks. Hopefully, this will be our last stepping stone and we can get home after dealing with this. 

As a distraction from all the drama at the hospital, Rod, Nolan, Lonny and Kyle (Lisa Shirley's son- our friends that live here in the Bay Area) drove up to Mt. Tam for a day of hiking on Friday.  They enjoyed driving across the Golden Gate Bridge on their way and seeing all the beautiful scenery at Mt. Tam. Here are some pics from their big day of hiking:

Nolan with the Golden Gate Bridge in the background (quite a foggy morning)

Kyle, Lonny & Nolan

Nolan & Rod

Nolan & Kyle climbing a ladder on the trail

They took the 4-5 mile trail so needless to say, they all slept well that night.

Then, on Sat. morning Kyle had a t-ball game and invited Nolan to join him so Nolan played in his first t-ball game.  Afterwards, he went back to Kyle's house for lunch and a playdate for the afternoon.  I was able to  go to the game that morning and watch.  It was a nice distraction for all of Reagan's issues going on. 

Kyle & Nolan outfielding

The boys waiting to bat

Thanks Kyle for a fun weekend together!

Also, we want to thank the Ceniceros family for the gifts you sent out with Rod.  Dylan & Alexis's pictures they colored for Reagan have been hanging on her wall ever since surgery. 

Also, a huge thanks to the Domiccio & Paino family for the California Pizza Kitchen gift cards.  We have already used one and will definitely be using the other very soon.

More Things to Check Off!!

Hey everyone, Just wanted to let you know about more good things going on with Reagan.  Yesterday, she was able to get her wires out that measure her PA & LA pressures. She was also able to come off of another med (dopamine) that she's been on since surgery.  She's up to 15ml/hr on her formula and doing well. In getting her feeds, she's now able to get chloryl (a sedation med that works well for her).  So, she has been much more comfortable and calm....not "waking" as much which is so much easier to watch than her fighting against the breathing tube. Yesterday, after a dose of chloryl, I was able to wash her hair as best I could.  That was really the first time since surgery that it had been washed and was starting to look like a rat's nest.  I'm so glad I was able to wash it while she was out of it because it still had blood in it from surgery.  Nasty, I know.  She just looked so much better with clean hair & all those tangles out.

Yesterday, they took her catheter out but then she didn't pee like they wanted her to so overnight the catheter was reinserted.  Hopefully, she will start peeing better so she can get it out for good and not risk a urinary tract infection.  This morning, the surgical team removed both of her chest tubes and she is sleeping soundly from the sedation from that procedure.  Her x-rays have not looked great (which Reagan's never do) so they are agressively working to try to clear her lungs with breathing treatment meds, CPT, suctioning and moving her from side to side.  Reagan is so strong she can cough stuff up on her own so I hope they do not leave the breathing tube in any longer on that account.  She is doing well with the wean they have been doing on the ventilator and is actually taker more breaths on her own than the vent is for her.  This is a step in the right direction.  They are talking about possibly having her extubated over the weekend.  I pray sooner than later as Rod and Nolan leave on Monday and want Rod to be able to hold her before going home.

Thank you all again for your continued prayers!  Baby Arden's surgery was successful and now her oxygen levels have been much better.

Want to say a special thank you to the Farester family for the goody box we received.  It contained snacks, playdough, and a yellow squishy ball.  Reagan loves the color yellow and loves balls so I cannot wait for her to wake up and be able to play with it.

1 Week Ago...

Can't believe that one week ago Reagan was in her marathon surgery. She has been doing so well ever since.  Today, she has made good progress as well.  She was able to come off of one of her heart meds (epinephrine) and has been doing good.  Also, since chest closure yesterday, we have been able to position her on her sides and it has truly helped mobilize alot of secretions in her lungs.  After laying on her back for a week, she's got alot of "junk" in her lungs she needs to clear.  Even on mega doses of sedation, she still "wakes" and coughs up this stuff.  She is so strong!!!  Also, they are trying to get her off the TPN she has been on since surgery so today they started slowly feeding Reagan through her g-tube.  At first, they started with Pedialyte and her tummy tolerated that so now she is getting small amounts (5ml/hr) of her formula.  This is to hopefully get her gut moving again after a week of being idle.  In addition to all this, they are weaning her down on her ventilator settings.  Hopefully, we can get that thing out very soon because Reagan is so miserable with it in.  She grinds her teeth on it and it is so hard to watch. Tomorrow, the surgical team is planning on taking out two wires that have been in place measuring pressures in her heart.  I feel like today has been a day of checking off many things on the recovery list.  I am a list-maker at heart and so it thrills me to be able to check some of these things off!!
Our friend, Lisa Shirley, came by the hospital today and brought us a ton of goodies as well as lunch.  Thank you so much Lisa.  You are the greatest!!
Lastly, baby Arden's surgery today got postponed until tomorrow.  So, please continue to pray for her to remain stable overnight and that it is a successful surgery.

Chest Closure

Just wanted to let everyone know Reagan got her chest closed today around noonish.  She did wonderful for the procedure.  Her LA pressure that they were concerned about got down to about 11 or 12 by morning.  They said it would rise 4 or 5 points after closure but when we were able to go back and see Reagan after the chest closure her LAPs were only 13.  So, again, God is good and in control!  She did better than they were expecting.  She has been asleep most of the afternoon due to the anesthesia from the procedure but has remained stable all the way through. 

Please be in prayer for our heart friends, the LaPointe family.  Their daughter, Arden, has been having complications since her heart surgery last week.  She is currently in the cath lab and they're exploring her heart to see if they can find what's causing this.

(Reagan with baby Arden before both their surgeries )

Thank you all again for your prayers!

Post-op Day 5

Reagan remains stable.  Her chest is still open.  They were not able to close her over the weekend.  They were aiming for today but still not ready.  She has drained off alot of fluids (she's starting to look like a skeleton),

 but the surgery team wants her LAP (left atrial pressures) to be lower before closing her chest.  This is really the only thing preventing chest closure. With each day with an open chest, the chance of infection rises so PLEASE pray specifically that her LA pressures will come down to single digits before tomorrow so she can get her chest closed.  Also, we have had huge issues trying to keep her sedated.  She has been waking up several times a day and is on really big doses of sedation meds but it's like water to Reagan because she's had it so much in her life.  Please pray they can sedate her adequately so we do not have to watch her suffering.  It is so hard to see your baby with an open chest, breathing and chest tubes in and trying to sit herself up in the bed all while real tears are coming from her eyes.  One time yesterday when she "awoke" she reached for her breathing tube which was extremely scary.  We are thankful for her fighting spirit but would rather she rests a little bit and save that energy for once her chest and breathing tube come out!! (HA)
Thank you all again for everything!!

Happy Mother's Day!!

Happy Mother's Day to all you moms out there. Things here are going well.  Reagan remains stable.  We are shooting for chest closure in the morning (Mon). She is continuing to pee all the fluids off which is what we need to be able to close her chest. Her blood pressure has been alot more stable and not so up and down. All in all, for what she went through, she is doing great!!  Thank you all for your continued prayers for her recovery.
As far as spending Mother's Day in the hospital/RMH.  Not as bad as you would think.  The RMH had many special activities planned today.  They handed out beautiful flower arrangements and goody bag to all the moms.

flowers with potpourri sachet

gift bag goodies (lotion, nail polish, and makeup)

The RMH had crafts for the kids to make for their moms.  Here's Nolan making me a hand-painted flower pot complete with real flowers

then he made me a card with his handprint on it

just so glad we could be together!!

Praying Reagan remains stable and we can all go out for a nice dinner together.

Post-op Day 2

Reagan is doing good!  She is remaining stable.  After two chest washouts yesterday, her bleeding has substantially slowed down which is terrific.  She has not had to receive any blood today.  Whereas yesterday, they were chasing their tails trying to replace all she was losing.  Today, they have mainly been working with her pacing wires trying to get her heart rhythms in sync. Where her VSD (hole in her heart) was closed is right where the signals fire to tell the heart to pump.  They explained it like this....just like when someone has a brain injury and their body has to develop new pathways to send signals- they are just helping her heart along for now until her body figures it out....not a big concern for now.  She really has had a very stable day.  We are so thankful!  They are still working to get more fluids off her and talking about possibly closing her chest Sat. or if not, then Sunday. That would be wonderful! Thank you all again for your many encouraging comments, prayers and support.  We live to check for new comments so keep them coming!

Surgery Update

O.k. I still have only had 4 hrs. of sleep but I am going to attempt to explain Reagan's marathon surgery from yesterday. Rod and I had planned on taking a nap today but Reagan has kept the drs. busy so we've stayed around the hospital all day to make sure things were o.k.  First let me start by saying she is o.k. and was able to receive her complete repair.  Wooohoooo!!! It is so weird looking at the monitor and seeing her oxygen levels at 97,98,99 & even 100.  She has never in her life had oxygen levels like this before.  She is a little pistol with oxygen sats in the 70-80s.  I cannot imagine what a handful she will be now that she gets oxygen like you and I.
Needless to say, yesterday was a long, grueling day for us.  We dropped Reagan off about 7:30am and weren't able to see her in CVICU until 2:45am.  Dr. Hanley spoke with us prior to going into the OR yesterday and Rod asked him if he thought it was going to be a marathon day, as all of Reagan's surgeries have been.  He actually said, "No, hopefully I might be out by 3 or 4pm."  Around 11:30am and then around 3:30pm we got an "update", if that's what you want to call it, just telling us things were going fine in the OR.  Then around 5:00pm, someone told us that they were able to do the complete repair and were just working on getting her off bypass but that it still might be 2-3 hrs.  We felt so relieved until 2-3 hrs. passed and still no Dr. Hanley.  Then around 9pm someone else came out and told us things were fine and they are talking about putting the patient on ECMO.  I said, "Excuse me, things aren't fine if they're talking about ECMO."  Rod asked if Dr. Ramamorthy was still in there who is the anesthesiologist we have developed a good raport with.  He said he would go get her and have her come talk with us.  Well, by the look on her face when she came out, without any words spoken, I could tell things weren't good.  She said Reagan is just a complex case but that around 6:30pm when they tried taking her off bypass, the heart function was not good, so she immediately went back on bypass and that she had alot of bleeding they were trying to control. Dr. Hanley was working to try and figure out why the heart was not pumping as it should when taken off bypass and that he was going in to explore her coronary arteries and discussing putting her on ECMO.  Dr. Ramamorthy then looked at Nolan and asked when bedtime was and said to us "you might better get him to bed".  In other words, it was going to be a long, hard night. MiMi and PawPaw (Jen's mom & stepdad) then took Nolan back to RMH to get him to bed.  Rod and I both lost it as soon as Nolan left and began praying for God not to take our sweet precious girl like this.  After spending my time crying lying face down in a dark room, I finally was able to update you all out there who stayed up clinging to every update and praying for us.  We so appreciate you guys!!! It was late already here in CA and all of you were hours ahead of us and yet still followed along with every update, leaving us encouraging comments.  We love you all and can't say thanks enough!
After getting Nolan to bed, PawPaw Lonny stayed with Nolan and my mom came back over to the hospital.  Mom, Rod and I all sat around talking about it and could not figure how her heart function could be bad when she was jumping on the bed over and over again until she was out of breath, the night before surgery. Something had to have happened because this little girl is too strong for a surgery to knock her down. After much talk and worrying, Mom finally started working on her computer to get her mind off things, I finally was able to close my eyes while laying on the floor, amidst the cleaning crew trying to clean the waiting room and Rod couldn't stop pacing the floors.  Every time the cleaning crew came through the door we thought it was going to be Dr. Hanley but it never was. After losing track of time and Rod, he literally disappeared on us, I hear the door open and Rod comes running in with the biggest smile on his face and pumping his fist into the air saying, "She's good, she's good."  Mom and I jumped up saying, "How do you know?"  He said, "I had had enough and had to find out what was going on so I went up to the CVICU because they are in contact with the OR so they'll know when she's about to come there.  Rod ran into the ICU attendee and said "Where is she, where is Reagan and what the heck is Dr. Hanley doing in there?"  The super nice attendee, Dr. Ziebrak, lit up and said "she's good, they're almost done and she's about to come to CVICU."  Rod said, "Is she on ECMO because last we heard she was going on ECMO?" Dr. Ziebrak said, "No, she's not on ECMO, she's off bypass and Dr. Hanley is just watching her numbers and making sure everything's good before bringing her to CVICU."  We all about fell to the floor when hearing this news and just then we looked up and Dr. Hanley was walking through the door in his normal cool, collective style. (For those of you heart moms out there who know what I mean) We all sat down and he then began telling us the saga of the OR.  He gave us the rundown on some of Reagan's arteries and veins that he had to work on first that had some narrowing in them and then he performed the complete repair part of the surgery in which the hole in Reagan's heart was closed & a pulmonary valve and conduit placed. At this point, he tried taking her off bypass and for the first minute or two she was good and then her numbers dropped so immediately put her back on bypass. He then began looking at her coronary arteries which are the arteries that supply blood directly to the heart muscle itself so it can pump.  It is then that he discovered that like almost everything else about Reagan's anatomy, her coronary artery pattern was not normal either.  One of the arteries branches off from the left and comes diagonally across her heart back up to the right side. This is exactly the place where Dr. Hanley makes his dissection of the heart in order to do the complete repair.  It is then he realized he had severed this coronary artery during the dissection and did not know at the time because it was hidden by scar tissue.  Dr. Hanley then did what Dr. Hanley does best and worked a miracle.  He then peformed a Coronary Artery Bypass Graft on Reagan to fix the severed artery.  He said this is the same surgery someone would have who suffers a heart attack.  He used her own tissue so nothing further will ever have to be done with this.  It should grow normally with her as she grows.  Once the coronary artery was back intact they took her off bypass again and her heart performed beautifully.  He said due to such a long surgery, her recovery will be longer than he was initially anticipating but that she's good and stable for now and they will be watching her closely. After his explanation, he asked if we had any questions and Rod said, "I'd like to know what word you used when you discovered you severed her coronary artery".  Dr. Hanley just smiles and said, "You don't want to know what word I used---expletive deleted!"  We then told him "thank you so very much and to go get some sleep".
Finally, at 2:45 we were able to go see our sweet baby- she is such a tough little girl!

As far as overnight and today, Reagan has had some excessive bleeding issues. They have had to take the sterile drape off her open chest twice today and flush out all the extra blood to see where it's coming from.  Both times they never found anything other than alot of oozing.  Then one of her chest tubes clogged up and the blood starting pooling under her sterile drape.  The second time they went in and flushed things out, an additional chest tube was placed.  Dr. Hanley is pleased with her output now from the chest tubes, not too much but just enough. Hopefully, this bleeding will begin to slow and heal. Also, earlier today Reagan's blood pressures were on the lower side so they have been using her pacing wires to send signals to the heart to correct for this.  We are pleased with her day and that she has remained stable.  Please pray for a good night and that we can catch up on our rest as well.

Thank you all again for all your support!!