Test Results & Next Steps

 

Sister snuggles!

Ramona had her procedure/testing yesterday morning. She had to stay flat on her back for four hours following the cardiac cath, but she was pretty sleepy and snoozed through most of it. The procedure itself went smoothly. Due to the high risk a cardiac cath poses with her condition, they had several precautions in place in case they ran into any complications (including having a surgery team with an ECMO [heart & lung machine] waiting in the hallway). Thankfully, the procedure went off without a hitch.

 Unfortunately, though, the test results were not what we were hoping for. Her condition can cause the pressure inside her heart to rise, which can also cause increased pressure in her lungs. Unfortunately, both of those are high, in addition to heart not functioning (contracting & relaxing) as well as it used to. 

The doctors feel that it is definitely time to list her for a transplant. And then things got confusing.  Initially they were going to admit her until Tuesday, which is when the transplant team would meet together as a whole and decide the urgency level at which to list her. But, now they’re sending us home today for the time being. They said it will take a few days to get all of her lab results in, plus some of the consults that need done can’t be done on the weekend anyway. Then, once they can get everything finalized, they’ll meet and determine the level of urgency to list her at. The doctor said he thinks this is what will take the majority of the time when they meet.

There are three levels of urgency: 

— 1A is the highest priority, and children listed at this level live at the hospital until they receive a transplant (which could be weeks, months, or more).

— 1B is second priority, and these children could be at the hospital or at home, depending on their needs.

— 2 is the lowest priority and waits at home.

Based on what we’ve heard so far, my feeling is that she’ll probably be listed at 1A, but we won’t know for sure for at least a few days. But, we’re glad they feel comfortable with her going home at the moment. None of us had been expecting a long admission right off the bat, so we’re thankful it works out for us to regroup (and repack). We have a lot to process and a lot of logistics to figure out. We were able to get a room at the Ronald McDonald House last night, which was a blessing, so hopefully that will work out again when we return. 

We had a few really hard times, but overall, Ramona in great spirits during this admission. She was upset when she almost had to get a poke this morning, but her diligent nurse was able to get blood through the IV she already had in (thank you, Lord!). Other than that, Ramona has been cheerful! She even said, “This has actually been pretty fun!” at one point (as she was watching YouTube, ordering ice cream with supper, and being waited on hand and foot 🤣).

One funny thing is that the head transplant doctor told us today that there are two groups of trouble makers at the hospital - dads and grandmas. And it’s funny because it’s true! 

I also need to give a shout-out to Mimi for helping with Dottie up here the last few days, and to Papa and Grammy for tag-teaming and juggling the other kids at home. We’re fortunate to have wonderful families! Thank you, also, to the people who have reached out to us the last few days, even though we haven’t gotten back to most of you in all the chaos. We appreciate your love and support. ❤

Getting some more pictures. 

Living her best life visiting sister! 

Game time! 

A Busy Week in Chicago

 

Crazy cotton candy after her
appointment on Monday. 

After having to reschedule a couple of times for various reasons, we've got a busy week at Lurie Children's Hospital this week for Ramona. We drove up for the day on Monday to meet with a doctor who is only in the office on Mondays, and we headed back up again today. We'll be in meetings with various doctors/specialties all day tomorrow (Thursday) - from 8:00 a.m. to 4:00 p.m. Then, on Friday she'll have some testing done with a cardiac cath. 

We're anxious to see what the doctors here think and what they'll recommend going forward. 

The Ronald McDonald House is already full tonight, so we couldn’t stay there this time. But, Uncle Jesse is letting us stay with him instead, which isn’t too far from the hospital, and includes Bluey and popsicles!

We'd appreciate your prayers, especially in the following areas:

- for us to understand and remember all the information we're going to get tomorrow 

- bravery for Ramona, as she will be under anesthesia Friday, which has made her pretty anxious in the past

- safety during her testing & anesthesia

- clarity and wisdom moving forward

- healing

Thank you for praying for and caring for our sweet girl and our family!

Do you not know?

    Have you not heard?

The Lord is the everlasting God,

    the Creator of the ends of the earth.

He will not grow tired or weary,

    and his understanding no one can fathom.

29 

He gives strength to the weary

    and increases the power of the weak.

30 

Even youths grow tired and weary,

    and young men stumble and fall;

31 

but those who hope in the Lord

    will renew their strength.

They will soar on wings like eagles;

    they will run and not grow weary,

    they will walk and not be faint.

Isaiah 40:28-31

Aquarium at Lurie's 

Ramona took lots of pictures of the city.