We went to the hospital yesterday for a check-up. I packed a bag just in case and then forgot to take it with us. Little asked,  “How long will we stay this time?”

Turns out we only stayed for three hours, we just accomplished a LOT into those three hours. (I am not going to explain everything in too much detail. . . just listing everything as a means of record.)

1. Little got an EKG – good news: the length of her GTCs has decreased with the adjust meant of her medication and so we will be able to continue giving her the medicine that helps her to sleep!

2. Little got an Echocardiogram – good news: the clot in her heart has shrunk a great deal! I personally couldn’t see it any more and Dr. M said she had to really squint to see it was there.

IMG_12553. They checked the information stored on the pacemaker – bad news: Little is still experiencing random bouts of arrhythmia. These are not long and not consistent but they are present. Little was hooked up to a Holter Monitor and told to keep it on for the next 24 hours. This device monitors the electrical activity of the cardiovascular system for extended periods of time. Little was just excited to have an excuse to skip her bath!

4. Dr. C came and checked the incision from the pacemaker’s placement – good news: the blood thinner Little is taking could have caused a pool of blood to gather behind the pacemaker and it looks like that is minimal if present at all!

5. Little is going to be a part of a clinical trial being done at Children’s Hospital and she got all signed up for that and all the blood drawn that’s needed – good news: she was already having blood drawn and so this trial didn’t add any additional drama to our visit!

Some people have asked about our other children and how they are doing. Bubba has reacted as one would expect a boy on the autism spectrum to react; he has a hard time with emotions and social cues and so he has listened to reports and responded matter-of-factly. My sister being here was so wonderful for many reasons but especially in regard to him. She said he would walk over and hug her and tell her he loved her. . . that’s the kind of thing that lets me know more is going on inside than can be seen with a glance.

KB is all heart and as compassionate as they come. She has listened attentively to all information and told her sister, “I couldn’t sleep I was so worried.” She has held Little’s hand while she’s gotten her shots, looked at the details of Little’s monitor and asked questions, and snuggled in a bit closer before bed at night.

Funny – Little had a visit to the Orthopedist on the calendar for Monday and so we went ahead and went. First thing they did was take a full body X-ray and so Little got to see her pacemaker sitting in her chest. She was fascinated. . . as was Dr. H who exclaimed, “THAT wasn’t there last time!!!”

We also had a visit to the Orthodontist today for a spacer to be put in (3 min. visit!) and Little walked in saying, “LOOK! I got a pacemaker since I saw you!”

I am looking forward to 7 days in my planner with no doctors! Maybe we’ll do something fun that I can write about here.

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4 Responses to

  1. doug says:

    seven whole days——its like a vacation, just ,pack up your troubles in your old kit bag and SMILE SMILE SMILE

  2. stephhw says:

    You will not cease to be in my prayers! I love you my sweet friend. Wish we could just have some tea together and slow down! Have a GREAT 7 days off!

  3. Jo says:

    Good to hear!

  4. Mo says:

    Good news! 😉 Thanks so much for sharing! Continuing to pray. Love u tons!


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