From perfect to problems

from July 9 – discharged from TCH

She was perfect. 

Well, technically, I think she is pretty perfect all the time, but she was perfect in her heart.  Her breathing was better. Her stamina, attitude, and color were better. She was doing so well.

Then there were problems. 

First, we noticed the number of breaths. At rest, she was breathing faster than our overweight, old Labrador after running circles outside. Problem #1. Then, we noticed she became out of breath after moderate activity. What once was an awesome new ability was now holding her back again. Problem #2. After that, came the cough. No drainage, just cough. And most of the time it was after being out of breath.  Problem #3.  Hiccups followed shortly. I know what you are thinking – hiccups?  We get those all the time. Well, Reiss doesn’t. And when coupled with Problems #1 through #3, this Problem #4 points to heart failure. 

We knew this was serious when our cardiologist called our pediatrician himself to request an appointment for Reiss. She had an X-ray and blood work. The X-ray came back showing a minuscule amount of fluid on her lungs. The pediatrician and the radiologist said it could be a virus.

Really? A virus?  I had to kindly decline that explanation. I know what a virus is and I know my child. It’s not a virus. We have had the diagnosis of “this is probably just a virus” in previous pre-surgery situations with similar symptoms and those diagnoses were incorrect. So, no.  

Thankfully, I didn’t have to pry further after one blood test came back as abnormal. Her BNP levels were outrageous, pointing to heart failure. 

But she looks so good. How could she be in heart failure? My mom actually asked this to the doctor. He said this is how it happens. It doesn’t look like an issue until it becomes an urgent situation

Our cardiologist in Springfield got in touch with Texas Childrens and made sure they had all the information they needed. They agreed she should be hospitalized. The cardiologist said it was a good thing we were cognizant of our child’s norms and changes in her condition.  This is just how we are – watching her every move. 

With the amount of distractions in life, it is easy to not see what is really going on with your children – from eating disorders to heart disease, emotional needs to mental health issues, problems with school to negative outbursts of emotion, we have to pay attention. And not just pay attention – question what you think you know to be true. Not in a cynical way, but by being more inquisitive and self-aware enough to be able to look at yourself and think – am I looking at this from the right angle? Are my words forming properly to get the answers I need? Am I truly understanding? Is my child getting what he/she needs from me?

We pay attention. We aren’t perfect, but we try.  This time, our trying paid off. So, here we are. From perfect, straight to problems. 

We pray the problems aren’t as bad as they could be – that we may be in the hospital for a while (no idea on the definition of “for a while”), but not need any further surgical intervention. 

To Houston we go

Her right ventricle is failing. We will be on our way to Houston this afternoon. There is a possibility that they could administer some medications to help the issue, but we also know that if it is failing and medicine doesn’t work she could need a heart transplant. The pediatric cardiologist in Houston agreed with our cardiologist in town that she needed to be hospitalized sooner than later. 
Please pray for peace and wisdom during this time.

Signs of heart failure?

Late last week, Reiss started being out of breath after moderate a utility, breathing fast at rest, coughing without signs of nasal drainage, and hiccuping. 

So, we took her into the pediatrician yesterday to make sure she was okay. We were worried she was having issues with a leaking valve, or heart failure.

She had an X-ray and blood work completed to see if they could find something abnormal. They found that Reiss had elevated BNP levels (a measure of heart failure) in her blood tests last night. To compare – the last time her test was “elevated” was in Dec 2015 and the number was 350. Yesterday, it was 7000. 

We are at the cardiologist this morning. A visit to Houston may be in our near future. 

6 weeks down, future to go

Today is SIX WEEKS post-op!  Wow. This has gone by so slow and so fast at the same time. We have been busy trying to keep Reiss well and safe – staying home from large crowds, asking for family to change clothes and wash hands obsessively before and while around her, making children wear masks while playing with Reiss, and holding her back from jumps,runs, swings, and more. 

The turn-around in Reiss post-op, or even since we have been home, has been nothing short of amazing. Talking, walking, running, dancing. All things Reiss can do without getting out of breath. 

Aaaah, to just breathe

What is that like? To be out of breath every minute of every day?  To want to play and do, but be held back because your heart and lungs just can’t keep up?

 All she wanted to do was be able to breathe, and now she can. 

This is our new normal – going outside and running 10 feet to the pool without complications, visiting the bank to put her piggy bank change in her savings account without (too much) fear of sickness and coughing blood, looking forward to the fall and possibly enrolling in gymnastics classes. 

There it is – looking towards the future. Our new normal is a new future

We cannot begin to completely express our gratitude for all the help and prayers we have been blessed with along the way. Friends, family, and complete strangers have pitched in to help us during this stressful time. 

Thank you.  A million times, thank you.

This is not the end, however. Reiss’ heart journey will be a major part of her life forever. More procedures, open heart surgeries and doctors visits will be necessary to keep her going. When will her next one be and what will need to be done?  We cannot be sure. What we can be sure of is this – Reiss’ new future, her new normal, will prove to be just as amazing as our little, brave girl and the medical advances which helped change her quality of life for the better. 

The next 6 weeks

After Reiss got her chest tube out on Monday, the next 48 hours went by pretty quickly.  Her echo, x-ray, pacemaker, and EKG tests came back good enough to warrant a discharge for Reiss, and they sent us home with a long list of “don’t doIMG_6297 this.”

Over the next 6 weeks, Reiss/we cannot:

  • lift, push, or pull anything that weighs over 5 pounds (including her body weight), or perform repetitive movements (like ball throwing)
  • pick her up from underneath the arms, or pull her by the arm
  • play on a bicycle, trampoline, swing set, playground equipment or anything else that she can fall from and hit her chest.
  • be in crowded places such as school, church, birthday parties, family reunions, sporting events, grocery store, etc

We must

  • follow up with Reiss’ pediatrician, cardiologist and pulmonologist
  • supervise closely when playing with other children

For now, we are watching Reiss pretty close. She wears a mask when we leave our room at the Ronald McDonald House, and we have what seems to be an unending supply of antibacterial solution everywhere we go, after everything (I mean everything) we do.

Reasons for such strict protocol

  • Her surgical wound, especially with two open heart surgeries in 10 days, is still healing.  It will take her sternum 6 weeks to fully fuse back together.  Until then, if any bacteria gets on her wound, it will be able to go directly to her heart, causing major issues.
  • Her pacemaker is on her lower, left hand side, just underneath her rib cage in her belly.  It is still healing, also. Any blows (big or small) to her belly, could dislodge her pacemaker box, or its leads.  We learned during Reiss’ pacemaker test on Monday that her escape rate was in the upper 40’s, not the 70’s as previously thought.  That means, if her leads break or become detached from the heart, it will quickly become an emergent situation since her heart is mostly dependent on the pacemaker to survive.

Reiss went home on a handful of medications

  • Lasix – a diuretic to reduce the build-up of fluid in her chest and around her pacemaker incisionIMG_6293
  • Aspirin – to help thin her blood and reduce the probability for blood clots in her pulmonary conduit
  • Antibiotic – the is customary to reduce the probabiolity of infection after surgery

Prevacid – for acid reflux. We were on this prior to surgery

  • Sildenafil – we were on this before surgery to help relax her vessels and reduce the probability of hemoptysis (coughing blood)
  • Iron – we didn’t take this at the hospital, but will continue this post-discharge

During her hospital stay, she was never on any allergy or asthma medicines.  Before surgery, she was on a pulmicort nebulizer treatment twice a day, and Zyrtec and Singulair both once a day.  These medicines were prescribed to Reiss in March 2015 after the doctors in St Louis couldn’t diagnose her reoccurring hemoptysis.  The idea was that if we could control the cough that was causing her to burst blood vessels, we could control the hemoptysis. So, they prescribed allergy and asthma meds hoping it would help.  It has never helped.  In fact, her hemoptysis didn’t really seem to get better until Sildenafil was IMG_6298prescribed in July/August 2015.  At our last local pulmonologist appointment, we talked about trying to wean Reiss off of these medicines slowly post-surgery.

Looks like we have successfully weaned her off of these meds over the last two weeks.  We have never seen any increase in nasal drainage or coughing because of it.  I do believe that her headache the day or two post-surgery could have been partly due to the lack of steroids (the pulmicort) in her system. I have seen it before when she has missed a couple of treatments at home.  We asked that the doctors at Texas Children’s call our pulmonologist at St. Louis Children’s and ask if we even needed to readminister this allergy and asthma regimen. The answer was no.  No more breathing treatments and other allergy meds! Hooray!

Physical Therapy

Reiss had some physical therapy while we were in the hospital, but she consisIMG_6292tently had issues with her right foot.  Instead of walking heel-toe, she was dragging it and walking on the outside of her foot. The PT thought that because she had two open heart surgeries in 10 days, coupled with the inability to get out of bed and move to to pacemaker leads for those 10+ days, she has become weak and tight in her hips, causing her foot to turn as she walks.

This has improved slightly since discharge, as we are working on it daily.  However, we will probably need to get a prescription for physical therapy from our pediatrician to fine tune her technique once back in Springfield.

Keeping a 3-year old occupied and safe

It is interesting – trying to keep a child both occupied and safe from slips, trips, and germs.  Most activities outside the House include large groups of people, which is a no-no.  So we stay in.  We have many activities, including a tablet, we can do in our room, which helps.  We also go to the play room in the Ronald McDonald House .  Other than that, we don’t do much.

If the weather isn’t too hot or wet, we may make a trek out to the walking trail near here.  We’ll just have to wait and see.

Thank you

Thank you for all of your thoughts and prayers!  We believe in the power of prayer and its major role in Reiss’ recovery.

Chest tube out 

Reiss got her chest tube out this afternoon!  It was scary, and painful, but she pushed through, focused on her breathing, then helped clean and bandage herself. She is so brave. 

The nurse practitioner thought we could possibly be discharged tomorrow if all echoes and X-rays come back looking good. We will have to stay one week locally for a follow up appointment, then be able to make the trek back to Missouri. 

Reiss was able to visit the play room earlier today on one of her walks. She was excited to be able to play outside of her room and even showed a little more pep in her step. 

New room

We are in a new room on a different floor. Hooray!  We will be here until we can get Reiss to walk well on her own and the chest tube removed.  The next day after the chest tube removal, Reiss will have an echo and multiple angle X-rays to make sure she isn’t retaining fluid.  As long as she her fluid doesn’t increase after the tube is removed, we can be discharged. 

For now, we will continue to get her up and moving, as well as eating and going potty regularly. We love our new room! There is more space and a lesser amount of pokes and prods from the nurses. We are allowed more than 2 people by the bedside at one time, have a couch to sleep on, and our own dedicated bathroom. 

Up and walking

Reiss walked further today (again, thanks to adorable babies). Her right side is weaker than her left, causing her to walk/shuffle a little crooked. We will continue to work on that while we are here. 

To keep her attention, we have movies, games, baby dolls, and FaceTime with cousins. 

If someone from the step down unit leaves today (there is just one possible), we may be moving. 


We are just hanging out now. Reiss is stable enough to go to the step-down unit, but there are currently no beds available. We are hoping some patients get discharged today so we can move. 

Reiss is still apprehensive around nurses and doctors, and is fighting us on sitting in a chair and walking. I think the only thing helping to get Reiss out of bed is the opportunity to walk by the babies in the department and say hi.  

The doctors let us take Reiss off of fluid restrictions and oxygen. Her pulse ox is staying in the high 90’s.