Keeping Positive….even when I want to scream!!!

I learned a lot about myself in the last 24 hours. I learned that we all have limitations but they do not define the true essence of who we are. Ryleigh finally settled down to sleep around 5:30 this morning She is struggling physically and now emotionally about her illness. Due to many reasons including her brain injury, exhaustion, pain, and medications she has been on a emotional roller coaster. She has needed me to be her punching bag (literally she hit me and a nurse after her procedures in the recovery room), her cheerleader, her teacher (explaining all that is going on with her), and a shoulder for her to cry and complain too. doctors and medical professionals.
All day her room was filled with people poking, prodding, talking, questioning, and disturbing her. Ryleigh has always been one to value her alone time and quiet time. She is not getting much of it and I think that is upsetting her. At night when all of the visits are done she and I really have down time. I think she enjoys the quiet so much that she tends to keep herself up just to have some normalcy. But last night was very difficult. She would settle for a bit and then get agitated and upset about anything. At midnight her heart rate went through the roof and would not come down. She and I were watching TV and chatting about everyday things she seemed quite settled. Then she started to huff and puff like she had run a marathon. This is a red flag so I called the nurse, she agreed with me, and doctors were called in. There is still a chance for a clot to appear in her body because we are not sure what is causing her clotting issues – even though she is on blood thinner it could still occur.
Ryleigh was very mad and determined that we were all out to get her. She cried, yelled, whined, and cried some more. What was determined is that she is in really intense pain and is not telling us everything. In her grogginess she said that she doesn’t tell how much pain she is in because she doesn’t want something else to be wrong and she should just suck it up! Oh my. So she was given some more pain medicine and finally in the wee hours she settled down and fell asleep.

I continue to be in awe of the talent, work ethic, and intelligence that surrounds us. The women and men who are caring for Ryleigh are so talented and focused. The commitment they show towards Ryleigh and our family is outstanding and I am so appreciative.

Ryleigh continues to be a complex case with layers of issues that she has. She is sick young lady and is needing almost one on one nursing care because of her pain, heart, bleeding, and brain. Ryleigh had three procedures done yesterday to deal with some of her acute issues. These procedures required anesthetic. She was gone from her room for almost 5 hours…it was quite intense.

Ryleigh had a cardiogram done of her heart under sedation. They insert a probe down her esophagus to get an excellent look at her heart. She had a standard echo cardiogram done the night before and it showed her heart was good but they wanted to make sure she did not have the hole in her heart that could have caused a blood clot to get to her brain from her leg. The cardiologist said there was very tiny hole but they did a blood gas test and did not see the gas move from one side of the heart to the other. The cardiologist said it is very unlikely that this hole would have passed a clot to her brain causing a stroke, resulting in the damage in her brain stem.

Once the cardiogram was done they proceeded to place a filter in her vein just above her leg. This is to prevent any clots from traveling up to her heart and lungs. It went very well although Ryleigh was quite queezy about having something like that in her body. This will help reduce the risk of her having a clot travel up and cause more damage.

Her last procedure was having a PICH I. V. put in. She has had 11 I.V.’s placed since January 2nd. Tim and I decided that having a more permanent IV would limit the number of needle pokes she will have. It is located in her upper left arm and will allow for more mobility and activity. It is another way they are helping reduce her stress and anxiety.

We have not had much definitive news about the reason all of this has happened. Our Ryleigh has been a bit of a popular one because her issues are complex and a mystery. Right now the plan is to deal with her clot and keep her leg pain to a bearable level. Many tests have been sent away to determine what is going on regarding her brain injury, crohn’s, and the clotting. It will take some time before the results come in. This week she will be getting follow up MRI to see if her area on the brain has increased or decreased. This will continue to give them more information about the cause of the damage that has occurred. She will also be getting ultrasounds of her left leg to identify whether her clot is reducing or not. It will take time for her body to reabsorb the clot and we need to be patient.

Ryleigh’s body is working hard to deal with all of these issues. Her hemoglobin dropped yesterday and they did another test this morning to see where it is at. She may need a blood transfusion today to counteract this.

We continue to pray, hug, laugh, and cry as the days and night are stressful and long. Tim, Chloe, and I are a strong unit, we are supporting each other and being thoughtful of how each of us are doing.
I gain strength from all of the followers on the blog and facebook. Pray for a quieter and more restful day for Ryleigh – she needs some calm and peace to help her body heal. Love to all of you!


13 responses to “Keeping Positive….even when I want to scream!!!”

  1. Oh my, take good care. We are thinking of you and praying for you all…much love and hugs. Mary xox

  2. I hear you, my friends, and I also pray for a quiet and restful day, pain relief and a some joy in your time together. I hope they have some good answers, soon.

  3. Hoping for a better day for you. Hugs to Ryleigh

  4. Thinking of u all!

  5. Good morning all! God promises grace for every day and his mercy is new every morning! “For his compassions never fail they are new every morning.”
    (Lamentations 3:22-23)

  6. Rest, rest, and rest some more. You are all filled with love and light!

  7. I cannot imagine what Ryleigh and your whole family are going through, my prayer continues to be that the Lord will bring strength peace and healing for all of you.

  8. Ray & Laura MacKenzie Avatar
    Ray & Laura MacKenzie

    AMEN…and GOD BLESS you all!!!
    Our prayers continue.

  9. thinking about you lots and my prayers are with you

  10. Thinking about you Jo, sending love and lots of hugs
    Pam Hachey

  11. I am in awe…What a trooper Ryleigh is. What amazing strength from Mom, Dad and Sister to help her through.
    Thinking of you everyday,

  12. You know I am praying, Jo. You are very busy and preoccupied with Ryleigh’s care but give me a shout if you need a walking partner, a sit-in-the-hall companion, or someone to run a few errands for you.

    standing in the gap,

  13. Brave does not even seem like an adequate word… Hang in there, lots of love and hugs to you all!!!

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