Kyara was on IV pain and sedation medications for almost 1 month until this past Monday. She was doing surprisingly well on these medications. Even while she had the breathing tube, she was awake and playing Candyland or Trouble with us. She was playful and smiling at times. Of course, she was sleeping alot, too, but when she was awake she was "with it." Since the doctors changed her to medications that went through her feeding tube, she has be slowly declining. She is not as responsive. She sits and stares at the walls. At PT today she stared in a wall mirror for almost the entire hour. There is no smiling. I was very concerned about the change in her. In fact, some of the nurses from the PICU came to see her and were also concerned about her. Mr. Dan (the Physical Therapist) reported his concerns to the nurses and also paged the doctors. I have since discussed her condition with our new doctor (the fellow that is on the floor, our other doctors work with the ICU kids). They are going to with-hold her next medication dose to see if she is able to get out of the fog she is in. They want to make sure it is the medication that is causing this effect in her. The methadone she is on has a long 1/2 life, so it will be slow going out of her body. If she shows signs of withdrawal, they will give her "rescue drugs". We will see how it goes.
In more positive news, they are adjusting her tube feedings to allow her time off. Right now Kyara is on a continuous feed, that means she is connected to the feeding pump all the time. Tonight, they are going to switch her feeding rate so that she has 16 ml more food an hour going into her body. This will allow her 4 hours of free time tomorrow. Yipee!!
In my last post I wrote about not really wanting to leave the ICU. I know I sounded very selfish. I felt very selfish and self-absorbed after writing it. Here I am complaining about having to share a room when 2 families at the Ronald McDonald House lost their babies this week. Those parents would have loved for their child to have been well enough to move to a double room! I am embarrassed and ashamed for my previous thoughts. I am also trying to be as honest as I can about how I feel and what is happening up here. I am using this as a journal, as well as a communication device, so please understand. I am counting our many blessing and I thank God that Kyara is healing and recovering from the surgery, leaks, and infections. I am also so thankful for all of the support you have provided our family.
8 comments:
Wow Genie... the news of Kyara's daze is a bit disheartening.... but let's hope it's just the effects of the medication and that soon enough she'll snap out of it. Whether in the ICu or not, she's in one of the best hospitals in the nation... she's in good hands and let's hope and pray for her to start responding quickly. As for the selfishness.... PLEASE girl.... it's the most honest and human feeling ever...everyone feels the same way but very few people are brave and strong enough to say it.... so don't say that you're being selfish or self absorbed.... you have been through some seriously rough weeks and you're entitled to feel however you want. Good for you for saying how you feel... it's an outlet... you need it.
You've got lots of people here in Miami praying for you and Kyara... she WILL snap out of it very soon.
Lots of love - Tina
Let's hope this is just a short temporary effect because of the medications.
Let's hope tomorrow I can hear again good news on her new tricks and make me smile.
Love
Dont you dare feel embarassed by your thoughts. You are human and want the best for your family. Continue to use this venue to vent and complain all you want. We read, pray, and send thoughts of happines to you all. Keep working hard and remember all there is to be thankful for. You all will survive and be much stronger!
Keep maintaining!
Love and prayers!
The Vaughn's
Genie,
I am so sorry to hear about this latest bump. I can't imagine the frustration you must feel at times. You should not feel bad or ashamed of how you feel. It has been a very trying month for you and your family. I think if anything you should be proud of how you have handled everything. Kyara is a fighter and will beat this, she just needs some time. The Dr. will figure this out, just like all the other trials she has been through and once again she will start showing progress. I wish I could do something to help you out but please know that we are thinking of you all everyday and praying constantly for a complete and successful recovery
and when the time is right, I know that GOD will deliver. Keep the faith and hang in there. Brighter days are just ahead.
Take care and tell Kyara we love and miss her.
The Henley's
Stay stong and don't be ashamed of your thoughts/feelings! You and your child are enduring a great deal right now and no one but you and her know what this ordeal is like. Your thoughts, feelings and emotions are normal and I appreciate your honesty! I continue to pray for your entire family!
I have to agree with several other posts...please do not be embarrassed by your feelings. I would be more worried if you did not feel that way atleast some of the time. Your whole family is doing wonderful through this time and is such a blessing to so many people. We will continue to pray for you and yours. Lots of Love, The Lanes
Genie
Hope Kyara is having a good day; please give her hugs and kisses.
Love Nurse Misty
Genie,
I am so thankful that you do share your feelings through this. That is what helps those of us that can not be there to feel connected. You have to feel what you feel in the moment you feel it. I appreciate that you share that with us. That helps us to pray more specifically. I can emphasize with the guilty feeling when you are around others that are traveling rough roads. I felt like a nut for SOBBING when my children were having tubes put in their ears at Egleston when I saw children there with far more struggles. I just want you to know that God understands our frustrations, hears, and loves us where we are. He does not compare situations and think of you as selfish at all. I am so sure He is just proud of selecting such fantastic parents for Kyara because you guys care about everything she faces. Your concerns about Kyara not being able to rest as a result of sharing a room are only evidence of your love for your baby. I'm sure I speak for all that love you. We WANT to know how you feel. Please do not hold that in. :-)
I am praying that Kyara is more alert and that God carries her through any withdrawals she may face. I imagine seeing her like that is horrifying. She is still our wonderful and bright Kyara, and soon I'm sure her vibrant personality is going to just BURST through.
Have a great weekend with your whole precious family, and know we all love you guys and are on our knees with you before the God that has brought Kyara SO FAR!!! She is only going to get better!
Josette
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