I am starting to hate my own posts because they are so depressing and I have a hard time believing this is all happening to my Tiara.
Easter Sunday her oxygen levels continued to go up and down but mostly stayed low, even though she was in fairly good spirits. She was laughing so hard when Lou came to visit she seemed to be improving. I was hopeful things were turning around even though I knew in the pit of my stomach I was fooling myself. After Lou left the doctor came up to me and said we couldn’t wait any longer and he felt we needed to intubate her and put her on a ventilator sooner rather than later.
He explained she had been on the antibiotics for 48 hours but her immune system hadn’t kicked in enough to fight the pneumonia and the flu so he wanted to use the ventilator to breath for her so her lungs could get a break and try to heal. He felt as if it was dangerous to wait any longer given how little she was oxygenating herself. So at 5:45 p.m. On Easter Sunday they sedated her, intubated her and hooked her up to the ventilator. This is the 5th time in 14 years she has been intubated and put on a ventilator. All the other times were because of status seizures but this was the first time it has happened as a result of respiratory illness.
What I didn’t realize was that she would continue to be sedated while on the ventilator for her own safety. The tube is very irritating and she may try to pull it out if she isn’t sedated so all of the sudden the hospital room has become silent. No more Hannah Montana around the clock, no more bossing me around to read to her, to sing to her or to pet her arms. No more iPad flying through the air, no more fingernail marks on my arms, no more pulled hair, just deafening silence.
This whole thing sucks and I am having a hard time typing this because I am crying so hard. I just want her to get better and come home, is that so much to ask for?
xoxo tiffani
Oh my sad heart. To see a child…any child, have to fight so hard to get healthy. Then to have that child be yours…. I cannot imagine. You are an amazingly strong Mama Tiff!!!
The Goff family is all in my prayers and thoughts everyday!
“Come On, Tiara! You can do it!”
Oh Tiffani. I pray that today brings rest and healing for Tiara’s lungs. Praying for your strength.
Oh Tiffani, I’m so sorry that this is happening! I will constantly be keeping Tiara in my prayers. I hate ventilators too but know that they often do the trick for respiratory problems. My dad was on one just 2 weeks ago. Maybe you can actually get in a little bit of rest right now so that you’ll be ready for when she wakes up. Big hugs to you! Stacie xo
I’m so sorry, Tiffani. Just looking at her photo makes me cry. I’m hoping and praying that as I write this comment Tiara’s condition is beginning to improve. I can only imagine how you are feeling. Please know that we care and are praying. Hugs and Kisses, Sylvia
I wish there was something I could say to make you or TT feel even a little bit better, but I know there is not. Just know we are thinking and praying for your family.
Please know that I am praying for you and your family.
I pray God gives you the strength you need and that He gives a miracle to your daughter.
Oh, my goodness, I hope she gets better really soon.
Kate x
Kate at Home
wish i was there and could give you a great big old hug. It is tough watching our kids go through things and losing our aspect of control. Just remember she is getting what she needs now and her body is healing. I am praying and we will be hearing you tell us about more funny and real life stories very soon <3
Hang in there! Your family is in our prayers daily!
Good Morning Tiff,
No mother should have to go through what you are dealing with. I am so so sorry.
Try to remember that our thoughts are so so powerful. So, while you are having this “silence”- no matter how hard it is- pray and ask God to show you the blessings. Tiara is resting peacefully and truly getting well. That’s what this “quiet time” is all about. Her body is getting the much needed break it deserves. I hope you can get some good sleep once you have adjusted to the quiet, because your body needs it too.
Because as soon as the sedation is over, you know whats going to happen!! That iPad will start flying and the constant motion and noise will resume! Can’t you see it now? Just rest your weary eyes, you will need your strength when Tiara is back in action.
My love, hugs, and prayers to you…
xoxo
Marcy
You are THE MoST INCREDIBLE MOTHER. I read every blog and pray for Tiara.
Tiffani, although we’ve not been through anything like this, I do understand your pain. Silence is sad. I’m very sorry for your tears and am hoping this forced rest will give Tiara’s body a chance to heal. Hugs for you both!
The pain of your child being seriously ill is too much for words.
Hoping this allows Tiara’s lungs to get the break they need and that the rest and antibiotics will kick the infection out so you can both return home quickly.
Oh Tiffani, I just saw this post and am so sorry. Really I am praying so hard for Tiara to get better and no words can express how sorry I am they she is going through this right now. My 3 1/2 year old just recovered from RSV and almost needed to be hospitalized because of oxygen levels. We had to nebulize her and I was a wreck. So, in some small way I can relate from one mother to another.
Oh Tiffani, I wish I could just give you a big hug. Thinking of you all!
So very sorry, Tiffani. Like many of your friends who love and care for you and Tiara, I sure wish I could do something to ease your pain. I will pray for Tiara’s speedy recovery, but we both know that Tiara does things at her own pace. Amelia follows Tiara on Facebook and always asks, “what’s wrong with Tiara?”
We all look forward to reading some good news about turning to corner soon!
Lots of Love and Prayers,
April + Al + Abby + Amelia
Thanks for letting us know what is happening. Stay strong and make sure you are taking care of yourself as well. You are the rock and center of your family. I hope Tiara comes off the ventilater soon.
Praying for you and Tiara.
So sorry Tiffani, heck no, it’s not too much to ask for. I am praying for Tiara and you and your family.
Dear Tiffany,I have randomly come upon your post and have finally quit crying so I could type. Hearing what you and your dear Tiara are going though, breaks my heart. My Justin is 20 and we have struggled though these battles too and have another upcoming surgery. You expressed so well about the silence, and the lack of our children’s sometimes challenging behaviors which have become sooo normal and loved. I will pray for Tiara’s healing and strength & peace for you. May she be up soon so you can pet her and she may scratch you (also a favorite of my Justin)
Lovingly
Justin’ Mom, Soni