Today has been a very tough day. Well, I guess I should back up, I didn't post last night, so let me catch up...
Yesterday Kyara had 3 therapy sessions. She had PT/OT combo in the morning, speech and a cognitive doctor therapy right after PT/OT, and OT/Speech therapy in the afternoon. We figured with all the new therapies she would sleep well. Boy were we wrong. She only slept about 3 hours last night. Also, her feeding tube got pulled during PT/OT in the morning so we had to wait hours for an x-ray to confirm it was still in the stomach before restarting her feeds (she is off feeds while at therapy). It ended up being in a good spot so feeds continued. If that wasn't enough, one of the nurses gave her a medication in the middle of the night that clogged the feeding tube. So again this morning, no feeds. But, more importantly, no meds. The medications Kyara needs for decreasing her "neurological storms" (increased breathing, sweating, high blood pressure, high heart rate, increased muscle tone) as well as her sleeping medications, and medications to help her "awaken" more, all go through her NG tube. And now it is clogged. So therapy was a disaster...she was "storming" so hard they couldn't calm her to do much of anything. Finally at 2:00 we went to x-ray to place a new feeding tube, but it took 2 HOURS and 6 DOCTORS to get it in!!! Then we came back upstairs to her room and they had an intern come in to bridle the NG tube in place. What he ended up doing is worthless, so the tube is still not secure.
Gunars left this morning and I am so sad without him here. I know it is for the best, but I wish he was here so we could hold each other and reassure each other. He has arrived home safely, thank God, so we have that as a positive for the day. The doctors were finally able to get the feeding tube in the right spot, so that is another positive. I am searching hard today to find the good stuff, tomorrow will HAVE to be better!! I am trying to be positive, but at times my mind runs a little wild. Especially after today, I feel angry about the position Kyara is in. She was HEALTHY and HAPPY. I am trying to wipe those feelings out of my mind and my heart and writing them down makes me feel some better. With God's healing hands, I pray that Kyara will continue to recover and return to a healthy, happy girl.
13 comments:
Genie,
We are so sorry that the day had so many "tornados" in it. Everyone is continuing to lift Kyara up in prayer and we will say a special prayer for peace to come over the entire situation. We ask for God to place the right people in Kyara's care so that her recovery will go smoothly with no complications. Remember, no matter what storm may come, God has a plan and He will work it all out for the good. Be steadfast and know that we will never let up on our prayers for Kyara and the entire family. Love, Spokane
Oh, sweetie, there will be tough days like these, only to let you appreciate the "good" days and the little improvements that Kyara is sure to achieve little by little... have faith, be strong, not every day will be a "bad" day, and this too shall pass. Good night and God bless, Genie. We hope Kyara gets some rest tonight.
Genie,
We are sorry to hear that Kyara had such a bad day with all of the therapies. We know you were hoping to have had better results but there again she had more bumps to get over. Kyara is very strong especially with you and Gunars behind her that she will get over these bumps too. God has his plan and we all are still waiting to see what it is and we will all hold positive until he reveals it and you need to continue to be just a positive to help you through all of this. Just know that Kyara has touched so many people because she is so special and that she will come through this. Our prayers are for all of you to be able to handle everything that is thrown at you like what happened yesterday. Keep holding strong and know we are all here for you and Kyara. Give her a big hug and kiss from Mrs. Carlisle and me. We love you all and wish we could do more for you from here but our prayers are for God's healing hands to surround you all especially Kyara at all times.
Love to you all,
Josette and Laurie
I know how hard those NG tubes are, Paul had one one for the first 5months of his life. We had to insert it ourselves at home and with a baby they do pull it out often and it is horrible trying to get it back in because you go in blind, unfortunately the kids are not transparent to assure you it is going in the right place but just hang in there. I can feel your pain, I know how horrible it is to be with a sick child in the hospital and sometimes we just want to slap the professionals because we don't feel they are acting as such. They are professionals they shouldn't make mistakes, at least that is how I always felt. Rest assure that God is with you and is protecting Kyara. Sometimes we don't see the hand of God and feel he is not with us, but those are the times when he is with us the most, so hang strong and keep the faith. Lots of love. God bless. Ivette
I am so sorry to hear that Kyara had a rough start to her new therapies...remember she had a rough start at school too and things will get better. We will be praying specifically for this for her. I know it has to be hard without Gunnars there, but you have made the right (and very hard) decision. Keep trying to focus on the positives and God WILL get you through this.
The Lopers
Genie,
We are so sorry that things are not going very well right now. Remember that when we can't see 2 sets of footprints in the sand, it is because God is carrying us. Right now, He is carrying you all and hopefully the storms will be over soon.
We continue to think of y'all and say extra prayers!
Love and hugs to y'all!
Lorri, Paul, Matthew, and Megan
Genie, I can imagine that you felt everything tumbling down yesterday.. but keep the faith... today HAS to be better... like you said. They say that God will never give us more than we can handle.. and you my friend, are handling this like a TRUE CHAMPION.
God Bless.
Love, Tina, Carlos & Nico
I cannot imagine the frustration you guys feel, but hold strong and remember God will guide you through all of these trials. We think Kyara is amazing now, I cannot imagine what God has in store for her in the future - what an exciting thought!!
You are in our thoughts and prayers always!!
The Brandons
There are always opportunities for miracles and we are certainly praying for Kyara's miracle to arrive soon. You have to trust in yourself and in God to see you through this trial. You are stronger than you know and we are all supporting you in our prayers!
I just want you to know that I am praying for Kyara and your family. I work at CCDHC and although I have never met your family I feel like I know you. Kim always shares stories of Kyara and I was devastated to hear the latest news. Please continue to keep your faith in God and know that this will pass. There is a reason for everything and I have faith that Kyara is a strong girl and God will get her through this. Be blessed and know that even people you may have never met are pulling for you!
Genie,
I hope today has been a better day and that each day gets better and better. I know it is difficult with Ginars being away. We would like to have him over for dinner during the week or at least be able to provide a meal for him. I stopped by the house today with Valentine's for Kyara and Skylar. I didn't want to put them on the door, so I shoved them in the mail box. I hope you are ok with that. I left a message on your home phone in hopes that Gunars would get it. I am not sure if it is ok to post this, but here is my e-mail teamdrew@bellsouth.net. We hope we will be able to serve you and bless you. You sharing Kyara's prograss and your thoughts are a blessing to us. We are faithful in prayer along with you!
Love,
Michele Drew
You do not know me but I received a prayer request for your daughter. I am so sorry you all are going through this. I know how hard it hurts to see your child hurt. I will be praying for all of you.
I hope today has been better for everyone. You and Kyara are strong. You will once again overcome these obstacles and amaze us all. Thanks for sharing the good and the bad. It helps us to know how to pray. Please know we are always thinking of you all and continue to lift you all up in prayer.
The Henley's
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