Heart Cath - October 31st, 2011

Arianna on her way to her first heart cath.

Thanks to Child Life Specialist she had an iPad to play with when she got there. Helped with her anxiety a bit.

Child Life Specialist helping Arianna decide what smell she wants in her anesthesia...She choose watermelon!

Arianna's cath got bumped back so the Child Life Specialist was helping us pass the time.

Then that dreaded time approached and I was able to take her back to the cath lab. She was terrified! Clung to me and cried to not be made to do it. She buried her face in my chest and I had to pry her face away and pin her to my chest to do anesthesia. WORST experience with putting her under. When her body went limp...I left her in the hands of the anesthesiology team and cried...

We waited an hour and then Dr. Sampson came out and said she did great! No left pulmonary branch stenosis so nothing was done. We would be seeing her after she was extubated and go to recovery. On the way, Dr. Sampson looked at me and said, "I have no idea what they thought they saw on MRI but her lungs are getting the same amount of blood flow." I knew at that moment that it ha to be God!

She struggle a bit in recovery so they gave her fentanyl which helped relax her until the anesthesia wore off. Her sats were still a little all over the place but we were wheeled back to the cath lab to finish recovering. We saw her heart sister, Liz, when we were being wheeled back. She came back with us and the most incredible thing happened.

Liz started talking to Arianna telling her how she gets so much strength from Ari when she's in the hospital herself getting procedures done. Arianna just stopped, looked at her with such understanding and peace, her sats stabilized and there was a moment that I cannot truly describe, but we are so thankful for the support of such an amazing friend!

Several hours in recovery watching movies and laying flat.

Grams always knows how to life her spirits!

Finally about 30 mins before we were discharged Devin was able to come see her. She was so happy to see him!

Final MRI report

I just got off the phone with the cardiologist. Got some good and bad news..so lets start with the good. Arianna's right ventricle pressure was at 100, which normal is less than 80. Not too bad for a post tet repair. The docs start to get concerned around 150. Her ejection fraction was at 47%, which normal is 45% so that means her heart function is good! Praise God! He thinks we will follow up with another MRI in 3 years so that was reassuring to think surgery could be postponed that long. :D

The not so good news...each lung should get 50% of the blood flow from the heart. Arianna's right lung is getting 80% and left lung is getting 20%. Looking closely at the MRI they believe they see a narrowing of her pulmonary artery(ies). The cardiologist is going to talk with the head of diagnostic medicine to make sure of this finding himself. He has already spoken with the cath doc and he said if this is for sure the findings then she will either need a artery ballooning or stent placed. Since clinically she is doing well this will not be an emergent situation. They are booking caths out into October so our cardiologist wants to get her scheduled ASAP. So we are looking at a cath in October.

Cardiac MRI & Lung CT

Arianna was scared driving to the hospital but we made sure to keep her mind off things while we were waiting. The fish tank is always a big help with that!



This is "Coco" her hospital buddy. He always goes with us to the hospital. He's apart of the zipper club as well!

She was in pre-op and starting to get a little nervous but she walked back on her own. Once she turned the corner and saw the table and ventilator and equipment she freaked out...so did I inside. I scooped her up and comforted her till she was doing a little sob. I asked for the mask to show her how to breathe..once she was doing that we attached the anesthesia and turned it on..in a matter of 2 minutes she was out and I layed her down..kissed her head and told her to sleep tight..


We had to keep Devin entertained with the iPod. He was watching a video of his Bepa (my dad) singing and he was in heaven. He just LOVES his Bepa!

Daddy holding Coco while taking a nap..

MRI and CT took 3 hours total! They said only 2 hours so I was getting really nervous. We had issues with the PACU not letting us in when she got back but apparently she was still intubated and under anesthesia. I told them once she was extubated I would go sit with her but they wouldn't let me. You better believe I filed a complaint about that. We did get in to see her and she was sitting up. She started crying cause she had an IV in her hand and I told her there would be no pokes..but we gave her a does of phenergen and took it out. She did extremely well and didn't throw up once, which is her norm with anesthesia. We were out of there 5 mins after she woke up!


When we left she was asking for food so we stopped and picked up McDonalds at her request.

I actually received a call from her pulmonologist before we even got home. He is an awesome doctor! He said her lungs look better than her last CT at 1 year old. She did have atelectasis but that is common with intubation. She lung sacs look good so she probably just has mild interstitial lung disease which means its affecting the lung wall instead of sacs! Great news!

She was a little tired for a few hours but by the evening was asking to go on our normal bike ride. Told her that she couldn't but we could do a walk..I couldn't believe it!


I got an email last night from her cardiologist and he saw the preliminary report which showed her right ventricle pressures to be around 100 ml/m2 and they don't get worried until around 150 ml/m2. He will let me know when he gets the final report. So I take that as good news and no surgery!!!

Tomorrows the big day..

We take Arianna for her cardiac MRI and lung CT. She has asked MANY questions including, "Mom, are they going to open up my chest?" about one hundred times. I think she remembers me telling her that they had to "put her to sleep" to do surgery so she is scared. She told me she is scared and that breaks my heart. I know its not surgery or anything but the fact that she has to be put under general anesthesia makes me sick to my stomach. The MRI should be about an hour unless the cardiologists needs to look at it more closely and the CT should be 10 mins..its right across the hall so they will wheel her across. I'll update when I get home..

Summer Update

We got the CT approved and will have her MRI and CT done at the same time. I have recently requested a second opinion with a new orthopedic doctor regarding Arianna's scoliosis. We have been told the past 2 years that she could get a brace if her curve goes above 30 degrees and at our last appointment he said she was not a candidate for that because its a congenital scoliosis which is not new news to him so that irritated me. Plus there have been many other issues with this doctor so its time to get a new one. We will also be having her immunology follow-up soon (which reminds me I need to call and schedule that) We did get her the pneumovax and prevnar 13 vaccinations last week since they are recommended for patients with chronic illnesses such as Arianna.

Other than that we are doing well. She has not been sick and enjoying summer with her older brother Cyrus. I'm in summer school which is requiring majority of my time so I'm looking forward to my 4 week break coming up at the end of this month.


Oh almost forgot..We got a new car!

AND

Devin has started walking last week. This was from my phone so sorry for the bad video. I'll try to get another video since he is really good at it now.

Cardiac MRI & Lung CT Scheduled

I just got the call from UMC to schedule Arianna's cardiac MRI. Man, was that a hit in the gut. I knew it was coming up but I hate when I get those calls. She was suppose to have this done at the end of July but they are booked so she is scheduled for August 15th at 10am. I am working on getting insurance to approve the CT for her lungs as well. If all goes through then she will be wheeled to the CT machine right after her MRI so we don't have to put her under twice. She does have to be put under general anesthesia so this is why I get nervous. Anytime your child has to be placed under its not a good experience. Praying that since she is older and I can explain things to her a little more that it won't be as scary and she will wake up from it okay. Last time she was delirious waking up and I pray it doesn't happen again. I guess what scares me the most is the fact that this test will indicate whether surgery is needed right now or not. It seems alot of our heart friends are having surgery so that just means our heart kiddos are growing up and with that comes heart tune-ups as I like to call it. Whatever the outcome may be I know that I have to put it in God's hands!

Cardiology Appointment - Feb 2011

Elliot the therapy dog

She has never liked the blood pressure check

Waiting for the doctors

Dr. Klewer interacting with Arianna.

We LOVE Dr. Klewer!

Annual echo

Conclusion:

Arianna's echo looked good but her right ventricle is definitely larger than last time. Dr. Klewer feels it's time to go ahead and get a cardiac MRI study to check her right ventricle pressures. One of two things will come out of this. (1) The right ventricle pressure will be below the threshold (something like 170) and we will continue with our 6 month follow-ups with a repeat MRI probably in a year. (2) The right ventricle pressure will be close to or above the allowed threshold and we will have to have surgery. The surgery would require a pulmonary valve conduit to be placed. We are still waiting on the date for the MRI but it will be either the end of July or beginning of August. If surgery is needed then we will most likely get it done before winter to keep her out the hospital during cold/flu season.

August Pics & Cardiology Update

I've been so bad about blogging and posting pictures.

Last month we took Arianna skating for the first time. She had a blast! It was alot of work for us but worth every minute of it.

Daddy & Devin

Arianna had her 6 month cardilogy update. She went home with a Holter monitor for 24 hours. We got the results back and everything was perfect! She had NO PVC's!!! Last year she had several so this was great news for us. :) We go back in February for her echo, which is the one I'm really nervous about. But for now, we will relax and enjoy every day!

Lots to update

I will warn you that I'm all over the place in this post. Just trying to get everything in. :)

I know it's been awhile since I updated. We are doing our normal weekly routine. Monday and Tuesdays we watch baby Brendon, Wednesday is speech therapy and every other week is my OB appointments, Thursdays and Fridays are filled with shopping, doctor appointments, and any errands we need to do. It is really nice to be able to do all of this stuff and not be on bed rest. (Sorry Megan I know it's been rough for you). I was on bed rest by 21 weeks with Arianna so I was really concerned about how I would do this time around. I'm still taking the progesterone shots, which are making me one crazy, hormonal woman. I just keep telling myself it's temporary and all worth it to keep this little guy inside and growing. Oh yeah...we're having a BOY! We had the baby's echo a few weeks ago and the cardiologist said his heart looked great! We have another echo at 32 weeks to confirm nothing has changed. Here are his latest pics..

This weekend we had our Mended Little Hearts meeting. We had a pizza party to celebrate CHD Awareness Week and Beads of Courage came and did strength beads with us. Here are some pictures from that day.

Getting ready to load up the car.

Arianna & Brendon

(This is the little guy we watch. He is adorable!)

Bepa helping Arianna make her strength bracelet

Speaking of the heart...yesterday was Arianna's cardiology check-up. It had been a year since her last echo so I already prepared her for that. Unfortunatly, they got a new machine that does an EKG at the same time so she was upset about the stickies they put on her. I think it also made a difference since the normal echo tech was not there.

If we talk on Facebook you already read about the results but I'm going to post it again anyways

The right ventricle pressures are rising, as we knew they would. Of course they will never give us a timeline for when the next surgery will be but I was warned it might be sooner than we anticipated. Her RV pressure was 21 back in Aug. 08' and today it was 24. If I remember correctly we don't want that number higher than 27. So if she continues with this pattern that would put as at needing surgery in about a year and a half. If the pressures get worse before then we will do a cardiac MRI and depending on what that information gives us will determine when surgery is needed. We go back in 6 months for a check up. Not sure if they will do another echo at that time. In the meantime we are just going to enjoy every day with her. Physically you would have no idea her heart is getting worse.

So last night Arianna's cough got a little worse. I checked her sats and she was borderline needing oxygen so we pulled out the nebulizer. Sometimes I think it works better than the inhaler.

I made her sleep in our room last night so I could keep an eye on her. Her sats stayed just high enough to not need oxygen. :) She is doing so much better today and not even needing her nebulizer!

Well I think that about covers everything. I'll try to update more freqently so I don't have to cram everything into one post. I appreciate everyone that checks in on us! :)

Roseola is gone!

Thank God! Arianna was sure testing me all week long. One of the symptoms of roseola is irritability...yeah that's also a symptom of being 2-years-old. lol! I'm just glad my baby is back! :)

Not much is going on lately. We are going to enjoy a week without therapy appointments or doctor appointments.

I just realized I never blogged about Arianna's Holter monitor results. Sorry. I got an email from her cardiologist and the monitor came back normal! :) We will continue our 6 months check ups as usual.

Holter Monitor

We got it on! Just have to make it another 16 hours till it comes off. She is actually fine wearing it as long as I don't take her shirt off but I had to get at least one picture.

So thanks to a wonderful heart mom in our Mended Little Hearts group I have Arianna wearing a monkey leash to hold her Holter monitor. :) It works like a charm!

Photo and video editing at www.OneTrueMedia.com

Arianna is helping me make NICU care bags for the heart families!

I just love her SO much!

So the tech today mentioned how much she loved the monkey backpack and how she wished she had some for her pediatric patients....so we our going out right now to buy some backpacks for the cardiology clinic at the hospital. It's working so great for us I want every family to have the option of using this for their child. So I gotta run...

Cardiology Update

I am finally getting around to blogging about Arianna's cardiology appointment. I know some of you already heard a little bit about it on Facebook.

Well the night before her appointment we practiced doing an EKG because it's been since she was 5 months old since her last one. Arianna was a little apprehensive at first but at the end she was asking to do it again and again.

Practicing with some stickers and string

The night before Arianna's appointment we made cookies for the doctors and nurses. Arianna just loved handing them out to the nurses. Sorry the pictures are blurry.

We waiting for an hour and a half before the doctor came in and it wasn't even our doctor. Last time we had this guy come in our room I told him I wanted to see our doctor and that was that. Well I asked about Dr. K (our doc) and he said it could be awhile till we see him so I decided to go ahead and let him proceed with the visit. It doesn't hurt having 2 docs taking a look at her. He has never meet Arianna so he read over hear chart then did his exam.

He said her heart murmur sounds the same as is written in her chart from 6 months ago. Thank God! He wanted to get an echo but I told him "our" cardiologist wanted an EKG done at this visit so he decided to go ahead with that instead.

She did okay at first since we practiced but after 3 or 4 minutes she was ready for it to be over.

After the EKG was done the doctor reviewed the strip and said her QRS wave was a little bit longer than normal. However, children with a tetralogy repair never have a "normal" EKG anyways. I guess the QRS wave looks alot worse on paper than it measures out to be. That being said he wants Arianna to have a 24 hour Holter monitor done to see if she is having any arrhythmias because that is common in tetralogy patients. I'm actually really glad they are doing this because there are no major signs of arrythmias and alot of children with tetralogy have died from them. I'm still waiting for someone to call me about getting the monitor so I will probably give them a call tomorrow to make sure they haven't forgotten about us.

So we were leaving the clinic and about to walk out the front door when I hear someone yelling my name. It was the cardiology nurse. She said Dr. K (our doctor) saw Arianna's name on the board and he wanted to say hi to her. :) That made my day so we rushed back to clinic and spent a few minutes with OUR doctor!

Arianna just LOVES this man...and so do I! He asked how her summer was going and what she was doing. She told him about bowling, swimming and her cousins. lol! I told him about the EKG and the Holter and that I'll be emailing him when she gets it off so he could take a look at it. At this point there is no need to stress about anything since this is just a precautionary test.

As far as other things going on, we meet with the school district this week to have our transition appointment for preschool. Basically it was all about getting her paperwork in order and telling them about her medical issues. Now don't get too excited...she probably won't attend preschool but we wanted to see what the school would offer her for therapy since she is being cut off at 3 years old from the Arizona Early Intervention Program. We have to go back for testing in the next few weeks so see if she even qualifies for special education preschool. Right now we are just looking at possible speech therapy being the only need for her. :) Which by the way, this week was her LAST speech therapy session! So I'm not sure if she will even qualify. We will just have to wait and see.

Friday we see the immunologist so that will be interesting. I'm praying for a wonderful report!

Potty Talk

I know it's been awhile since I posted but all is going well with us. Arianna has officially started potty training and she is doing amazing! She went all day today in panties and did not have a single accident. This week she has had 2 successful potties out in public and I'm realizing how much work this whole potty training thing is. lol! I'm just so proud of my big girl and wanted to blog about it. :)

Tomorrow is my birthday so my mom is going to watch Arianna in the afternoon so me and Robert can catch a cheap movie. :) Then we will have dinner at my grandparents house with the family.

Wednesday is Arianna's cardiology appointment so please keep her in your prayers for a good report. They will be doing an EKG and she hasn't had one of those since she was 5 months old. I'll have to practice a little bit with her tomorrow. We are also going to bake some cookies for the cardiologists and nurses tomorrow night so that will be alot of fun. :)

Hope everyone is having a wonderful week!

We got a wonderful report from the cardiologist today! They did an echo and everything looked the same. We will go back in August to see our cardiologist. At this point, they are ruling out her low sats as being a heart issue and throwing it back on those lungs. We see pulmonary in August so we will talk more about it then unless she gets worse. As of now her sats are back in the high 90's and she is doing well. She does have a fever that we are able to control with Tylenol but that is her only symptom.

I just have to brag about how wonderful Arianna did during her echo. This time I actually practiced the echo yesterday with her so I was able to explain to her what was going to happen. It was kind of sad because the whole time she kept saying, "no boo boo" and gave us a worried look. That breaks my heart that she is at the age to understand what tests hurt.

Since we are talking about Arianna's understanding I just have to comment about something else real quick. Last night we were laying in bed trying to wind down and I put the tv on Discovery Health. It was about a little girl with a genetic condition and she was going to see her doctor. I noticed Arianna got really still and was actually watching the tv. I decided to take this as an opportunity to show her that other little girls have to go see the doctors too and get all the same measurements (height, weight, etc). Normally she is shy about getting her weight and height checked, well not today. I was reminding her about the little girl we saw on tv that did all the same things and she just shook her head yes with a big smile on her face, but she still freaked out about the blood pressure cuff so they didn't do that one on her.

This afternoon we did some running around and by the time we got home Arianna's fever was creeping back up so we gave her some Tylenol and she took an hour nap. Of course that hour nap meant she was up till midnight. That is the reason I don't let her nap but my baby wasn't feeling all that great so I couldn't deny her some beauty sleep.

We did go out to eat for dinner tonight for the first time since October. I was very hesitant about it since we just had a confirmed case of the swine flu here in Arizona, but there was hardly any people at the restaurant and they stuck us in the back corner.

Sorry if I'm all over the place in this post. It's pretty late and my brain is only partially functioning.

Ramblings of a mother

I received the strangest message today from another clinic (one we have seen other specialists at including cardiology before surgery) saying Arianna has a cardiology appointment at their clinic on Thursday. I'm hoping this is because HER cardiologist is working their but I'll give them a call first thing in the morning to figure this out. If not, then we are headed to the other clinic to see a different cardiologist.

I wish I can say I'm not concerned anymore but I just layed Arianna down to sleep and checked her sats and she was in the mid to low 80's. Definitely not what my girl should be at. I put her on 1 liter of oxygen and will keep an eye on her very closely through the night. She had been fine all day, sats in the high 90's and actually eating a little bit ....so what gives?

Here's she is making blueberry pancakes for breakfast.

I will see what cardiologist says and then be putting a call into the pulmonologist. It's so frustrating because these two specialists always put everything off on each other. The heart guy will say its a lung problem, and the lung guy will say its a heart problem. It's so frustrating!!!

Who knows, maybe she really needs to get that next lung CT done that we've been putting off. Her last scan was already a year ago. Wow...time sure flys by.

I will let you all know if we go see cardiology. Have a good night!

What's going on?

This is the question that has all of us stumped right now.



In my last post I mentioned Arianna having lower than normal oxygen saturations. Well I've kept a close eye on her and decided yesterday she needed to be seen by the pediatrician.



Our wonderful pediatrician wasn't there so we had to see someone else. :( I was a little unsure about seeing this doctor because he was our pediatrician before we switched and the reason I switched was because he didn't take things very seriously before when she had low sats which ultimately landed her in the ER for respiratory distress.



Let me start out with the good news. Arianna gained 1 pound in just 1 month! I don't think she has every gained weight like that. So she is officially 25 pounds! :)



I gave her recent history to the doctor and he listened to her heart and lungs. Lungs were clear so there isn't any pneumonia or chest infection to be concerned about. However, he said her murmur sounded a little harsher than what was dictated last month. Okay, now I'm trying not to get too worked up about that because he hasn't listened to her murmur in about a year.



He is concerned about her lower saturation's and thinks this she needs to be seen by cardiology next week. Unfortunately, our cardiologist will not be doing clinic for another 3 weeks so we will have to see someone else. We are scheduled to go in Wednesday morning so please keep Arianna in your prayers.



He also said we can give her oxygen if she is satting in the low 90's or 80's. So last night I gave her some O2 for a few hours. Right now she is borderline needing oxygen as well. She even has a slightly elevated temp at 99.7. What is going on?!?!

I've noticed she is a little more mellow today and sitting down more. I know I shouldn't get all worked up but as I'm typing all this out I'm realizing I am kind of freaking out. I'm not ready for her next heart surgery yet. Okay, I better not even go down that road of thinking.



I will leave you all with this cute bath picture of Arianna my mom was able to capture the other night.

***UPDATE 5pm***

After I posted Ari needed some O2 and she decided to take a 2 hour nap, which I happily joined her. :)

When she woke up I took the O2 off and she was satting at 87. I decided despite what the pediatrician said, to go ahead and give her the Albuterol inhaler and sure enough her sats jumped up to the high 90's. So I guess this is a lung thing. I'll keep up the Albuterol and hopefully that will keep her satting high. We will still go see the cardiologist next week just to be on the safe side.

Well I am not feeling in the mood to cook at all so looks like it's pizza night!!!