Sunday, September 28, 2008

Walking unassisted

Kira is making good progress!

Today she was walking unassisted, and without a cane! She even walked up and down some small flights of stairs. The doctors are giving her an anti-spasmodic medication and keeping her right foot in a brace to help keep her foot stabilized while she is walking. She hasn't been eating much, probably because the pain medication (fentanyl patch and Norco) decreases her appetite. But, her need for pain medication is decreasing and that is a good sign.

Kira's therapy has been stepped up a bit so that she is working hard enough to get tired. The therapists were emphasizing how important it is for her to rest in between sessions, but she wasn't getting tired enough to rest.

Baby Ross visits his mom at the hospital every day and she has been changing him with her left hand. Kira's mom reports that the baby is very calm with her and can sense that something special is happening. For now Kira is requesting that her visitors are limited to only her immediate family, but she knows that we are all thinking about her and anxious to visit with her when she is ready.

Thursday, September 25, 2008

Some updates from the last few days

  • Kira is speaking in complete sentences. She is getting bored and then sad between therapy sessions, so they are looking into increasing the amount of therapy she receives.
  • Discharge from inpatient rehabilitation should be in one week.
  • Yesterday she changed the baby using only her left hand and did a good job.
  • Today Kira squeezed her left index finger with her right hand.

Sunday, September 21, 2008

Doing Great!

Kira is making so much progress! She's up for most of the day in a wheelchair and even doing a little standing, bearing her weight on left foot. Her speech is getting better, and today she moved her right hand, on purpose, three times! She has regained total feeling in her right arm, which is fantastic!

Kira is getting physical therapy (PT), occupational therapy (OT), and speech therapy every day. Her therapy schedule changes every day. When she first arrived at Mercy, they had some major difficulty getting her pain under control. Now that they've figured that out, Kira is able to work hard on regaining her strength. The therapists are great! They are young, energetic and encouraging. They are working on stretching exercises on her right side, so that when her muscles "wake up" they will be ready.

The wound care specialist came by. Yikes!!





Yesterday Kira had a wonderful visit with Baby Ross. Her mom says when he was in his mother's arms they were just looking at each other and he knew he was with his mommy. One of the therapists came in to do a session and saw the baby and said she knew how important this time was and would come back later. We think Baby Ross is a critical part of Kira's therapy and great motivation to keep her working hard.

Saturday, September 20, 2008

No news...is good news

I haven't heard much in the way of updates lately, but wanted to post something in case anyone was getting worried. Yesterday I heard from Kira's mom that she was getting acclimated to the Mercy General rehab unit. Once they got her pain under control Kira was able to to do 3 therapy sessions. Go Kira!

Before leaving Stanford:






After the long trip - now settled into Mercy Sacto:

Wednesday, September 17, 2008

Day 12

Today's progress includes:
  • Kira was able to have a phone conversation with her mom today. She said one word for every breath she took, but she is getting some sound back.
  • Kira will be transported back to Sacramento tomorrow, to Mercy General's acute inpatient rehabilitation. Doctors are estimating she will spend three weeks in rehab as an inpatient, then continue being seen as an outpatient.
  • The clot in her brain has dissolved and she is not in danger of having another stroke. She will have follow up appointments with cardiology and neurology in two weeks.
Once Kira is settled back in Sacramento, Leona will let us know if she would like visitors.

Tuesday, September 16, 2008

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, September 14, 2008

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.!

Saturday, September 13, 2008

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!

Friday, September 12, 2008

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!!

Thursday, September 11, 2008

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.


Tuesday, September 9, 2008

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

Monday, September 8, 2008

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!

Sunday, September 7, 2008

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:



Saturday, September 6, 2008

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.

Friday, September 5, 2008

Kira is in surgery

Hello everyone. I'm Andrea, a friend of Kira's from Hearts of Hope and I am going to be updating you on her surgery and recovery.

I just spoke with her mom, Leona, and Kira went into surgery around 2. The surgeons this morning told them it would be a four to six hour surgery. There was some confusion as to whether they will be going in through her sternum or through her side and how long the whole thing will take. Leona said she'll call me when Kira's out of surgery and I will let you all know.

Right now Grandma is helping to take care of little Ross and the family is waiting at the hospital. Thank goodness Leona is feeling better today after her first ambulance ride yesterday.

Thursday, September 4, 2008

Could things get ANY worse for our family?!?!?!?!

Oh my gosh, what a DAY!!!!!!! Pre op took 7 hours, then we went back to the hotel, my mom was washing bottles, and felt a pain in her lower left back. It was getting worse very rapidly. She used the restroom, came out, and hardly made it to the bed. She was sweating, in pain, and could hardly talk. She was moaning, kinda crying, and wasn't breathing very well, from the pain. I had to call 911. I've never seen her look so bad. My mom was not looking so good. 2 fire trucks came, and an ambulance. They came in (about 7 people), and started an IV. They took her blood pressure, it was 132/92. Again, my mom was looking horrible! It was SOO scary! To see my mom suffer like that broke my heart. They took her in the ambulance, and I asked if they could give her pain meds, and they said yes. She has Kaiser insurance, so they took her to Santa Clara Kaiser. I gathered up the baby, and we headed out after the ambulance left. I got directions from the paramedic. When I was about half way there, I got a call from a 408 area code. It was the paramedic saying my mom wanted to talk to me. She sounded SO much better, and very drugged up. The morphin helped her 100%. She was telling the paramedics how cute they were...drugs will do that to you.

I called my dad, and he left his work, and drove here. I arrived at Kaiser and she was still doing better, and very drugged up still. Anyway, long story and I'm SO tired, but lots of tests, ct's labs, and they found 2 kidney stones above her bladder. She just now got back to the hotel, and she has to pee in a stainer every time she has to go. She will pass these, and it will be very painful. My mom was saying how sorry she was the whole time the paramedics were here, and I kept telling her to stop, because it is not her fault.

So, everything is ok now, except my mom who will be suffering when she passes these stones. OUCH!!! They said kidney stones are worse than labor. No wonder she was in so much pain. I had to remind her to breath, because she wasn't doing that.

As for my surgery appt today, Dr. Hanley will be going through my left side like my last 2 surgeries, which means to sternal incision! BUT, because of all the scar tissue on my left side, they said it could take up to 4 hours to get through it all, and if it's not successful, they will open me up through the front. This means I have to heal from 2 incisions. The other news is that I will be for sure recovering on the adult side. This is because I refuse to be rescheduled. I would go NUTS if I had to do this reschedule thing all over again. Dr. Hanley would rather me be on the peds side, but he is ok w/ this. His team (fellows) will come to the adult side to treat me, so it is really just the location that is a difference, not the care. Also, I am the second case, so I have to be there at noon. Surgery at 2pm. BUT, if there is no room for the morning case, who is a kid, then they will call me to come in at 8am for surgery. Does that make any sense??? SOrry, i'm tired, and on valium. I'm on valium because I started to NOT want this surgery after the surgical consult today. All the risks just started making me sick, and I'm just so scared of dying. I have to be here for baby Ross. He needs his mom. But, if I don't get this done, it will rupture, and I will die. My life stinks right now. I try so hard to stay positive, and strong, but today was my weak day.

Alright, gotta get some sleep, or try.

Tuesday, September 2, 2008

Busy day today!

Today we had to get his shots =(, go get another xray, and go see Dr. Wright, and go to Target. We went to Roseville for his shots, and he really didn't mind that too much! He smiled at the nurse after it was done, so if that tells you anything. Then, we went to Target, got some baby food, and Tylenol. We drove to Sutter Memorial for his Xray. I asked the tech not to put him in the "torture chamber" (as Amber put it, and I agree!). But, the tech said because they're looking for fluid, he has to be like that... It wasn't fun. Poor baby. Then, we went to Dr. Wrights office. It was so hot, the baby was starting to get grumpy from his shots, and I was starving.. It was just a crazy day I guess. My anxiety is starting to creep up on me as the days get closer and closer to my surgery. Dr. Wright could tell I was a mess, and he suggested I take 4 hours to myself. I was like, wow, that would be a record! He said that us parents are slaves to our kids, and we need to take time to ourselves. Then I was thinking about Andrea who just went on a cruise, and I think that is such a great idea! I want to do that when everything settles down. Anyway, baby Ross' xray looks good! He was kinda fussy tonight, but not that bad. The shots are making him sleepy though. I can hear him snore on the baby monitor right now, and it's so cute.

We're off to Stanford in the morning. Thank you everyone for all of your comments, it means a lot. I am nervous about this, and I just want to be ok for my baby. I'm so used to being in control over medicines, baths, feedings, diapers, dr. appts, bills, all that stuff, and now I will be relying on my family. I know they will do a good job, but it's hard on me. I have my certain ways of doing things, and I guess I'm kinda particular about things, maybe too much. I might be slightly over-protective? But, can you blame me? Having a heart baby might do that to people. He's just so precious to me, and I've seen him go through the worst things, and keeping him healthy, safe, happy, and away from GERMS is so important to me.

Ok, enough of that..here is a video of him LOVING the paper stuff from the doctor's office. He does this at every appt, but this time I took a video. He gets a determined look on his face.




video