Reduction to Aubrey's Medication

Aubrey had some of her medicenes reduced. Primarily the diuretics. Dr. Gandhi said she is looking really good.

Posting of last few pictures.

Jennifer and I wanted everyone to know how appreciative we were of everyone that posted comments, sent e-mails, and followed Aubrey's story on the blog. In what was one of the more stressful weeks of our lives, however, we had many shoulders to lean on. My Mom and Grandma Shiori were a huge support helping out with the boys. Several people brought us meals and snacks. More importantly, they brought smiles and their friendship.

I am also posting a five minute slide show I did back in April, recapping Aubrey's first three years and the first round of surgeries.

After this post, I will remove the automatic e-mail updates. We will continue to post to the blog, so bookmark it or include it in your favorites. That way you can be sure to tune into the next wonderful things our kids do.....and the fourth child!!

My final thanks goes out of Jesus Christ.


The first three years video.


This past week video.

First night went fairly well

We were only up a dozen or so times last night. It doesn't help giving her Lasiks to make her get rid of fluid. We will see how tonight goes.

I ran around all day catching up on things. Especially getting her prescriptions filled. I managed to go to the Scout Store to get some of my stuff for this week. I just ran around trying to get caught up. Tomorrow I need to mow the grass and get caught up on reading.

One thing for tonight............sleep!!!!

We are home

After a tiring drive we are home.

Aubrey lit up when she saw her Baby Evan and so did he. Dylan came in from riding his bike and helped carry in things.

Jennifer is upstairs resting and I am thinking about it too.

Time to get caught up around the house.

Our follow up appointments begin next week.

There is no place like home!

Green Light to go home

We just ordered Aubrey's "last meal" consisting of Pizza and fries. Whatever she eats, she eats.

She finally had a poopy diaper and thankfully it was here and not in the car.

We do have a lot of pharmaceuticals to go home with.

Very little restrictions. Pretty much no high public areas for the next few weeks and watch the incision area. They will leave her without a dressing over it, providing she is not scratching it.

Not even seven full days! Can you beleive that?

Going back to my Wyatt Park Christian Sunday School class and our study on the book of Romans. "From him and through him and to him are all things. To him be the glory forever! Amen."

Regardless of the outcome, all things are to his glory. The high points and the low points and everything in between should glorify him. I remember a sermon by John Piper up in Minnesota and he spoke about not all things are easy as a Christian. Actions speak louder than words. For God knows your heart, Psalms 139:1-4. Jesus knew what awaited him (Matt 9:4), yet he still went to that cross. Because of God's intevention and because of him and through him we can have a heart that is pleasing to God.

As we ready to leave the hospital, I leave with a rendition of one of my favorite worship songs from the traditional worship services.

Early morning round of tests

This morning we had a ultrasound, EKG, and an x-ray. They are reviewing everything this morning to make a determination on her status.

Momma slept fairly well in the room, Daddy slept in the car again.

The I.V. is now out

After taking Aubrey down to the Ronald McDonald room, we came back, got settled in, and out the IV came. Since she was only needing the IV because of the antibiotics, there is no need for the IV.

We will know more tomorrow about how much longer we will be here.

Slideshow of Friends

Same with the other videos, you will have to Turn on the sound by clicking the sound button.

Here is the blog update-Correction, Sorry Dina

So when I returned from work, I found out a whole slew of visitors came by with food and gifts and everything. Thanks to Marsha, Susan, and Dina came by and very easily got smiles from Aubrey. Then Lisa and her daughter Julie stopped by.

I walked in and within minutes the third and final drainage tube came out....yeah!

Aubrey did quite a bit of walking today and is set to go to the child play room tonight.

Dylan has to go home and get ready for the first day of school.

I am going to work on Cub Scout stuff tonight and a little work....only a little I promise:)

Drain tube #2 gone

Aubrey did a good job as sge got the second drain tube out. You can tell it is quite painful when they do that.

We are planning on having some visitors today and I will finally make it back to the house.

Status update-Good

Aubrey had a work out tonight. We had a visitor from the MDG, Mark came by and visited. He brought Aubrey a little pony. After he left Aubrey went on a walk and she did great. We then moved to a new room, just a couple of doors down. The Cardiac ICU was overflowing and they were taking precautionary steps with rooms.

When she got back got bakc from her walk, she was worn out and went to sleep pretty quick. So the pony will have to wait until tomorrow.

Since she didn't get the drainage tubes out today, they will look again about 6 in the morning.

We will try to get some rest, this is a wearying process believe me.

Aubrey had two visitors

Two visitors appeared recently. One was Nell and the other was Sadie. Nell is a Dalmatian and Sadie is a Golden Retriever. Nell is coming back to visit on Thursday. The owner had Aubrey decide what Nell's next outfit will be so stay tuned to see Aubrey told her wear.

She walked to the garden

Aubrey walk herself all the way up to the garden and the children's center on the 8th floor. She whined a little in the beginning but she walked all the way there and all the way back.


The will be looking at the chest tubes this afternoon to see if they can remove one or both.

Getting ready for a long walk

Aubrey is finishing up on her breakfast of eggs, french toast sticks, and sausage. Then we are breaking out of 7W and going to the 8th floor for a walk.

She is very reluctant, but hey that is why Dad is here.

I slept in the car in the parking garage last night and Jennifer stayed back in the room on the fold out bed.

We are looking at having the chest tubes removed a little later.

What adventures await us on our walk? Stay tuned.

Slideshow of hospital pictures

TURN THE SOUND ON!!! Click on on the speaker button in the slideshow once it begins and remove the red mark from it.

All is well

Aubrey is taking a much needed nap after this morning. We pushed her pretty hard and finished up a good lunch.

Momma to a nap also.

They just pulled out her chest tube

They just pull out the pacer wires and the medial chest tube.

I am glad Jennifer missed out on the excitement.

All slept well

Aubrey slept well last night and is looing better each day.

This morning she had a pancake and chocolate milk. She is taking her mediation my mouth again and they will take out the middle chest tube.

Dr. Gandhi came in said she is progressing well and wanted us to keep her on her recovery schedule of walking around.

Cambrie came by this morning and her and Jennifer went down for a bite to eat.

I am camping out finishing up my Cub Scout training.

Getting ready for bed

It looks as though Aubrey will be sleeping well tonight. We had her walk down the hall today to pick out a movie. She ate some Cheerios and drank Dad's concoction of Cranberry and Apple Juice.

Tomorrow they should be pulling out the chest tubes and heart pacer leads.

Sleep night little girl.

Finally some pictures from the hospital

We have been relocated

Aubrey was just too cute for the folks in the CICU, that administration decided to move her because she was getting everything she wanted.

Seriously, though we have relocated to a new room with more room to walk around and less monitors. Dr. Gandhi says she is progressing well.

One thing that alarmed Jennifer was when Aubrey's heart rate was elevated to 150-160 when she was upset. That is one of the things we will have to work with her on. She has the tendency to hold her breath when she is upset and that leads to those elevations. Of course it adds to the effect she is trying to bring. Hollywood...watch out.

A very long night

Last night Jennifer took off to go sleep on another floor and I stayed back with Aubrey. It was a long night she only slept at 45 minute intervals.

This morning she woke up with a lot of air in the belly. They just finished pulling out over a liter of air. Then they took out two arterial lines. Aubrey likes that because it now frees up her arms.

Dr. Gandhi has been walking the floor making sure his patients are meeting their goals. I had Aubrey on my lap for 30 minutes to get her used to moving around. After she rests we will have her stand up to walk around a little.

We should be moving to another floor sometime this afternoon. That will be good because her mood has been low. It is not like her to not see a smile or anything. Hopefully once more visitors roll around, that will spark her to at least smile. She hasn't wanted to laugh or anything, that may be attributed to the air she had pushing against everything.

Sorry for the delay in posting, everything took awhile this morning.

She is still in some pain

Aubrey has been doing well. They are trying to get her up and about. She is now allowed to drink clear liquids and snack on foods she can tolerate.

Her sats still go off the chart when she holds her breath.

Jennifer and I have managed to play some cards together. This is really good to spend time together, sharing in the stress of having a daughter go through this.

On another note, a couple of the docs and nurses had a hard time today. One of the children down the hall went into cardiac arrest and they weren't able to save them. The family was very distraught, however, the head doc on the floor took it the hardest of the staff. When that happens, like yesterday, the staff really try to limit how much the other parents know. This is done in an effort to keep everyone focused on a positive outcome.

Numbers on the Heart Chart

CVP----Central venous pressure describes the pressure of blood in the thoracic vena cava, near the right atrium of the heart. CVP reflects the amount of blood returning to the heart and the ability of the heart to pump the blood into the arterial system.
It is a good approximation of right atrial pressure, which is a major determinant of right ventricular end diastolic volume.

SpO2----Oxygen saturation , commonly abbreviated as "sats", measures the percentage of hemoglobin binding sites in the bloodstream occupied by oxygen. At low partial pressures of oxygen, most hemoglobin is deoxygenated. At around 90% (the value varies according to the clinical context) oxygen saturation increases according to an oxygen-hemoglobin dissociation curve and approaches 100% at partial oxygen pressures of >10 kPa. A pulse oximeter relies on the light absorption characteristics of saturated hemoglobin to give an indication of oxygen saturation. An SaO2 (arterial oxygen saturation) value below 90% causes hypoxemia (which can also be caused by anemia). Hypoxemia due to low SaO2 is indicated by cyanosis.

Premature ventricular contraction (PVC)

Aubrey experienced a PVC, a type of Arrhythmia. This is kind of like missing a beat. It sets off all sorts of alarms, and freaked Jennifer out. They came in and did a 12-Lead EKG to check things out. They are consulting with the Cardiologist right now.

Her blood pressure has been up

Aubrey has been drinking water and tried a lit of solid food earlier this morning, Jello. She vomited it up and since that time her blood pressure has been aove 90. Dr. Gandhi wanted to start her back on the enalypril. When she took that in the liquid form, she vomited again.

Little thing is sleeping well, however, her blood pressure is still elevated.

Bob

One more day in the CICU

Looks like we will have at least one more day in the CICU. She will have the catheter taken out and can get up and walk around. Best of all she can have solid food, pancakes anyone?

Aubrey has been doing just fine

Aubrey has been doing fine. It is not say it hasn't been without set backs. She "de-sats" very quickly. This is due to her tendency to hold her breath when she is upset. When she does that her oxygen saturation levels go from 90-95 down to 80 and below.

The morphine they are giving her for her incision pain has been causing her to go in and out of sleep, waking up where ever she has been dreaming. Talk about a strange situation.

She has been taking water and ice cubes well. She has laid off Dad about the apple juice and Sprite. However, she continues to prod the nurse and the doctor on it. The nurse though keeps say "calm down and I will get you some." Bob's rule one of parenting is consistency. If not they kid will not let up. Anyway I have always said she is going to be in big time sales because of her persistence.

I pulled the all night duty and let Jennifer get the rest, she needs it more now than I do. I hope she is sleeping well.

More updates to follow.

Bob

She is in CICU

Aubrey is the Cardiac Intensive Care Unit where she will call home for a couple of days. The room is pretty good size, about 20X16. It has two chairs and one folds out so one of us can sleep.
Aubrey looks great and has good color. She has a lot of lines in her and they are weaning her off the oxygen. Her O2 Sats are in the 90's and when she gets upset they drop down, expected though.
I sent Jennifer to find herself some food.

Dr. Gandhi came in

Dr. Gandhi came in and said she did great. The scar tissue from the last operation was a physical barrier, however, Dr. Lofland from Children's Mercy in KC notated that in his post op notes.

Her vitals are great and they will be moving her to ICU in an hour.

Then we wait awhile and then can see her.

Dr. Gandhi is closing her chest

Dr. Gandhi is closing her chest. Her vital signs are good. They will move her to ICU in about 1-1.5 hrs.

So far so good

Dr. Gahdhi has made the final placement of the bypass. They are getting ready to do a TransEcophageal Echo (TEE) to look at the heart before they start closing her up.

They are beginning the procedure

Katy, the nurse, just came in an gave us the notice they are beginning the procedure.

They just took her in

The anesthesiologist, Dr. Kelly Chilson, and team of nurses just took her back. It took her a while after she was given the versed and seemed wide awake when she went back. They were commenting on how raggedy her Raggedy Ann doll was.

Will post at the next update.

We have the green light for Surgery

We met the team that will be doing the surgery. It was a long day and I have forgotten how long and stressful these days are.

We met up with the Mary the Cardio Nurse who got us started with the EKG. Then it was off for a short tour. Then off for a chest X-Ray. Then off to the Lab to get blood drawn so they can match it for surgery.

Then we managed to get a bite to eat, then off to same day surgery. We met the anesthesiologist and then finally met Dr. Sanjiv Gandhi.

We will need to be at the hospital tomorrow at 6AM. The surgery will last about 5 hours with prep and post not included. A long, long day tomorrow. We will have posts while we are in the waiting room getting updates from the nurses and docs.

Getting ready to go get checked out

We are getting ready to start. After Aubrey get's the green light we will be admitted tomorrow.

They will check her out and it looks as though we will be eating lunch there. It will be a pretty long day.

Please continue to prayer for my little girl.

Kory and Morgan made it in

Uncle Kory and Morgan made it in to spend the weekend with us and the kids before Aubrey's surgery later this week.

Things seem to busy around the house. I am still working on finishing my Crown Financial Online training and getting ready for Cub Scouts to begin.

Wow and to think we have baby number 4 on the way!!!!