Post-Op Day 11

Today Kira passed her video barium swallow study and so they were able to remove the ng tube. She now has only one IV! Her mom says that the swelling has gone down and there is more movement on the right side of her face when she is talking. There is still no movement of the right arm, but that didn't stop Kira from feeding Baby Ross today using her left arm! Kira has been frustrated with not being able to communicate the way she would like to. Short simple thoughts come out ok, but more complicated things don't and that frustrates her. But we know that Kira is making progress every day and that she will get better with time. We love you Kira!

Check these out:

Sunday update

Update from Kira's mom for yesterday:

Kira was proudly showing off pics of the baby to the nurses. Foley cath was removed. Kira was moved to a private room at the end of the hall. It has room for a cot in there. It's perfect. She was sucking water from oral swabs and said she was hungry. She has a feeding tube like Baby Ross had (ng tube). The IV in her neck was removed and her only IV is now on the top of her right hand. She sat up in a cardiac chair for a long time during the day. Therapist staff is at a minimum over the weekend, but we tracked down a speech therapist who gave us some information on aphasia. She did say not to go out and buy flash cards because Kira is going to get better and we won't need them. So nice to hear.

We requested that an Occupational therapist see her today to do a gag reflex and hopefully have her eat something. Baby Ross will be paying a visit today. Kira will be able to play with him with her left hand without him trying to grab any tubes, cords, etc.!

Day 8

Another update from Kira's mom:

Kira is out of ICU finally! One of the several tubes in her neck was removed. Ross got to watch. He said it was about 4-5 inches long. We don't know how many more there are.

I took the baby down for another visit last night. Went well. Speech Therapy put up a sign above her bed reminding us to encourage her to try to talk vs. nodding her head. It is so frustrating for her to try to communicate though. You can tell she is thinking something but it doesn't come out right. YET. I keep telling her she is getting better and will continue to get better. I ask her if she understands and she does.

Called the nurses' station this morning. Nurse said Kira is so sweet and that when she went into the room this morning, Kira showed her baby pictures. She said she was proud. Nurse also said she is working on getting her a private room today. This wasn't even Kira's nurse! She said visiting hours are from 11-8 but we can come anytime. Nurses are anxious to see Baby.

Also, Kira stood up yesterday with the help of the doctor. Great news!

Update all good!

This is Valerie, backup author to the amazing Andrea as she is at a re-treat! Yesterday I received some messages from Leona (Kira's mom) so here goes (I will try not to mess up).

Kira, Daddy Ross and Baby Ross had a wonderfully long visit yesterday. Kira was moved out of the ICU an Baby Ross was going to visit her again. Leona wanted to let you all know how much your encouraging replies mean to them, so please keep posting.

Thankyou to all!

Good News!

Kira is being discharged from ICU today! The rehab team is with her right now. Her 2nd and final chest tube has been removed.

Thanks to all for the prayers!!

Update to Day 6

An update from Kira's mom:

I called ICU this morning and was told that Kira was talking (whispering) more this morning. She also communicated to the nurse that she wanted to see the baby. The nurse told me she was crying earlier. I asked if Kira could get her hair washed and we'd bring the baby to see Mommy after that.

When I got to the hospital Kira was in and out again (from her meds) but the nurse told me she had been up in the chair again and talking more. When Kira was alert she was in a lot of pain and was very sad. Her hair looked great. Told her the baby would be arriving shortly and when he and his daddy and other grandma got there the room filled up with nurses admiring his cuteness. It was a little ICU party. They never see babies in that unit. Kira couldn't hold him but his visit did lift her spirits.

Dr. Oakes said they may be doing a bronchoscopy later today. The paralysis of her left diaphragm limits her ability to exercise her left lung, so there is some buildup that needs to be removed. We want to prevent pneumonia. She also said that Kira probably doesn't feel like she's making any improvements but that in fact she is. They plan to keep her in ICU another day.

I spoke with the case manager who said Kira's insurance is accepted at Mercy General Rehab Unit in downtown Sacramento, and she has contacted them (not with any specifics). That is the place referred by my 2 contacts the other day. PT in Stanford said she is a good candidate for rehab because she'll be making progress and she'll work in therapy 3-4 hours a day.

The bronchoscopy was done in Kira's room at 4:00. It went well. Sometime during the procedure Kira's right arm moved into a "pledge of allegiance" position and then back again. I don't know what that means, but I know it's something good!

A fundraising committee was born this morning. This has been at the very least a trying year for this little family financially. There is still much uncertainty about the current situation, and creative minds are going to find a way to give these kids a break already. Bless you!

Post-Op Day 6

Kira may leave ICU today. Once she does she'll be followed primarily by Neurology. We have to remember that she just had major surgery. Her therapy plan won't be able to be very aggressive at first and some of it is going to need to be driven by her pain level from the operation.

Big Ross has been a wonderful caretaker for Kira. He spends hours sitting at her bedside and whenever she wakes up he is so attentive and positive. He is going to help her any way he can. With her loving husband and amazing son, Kira has so much to get better for.

Post-Op Day 5

I'm sorry I didn't get to post this yesterday. But there was lots of good news!

At 6:30 last night Kira's arterial line was taken out.

The Stanford side of the hospital, where Kira is recovering, is much different from the children's side. Visiting hours are very limited, but they are making all kinds of exceptions for Kira's family and they are very appreciative. They are still not allowed in during shift change and rounds and during any procedures.

ICU visiting hours are:

10-10:30a

12-12:30p

2-2:30p

4-4:30p

6-6:30p

8-8:30p

Last night therapists showed Ross how to help exercise her right arm and leg. The therapist said that Kira feeling Ross' hands helping her would do more good than therapists' hands. They are trying to stimulate her nerves.

Today Kira was sitting up in a chair! They said that she could balance herself when she sat on the edge of the bed. She looked SO much better. Very alert and very responsive. The occupational therapist was with her and Kira was feeding herself ice chips with her left hand. Each and every step of this was very deliberate as all the muscles we take for granted when we eat are having to re-learn their jobs. She did very well.

Results of CT scan were good for her brain; the scan for her repair still shows some blood. The doctors aren't too terribly concerned about this but they are taking a conservative approach and are keeping an eye on it. Once cardiology gives the ok, she'll be moved out of ICU and into the stroke ward. Some pics:

Kira can make some very soft sounds - she said her name, birthdate, and counted to 10.

Dr. Murphy said that Dr. Hanley believes he knows where the blood clot came from that caused the stroke, and the family will be meeting with him to discuss.

Here are a couple pictures of Baby Ross from yesterday.

Post-Op Day 4

Baby Ross spent the night with his grandparents last night (he's been staying with Daddy). He slept for 12 hours! He misses his mommy but he is doing very well - taking all his meds, eating, playing, etc. and is continuing to grow and thrive. They are paying close attention to caring for him following all the instructions Kira left. Ross' mom is there for a couple of days to help however she can.

Kira is mostly unresponsive, her face is expressionless and she can't talk. If you ask her a question she can nod her head. She can't move her right arm and can barely move her left arm. Her family is not sure if it is because of the heavy drugs she is still on or due to the stroke. She will be having another CT today. Her mom is bringing her an MP3 player with some music to listen to and a poster board with some pictures.

Dr. Murphy (cardiologist) said this was a major stroke and that they don't know where the clot came from. Everything was done as it should have been and this horrible event was completely unexpected. He has grown very fond of Kira over the last several months and the family can tell that the doctor feels really bad about this. They want to know who to talk to when they call the hospital so he went and found out. There are multiple departments/experts involved, and they needed a central information source. The nurses' station will now be connecting Leona with the attending physician who will have more information than the head nurse.

There is now minimal drainage from the 2 tubes, so the hope is to be able to remove them soon. Kira has a feeding tube in through her nose for nutrition; has no gag reflex. Her exercise is to take deep breaths and cough. She was able to feel the nurse's touch on the fingers on her right hand. Another CT scan is set for today. This will measure any swelling in her brain and any excessive bleeding in the area where the patch was placed on her aorta.

After the drainage tubes are removed, Physical Therapy wants to get her up to stand on her right leg.

They think Kira will be moved out of ICU tomorrow. The case manager wants to speak with the family about choosing an acute facility where Kira will receive care after she is discharged from Stanford. She has lots of hard work ahead of her. They'll meet with the case manager today.

She can't communicate but seems to understand what is being said to her. They are not sure if she understands exactly what is going on with her condition, but time will tell. They have asked the nurse to make paper and pen available to her if she wants to scribble something with her left hand.

The family would love to receive cards. If you would like to send a card to Kira please mail it to:

Kira Gonzales
Tropicana Lodge
1720 West El Camino
Mountain View, CA 94041

Post-Op Day 3

Kira was extubated this morning around 11. They put in an arterial line. She has some feeling in her right arm. And when they asked her if she missed anything, she scribbled with her left hand "Son." So her mom brought the baby to the ICU to see her. All good news!

Update to Day 2

Earlier this evening, Kira brought her right knee up to her chest and she has some feeling in her right arm! Yay!

Post-op Day 2

An update from Kira's mom:

Kira had the CT scans (heart and brain). There is a little swelling in her brain which is to be expected following a stroke. There is a little blood at the site where the patch was placed on her aorta, but nothing of concern.

Her right leg is slow to respond, but once it does, she can move it pretty well. Can't move her right arm or any fingers on her right hand, but there is a place on her right arm where she could feel the nurse touch her.

She squeezed her Dad's hand with her left hand and knew he was there with her.

Plan is to gradually reduce the output of the ventilator to see how she will do breathing on her own. If all goes well, she will be extubated tomorrow morning 7 or 8 am. They are also gradually reducing her pain meds because she'll need to be able to cough in order for the breathing tube to be removed.

All for now.

A little good news and some pictures!

Not much news yet today, except that Kira moved her right leg higher than she did yesterday. Good news! She was supposed to have another CT this morning, but at 10 am she hadn't had it yet. I will let you know when I find out more.

Kira wanted to make sure that her mom took pictures of her after her surgery and that I posted them on her blog. So here are some pictures from the last few days.

Before Surgery:



Right After Surgery:



Saturday:

Update to Day 1

Kira did in fact have a stroke, which has affected the right side of her body. The stroke team is on board. There is a clot that went up to the left side of her brain. It is not advisable to remove it because it could cause a hemorrhage, so they are leaving it where it is.

Kira was able to move her right leg today, but hasn’t moved her right arm yet. She is still intubated since she will be needing a CT scan & MRI tomorrow. Good news is that there is minimal blood flow to the brain, rather than none. The doctors have said she will definitely need physical therapy and there is a possibility of brain damage, but they won't know until more tests are done. When she does wake up she can nod her head or move her eyes to communicate.

Please be praying for Kira.

Kira-Post Op Day 1

Sorry for the delayed post, I just got a message this afternoon.

Kira's surgery lasted six hours. The doctors came out to talk to her family and said that the surgery went well. The aneurysm was the size of a baseball. The removed the dacron patch and replaced it with a stent. They were able to go in through her side.

Some concerns are that there may be some paralysis of her left vocal cord and diaphragm. The phrenic nerve (which controls the vocal cord & diaphragm) had grown onto the aorta so the surgeons had to peel it off. Kira was stable until about 3 am and the doctors think she may have had a stroke. Her right side was not responding, but this morning she moved her right foot a little bit.

That's all I have for now. I will post again when I hear from Leona.