Going home (6 days post-op!)

We are going home! Just 6 days post-op, Ramona is doing great and we have been discharged! She definitely still has some major healing and recovery to do, but we are so happy to be able to go home!

We will be lying low for a while so we can be careful to follow her sternal precautions and restrictions for the next few weeks. We will also have several trips back to Lurie in the coming weeks for follow up appointments, and hopefully cardiac rehab. 

It's just unbelievable how much she has improved each day since her surgery, and we are so looking forward to her continued progress. She has had some really, really hard days, but, by God's grace she has made it through and each day is getting better. Thank you, Lord! 

I'll try to do a post with more details about her surgery later, but, for now, rest. 💕

Prayer requests: 

- rest

- healing

- that her chest won't feel itchy (she has been bothered by this much more than by any pain) 

- that her adjusted heart will work wonderfully 

- for Marshall and the other kids waiting for hearts 💕

Post-Op Day 2

Hi there, I just wanted to report that Ramona is doing well. Her surgery on Thursday went as well at we could have hoped. They were able to complete her myectomy (removing some of the extra muscle inside her heart) and change her pacemaker out for a different model that includes a built-in defibrillator. They had backup plans (and people) on stand-by due to the risk of certain complications from the procedures and from the anesthesia, but everything went according to their "plan A." It was a long day, and she came out of anesthesia quite feisty, so they gave her a sedative to help keep her calm through the night. 

Yesterday (Friday) she was still pretty out of it most of the day, and her team was busy balancing fluids, tweaking/weaning meds, and doing various tests to check all sorts of things. She started struggling with nausea and was just pretty miserable overall. She slept very poorly last night, and I think a lot of that was due to her being upset about all of the various things she is attached to - multiple monitors, multiple IVs, and a chest tube. Besides the IVs in her arms and leg, she also has a central line right where her neck meets her shoulder, which she doesn't love. 

After that rough night, she started today pretty miserable, too. She was still dealing with nausea until around noon, and also had more pain today than yesterday. But, this afternoon she was feeling well enough to get out for two nice slow walks. (Not feeling great, but much better than she had been.) For the first walk she just made a lap around the unit (which was much more than we were expecting her to be up for, given how she'd felt in the morning), and for the second walk the nurse took us down to the 15th floor so we could bump into her buddy Marshall. She was pretty happy about that :)

Ramona is still pretty puffy from all the extra fluids she had to get during and after surgery, and she is still pretty quiet and lethargic, but the doctors say that she is doing great. We're hoping her chest tube will be able to come out soon, which they say will really help improve her pain and discomfort. I'm hoping she'll start feeling and acting more like herself after that, too. We haven't seen her friendly, happy, silly personality since Tuesday. She's asleep now, and we're also hoping for a much more restful night, especially after her excursions today.

These post-op days are some tough stuff. But, overall, we're just so thankful for how smoothly her procedures went and how well she is doing. 

Prayer requests: 

- thanks for her surgery going so well, and for God's continued provision

- for a restful night tonight

- that she'll feel better and more like herself

- that she'll be able to eat and drink more tomorrow

- that this surgery will allow her heart to serve her well for many years to come

- for Marshall to get his perfect heart soon 

"The cords of death entangled me,

the anguish of the grave came over me;

I was overcome by distress and sorrow.

Then I called on the name of the Lord:

“Lord, save me!”

The Lord is gracious and righteous;

our God is full of compassion."

- Psalm 116:3-5 -

Myectomy Tomorrow

Just a quick update to say that Ramona is slated to have her myectomy at 8:00 am tomorrow (September 5). We'd appreciate prayer for all of the doctors and nurses involved, for a smooth surgery and recovery, for this surgery to have a positive impact for many years to come, and for Ramona (and all of us) to have peace knowing that God holds her in the palm of his hand and works all things together for good.

Thank you ❤

The Lord bless you and keep you;

the Lord make his face shine on you

and be gracious to you; 

The Lord turn his face toward you

and give you peace.

- Numbers 6:24-26 -