One Week Post-Surgery

Vivian has been busy today. She got her PIC line put in her leg this morning. The procedure took a little over an hour, and she got her EJ line out of her central vein in her neck. They gave her all new drip lines. Directly after that our wonderful cardiac nurse practicioner Tina arrived and removed Vivian's surgical dressing from her chest closure. It's now open to the air for healing. She also removed ONE of the three chest tubes--this one was in the sac around the heart. (The other two go to the lungs).

Also, I didn't realize that yesterday Vivian was taken off two of three of her blood pressure meds and is tolerating that well. She remains on one called Norepi. They are forecasting taking her off the breathing vent in 3 or 4 days.

So...this has been a good day so far! Positive direction for Vivian. Her IV pole has three pump stations on it instead of four so that looks like a step in the right direction.
That's all for now. Ken and our boys are at home today catching up chores and household needs.
Love, Keri

Resting and Healing

Today has been a day of resting and healing like the title says. Vivian did get her TP tube in. It took three tries and using a smaller tube to get it to work. Now she is getting feedings that put formula right into her small intestine. They have to start very slow, so Vivian gets a half teaspoon every eight hours.

She also had an EKG of her heart today, and they were studying her for awhile. They are looking for any narrowing of her arteries along the suture lines. I'm not sure how often they will do these, but it could mean she would need a heart catheterization while here.

Overall, Vivian is doing well. There's things here and there that get out of whack and need to be adjusted. She just has a long road to go. It's hard to get a feel for that without being here, but she's been on strong narcotics for a week now, blood pressure meds, supplimental oxygen and nitric oxide in her vent. So, keeping her balanced and weaning her and making sure her heart responds well is not just a straightforward path.

As for us we miss Vivian's personality we haven't seen for a week. I sing and read and talk to Vivian, and she does know we are here. I comfort her when she "cries" which she does by making a cry-face and shaking her body. However, I haven't changed a diaper in a week or fed her meals. And, with her sedated, I have freedom to come and go from the room. As Vivian gets better, my end of supervision and care will greatly increase. The one-to-one nursing care round the clock is so nice that I better start preparing now for the "shock" of the regular peds floor!

Tomorrow I am thinking about taking a bus over to the Walmart to do a little grocery shopping and utilize the hospital refrigerators since the cafeteria is getting so expensive.

Thank you for your continued prayers and support. Love, Keri

An Evening at the Spa

Okay, so not exactly what one would think. Our night nurse Laura spent a couple hours giving Vivian a much-needed sponge bath and washed her hair too. She changed Vivian's patches around and put ointments on to protect her skin abrasions and chapped areas. Vivian apparently enjoyed the scalp massage because she relaxed into it and dropped her blood pressure a few points. Nurse Laura changed Vivian's bedding and shifted her to a new position.
So, Vivian should be ready for another resful night. The next big milestone is going to be working her medications down and getting her ready to prove she doesn't need so much oxygen and nitric oxide to keep her pulmonary arteries relaxed and blood flowing.

Oh and we are on hospital schedule too, so things don't always happen when they say. They did not do the line replacements today. That goes on the list for tomorrow.

Funny story from last night...Our night nurse-the same one--put Vivian's Elmo doll in her hand and its body and head sort of rested against Vivian's torso. Well, this toy normally opens its mouth when you shake him and he talks or makes noises. So the respiratory therapist comes in to check Vivian's breathing. Every time Vivian takes a breath, Elmo's mouth opens just slightly and closes again. It's not enough to trigger the classic Elmo noises, but it was hilarious because it looked like Elmo was breathing right along with Vivian. It surprised the therapist because she couldn't figure out if the toy was turned on and mimicking Vivian's breathing or what!

Finally, I cut short on my update earlier, but we enjoyed company from a friend from church and from Ken's sister Denise and husband Todd and their kids Zach and Kate. We shared lunch together and visited and took all our active boys to a park near by for a couple hours. A fun time had by all.

We are forcasting a couple more weeks in the hospital. I am wondering if our hospital stay will be the same or longer than our travel to China?

By the way, today when the nurse was cleaning out Vivian's mouth earlier today, she was a bit awake and pursed her cute little lips together to refuse that when the nurse tried to go in a second time. It touched my heart to see a glimpse of our sweet little Vivian.

I'm off to bed now. Ken and the boys are spending the night again here in a "hotel-style" room here in the hospital available to families for a small fee. I hope these posts are keeping folks updated. I'm better at writing a conversational letter to a specific person rather than a message into cyberspace. Love, Keri

Productive Morning

Good morning,

Well, Vivian had a very good night last night. It was quiet which was good for both Vivian and me. It can get a little nerve-wracking for mom too, and it did yesterday afternoon when I left for an hour and returned and Vivian was having blood pressure issues.

This morning at 8:15am Dr. Davis was here to close Vivian's chest. She tolerated the procedure very well. In other words her heart handled the new and normal pressure of a closed sternum!

She has to get a couple of line replacements today and otherwise just rest. We will be in the PICU for another week to two weeks. I am hoping the majority of our stay will be the PICU then, and a short stay on a regular floor til we go home. Like they say, we are all working on Vivian's time schedule--she's in charge!

We are enjoying a visit from our nephew Zach today too!
Thank you for your prayers.

Change of Plans...

We had been waiting for Vivian's surgeon to complete another case today, and during that wait, Vivian had an episode with her blood pressure being unstable while they were working on weaning from meds and giving other meds. She is a tricky girl to work with.

Between those things, the small surgery to close her chest is planned for tomorrow morning after rounds. So the goal is for Vivian to have a quiet, restful night.

Love,
Keri

Busy Day for Vivian

Monday, June 27, 2011

Vivian had another restful night with just one blood pressure spike around midnight. The spike means that she was "awake" under her sedatives and not happy about things. No surprise there, she has something or another inserted in every orifice and every limb and her torso!

It's already 11:20am now. In a few minutes Vivian will get a TP tube which goes from the nose through tummy into small intestine. This is a nice option to be able to start giving Vivian some formula which will go directly into her small intestine that she can digest, and there are no worries about her aspirating while on the breathing tube.

And the Big News! After lunch Dr. Davis will come up to her room here and close her chest! Vivian looks really good and is tolerating being shifted around. I am not sure how long that surgery will take, but it also will be done here in the room. She will have to recover a bit after that i.e. her blood pressure returning to normal, etc.

And, the kidney doctors have been in to check on Vivian just a few minutes ago. They are very, very pleased with her kidney function resuming so well because they did suffer with the heart surgery.

Lastly, Vivian has woken up several times today and maintained her blood pressure instead of it spiking which means she is waking up a bit but is not "freaking out" about her situation. That is ideal so she can wake and drift back into sleep while remaining calm.

Please pray for Vivian's chest closure to go well and her body, specifically her heart to tolerate the new and normal pressure. Love, Keri

Having a good and restful day...

2pm Sunday, June 26th
Vivian is doing nicely again today. From morning rounds they said her kidneys are functioning well enough that no other intervention is needed besides the tube that was inserted yesterday. Her heart rhythm is still working to get to a normal timing. Her chest is still open, so I can see part of her heart muscle beating and the one of the patches that was done in her repair. After several days to acclimate to this site, when I look at it now, I am so thankful God created our amazing bodies and knit them together. Tomorrow Dr. Davis will be by to check Vivian's chest and see how close it will be to being closed. Love, Keri

Naughty and Nice

Vivian had a good night last night. She keeps the staff on their toes in general by trying to wake up. We see this when she tries to lift her arms which are loosely constrained and her facial expression shows she is upset. Daddy and mommy have both been able to comfort her by talking or singing softly to her while she receives an extra dose of sedation meds.

Last night at 4am Vivian was "naughty"--she overrode the breathing tube and was carrying more workload and threw the monitors out of whack. They spent some time settling her back down. I can't recall exactly what they did, but it was not an emergent situation. They just don't want her body to work that hard yet. The nice side to me is that Vivian is trying to tell us she wants off these machines and to go home and play.

Rounds for Vivian are next so will update later.
Love,
Keri

40 Hours Post-Surgery

Vivian had a good night again overall. One concern about her is she has been collecting fluids in her periteneal cavity. That is the sac inside the body that contains the intestines and the stomach. Vivian bloated up quite a bit. Also, her kidneys have taken a hit from the extensive surgery. (We had arrived with the thought of a 6 hour surgery, maybe 8 tops but couldn't believe 12 hours).

This morning at 11am a tube was then added to help drain the fluids off the periteneal cavity and relieve the kidneys. The medical staff will evaluate tomorrow whether Vivian will need a kind of dialysis called renal replacement therapy, I think. So far though she is producing lots more urine, so as odd as it sounds, I am excited about that!

Also, Vivian had something called a strut placed in her chest to hold it open. Dr. Davis also removed that this morning at 11am. That is a step in the right direction for Vivian's chest getting closed.

It was interesting because Vivian's PICU room also can act as a mini operating room, so these procedures were done right here and took about an hour.

We ask for continued prayer specifically for Vivian's swelling to decrease in her chest cavity and for her kidneys to be able to heal and resume normal function.

Mom (Keri) is staying at the hospital, and Ken is commuting to also be with our boys. He did stay the first night after surgery. We are grateful to Grandma and Grandpa Van Zee for taking care of our boys during this time.

A Few Pictures

The day before surgery with Dr. Davis, the cardiac surgeon, and Tina Davenport, a nurse who was our primary communication during surgery.

Sitting with Mommy the morning of surgery, just before going to the O.R. Vivian was interested in the duck in the picture behind her.

Friday morning, the day after surgery. Lots of tubes and wires and monitors. They had to give Vivian a little extra sleepy medicine because she was being her normal, feisty self (wiggling her arms and legs, swiveling her hips).

2 Bumps in the Road, but a Good Night

Vivian was brought back to us, in the Pediatric ICU (PICU) at 9:00 last night. We already knew about the first bump in the road, which was that her VSD patch had to be reopened because the pressure in her right ventricle was too high. We talked with the surgeon and he said that he removed about half of the patch, because it would have taken longer to remove more and they wanted to get done as quickly as possible and have a very, very small chance of needing to put her on bypass a third time. Looking longer term, we now have to wait for months or even years to see how her body responds once the effects of the surgery (especially the bypass) wear off and whether the pressures in her heart will adapt and allow the VSD to be closed.

The second bump in the road is that when they closed her up the pressure in her chest was too high, due to being open for 11 hours and on the bypass machine for about 6 hours. They therefore left her chest open (which is not uncommon with infants or very small children like Vivian) and it will probably get closed in about 3 days. This means a longer stay in the PICU and probably a longer overall stay in the hospital.

Vivian did have a good night and has remained stable throughout. The medical staff is confident about her recovery from the surgery.

We are amazed by our little battler and praise God for placing her in our lives.

They Took The Bed...So Almost Done!!

8:25pm The nurses have left to go get Vivian from the O.R.! This is not a simple task, so they will probably be back up here around 9pm or so. And, I guess there will be an entire team of medical folks too. We'll be meeting with them when they arrive, so that's why I'm writing now.

Keep praying for her recovery please and our stamina!

Love,
Keri

The Twelfth Hour...

It has now been twelve hours since Vivian was taken back, and we are still waiting. Earlier this evening (5:55pm) tThe surgeon was bringing Vivian up off the heart-lung machine, and the pressure was getting too high in her right ventricle...so back onto the bypass machine she went. Dr. Davis had to go back in and put a hole in the patch between the ventricles to relieve the pressure. It's possible the patch could have to be removed altogether.

7:30pm Well, we just got the good new that Vivian is now off the heart-lung machine. Now they are monitoring Vivian for the oozing type bleeding to stop. They have currently told us Vivian will be back here with us in the PICU about 9pm. The nurses are referring to this as a "big case."

We are surprised by the length of the surgery and are anxious for the news updates we get periodically. And, we are a little tired...a long day.

Hope to post again soon about confirming that Vivian is done.

Love,
Keri

Still In Surgery

4:15pm We got a report that Vivian is still doing well, but it will probably still be a couple more hours. Dr. Davis is still stitching up the areas on the aorta where the vessels were removed. Then he will work on placing the valve. And, of course, he will monitor everything afterwards for a period of time.

If you are led, please include my (Keri's) dad in your prayers. He is struggling with extended illness and may need to be hospitalized. My dad Larry and Betty live in WY.

Love,
Keri

Heart Surgery - June 23, 2011

After too long of a break, we are back on the blog. Good intentions don't add up to communication, so we will have to catch you all up on the progress and milestones Vivian has accomplished this last year.

Right now as we speak our dear precious little girl is in the middle of a long surgery which will help her heart and lungs work more efficiently and let her get onto those more important things like running and jumping and playing like a toddler should enjoy!

Here is the "breakdown" of Vivian's day so far:
5:25am Pick up a little sleepyhead out of bed and slip her into the van, jammies and all!
6:15am Arrive at University of Iowa Children's Hospital and check in
7:15am Daddy carries his sweet girl in his arms right into the O.R. and holds her while she gets her "sleepy air."
7:15-9am Medical staff in O.R. prepare Vivian for the surgical portion. Lots of lines and tubes must be in place to help her body function and be monitored through this big surgery.
9am The cardiac surgeon Dr. Davis arrived in the O.R. to begin his work.
9am-12:30pm Dr. Davis meticulously located, sorted and separated Vivian's blood vessels to prepare the two arteries to be detached from the aorta and attached to the pulmonary artery. These vessels are actually behind her heart and are difficult to locate and work with.
12:30-12:45pm Vivian was now placed on the heart-lung bypass machine.
12:45-(currently 3pm) Dr. Davis has moved the arteries and removed the stent (that had been previously placed in her pulmonary artery 7/2010) and will now start to put in the VSD patch and an artificial valve between her right ventricle and pulmonary artery.

The medical staff has been very happy with how the surgery has been going. Vivian has been doing well and been very stable. When the surgery work is done, Dr. Davis and staff will sit a bit and monitor Vivian's body for awhile in the O.R. They believe she will be out of surgery between 4:30 and 5pm.

God is so good, and we are blessed beyond words to be parents to our daughter!

We so appreciate the many, many friends and family praying for us and thinking of us during this time. As you are led, I ask for prayers also for my (Keri's) dad in WY who is struggling with extended illness.