TeamGracie.org

Thanking God for all His goodness today. We are trying to get back to “normal” by spending time by the pool. Even Toby is in on the action. Love you all. #stayhome

Praise God! We finally brought Gracie home on Wednesday, April 8. God has been good, and we’ve had two really uneventful and restful nights at home.

It has been a little chaotic bringing her home with new equipment and additional needs. We are having to establish some routines and organization in the house in order to care for her now that she uses a ventilator. There are some new supplies to learn to use as well. (Read: up to our ears in boxes.)

Gracie is still adjusting emotionally to the “new norm.” Having to rely for most of the time on the ventilator is competing for worst thing ever with the constant noise in her throat. Sometimes she gets a little break from the vent and breathes independently. We pray for her to build the strength to do this for longer periods of time and therefore need the vent less and less.

Now it’s time to bring her weight back up to a safe place and recover!

Thank you so much for going on this journey with us. Be safe. Love you all.

Feebs

Still in captivity, like God’s people in Egypt. But still praising God for His goodness.

Waiting for a discharge this week, hopefully. Wishing you all a beautiful stay-at-home Palm Sunday. Many blessings to you and may God reveal His glory to you today.

Happy Palm Sunday, feliz Domingo de Palmas.

Febe and Gracie

How do you make the best of a bad situation?
1. Get the most sun you can.
2. Get the most Son you can.
3. Pray. Read your Bible.

We have good news: bloodwork shows that Hemoglobin is rising! Thanks to your prayers, and Vikki Juice.

Doctors and Respiratory Therapists are ever changing the settings on the ventilator to make breathing more comfortable for Grace. I think we are almost at optimal levels. Maybe we can go home soon.

Hugs.

Gracie has been improving in her ability to manage secretions. Sunday when she woke up, her voice was much more clear, and she had much less need for suction.

But alas, this peace would not last very long. In order to prepare her for going home this week, she has to be connected to and begin using the take-home ventilator that arrived on the weekend. They put her on it at 10:30 Sunday morning and she is definitely not as comfortable with the mini-vent as she was with the hospital vent.

We are hoping that the next 2-3 days will be just a period of adaptation and she can eventually feel comfortable. She has mentioned that breathing is a struggle again, which was something she was saying at the beginning of the Trache process. This is definitely “two steps forward one step back” pretty much every day.

Grace is back to not speaking very much.

Also, Grace is showing a drop in Hemoglobin and other signs of anemia. She has lost 7-8 lbs since arriving here in February.

Please pray for peaceful and stable breathing.

Please pray for the anemia to go away and weight gain.

Please pray for me. I’m losing it.

So every morning Gracie wakes up and doesn’t like how her voice sounds. I explain that she’s a little hoarse because she has spent the whole night without speaking. This is because her Trache balloon is inflated while sleeping so no air goes through the vocal chords. In the morning she gets an aerosol treatment, the balloon is deflated, and then she has to warm up her voice a little bit. Hence, “I’m a little horse” was born. 🐎 🦄 She is so done with my wimpy attempt at humor!

Day 39, and counting.

Hello again. It’s been a few days since I posted. And I haven’t been returning phone calls and text messages. My apologies. To be honest it’s been a difficult journey, and I’m really worn out. We have many answered prayers to be thankful for and we also have challenges.

Answered Prayers
Gracie has made great progress as follows:
• She is finally sleeping in a normal pattern at night
• Calcium, Phosphate, and all other levels are perfect
• She has been spending the whole day every day since Tuesday in a chair instead of the bed
• Her days are spent in Speech Therapy, Physical Therapy, playing a game, building a giant puzzle, as in the photo above, and FaceTime with friends and family
• The Bone Density Exam was done on Wednesday and gave a normal result, which means Gracie can bear her own weight! And more importantly she can start physical therapy again to build muscle strength.
• Every time she stands up she is a little stronger and even did a little dance yesterday
• if you’ve called her on the phone, you’ve heard how strong her voice is now, but we still need suction often

Challenges
• Rick has a pretty bad cold so he’s been staying away since Monday. Therefore, I am a big mess. Exhausted, irritable, lonely, without patience.
• Some of the take-home equipment Gracie needs arrived in the ICU today, and I had a crash course In respiratory care. Needless to say, I failed the class. The word “overwhelmed” does not begin to describe this.
• Now that all the sedation is gone and she is aware, Gracie has been asking why, when, how. Mom’s words alone are not enough to satisfy her need to understand her situation. This is hard.
• I have not told Gracie the severity of the world health crisis, but it hangs over my head as we get ready to go home soon.

Thank you for hearing my rant. Be safe. Love you all.

Good evening everyone. Grace has had busy day, today. She was out of the bed and into a chair early in the day, and has been there well into the evening. It doesn’t sound like much, but going from four weeks in a bed to sitting in a chair is huge progress. We are also grateful that her calcium levels have returned to normal.

Also, Mom and Dad had been concerned about the way the Trache sits on top of the tracheotsomy. Surgeons came to look at the healing area and determined that she needs a custom-made Trache. That’s Gracie, always so extra.

We are still struggling to get enough sleep at night. Today is her last day on sedatives. Hopefully we can put all of that behind us and get into a normal sleep cycle. People with epilepsy need a good night’s sleep most of all.

“Sprinting” was more like a crisp walk than a run, today. She didn’t do as well on the low settings of the vent. Needed a little more support. They also tried something new called a T-Piece. She was stable for four hours, and then her breathing got labored, so they switched her back to the regular ventilator.

This breathing thing we take for granted is so delicate. Take a moment right now to thank God for all the health you enjoy and the health of your family. Trust me.

Our going-home day is tentatively set for early next week. Let’s pray for that!

Love you all,
Feebs

So Gracie is shaking it up down here at NCH. She is making progress every day. It’s great hearing her voice again even though is a little labored, as we get accustomed to speaking over the Trache.

We are ever grateful for your constant prayers. Here a few specific prayers for those who like to lift up a detailed prayer to the Lord: • Calcium levels are high, pray for levels to normalize
• Pray for the process of weaning from sedation to continue without complications • Pray for Gracie to sleep at night, she is not able to sleep soundly • Pray for no more nightmares!
• Pray for the “sprinting” process to successfully strengthen her lungs and breathing • Pray for our going-home day to arrive soon!

We love and appreciate every one of you. Please be cautious and safe out there. Blessings

Have you seen this face lately? It’s been a while since we’ve seen it. But we are so blessed to report that Gracie is moving forward in her recovery and healing with the trach. It’s a slow process but she must be weaned from all the sedatives while at the same time building strength in her lungs and breathing ability, to wean off the ventilator, while also learning how to speak again.
Your prayers are being answered as she continues to show her courage, faith, and make-it-happen personality.
Even though only mom and dad are allowed to be here in the hospital, we are encouraged by your hearts and know that you would be here if you could.

A friend recently shared these verses with me, so I share them with you. Colossians 3:12-15
12 Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience. 13 Bear with each other and forgive one another if any of you has a grievance against someone. Forgive as the Lord forgave you. 14 And over all these virtues put on love, which binds them all together in perfect unity. 15 Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful.