Ear Tubes, Blood, and Coumadin

On August 15th Emma needed new ear tubes put in.  I had hoped we would be able to have this scheduled before Matthew went back to school, but it didn't work out that way. 

Thankfully my dad was able to come and my aunt could watch Edmund.  What an incredible thing to no have to worry about Edmund.  I knew he would have a great day and be comforted if he ever felt sad.  And what a gift to not have to go to the hospital alone.  Even though it was a minor surgery -- Emma is still my baby and I am her mama.

The day before her surgery I kept picturing Emma's face and the anesthetist who carried her away from us for her open heart surgery almost a year ago.  Her little body in the arms of this doctor, yes Emma had the "happy/giggle juice" but she still looked worried in her eyes as she looked at us as she was carried out of sight.  Well on the 14th I kept picturing it over and over.  As if it was on loop in my brain.  And I could feel the fear and anxiety.  I was worried for Emma's emotional status.  Worried for the trauma that might resurrect during that day. 

But there were prayers being sent up for her and for me and they made all the difference.

We left at 4:30am and were at CHOP a little before 6:00am because there wasn't any traffic.  We got registered and let Emma play in the waiting area. 

When we were called back to the prep room she was fine and happily played with the toys given her and the hand balloon Granddaddy made from a glove.  She seemed totally relaxed as different nurses and doctors came in to say hello and check on her. 

The "happy/giggle juice" was given to her and it was hilarious to see her speech become slower and she suddenly wanted to lay down.  But I kept talking to her, telling her what was happening and explaining to her in simple terms what would happen.

I brushed my fingers over her sweet smooth cheeks and we prayed over her.  Then it was time for them to roll her away and she got to go with one of her babies, her China towel, and her CHD blanket.  She was relaxed and not worried as she left. 

About 15-20 minutes later we were called back to receive her post-op (ear tubes are a super simple surgery).  She was just waking up and she looked a little worried but as soon as she saw me she reached for me.  I scooped her up (with the help of the nurse who helped figure out all the cords) and I rocked and rocked and rocked her.  She slept on and off.  When she woke up she would gag and heave like she was going to vomit but then wouldn't.  They ended up giving her zofran and that helped her. 

Rocking and holding her close I said to my dad, "How did I get to be her mama?"  And tears filled my eyes.  It was in that moment I let myself relax for that moment. 

I have realized that in the moment of trauma or hard, I go on auto pilot. I close off my emotions and do what need to be done.  After all, I feel I can't cry or be weak when my little ones need me to be calm and confident.  Even o when I was holding Emma after surgery I told my body to relax and made myself be still internally so she wouldn't feel it. 

You see, there is no promised day with ANY child, but I have learned over the last year how precious and unknown things can really be with a CHD warrior child.  I have prayed and fought with tears and pleads with God for friends of precious CHD children who have died.  Yes, some have recovered, but some have not.  Each day is precious.  Each time she comes out of surgery without complications if a gift.  So I hold the fear in and fight through in the hard and then when things feel okay my heart breaks open a little to show the relief. 

Finally Emma woke up and we went around to the cardiac floor and delivered cards and cookies to the CCU and CICU floors to thank them again for all their care for Emma.  We also did one for Emma's heart surgeon who I have not seen since we were in the CICU for her heart surgery.  We didn't get to see him but left it at the CICU for him to get later that day.  We saw a handful of nurses we knew at the CCU and it was wonderful to let them see Emma so healthy and strong!  We also updated Emma's Beads of Courage.  Each bead represents some medical thing Emma has gone through.  It is a story of her courage. 

Then we had breakfast (Emma actually wanted to eat and walk around!).  I brought Emma's favorite shoes, her pink squeaky China shoes because I knew it would make her happy.  And it did!  As she walked she stomped her little feet down, and many people turned and looked and smiled. 

Once home she was perfectly happy and herself!  What a gift!!  This is prayers in action!  We did notice bleeding out of her left ear when it was time to do the drops but after speaking with her Coumadin people and ENT people we were reassured that it was fine.  The next morning there was a large area of blood but her ear wasn't bleeding anymore so I didn't worry.  After her nap that day her ear seemed to have a pool of blood still in it and the drops for her ears weren't going in.  We ended up taking her to our local pediatrician and her ear was cleaned out, the ear tubes were still in, but we rechecked her INR levels and it was 3.8.  (Range is 2.5-3.5).  Friday is was 3.9 and today, Saturday it is 2.1.  Yes, we were adjusting her Coumadin but it is crazy how it can change so quickly.  We will recheck again tomorrow. 
 

 (Emma with her Beads of Courage bag driving home.)

And just in this I am reminded of how we are blessed.  We have a home INR monitor.  We only have to prick her to get a drop of blood instead of going to a lab and having so much trauma inflicted on Emma.  We have CHOP and excellent care there to call daily if we need and we can drive over there for help if we need it. 

I am also reminded of how fragile Emma's health can be.  Too much vitamin K and the INR can drop. Changes in diet have a huge effect on her INR, as does her health.  (And sometimes it feels like if the weather changes her INR changes, not really, but it feels like it! With how much I call our Coumadin people I feel like I am BFFs with them. haha!)  Because of her mechanical mitral valve her blood can't be too thin or it will clot and stop the valve.  But if it is too thin then she can have internal bleeding and other problems.  It isn't something I worry about but it IS a tension I live with daily.  I worry about making sure she hasn't forgotten her vitamins because if she does then that effects her INR level.  I try to keep her pediasure intake the same so that doesn't change her INR.  In the balance of needing her to eat enough calories and monitor her INR levels it can feel like my brain is always on. 

But Emma is here.  She is tucked into her bed now.  She napped in my arms today and each day is a gift.  A beautiful gift from God.  I never take for granted all the prayers and support from each of you.  You have carried us since the beginning and do so now too.