Monday, December 11, 2017

Settling in

We are settling in for a night at home. Tehilla is clearly not feeling well and seems off. She started the Augmentin right away. And went to bed at her usual bedtime.

She woke up a few hours later feeling very unwell and then very hungry for pasta. She let me check her oxygen levels. She was back up to 83-85, so we are very happy.

She has insisted on sleeping in our bed. We will see how tonight goes but things are looking good and should allow us to stay home and out of the ER.

Sunday, December 10, 2017

Desat Judgements




About the moment that I stepped off the plane from England, everyone in our family got sick.
Tehilla seemed to have a virus that got worse and worse. It finally developed into an ear infection, while the rest of us were diagnosed with strep infections. Five antibiotics handed out twice a day...feels a lot like winter.

Tehilla went back to school a few days later when she was symptom free. But the past few days she has been napping and a little lethargic. Today, I was called to school because she threw up.

While all the various teachers clucked around her offering their old wives tales as medicine, I studied Tehilla's face. She was purplish and looked unwell. I changed her clothes and pulled my pulse ox out of my purse. 73 and then 78. Not good.

I called our doctor who wanted us to rush to the ER. I didn't agree. Tehilla desats when in pain and this has happened repeatedly with ear infections. I wanted her to be seen but our doctor was leaving the office and the doctor on call is someone we don't like or rely on for medical advice. I don't want to go to the ER with all the nasty illnesses going around now and risk exposure to Tehilla.

I talked it out with our doctor who agreed it's probably that her antibiotics aren't working or it's progressed to pneumonia. He wrote a prescription for Augmentin and a referral to the ER. We are to start her on Augmentin right away and if we see any other signs or think she is heading downhill, we are to go to the ER.

We are so blessed to have a doctor who fully trusts our judgement and is willing to work with us.

Prayers that I'm right and we don't have to run to the ER tonight.

Sunday, December 3, 2017

Miracleversary

They all were miracles. All 4 of her open heart surgeries were miracles. Each in their own right. But there was something very different about that 3rd surgery, if you will all remember.

For those that were part of the blog family three years ago- you know that it wasn't just that the odds were against us. It wasn't just that open heart surgery has a challenging success rate. It was that she wasn't meant to survive.

Those were the days when our doctors eyes were brimmed with tears. Those were the days when we heard the crappiest words you can hear, medically speaking: "out of options" "no chance of survival"...

And those were the days that we turned to you. We had absolutely nothing left we could do and nowhere to turn. And you embraced us in the warmest hug a family could ever give. You cracked the heavens open with your prayers. You filled charity boxes. You baked challah en mass.

So, yes, I made up a word. Miracleversary. It's a great word. Tomorrow marks the day that a complete miracle happened here. "Nes Gadol Haya Poh". Today marks the day that you all showed up when you were asked to. You all stood by our side and loved the heck out of us and our daughter.

I love you, blog family.

Friday, November 24, 2017

Manchester and Leeds

Wednesday night, I spoke in Manchester and Thursday in Leeds.



There is always one or two interactions that always stay with me. This time it was Chaya in Manchester and Shira in Leeds.

After speaking, Chaya came up to me and let me know that as a med student, how much my words meant to her, that our story would always stay with her and she would never abuse her power as a doctor, like Dr. Big Nose.

Then there was Shira who is studying to be a medical clown and loved hearing about our interactions with medical clowns and how bringing a smile to a family stuck in the hospital can give the perfect relief to a hard situation and actually help recovery.

I'm brought in to speak to students to share our family's journey and inspire them. But it's situations like these that actually bring hope to me. Thank you, Genesis, for the wonderful experiences and all the good that you do!

And now, blog family, it's time to go home and spend Shabbat snuggling with my family!

Wednesday, November 22, 2017

Nottingham and Bristol

I arrived in London on Sunday night. I've been flown in by a program called Genesis. They provide programming for university students in England.

Monday, I was sent to Nottingham, where I gave my first speech. Yesterday, I went to Bristol.

I speak about our family's journey and what we have gone through. I also talk a lot about you, blog family, and all that you have done to support us and help us through out heart journey.

It's unusual to spend so much time reflecting on our life but it only reminds me of how truly blessed we are.

Today, I will be speaking to two different groups in Manchester.

Sunday, November 19, 2017

London Here I Come!



So after being home for one week, I am now waiting to board my flight to London. I'll be all over the country during the next few days, speaking about our family's journey.

Tehilla's reaction when I said I was leaving again, "It was amazing when you were gone. It'll be great!" Thanks, kid. I'll miss you too.

See you all on the British side.

Wednesday, November 15, 2017

Cardiology Check-up

Everyone take a big sigh of relief.



Everything is fine. Her oxygen saturation is a little low at 83 but everything looks good. Thank G-d.

The big question is whether we should close the fenestration (the remaining hole) in her heart via catheter. It will raise her oxygen saturation once it is closed. And give her more energy. We joked that Dr. Golander has to work better on his marketing angle. We told him he should have told us that it would make her sleep through the night or stop throwing temper tantrums.

Ultimately the decision was made to not do it in winter as she will have a harder recovery and adjustment if she gets many colds and coughs as she is bound to do.

So we are waiting until the spring. In 6 months we will come for another check-up. If her winter was not ridden with lung infections than she will have a catheter in the spring and close the fenestration.

No surprises, everything stable and good and room to make decisions based on preference- so honestly that couldn't have gone better.