Monday, October 28, 2013

med error

Today was Dr day.  A and B were spending the day with their papa while Capri and I went to our appointments.  Right before we left I gave Capri her meds.  I put all the bottles together and give her them one a time, putting them into another pile so i know which ones i have already given.  Viagra 1.7mls, check.  Lasix .4mls, check. urisodol .52mls check. Urisodol.. .52mls.... wait, I just gave that one.  I looked in the already given pile and instead of urisodol it was her flecainide (heart med).  She gets .15mls of that.  I just gave Capri almost 4 times that amount of medication she is supposed to get.  I called her cardiologist right away and left a message with the nurse to see if i needed to take her in or what i needed to do.  We got in the car and headed to my appointment.

For the last week i have had a severe pain in my arm which i am assuming is from a pinched nerve.  It has progressively gotten worse to the point that part of my arm is numb now.  I got to the orthopedist  checked in and filled out my paper work.  As I was sitting in the waiting room waiting for my turn, the cardiologist nurse called.  She frantically told me to get to the ER right away and that they would be admitting Capri overnight.  I told the front desk i had to cancel and ran to the car.  I cant believe i did this.  I always double check the meds and the doses.. what was i thinking?  I raced to Primary childrens while calling Mike and my family to let them know what was going on.  Dr Adam Ware called me on the way and asked how close i was and again urged me to hurry.   He told me to just go to the ER because they needed to look at her right away.  As I walked in the front doors the nurse asked if this was Capri and rushed us back to the rooms.  Before I could even sit her down We had at least 15 doctors flood into our room hook her up to monitors and start sticking her for blood and IVs.  I stepped back and started to cry.  I did this to her.  All of this pain she is in is because of me.  I know people make mistakes and i shouldnt "beat myself up" over this but it was my fault.  It could have been avoided.  I talked to Adam and to the pharmacist who had done studies on flecainide when it was still an investigational drug.  They re assured me that it was just a mistake and it happens all of the time. They are worried that she will go into ventricular tachacardia.  Apparently kids have a much harder time with this then with super ventricular tachacardia.  This one they have a much harder time re setting her heart.

Her EKG came back looking "ok".  they told me we were past the point of life or death and now she just needed to be monitored.  We didnt need to go to the Cardiac ICU  but wernt stable enough to go to the infant unit so we were moved to the Cardiac surgical unit. Here they have specialized machines and nurses that are able to deal with capris conditionn.

What started out as a fun relaxed day with just me and my baby girl has turned into stressful possibly life threatening day.  And i have no one to blame except myself.  I am who put us here today.  One things for sure. I will never mess up her flecainide medicine again 

Thursday, October 24, 2013

life choices

Today I did one of the hardest things I have had to do in a long time.  I sent an email to my boss letting her know I have to step down for now.  I LOVE my job.  I teach employees about how to take care of adults with disabilities, how to de escalate situations to avoid confrontations and how to restrain them when you have to.  This is the first job I have ever had that I honestly love every part of it.
That being said, since I have gone back I have done nothing but worry that something will happen to Capri while I am gone.  Mike told me to stick it out and try to see if things got easier.  We need the money and I need the break.
Today As I walked in the front door I saw my mom holding Capri in a panic.  She told me that her color didn't look good and her heart rate was fast.  I brought her into the living room to hook her up to her monitors and listen to her heart beat.  In my head Im telling myself to stay calm, don't make anyone nervous, its okay.  Her heart rate was 190.  The only time i have ever seen it that high was in the NICU and shortly after they had to shock her to get her out of SVT.  I tried to gag her and that didn't work.  I brought her upstairs to put her in a cool bath. Before I did I remembered Dr. Cowley telling us to hold her upside down and let all the blood rush to her head.  When I am doing these maneuvers I feel like I am being an abusive mom.  Who holds an infant upside down by her toes??? I laid her on the bed and went to listen to her heart beat again.  She started throwing up all over her me and my bed.  I turned her to her side but she couldn't clear her throat.  Her eyes got big and she was trying to breathe.  I grabbed the nose syringe and started sucking throw up out of the back of her throat. Finally she gasped and slowly started to breath again.  Grabbing my stethoscope i listened to her heartbeat one more time..89, she's out of it.. she's ok.
If I hadn't been home my mom would have called 911, they possibly would have shocked her heart and who knows what could have happened.  This helped me to decide that where I need to be is home right now.  We will figure out how to pay for bills, I will find a time to get a break and have some adult time.  We will make it work.  Right now, I need to be with my children.  In the grand scheme of things they are what mattters.

Monday, October 14, 2013

you have to get worse before you can get better

The older Capri gets the more problems we seem to be having. Since our ER visit she hasn't been able to keep her oxygen up on her own.  Last night as we were getting ready for bed I put on her pulse ox monitor and she was at 79.  We quickly put her oxygen on and turned it up to 1/4 liter. After 30 minutes she was still in the 80s and her heart rate was in the 90s.  We turned it up again and I called the cardiologist.  I know what to do when her heart rate is too high, I haven't had to deal with it being to low though.. this is new to me.  After talking to the doctor (at 11pm) he told me to keep a close eye on her over the next couple of hours and if she got any lower to bring her back to the ER. Sleep is over rated, right?  Or at least that's what people keep telling me.  Finally around 2 I couldn't stay awake anymore so I put her in the crib and turned the monitor on as loud as it would go.  I woke up every 30 minutes or so to make sure she wasn't grey and that her heart rate was okay.  Around 730 her alarms started going off saying her heart rate was too high.  This is where I am more comfortable.  I let her breast feed and it kicked her down from 160 to 130. 

All day today she has struggled with her oxygen.  Barely getting into the ninety's being on 3/4 of a liter.  I have never had to use that much oxygen with her before.  She normally does great on 1/8.  Her lips have been blue most of the day but the rest of her seems fine.  My normal happy smiley baby.  After talking with both her cardiologist and her pediatrician I was told to keep an eye on her but that we can only do so much.  As her heart worsens it is going to get harder to breath and this is just going to be part of our lives until we can make it to the surgery.  Next spring can not come soon enough.  We have to get her that surgery before it gets to bad and our only option is a heart transplant. 

Wednesday, October 9, 2013

1st ambulance trip

A was so worried about Capri going in the ambulance.  On the car ride after  as tears fell from his face he told me he saw a man on the bed with his eyes close and the emts put him in an ambulance and he was dead.  So that meant that capri was going to die since she had to go in the ambulance.  He loves his little sister so much i couldn't ask for a better son. 

watching my baby get into an ambulance and drive away without me was one of the hardest things i have done so far.  I just want to always be there to protect her, to make her feel safe.

I was so drained emotionally and physically last night that i didn't write.  It was one of our more adventurous days.  On my way to pick up A and B from preschool Capris cardiologist called addressing some concerns I had about her.  He agreed they were worry some and told me to head into the ER and have her checked out.  All 3 kids an I headed over to riverton IHC to get carpi checked out while my best friend sat with me once again in a hospital emergency room.  After doing X-rays the doctor let me know that she had fluid on her lungs and in her pulmonary valve.  "It does look like she might be in heart failure, I think we need to take her via ambulance to primary's to do further tests".  I had the other kids with me and Chelsy had left to go to work so I wasn't able to ride in the ambulance with her.  Her first ride with EMTS and she had to do it alone.  I rushed A and B to their papas and drove way to fast to primary childrens.  When I got there I could hear Capri crying from down the hall. Her little tiny scream broke my heart, she must be so scared.  I got to the room and held her until she stopped crying.  The doctors came in one after another, EKG, Blood work, echo.  Watching her oxygen monitor dip into the low 80s.  Im so scared she cant be in heart failure.. We are doing surgery in a few months and then she will be all better.  Her heart has to make it until next spring.  She is too little to do surgery right now.  After what seemed like days the cardiologist came back to the room letting us know that her echo came back "ok".  It wasn't good but it wasn't bad.  We need to keep a close eye on her and increase her diarrhetic.  Her body retains fluid so the lassie helps push out any unnecessary fluid.  We doubled her up on that and will watch and see how she does.

This morning Dr. Cowley called me again to let me know the results of her holter monitor were in.  We hooked her up to an EKG for 24 hours to monitor her heart spikes.  The results showed that she is having small episodes of SVT all day long.  We will increase another one of her meds and again.. watch and see.

On top of everything, today my grandmother came to down to get some tests done at Huntsman cancer center.  After a day full of poking and prodding they diagnosed her with ovarian cancer.  She will need to do a stress test on her heart tomorrow to make sure she is strong enough to handle surgery and if all goes well she will go in for a full hysterectomy Tuesday morning.  If you have ever met my grandmother you know that she is the spunkiest tell you how it is no fluff kind of person.  There is never a dull moment when Buba is around.  Whether its sitting at a restaurant watching her threaten to dump a glass of water down your shirt because you are on your phone, to really starting a food fight in the middle of that restaurant because her brother was being a turd.  I love every moment i get to spend with her and i can not imagine my life with out her.  I know i have asked all of you for so much over the last few months and I would be lying if i said this was the last time I was going to need help but if you have a free second to send a good vibe, think a good thought or say a little prayer to keep my grandma safe and to have this be a type of cancer she can beat I would be so grateful.  I need my grandma around for a long time.  She needs to be here to watch my kids get married and tell there significant others embarrassing stories.  She is too good of a person to leave this earth right now.  I need her for my sanity so please.. if you have a few good vibes just laying around please send them our way.

Sunday, October 6, 2013

We always find a way

This is the difference between a healthy kid and a heart kid.  Look at C's lips compared to A and Bs.  She is so much more grey than they are. These 3 are my whole world.

Our beautiful miracle baby, growing up big and strong
Its been one week since Capri has been tube free.  I cant explain how wonderful it has been to hold her and not worry about tripping over wires, or having to wake up in the middle of the night to change feeding bags.  If it wern't for the oxygen tabs on her temples no one would know that she had something wrong with her.  We did a weight check on Friday, she was albs 1.6oz.  she has lost 0.4oz since we took the tube out.  We have to go to the doctor once a week for the next month to check her weight.  If she continues to lose we will have to re put her tube back in.

I went back to work this week.  Never in my life have I been so scared to leave home.  We have a wonderful neighbor who is tending the kids for the 3 hours Mike and I are both at work and I am fully confident in her ability to take care of Capri.  That being said, I am so afraid something will happen while i am gone and I will be to far away to be able to hold her and tell her goodbye.  I hate that my head always goes to the worst case scenario.  Every thought i have is worrying about my baby girl.  Every picture I take of her I wonder what if this is the last picture I take?  My first day back I threw up twice and had to pull over on my drive in because I was having a panic attack.  My class was small and  they were both excited about work so it made it easier to teach.  I saw old friends and it started to feel more familiar.  The next day was much easier.  I still checked my phone about 100 times to make sure everyone was okay but I remembered how much I love my job.  I talked to coworkers about Capri without breaking down.  I am so fortunate to have a job where I only have to work 2 days a week.

I have spent most of the week looking into how much it is going to cost us to take Capri to the Mayo clinic.  10 to 20,000 dollars for the 2 and a half weeks we will be there depending on how much insurance covers.  I've gone over our budget again and again, seeing where we can cut a little here and a little there. Every extra penny goes into savings so we will be ready by next spring.  Do you know what kind of wedding I could throw her for 20,000 dollars?  Or the vacation I could take her on?  Peace fills me knowing that if she can make  it through this surgery though she is going to be okay.  Her heart will be "fixed".  We can go on vacations another year.  I can start a savings account post surgery for her wedding.  Everything is going to be okay.  We always find a way to make it work, this isn't any different.