Kyara is still storming. Her belly is also still very distended. I don't know if it is the chicken or the egg. Does she storm because her belly hurt, or is her belly getting distended because she is storming? Does her colon not work because of neurologic issues? I am getting very frustrated. In the meantime, the rehab doctor in Atlanta has changed almost all of Kyara's meds. I am not so sure about any of this. She is very upset, with a heart rate in the 180-190s most of the time. She is breathing about 80 times a minute, most of the day. How long can she keep this up??
I think I had unrealistic expectations coming home. Intellectually, I knew this was not a miracle cure. It wasn't like we were going to cross the border and suddenly she would be better, but at the same time, I am disappointed that she is cured. Crazy, I know...
I am trying to be as openminded about all the new medications and the process the rehab doctor is going through, but I must say I am having a hard time. When the doctor told me that he was going to give Kyara valium instead of the zanaflex I strongly told him that valium did not work well for Kyara in Michigan and that the zanaflex seemed to be the only med that really calmed her (in his defense, the zanaflex was not working now either). He told me to trust him. And if it doesn't work then I could tell him "I told you so" in the morning. Guess what. It didn't not work. In fact it did not phase her. Might as well given her a sugar pill. The doctor on call even added a second dose, and that didn't help either. "I told you so."
So, at this point, Dr. Meyers, our GI doctor believes the colon is irritating her and causing the storming to be worse. The Rehab doctor thinks everything in neurological and wants to treat that, and the ICU doctor is guess neuro, but not really sure. I am inclined to go with Dr. Meyers. I think that there are 2 issues, the gut and the brain. You have to fix the gut before we can work on the brain. Otherwise she is just going to storm and not get anywhere.
I am very frustrated, angry, sad, discouraged, etc right now. This homecoming (besides being with my family more) has been not what I had hoped for. I miss the nurses and some of the fellows from Michigan. They worked hard for Kyara.
What does God have in mind here? I am trying to trust, it is getting very difficult. He is good and I am thankful for so many things in my life, I wonder when Kyara's time will come, though.
12 comments:
Genie,
You are so good at getting your feelings on paper and helping us to understand what Kyara is going through. I know you are so ready for the healing to be more obvious. I pray the storming will subside and then cease so the rehab can begin. Continuing to pray...
Clara
Remember what you have said so many times to us...this is a journey. This will take time. Fiesty Kyara is just miffed right now from all the changes. She will calm down and things will settle. The difference now is you are HOME with friends around who can now support you locally. Please reach out to us. I know I speak for many when I say we have felt helpless all these months....What can we do to make any of this easier for you?? Food? Laundry? A shoulder? An Ear? Please use us. You have been so strong - We are all sending out our love and prayers daily but let us know what else we can do. We love you Genie and Kyara and are glad you are "home"!
Marcia Fields
Genie, this has to be so difficult for you... it's also difficult for Kyara. I'm sure the trip was stressful for her and she's probably still trying to adjust. I hear you about the expectations and disappointment... but you are all together now as a family and now as a team you can take every challenge head on.... today is a bad day... tomorrow might be better.... hang in there and try to stay positive - as hard as it is for you... we love you.
tina, Carlos & Nico
Praying tonight for your peace and Kyara's ... rest in the blessing of family and friends at home ... take some time (difficult) to hold hands ... and know that God has you in His. Luke 1:37 ... Bruce, Good Hope Baptist Church.
Genie,
I praying Kyara rests well tonight and is able to relax. I'm praying that God reassures you of his peace and love. He is holding Kyara and you. Let him comfort you! If you haven't already read the book Red Sea Rules, you must! It is a short book and a quick read. I'll send my copy by Missy Allen if you would like. Please keep us posted. Many prayers are with you! Hollie Sisk
Keep your head up Genie!This will get better. This is NOT a step in the wrong direction.This is were Kyara&You need to be.We all miss her up here,¬hing is the same since Kyara left but Kyara needs her family&they need you guys!I wish there was something I could do.It breaks my heart to hear of her struggling yet AGAIN. I'll check on her tomarrow. Tell everyone I said HI,hug Skylar for me:) God Bless. Heather(MI,PICU)
Hang in there! You have people praying constantly and good has to come out of this at some point. I'd like to reiterate Marcia's comment that we'd like for you to reach out to us so we can make your load a bit lighter. Anything we can do for you we will! Please, just let us know...
Praying everyday,
Kari Good
Genie,
My heart breaks for you as you are struggling with this. I cannot even imagine the feelings and emotions you are experiencing, but PLEASE know that we are all here to hold you up. God brought you guys back to Atlanta for a reason. There is a strong support group around you here at home. Please take advantage of that support as you feel ready. In the meantime, know that we are all praying constantly for healing, comfort, rest, and peace for you all.
Amy Brandon
Genie,
Maybe Kyara just needs time to recover from the flight home. I know it is not the time line you or any or us want for her healing and recovery process but God does have a plan. I think the return home was a very positive move for everyone, Kyara is in a wonderful hospital with excellent doctors. They will figure it out and they will soon realize you know more about Kyara and how she reacts to certain medication than they do so a loud, "I told you so" may really make you feel much better! We are praying faithfully and already feel that part of our prayers are answered....you and Kyara are back here. Love to all,
Liz Grove and family
Oh honey! I am praying hard for your whole family as well as the doctors working with Kyara. With his help we can witness a miracle, either way you are in our thoughts and we know you are doing much better than most of us would in a similar situation! Keep strong and we will try to support you in any way possible!
Genie-
I am praying for sweet Kyara and you and the rest of the family. It breaks my heart that this homecoming has not been what you hoped. It also breaks my heart that you are being disappointed. God has a reason and an answer. My prayer is that he shows us all his answer and soon! Kyara is a sweet and precious little girl and I will help in any way that I can to get to the bottom of this....you do have people in your corner! Stay strong and trust in your feelings, after all your are her mother. Do not second guess yourself because you have experience with her and her storms, have faith. It is so humbling to have seen Kyara's journey from the beginning and know what a fighter she is and continues to be. I am thinking of all of you and will see you tomorrow!!!
Love, Stephanie Layfield, RN
Please know that we are all praying for you and the WHOLE family. I know this feels like a huge setback, but as many others have commented, this could be a reaction to the traveling and getting settled into a new place. I think of how mine react after traveling and how ill they get for a few days after we get home. PLEASE let me know if we can do anything to help!!!!
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