Kicking it up a notch

We're going to kick Kira's therapy up a notch. 24 Hour Fitness (very close to us) has all brand new state of the art equipment and they provide childcare for children 6 months old and above. The Kid's Club is enclosed in glass so all activities are visible to exercising parents at all times. Parent is paged over the loudspeaker when diaper change is needed. Thought that was pretty funny.

Kira is now a member of the gym. She signed up on member appreciation day, so she got 13 sessions with a personal trainer for the price of 10. One of the personal trainers has special training and experience in stroke rehab so that is the trainer that Kira will be working with. The trainer will contact us to set up her first session. Baby Ross will be able to make some friends in the Kid's Club too!

Kira's right arm is really making some great progress! Her muscle tone and strength have improved dramatically over the last 2 weeks. Experts say that the arm wakes up starting at the shoulder and then works it's way down. The hand is the last to "come back". When she was first able to move her arm it was because she was moving it at the shoulder and none of the muscles in her arm contracted. She can now open the frig with her right hand and when she does I can feel her entire arm muscles tense up just like one would expect. Very exciting.

Her left vocal cord is still paralyzed, although every once in a while we can tell that it's moving because her volume level will increase. Last night I heard her loud and clear from an adjoining room in the house. That was the loudest I've heard her. We're going to arrange to see a specialist to assess her vocal cord. Even though the vocal cord and her aphasia are completely unrelated, the vocal cord problem does add to her frustration level and seems to be counterproductive to aphasia progress. So we'll know more on that later.

Under Construction & More on Kira

We discovered that we had water under the flooring in our family room and kitchen a little over a week ago. A part on the back of the refrigerator had broken so water had been seeping in where it could - under the floors. Somebody had to come out, rip up the affected flooring, and left some very high-powered ... very noisy ... fans in the house for a few days to dry out some sheetrock and cabinets.


We'll be picking out some new flooring and getting it installed before Christmas.

Kira continues to improve. She absolutely never wears any leg braces and walks around in tennis shoes, flip flops, or sandals. Her walking needs some fine-tuning to be real smooth, but she has great balance and control. Her right arm is starting to come around, but it is a slow process. It starts with the shoulder and the fingers are the last to wake up. I attended one of the therapy appointments and learned something very interesting - therapist said that exercising after a stroke is completely different than exercising after any other type of injury. The brain has to connect to the body part that is being rehabilitated and much of the energy it takes to do this is in the concentration. I was amazed to see how much more she could move her arm when she really focused on it.

Kira's speech is also improving. A lot! The left vocal cord that was paralyzed from the operation is slow to recover, so there isn't much sound, but she is doing so much better getting the right words out. We aren't needing to guess at what she is saying anymore and only need to ask for clarification once in a while. She does need to spend more time doing more deep breathing exercises to get her diaphragm working more efficiently and help with tiredness.

Still going to occupational and speech therapy twice a week, but her physical therapy has been cut down to once a week.

It is so exciting to see the tremendous amount of progress that Kira has made in less than 2 months! Full recovery can't come too soon for her. You know how impatient these "youngins" are - wanting immediate results and all.

One of the most amazing things to witness is the way that Kira is coping with all this. She has her moments (and certainly has every right to have them), but she has her eye on the prize and knows that if she weakens and gives in to self-pity she won't progress. What a gal!

Today's therapy appt...and more...posted by Mom

Kira had her appointment with speech therapy and physical therapy today. The physical therapist said that Kira is making such wonderful progress that she's going to dig out some exercises with a higher degree of difficulty for the next session. The therapist also said that Kira doesn't need to wear her night boot brace and she can go without her walking brace during the day for periods of time. The speech therapist was also very impressed with her progress and gave her lots of homework.

The shower chair has been cast aside and it is keeping the cane company.

Grandpa and I went to Babies R Us a couple of days ago and left with a bouncy thing. Some assembly required. Baby Ross really took a liking to it and he's literally a bouncing baby boy.



Here's another pic from today:

new pictures, just gotta go down....

Update from Kira's Mom

I’m so glad to be posting this update – and not just because it’s my first experience with blogging.

Kira has been home now for a week, and it is so wonderful for all of us that she is here. The hospital discharged her with several pieces of equipment as follows: Wheelchair, cane, walking leg brace, night boot, and bedside commode.

The wheelchair is being used regularly – not by Kira, but Ross enjoys playing video games from the chair and has also mastered several daring wheelchair tricks. It is very entertaining. We also have a scooter at the house that we’re test-driving for possible use by my mom one day, and we put on some amusing family parades from time to time.



Kira used her cane for the first 4-5 days she was home, but it became more of a nuisance than a help, so it has been cast aside.

The walking leg brace was custom made for her and it is hinged at the ankle. The purpose of this brace is to keep her foot and ankle positions stabilized while walking to reduce the risk of damaging her ankle and/or foot. Her foot muscles have a tendency to turn her foot inward and the brace corrects this. She wears the brace all day and it has helped her walking tremendously. The night boot is a soft blue stabilizer that she wears while sleeping.

The commode is being utilized as a shower chair and she is showering all by herself.

Kira has a number of prescriptions also. The least favorite is Heparin, which is a blood thinner that has to be injected into her abdomen every day for 2 weeks. Only a short way to go and she’ll be done with that.

Ross and Kira went on a little road trip yesterday. They drove up to Boomtown and had a great time. Here's Kira right before they left:



Thursday was Day 1 for outpatient physical, occupational, and speech therapy at Mercy here in Folsom. Several staff members remembered Kira from last year when she was caring for my mom and taking her to the same place for rehab from her stroke. She was pregnant at the time so they were excited to see Baby Ross when I picked her up. The occupational therapist asked that the baby attend her next session so she can get some pointers on caring for him until her right arm “wakes up” all the way. She will be attending therapy sessions twice a week.

Progress is being made all the way around. We’ve been doing a lot of massaging of Kira’s right arm and hand and she has very recently begun to move them a little bit voluntarily! Prayers and well-wishes are so very much appreciated and they are helping. It is so exciting to see the progress that she is making, and it is an honor to witness her strong will and her outlook on what she has been through. Being proud of her doesn’t even touch it. My daughter is my hero!

new pics

i'm doing ok just wanted to thank everybody who sighed up to pay me. thank you everybody. thats all i can write now.

Going Home!

Today is the big day! Kira is going home after almost a month in the hospital! Hooray!

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.

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.
  

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.

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:

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.

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.

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.

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.

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.

My surgery

I talked to Dr. Hanley on Friday. I asked him if I could recover on the adult/Stanford side if there were no beds for me in the CVICU. He thought about it, and said yes. He would prefer me to recover on the children's side because of my heart condition, but he will also feel comfortable w/ the adult side if we had to. He said my chances of having surgery rescheduled are very slim. That was nice. It also makes me realize that it's probably going to happen this Friday, and I am starting to get a little nervous now. I also got sad today. I'm wearing a tank top, and kinda low cut. I just realized that after my surgery, I will never look the same. I know, I know, I have to get this done, and beauty is from the inside, but it will be different. My old scars are on my left side, so only a bathing suit will show those. I've always been so grateful for not having scars in the front. Oh well, whatever! Just venting. My mom will be giving Andrea, from my support group updates and pictures. Andrea has offered to update my blog while I'm in the hospital. That's nice of her. My mom doesn't know anything about blogs.

Baby Ross is doing great. He doesn't appear to be sick. =)

That's it for now!

Kira

I'm so glad I took him!

Today, baby Ross was not feeling so good. Luckily, the antibiotics are in his system, and will do the job. He took 3 long naps today, which is different. All three times, the pillow was soaked with sweat, and his back. Maybe that's his way of fighting the infection. Now, I'm starting to wonder HOW he got this!!! He hasn't been sick, or runny nose, or fever. He is never exposed to sick people, unless they lie =(. But, for the most part, he is pretty sheltered, to an extent =). He still has an appetite!

Ok, he's getting fussy =(

First trip to the E.R.

Yesterday, I had a "feeling" that something was different about baby Ross. He was tired after taking a nap, and yawned a lot. He was a little fussy, and something just told me that I should take him in. I called Valarie, for her advice. She called her husband who is a nurse at Sutter Memorial. He suggested taking him to the E.R. I'm glad he did. When we were there, the baby was laughing, smiling, kicking, acting normal, so I was feeling really stupid. Big Ross was kinda giving me a look like, "why are we here, he's fine." So, that didn't help my feelings of stupidity. When the doctor came in, little Ross was laughing...Anyway, he got an xray, which was HORRIBLE!!! I hate how they do xrays there. The tech had him sit in this weird thing, with his feet dangling, and then this plastic thing holding him in with his hands straight up in the air. His face was smashed in, and I had to hold his arms up. He was screaming, crying, looking at me with those sad eyes. It was awful. Again, I don't like how they do xrays there, and he will never have it done like that again. Stanford just has them laying on the bed.

So, hours later, no word. I asked the nurse if the doctor looked at the xrays yet, because his meds were already late, and I didn't bring them. He said "yeah, he just looked at them, and he said he's gonna think about what to do." That didn't sound very good. The doctor came in and told us he has a "questionable" right side pneumonia. He prescribed antibiotics, and told us to come back if he has trouble breathing, or runs a fever. He consulted w/ Dr. Juris, who was on call. He was OK with that. The E.R. doctor said if he was heart healthy, he would just send us home, and keep an eye on it. Since he has a complex heart condition, they have to be aggressive. I'm happy about that.

I'm so glad he was seen, because pneumonia can get life threatening, and left untreated with his condition is just asking for a hospitalization!!! We DON'T need that!

We got home after midnight, and we're doing good today. I called Dr. Wright, his cardiologist. We will get another xray Tuesday, and hand carry the film to his office, and that way he is seen right before we head off to Stanford. He also has an appt. with the pediatricians office in the morning, recommended by the E.R. doctor.

That's about it!

Good report from cardiologist!

Baby Ross had his one month follow up w/ Dr. Wright last week, and I forgot to post. Dr. Wright needed his new medication info, and I left it in the car. He said he would watch the baby (we're in the exam room). I came back from the car, and they weren't in the room. I went in the echo room to see the cutest thing. Dr. Wright was sitting on the little bed (for kids), holding the baby as the tech performed an echo. It was so cute!!! He said that was the highlight of his day, and now he knows what parents feel like having to keep the baby still.... =) Ross was being good, like always, but he still had to keep him still. I asked if he wanted me to take the baby, and he said no. It was pretty cool standing right behind the echo machine, to see a close up of his heart. After that, he handed the baby off to me, and we went back to the exam room, where baby Ross decided to take a very STINKY poop. He always does this at the doctor's office.

Anyway, everything looks good, and Dr. Wright is very impressed w/ baby Ross. =)

My surgery is coming up, September 5, in Stanford. I should be there 5-7 days. My mom said she would update the blog, and post pictures. I'm going to let her take pictures of me right after surgery, and post them. I'm sure it will be different seeing a heart mom be the patient! =) I'll let you know what it was like.

Here are some recent pictures. Baby Ross is developing so quickly! He's trying really really hard to sit up on his own. His back muscles are really strong. He is eating baby food (when he really wants to). So far, it's a hit or miss if he'll eat it. He loves his bottles a lot. He is doing really good on his tummy. He holds his head up high, and now he just wants to move. He loves to kick his legs all the time. SO active~and such a good baby. He only fusses when he's hungry or tired. I think he's getting a tooth pretty soon. There is drool EVERYWHERE!!! It runs down my arm when i hold him, he loves to chew on my fingers (and his), so I think it's a sign. I'm new at this stuff, but I think I feel a little swelling on the front bottom gum line. He will be 6 months September 5. =) He's growing so fast.


DROOL, everywhere...never stops!!!


The shirt had to come off...

Grandma Lou and Grandpa Ross' house

They got him a swing, and he loves it..

The last 6 months, in a slide show

Pictures

proud grandparents

Here are some recent pictures of baby Ross being home. He is doing great, and Dr. Warden said his color is amazing. He doesn't hear a murmur, and also told me if he didn't have all the scars, he wouldn't think anything is wrong with him...even listening to his heart! Now, this is the pediatrician, not a cardiologist, but still good to hear.

We saw Dr. Warden because the baby's eye was looking infected. He was also born w/ clogged tear ducts. This happens to 5-10% of babies. His right eye is better, but the left eye is still blocked. This caused a secondary infection. Not pink eye. So, we have eye drops, and we need to massage his eye area at every diaper change. It's not a big deal, and should resolve by 9 months. His eye looks a lot better this morning.

I was holding back tears, but I did get goosebumps...

When Ross and I were in Stanford, at the Ronald McDonald house in Feburary, waiting for little Ross, we saw an amazing little boy.  His name is Shawn.  I knew all about him through a fellow heart mom.  He was born with HLHS, and he is 7 or 8 years old?   He had all three surgeries, but developed complications, and I'm sorry I don't know what it was right now.  I will find out.  I remember seeing him every night playing w/ friends, playing bingo, and trying hard to make life easy.  Him and his family are from Alaska.  He was there waiting for a heart transplant.  When I was there, he had already been at the Ronald House for over a year.  Today marks 2 years, 4 months, until July 31, 2008, they got the call at midnight that he got a heart!!!  They received a similiar call months ago, but turned out the heart had issues, so they wouldn't transplant it.  That was so devestating, I can imagine.  But, this time, he really got the heart, and I wanted to share this w/ everyone.  He has been on the Alaska news twice, and here is the most recent news clipping, showing him after his heart transplant.  I was trying REALLY hard not to cry, because I know I wouldn't be able to sleep, but I did get chills, and bumps on my arms.  This is such a miracle for this family, and I can only imagine going two years waiting for a heart.  

http://www.ktuu.com/global/video/popup/pop_playerLaunch.asp?vt1=v&clipFormat=flv&clipId1=2758073&at1=Video%20Player&h1=Eagle%20River%20boy%20gets%20new%20hear

We're home!

Glad to be back.  

just wanted to update, but tired. so it's to the point.  :)

We're going home tomorrow!

So far, all the labs are very good, and the culture after 24 hours hasn't grown, so if it's still no growth in the morning, we're outta here! Today, my cardiologist, Dr. Murphy did rounds (he's also a peds cardiologist), and he asked if I could come down to his clinic downstairs for some pictures. I guess Stanford is doing an article about adult congenital heart defects in hope of promoting donors, funding, etc. for our little one's. I was so honored to help out w/ that. They just took a picture of me and Dr. Murphy in an exam room, with him checking my pulses. He's such a great doctor.

I met a cute little boy, who is 2 years old. He is here waiting for a heart transplant. His mom kept telling his pediatrician that something wasn't right, and the Dr. kept saying, "you're a new mom, and you're just being paranoid." She knew something wasn't right. She took him to Fresno Children's hospital, and they took an xray. His heart looked like Mickey mouse. His atriums are enlarged, and getting worse. He has some rare heart defect restricting mylopathy? I can't remember, but this was a total shock for the family. They tried for 3 years to get pregnant, and now, their precious 2 year old is on the 1A heart transplant list. He is so adorable, and his mother is the sweetest thing. I'll be thinking about them. The doctor who kept telling mom that nothing was wrong flew here twice to apologize, and was crying, offering money. She denied it, and said, "please, just don't tell new mom's that they are paranoid." We know are kids better than the doctors do, and I hope that opens up his eyes. Maybe he can spread the news of this unfortunate situation, and more doctors will start listening to us.

I saw Drew's picture on the board here in 3 west. He's so cute. He really stands out on that board. Smiling little guy. I don't know how Andrea did it here for 7 weeks, and Drew, having chest tubes in for so long. He's a tough little man, and I admire their family.

Post op 6

Last night I stayed at the hotel again, and so did Ross. My mom stayed w/ the baby for the second night. He had a good night. But, before I left, his temp rectally was 100.3. A half hour later it was 99.9. The doctors didn't seem too concerned because it came down, and he looked really good. Vitals were great. This morning, they took blood work for routine stuff. Then, the surgeons wanted his blood cultured because of the small low grade fever he had yesterday. This means that the culture has to sit for 48 hours. This means being discharged Tuesday, instead of tomorrow. I was so bummed out. Well, still bummed out. He looks so good, and even the N.P. thinks he's ok. With only a single ventricle, they have to be cautious. There is still a slight possiblity that he can go tomorrow. We're waiting for the first blood draw results. If the white count is low, that's a good sign that he's not infected. Then, if the culture after 24 hours doesn't show anything, that's another good sign. I'm thinking, if the two signs are good tomorrow, and he looks good, why can't they send us home. If the culture does come back showing something, they can call us, and we can go to a local hospital for anitbiotics. Stanford doesn't like that too much, but I do. I guess we're just ready to leave. This hospital is making us sick, literally.




That's it for now. He also got a visit from his other grandma this morning, so that was nice. My mom left, and so did Grandma Lou. Baby Ross is resting, and I'm still wearing a mask, as I'm still a little sick. Nyquil, rest, and a very hot shower seems to do the trick.

I'll post pictures later.

Germs are in this hospital........

So, my dust/dry air myth was wrong. I ended up getting a fever yesterday afternoon, and I checked into a hotel. Ross stayed w/ the baby until my mom arrived from Sacramento. I was so miserable. Body aches, stuffy head, fever, chills..and I really didn't want to expose baby Ross, even though I think he's suffering from a cold. He hasn't spiked a fever..yet, so far so good. I got some serious rest, went to bed at 6pm and woke up this morning at 9am. I got to the hospital, wearing a mask, and I'm feeling 75% better. Still stuffy, but no more fever. The baby is resting comfortably. He is still kinda stuffy, and he threw up once today. No fever though!

His xray looks good. The heart echo they did yesterday shows no changes from his pre-op echo (as far as heart function goes.) It's on the normal-low side of function. This is what they expect for his HLHS. They will, however start him on a new med. Not digoxin, but something else, and I can't remember the name. He will be getting only 10% of his dose, so it's a very small amount.

We are to be discharged Monday!!!!! I cannot wait. This dry air/germy hospital is making us sick, and I have a feeling he'll feel better once we're outta here.

That's it for now. My mom came to the rescue, by coming here in rush hour traffic to give us a break. Thanks mom!

Tube free!!!!!!!

After a lot of talk yesterday about leaving his chest tubes in, and changing formulas, he got his tubes out this morning! He only put out 2 cc's in the right tube, and zero in the middle tube. We are SO happy! He seems more comfortable, and we'll probably being discharged Monday.

All is good over here!

Tonight

Well, baby Ross was sleeping most of the day from the Tylenol codeine. Then when he was awake, he would just stare at the wall. He was OUT of it!!!! I asked the N.P. to cut back on the codeine because it was way too much for him. She agreed. His right chest tube is still putting out just a little of the creamy stuff, but it's pink, so it's hard to tell. Dr. Reddy wants him to go on a low fat formula, but the N.P. disagreed. I had to side w/ Dr. Reddy, and who wouldn't? So, there is a problem now w/ getting the formula because he is sensitive to cow's milk protein, which is in most formulas. Even the GI doctor in Folsom had me on a non dairy diet, because of breastfeeding. Because of this, they need to consult w/ the GI doctor here before giving him this new formula. Hopefully tomorrow he can start it. Even w/ all of this, we might go home this weekend! His xrays look good, and the output of the 2 tubes was 10 cc's total in 24 hours. That's really good.

Then, the little guy wanted to scare us some more..He has been stuffy in the nose since we came to the 3rd floor. We've been using the nose suction, and saline drops. I kept asking nurse after nurse, N.P. after N.P., even doctor after doctor....nobody would help, or even care. Finally, a blessing. Our nurse tonight actually did something about it. I told her about it, and also told her that I woke up this morning from a sore throat and stuffy nose. I then noticed the vent in this room is filled w/ dust! Nasty!!!!!! I know that I can get sensitive at times w/ dry air, and dust. So, maybe he is too. So, he got some benedryl, and I put saline drops in his nose. He seems to be better now. Actually, big Ross is at Safeway getting me some benedryl because I'm not feeling so good.

Baby Ross decided about 45 minutes ago that he just needed some hot nurses in his room. He was starting to desat to the high 60's..so after our nurse tried increasing his oxygen, moving the probe from foot to foot, another nurse came in. She tried the same thing. Then, a third nurse came in, and baby Ross was struggling to poop. My trick at home is a rectal thermometer. So, there we were, sticking that thing up there, and he poops! But, his sats were the same. Finally, they put the probe on his hand, and HELLO, 90%. All of these nurses were just telling him how cute he is, and making him smile. He was loving it. He's a ladies man.

So, now he is sleeping, and that was our night tonight.

post op 4 news

Doctors just made their rounds. He can have the pacer wires out today, nice! He is feeling so much better today, and more smiles, kicking, a lot less crying, and more sleeping. He is now off the oxygen.

Now for the not so good news..yesterday, I noticed that some creamy looking stuff was coming out of his right chest tube. I told the N.P. about it, and she wasn't concerned. Another N.P. looked, and wasn't concerned. But, I knew it wasn't right. Finally, they took a lab sample, and it came back w/ a name called cholethorax. I know I'm spelling it wrong, but it's like fatty tissue's from the stomach emptying into the chest cavity, or something like that. So, the remaining 2 chest tubes need to be in another day. He might have to go on a low fat formula for awhile. The drainage is SO much better though. It's really not that bad, and the creamy stuff was only once. It might just have resolved on it's own, but we'll have to see what tomorrow brings us.

His only I.V. blew last night, so he's taking everything by mouth. He's on Tylenol codeine. He is so sleepy today, and I think it's from that. He just seems really tired.

Other than that, just sick of this place already, and it's only post op day 4! Ugh..........

kira

post op 3 news

During the night, baby Ross slept about 2 hours at a time. So, I'm falling behind on my rest too. He is starting to smile more often, and kick his legs like he does at home.

The doctors came by for their rounds, and all good news. He just got one chest tube out, and he can get the last two out tomorrow, along w/ the pacer wires. He still has the pacer wires because of a slight arrhythmia issue that he had in the OR. It wasn't a huge concern, but they are being conservative. He is NOT on digoxin anymore! his last digoxin was the night before surgery. This is great news. His heart rate is great, about 120's, and when he's mad up to 140's. His sats are still between 85-95%. He is still on nasal cannula, down from 2 liters to 1 liter. He doesn't need the oxygen, but doctors say that with the Glenn surgery, they like the kids to be on it for a few days to help w/ the pressure in the lungs. It also just transitions into the new blood flow that he's getting. He has no murmur anymore. His lungs are clear, but the chest xray showed a slight edema on the right side, which is normal for post op day 3. He is on 2 diuretics until tomorrow, he will just be on lasix.

He's eating well, and gained weight since being here. Oh, and we can return the scale from home, and return the pulse ox machine...don't need to monitor anymore at home! =)

He still has to get his pre-op echo, and his EKG looks good. They are guessing we'll be discharged Saturday. That would make it 6 days here. Yoo hoo. Things can change, but they say he is sailing right along.

Here's a picture of his incision. They just took the dressing off for good. Doctors are pleased w/ it.

On the 3rd Floor!

In the CVICU, puffy eys are better!



On the 3rd floor, and starting to act more like himself



Smiling...warms my heart


We're in a private room, and baby boy is feeling better. He actually smiled a few times tonight. He's such a trooper. Here are some pictures, then we're off to bed.

2 days after sugery

Baby Ross is such a trooper. He's had his share of suffering, that's for sure. They try to keep him comfortable, but it's hard for him. BUT....they took out his R.A. line, and 3 IV's. Yey!!! Now I can hold him. He still has his 3 chest tubes, and only one I.V. just in case they need it. He is off all medications, and is just taking Tylenol and Motrin. Everything is looking so good, and the doctors are very happy with his progress. He is moving to the 3rd floor today! His chest tube drainage is better, but they want to keep them in today. You know Stanford, very Conservative..which is OK. I do hope they come out tomorrow. They said when all three are out, he can go home. I figured out why his eyes were so puffy and red. Doctors were saying edema, but i disagreed, and I was right. He has a sensitivity to paper tape. He's been trying to scratch his eyes ever since day one of surgery, and they were puffy and irritated. I finally came to the conclusion that they had to put tape over his eyes during surgery, and that was causing him itchy eyelides. The doctor then agreed and gave him benedryl. It helped! I took another picture of his face, and he looks so much better now. I will post the picture later, but I gotta go now.

Kira

pics

Right after surgery 7-20-08



Day after surgery, no more tube!
7-21-08

day after surgery

He is doing great, (medically). He gets upset a lot, and it's heart breaking. The fentynal works well though. He got his breathing tube taken out last night around 10pm. His saturations are between 88-96%. He looks good, eyes a little puffy. He is getting is catheter taken out from his private part today, yoo hoo! The doctors just made their rounds, and siad he is doing excellent! Another doctor said he is the biggest single ventricle patient. He will prob. get 2 chest tubes out tomorrow, and his R.A. line out Wed., and then his last chest tube after that. No word about moving to a step down yet. Vitals are great, and he had dome milk!

That's about it for now. I just want him to be comfortable. Watching him suffer is heart breaking.

Kira

He is doing good

He's still intubated, but they are cutting back on his breathing through the tube. That means that he is over breathing the vent. It's a good thing. He started moving around, so the nurse gave him morphin, and within 30 seconds, he started getting really active, so we had to hold his arms down a litte. I remember this from his last surgery, the morphin makes him hyper kinda. So, i told the nurse and they will use Fentynal instead. Then, she gave him some versed, and that did the trick. She also brought in some earphones, and i brought in a CD that he listened to inside the womb. That's helping too.

Other than that, vitals are stable, and they plan to extubate later tonight I think. His color looks really good. He looks darker to me. They have him in an upright position because of the increased blood flow to the head and upper extemities (from the glenn), and i guess this can cause a headache for a short period of time. this is standard procedure. He also got a tylenol suppository, which i thought to be interesting..

I'll update when we get more news!

Kira

Dr. Reddy came out smiling!

Dr. Reddy just came to us, smiling, and said everything went well. No complications, and he said that he looks good! We can go see him in about 30 minutes. What a relief!!! I asked how many chest tubes. 3 chest tubes. He is super cautious, so that's ok. I thought there would be only 1 or 2, so that was kinda a bummer, but I know Dr. Reddy is good at what he does.

I'll update later, after i get enough time w/ baby boy. =)

Kira

45 minute call

Judy from the CVICU just called. She said that he will be out of the operating room in 45 minutes. Dr. Reddy will be out any minute to give us the info. Everything is looking like it's on schedule, just like his last surgery. =)

Kira

He's in the operating room!

We handed him off at 8am today. I am happy that he got in, but still having the emotions of it all. I'm actually doing better than I expected, but it's still hard. We're just glad to get this over with!!! He went in at 8am, and he should be done around 2pm. I just went back to the CVICU to get breastfeeding bottles/labels, and i saw the bed that he'll be in. It's the same as his last surgery. All the memories started creeping up on me when I went back there, and especially when I saw the empty bed that he used to be in in March.

The doctors today said that he's the biggest HLHS post norwood baby, and one of the healthiest. That was so nice to hear. We hear it so much from doctors, but it doesn't get old. Baby Ross is such a blessing to us, and he is so strong. I told him that he's gonna be stong like last time, and that I'm so proud of him.

Daddy Ross is doing ok. He just went to get some food. I got my starbucks, and I found a good spot to wait. They usually don't do surgery on the weekend, so it's pretty quiet over here, which is nice. I'm going to take a nap.

I'll post when we see our little man.

Kira

Nope..not today

4th time now being cancelled. This time, there was an emergency surgery that Dr. Reddy had to do last night, and he wants him and his team to rest. He didn't want to operate having been up all night. He told the doctor who called me that he is GOING to do the surgery for Ross tomorrow...but, again, we will know when I hand him off to the team.

Maybe we'll have better luck for the 5th try..

surgery tomorrow???

I just got a call from a doctor that is from the surgical team. He said that he is very confident that surgery will go tomorrow. He will call us at 7am and say, "come, or don't come". That way, we don't have to wait at the hospital for 3 hours like we did this morning. Surgery is scheduled for 8am tomorrow.......so please keep your fingers crossed!!!!! He sounds confident, and told me that they are really trying to get this on tomorrow because he's been rescheduled so many times now.

We are just hanging out at our very nice hotel, that Stanford will be paying for...=)

I will update as soon as I can in the morning.

Kira

No surgery today..........

This was the THIRD time it has been cancelled. I am beyond upset. Sorry it took so long to post, but the hotel we were staying at didn't have reception. We are now at the Westin...and it's really nice. I think it's a 5 star. His surgery might happen this weekend, but don't know for sure. I threatened the administrative staff that I would take him to UCSF if it didn't happen this weekend. Oh am I upset.

I'll post more when we know something.

Kira

Cardiologist appt

Since Ross' surgery got rescheduled, Dr. Wright (his cardiologist) wanted to see him once a week until surgery. Everything checked out great. Dr. Wright was really impressed that I got his surgery up to this Friday. I told him that I just used profound language, which I NEVER do, especially to the medical staff. He was shocked, and said, "you're always cool as a cucumber". But, he agreed that when it comes to your children, you have to speak up.

Nothing else to report today. Here are some more pictures. I've been camera crazy since we got home.

Some more pictures from the weekend

Grandma Lou and baby

Just hanging out

The party was a little to much for him, sound asleep

Sitting up like a big boy, and lots of drool..