Last night Kyara was re-intubated and they put another NG tube down her nose and into her stomach. The idea was to drain everything out of her stomach so that she can't throw it up. She was not really throwing up, rather is was pouring out her mouth and nose. Anyway, they got both tubes in last night.
This morning, she was sleeping like an angel. I was shocked by how comfortable she looked and I was looking forward to her having a peaceful day. Unfortunately, this is not what happened. The NG tube got clogged by her bile, so they had to put in a new one, and she started storming AGAIN. The nurse, Sandra, was great about pushing the doctors to get Kyara more comfortable. I met with the pediatric surgeons, the PM&R (rehab) doctors, and a doctor who works on a palliative care team. Their goal is patient comfort. When the palliative care doctor saw Kyara, he really put the squeeze on the other docs to figure out how to make Kyara more comfortable. Finally, the surgeons and PM&R got together, went over all of her meds, and are discussing which ones we can wean off. This could help her colon...too many meds that are not doing her any good could actually have negative effects on the colon. The surgeons have also decided to start Kyara on Microfungen. This is a whopper of an antifungal medication. I hope this will help with her colon issues.
Right now, Kyara is on an ativan drip which is keeping her sedated and comfortable. As we wean off the drugs, we will see how she reacts. Then we will wean off the ativan. I pray this is a step in the right direction. I feel better having her in the PICU because she has one-on-one nursing, a cool room (she is having a hard time controlling her body temperature, especially when she is storming), and a private room (decreased noise level!). I am looking for the positives in this situation, and I think they are there.
I also believe Kyara is in there. During a "twilight" time (small time when she is not really awake, but not really asleep) she responds to me. She has squeezed my hand, moved her feet, even opened her eyes on really looked at me. I pray they can get Kyara medically stable so we can move on to the therapy aspect. Speaking of therapy... we have had people asking about bringing Kyara home... That is our goal. We have to have her medically stable before we can do that, though. At the point she is discharged from pediatric surgery's service, we hope to transfer her home to Scottish Rite for intensive inpatient rehab. Thank you so much for all of the love, support and prayers! We greatly appreciate them, and I know that with God's help, they will figure Kyara out!
10 comments:
Dear Genie... bless your big open heart... Kyara will get better and you will be able to take your little girl back home, but all in due time. We all know that Kyara is in there too, just itching to come out of her shell. We really hope that all the elements you mentioned make her more comfortable and move her in the right direction toward a complete recovery.
Thank you for the update. Kyara is a fighter. We pray for the time to quickly come when you can bring her home to Atlanta.....she, as well as your whole family, continue to be in our prayers.
Genie,
The HOPE word for today is CARING! Clearly that is what you and Peggy do each day! But, all of us in GA want you to kow that we are CARING for all of you and send wings of peace and love to you. She squeezed your hand cause she knows YOU are there. love you, Wink
Genie.....I continue to pray every day for you and your family. Please give Kyara kisses and tell her that I miss her. Thank you for keeping us all updated on our sweet angel!
Love to All, Misty Evans
It is a huge step forward to begin planning for the next stage of care, it will be so good to have you all back in the south. We have a great group of retired (and soon to be retired) friends of the family who are just waiting to take turns helping on the home front. You all remain in our prayers,
The Grove Family
I am blessed by your blogs every day. Your strength and positive attitude are simply awesome. May God continue to bless you with such strength and Kyara with more pathways every day! We are always praying!!
The Lopers
Happy to hear Kyara is comfortable and sleeping. I'll be praying the Drs will find the correct mix of meds and resolve these colon issues quickly. Glad to hear the nurse is keeping those Drs on their toes too. Thank you for keeping us updated. I know you have plenty to do, but it does keep us informed and helps us know where your needs are at this point. Give Kyara and yourself a hug---Bunny too, she has been a blessing throughout this.
Take care
The Henley's
We know you are right Genie. God will help them figure Kyara out!
We miss you guys so much. I can understand what you mean when you say that you are more comfortable when Kyara is in the PICU. I was more comfortable when Jensyn was there back in August, because I knew she had one on one attention and that she had the best team of doctors available at every beckon call. They will soon find what is necessay to keep Kyara comfortable, help her to get well, and prepare her for the next stage of her recovery.
It is great to hear how she is connecting with you. We know she is "in there," and we know she loves you guys so much. That precious love is her motivation to continue to improve. We are blessed that you allow us to travel this journey with you as we watch our little "bamboo" sprout new roots.
We miss you guys terribly. Please kiss Kyara for us and tell her that Mrs. Laurie, Mrs. Carlisle and all of her classmates love her very much!
Laurie and Josette
You guys are such an inspiration -we are all trying to be there for you, but your ability to cling to hope and the promise of healing is amazing and a wonderful witness to us all!! Thank you for sharing this with us. We pray for wisdom for the doctors. We pray for continued rest for Kyara for we know through rest, healing will come.
God bless you!!
The Brandons
Dear Gunars & Genie, I have been following Kayara's story as much as possible since Ann posted the link on FB. I have continously been praying for her at all my prayer groups. I have asked the members of my prayer groups to add her to their prayer list. There is something special I'd like to do for her. I will try to send you an email on FB to give you more details. I'll need some information so that I can have it made and sent to you there in Michigan. Stay tuned for the email. ~Eileen Mae
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