Today was not that great of a day. I know three will be ups and downs, but some ups would be really helpful right now. We need the ups to help us weather through the downs!
Kyara has been running a high fever today, had diarrhea for the past 2 days, and has started de-sating (had low oxygen levels). Last night the respiratory therapist put her on a nasal cannula to provide some supplemental oxygen. That seemed to help. They also began breathing treatments last night to help her lungs (they are coarse sounding due to "stuff" in them). The breathing treatments are really loosening junk up, so that is why they think Kyara is having a harder time with her oxygen saturation levels right now. Today the respiratory therapist brought in a vest that "shakes her up" a bit to help loosen the junk even more. After the first time they put on the vest, the respiratory therapist had to suction her for 20 minutes to clean out all the gook. It was nasty green, so maybe that is the cause for the high fevers. Better out than in!
Kyara is back to sleeping only from 7:00-10:30 pm. At least she is getting some sleep; but the poor girl needs so much more. I really think they cannot determine a baseline for her until she sleeps. I am getting very frustrated and mad that they are not getting this sleeping under control. I know I keep harping on it each post, but sleep is VERY important in a brain injury. We have been told that the majority of recovery will happen the first 3 months, and we are almost at the one month mark, and the doctors STILL haven't figured out a good combination.
I still have high hopes for Kyara. At times, she looks like she is toeing the line, trying so hard to talk to us and just not able to get it out. In fact, in speech today, both Maria and Dr. Laurie (neuro-psych) felt like she was "right there" and just can't get it out. Once again, I think this will come with SLEEP!!
I am also trying to be realistic in my expectations. I know that recovery will take a LONG time. I am mentally preparing myself for the wheelchair, j-tube, diapers (again!), and having to do all of her care. I pray that this will not be forever. I pray that she will respond to me and give me hope for the future. I am also devasted by her injury, she had/has so much potential. I am having a difficult time believing what has happened is real. I keep thinking I am going to wake up from this nightmare and everything will be fine. But that is wishful thinking. Kyara's recovery will not be overnight. It will lots of baby steps that will grow into bigger and bigger steps. I pray that one day, I will look back and say, "Wow! Look how far you have come!" I also pray that Gunars and I can be strong enough to endure whatever the future holds. We have to cling to each other for support and when one of us is down, the other has to be up. He was my rock and my positive vibe when I needed him, and I pray I can be that for him when he needs it, too.
13 comments:
Genie,
I really feel for your right now. What you are going through is soo tough. You need to take a day off and rest, but you won't, because you want to be there for Kyara. Try to be strong for a little while longer - when you get back here, you will have all kinds of people willing to help you. You and Gunars are both very strong and committed people. You are each others rocks! Baby steps, baby steps.
Genie,
I am amazed by your strength. Keep the faith and be sure to rest. You have so many people praying for you guys and loving you from afar. Continue to stay strong and look to God. I am praying for sleep!
In Him,
Adrienne Maples
From my career in coaching, I can promise you things are always easier win you are winning. Practices are fun, there are no complaints, everyone is getting along just great. But what a difference losing makes. You all have been through some very deep valleys. The good news is that GOD promises to carry you through the toughest times in your life and he will answer every prayer with your faith. You must believe! I know, easy for me to say, but your courage and strength have been unprecedented. No more "potential Kyara had" talk. She still does have and will reach that potential.
Don't give up and continue to see the positive steps forward. We are still praying for Kyara AND your family. Hang in there! Happy days to come!
When we are at the end of our ropes, Christ is there to lead us. Pray, pray, pray and He will provide you the strength and comfort to make it through this trial. And know that when you can't pray, when you feel too down or angry to do so, we are all there praying on your behalf!
We are right there with you on the rollercoaster. My heart breaks every morning to read that she still isn't sleeping. I have to believe that in due time she will -but like you I wonder when?? I truly believe brighter days are coming and Kyara is going to absolutely amaze us all.
You guys are some of the strongest people I have ever encountered. Your witness to others has been amazing through this entire ordeal. Each day I am reminded to never take even a minute for granted with my loved ones. So thank you for touching people's lives in the way you have!
The Brandons
Genie,
First of all, you are amazing! Now I know you don't feel amazing, but you are. To walk the road you are walking requires unbelievable faith in God! Remember that God does his greatest work when we are weak. Tell Peggy I am sending special prayers her way too-talk about amazing!!! Bill and I are continuing to pray for SLEEP for all of you and for peace. We love you all.
Don't lose hope or faith Genie and Gunars... You guys have been through so much already.. and your love and determination will keep you both strong to see this through. I don't blame you for being frustrated... how hard can it be to help a little girl sleep!?!? Geez! But have faith that they are doing the best they can...I wish there was more we could say to make you feel a bit better... but all I can I say is that we are pulling for you... praying hard... and hoping for a GOOD day... a day with sleep and some progress in therapy. Lots of love,
Tina, Carlos & Nico
Determination, patience and courage are the only things needed to improve any situation. You have shown you have all three. It is normal to feel frustration, anger and doubt. Now let those of us who have been watching and praying provide the support you need. We KNOW you can do it. If you ever doubt it, just look at all these posts. There are many people who love you and have faith in you. We continue to pray for Kyara's health and your strength.
Dear Genie and Gunars,
As human beings, we are all powerless in our own strength. I encourage you to draw from the only source that can give you everything you need, Jesus. Sounds easy, anyone who has tried to carry the weight of the world on his/her shoulders knows that letting go is very difficult. Kyara belongs to Him, He created her and loves her beyond what we could even imagine. Trust that He will carry her through this time. We do not know what God's will is, but we do know He knows what is best. We pray for strength, peace, and the ability to truly cling to Jesus, especially when we need someone to carry us through.
We love each of you and walk with you through this time, lifting you up and knowing He has this under control. Believing in what we do not see, trusting that God is faithful in all things, those seen and unseen. We love you, Spokane
You don't know me, but I was in your curriculum class this past summer. I have been following your blog since then and just wanted to let you know that you and your family have been in my prayers and continue to be each day.
Rebecca Wheeler
Hang in there! You are doing better than anyone could expect and you need to keep sticking up for Kyara. Albuterol makes most kids hyper so go with your intuition and insist on getting the help you need. Keep your chin up we are all cheering you on!
Keep believing miracles will happen! We are praying for you all that you get the much NEEDED sleep!
I pray for your family everyday especially your little girl. I live in Fulton, MS and keep up with you everyday. Keep your faith and God is going to show you the way.
God bless your whole family!
I have been following your blog and I cannot imagine the stress and agony that you are going though. I for one, disagree with most of the messages sent to you. I believe in God and prayer. But what I think you should feel right now is anger. Anger that your little girl was put in this situation by a mistake made by her by her doctor. Everyone is saying "have faith", and I believe in that. But I also believe that as a human you should express your true feelings and let all the anger out. Then you can start healing from it, and so can Kyara.
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