View Full Version : 3 giant steps back
03-25-2005, 11:58 PM
Ariel is sick with some viral scourge and we've got her on the inhaled TOBI, prednisone, and lots of nebs. However it's not doing the job and I had to wheel her vent out of the guest room. We may be in the ER before the night is through if her 02 needs keep going up.
She hasn't needed her vent in months and it is so sad because it pretty much rules out any chance of her getting decannulated this summer even IF her airway looks better (which is probably a long shot anyway). Her lungs are just not strong enough.
After almost three years of this I'm getting kinda tired, I know you all know...It just doesn't get easier.
Kara Beth's Mommy
03-26-2005, 12:09 AM
Karen--- I am sorry to hear that you are having to use the vent. I bet that feels like a big step back. Hoping that Ariel is back off the vent in no time and getting back to herself. She will be in my prayers extra.
Oh Karen, I can feel your exhaustion.Â*I'm so sorry Ariel is sick and needs the $#% vent right now. Â*Try not to look at it as a "step back", but rather the ability to keep her out of the hospital because you have the vent. Â*It's so hard to see the light at the end of the tunnel right now, but Ariel IS stronger and her lungs ARE better than they were 3 years ago. Â*I pray that this is only a temporary set-back, that Ariel gets better soon and that her mommy can get some much needed sleep soon. Â*
P.S. It's 2am and I'm up with a sick 3-year old who just puked all over me. Â*Thank God it's not Jack (yet Â*http://www.tracheostomy.com/iB_html/non-cgi/emoticons/confused.gif ).
Stefan & Jennifer
03-26-2005, 04:03 PM
I'm sorry you're having to go through this. Hopefully she'll get better quick and you won't have to go the E.R....keep us posted....lots of prayers coming your way.
03-26-2005, 09:40 PM
I'm so sorry. I hope you can keep her out of the hospital and the vent is just until she feels better!
03-27-2005, 08:23 AM
Karen, I know this is a day late. I really hope you were able to keep Ariel out of the hospital. I know it seems like a huge step back, but think of it as allowing you to stay away from the hospital (if in fact it did). I do know how you are feeling though. Jacob has had a tough winter and just when we think things are back to normal, bam! he is back on the vent 24/7. I think we are just going to keep him on this time until the weather stops changing everyday.
Lots of love and hugs coming your way!
03-27-2005, 12:50 PM
Sweet Ariel...I'm sorry your so sick and on Easter too. We will say a prayer for you, mommy and daddy too that you don't have to make the trip to the ER.
I know you are so tired Karen...1 step forward...three steps back....2 steps forward....1 step back....3 steps forward 2 steps back....when does the math equation add up to a "break for our children" and for us. Other parents add up walking at 10 months, a full set of teeth by 3, bike riding by 5 and the right of passage to kindergarten. We add up the days without vomiting and nonstop suctioning, the days without oxygen or the vent, the day we hear a "whisper" of a voice....
Kiss little Ariel for me and give yourself a big hug from us. Know you will never take Ariel for granted no matter what steps you take in what direction...and that you will always be there holding her hand all the way.
Love & Happy Easter...
Janet & Mac http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif
03-28-2005, 02:25 AM
Thank you so much my friends for your kind support. We have still managed to stay out of the hospital but it has been really brutal and not too much better today than it was on Friday.
Amanda I have thought about you and Jacob alot recently, I have thought about what a rough winter you guys had and the set backs but you GOT through it! Just knowing how strong you all are and what you have all survived helps me to survive everyday. Knowing I'm not alone!
03-28-2005, 09:30 AM
Glad to hear that Ariel has stayed out of the hospital but sorry that she's still sick. We'll keep praying for you!!
03-28-2005, 04:57 PM
I hope Ariel feels better soon, and I hope that when she is better that Mommy can take an afternoon off! Like, go out and read novels in the cafe of a bookstore, or get a massage, or take a really long nap or SOMETHING!
03-31-2005, 11:47 PM
How interesting about the TOBI study. We started Ariel on it right away when she started getting sick, we always do. I feel like it keeps that evil pseudomonas that she colonizes in her trach at bay. We had to stop it this time after only a few days because it made her cough sooo bad she would go into bronchospasm. Maybe the two days was enough!
You are all right about the vent of course. As I lay here quite cozy next to her crib listening to the gentle WHOOSH WHOOSH of her LTV950 I am also watching Making the Band on TV and able to chat online! In the PICU I would be contorted in a chair chewing off my own fingers!
04-01-2005, 05:12 AM
Karen, I am so glad you have been able to keep Ariel home during this illness. I really thought I was going crazy the week Jacob was in the hospital. I am at his bedside 95% of the time and that really can take a toll. On the other hand, I am afraid that if I turn my back for 2 seconds something terrible will happen. About 1 week after we returned home, Jacob developed an awful sinus/ear infection and, thankfully, we were able to keep him home - on the vent 24/7.
Unfortunately, I am waiting on a return call from the hospital for a surgery date and time for Jacob's adenoidectomy and sinus surgery. Ughhh!
Thinking of you....
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