Sunday, May 2, 2010

Super Sonny Sunday

It's 10:22AM, and there's lots going on in here today.

Chrissie is currently being switched from the oscillator (ventilator that's been keeping her alive) to an "intermediate" ventilator, which uses a different type of motion and air flow.  Chrissie's lungs are far from being able to function independent of outside ventilation support, but they are thinking she may be able to handle this other type of ventilator.  The oscillator blows very rapid, small puffs of oxygen/air into Chrissies' lungs, faster than the ticking of seconds on a clock.  It's not at all like our normal breathing pattern, but it keeps the lungs inflated continuously, which keeps them from collapsing between puffs.  They want to see if Chrissie's lungs can tolerate this intermediate ventilator as the goal is to continue weaning away from outside ventilator support until Chrissie's lungs are healed and strong enough to sustain her on their own.  Please pray that Chrissie's lungs will love this new ventilator, which should also feel a little less obtrusive to Chrissie's body as she is more and more wakeful and agitated.  (Chrissie's entire body would shake and jiggle rapidly with the oscillator (think Jello Jigglers resting on top of a clothes dryer drying a large load of very wet towels...lots of rapid movement/shaking/bouncing), so hopefully this new ventilator will feel more comfortable to her sweet body.)  Oh, and I should address one of the reader comments about how Chrissie is probably in pain/agitated when she wakes due to having the breathing tube down her throat.  That is exactly right, and I should have been better about explaining that to you all.  The breathing tube goes down her throat and into her lungs (called "intubated"), which makes one feel like they're choking.  (Think of that feeling you get when you swallow a large pill and it gets "stuck"...only this "pill" goes from Chrissie's lips all the way down to her lungs.)  What a horrible feeling.  I remember when my mom had her open-heart surgery and woke while intubated; she said it felt like she was drowning and choking.  Chrissie's been intubated for 14 days now.  Imagine feeling like you're been choking and drowning for FOURTEEN days.  Horrible.  (She was in a drug-induced coma for 6 of those days, but still!)

Which brings me to my next issue:  pain meds.  Over the past few days, I've seen Chrissie in a lot more pain.  Lots more crying.  I feel like I'm constantly asking them to give her some drug to help relieve her pain and agitatoin, but Chrissie metabolizes through it SO quickly.  Sometimes the extra dosages (which they inject into her IV) wear off within 30 minutes of being given.  And, even when the extra dosages are given, Chrissie still has lots of movement and agitation.  There are 3 different "extra" injections they can give, 2 are for agitation (Adavan and Chloryll (have no idea of the spelling)), and they're using Fentynel (sp?) for pain.  Chrissie has a constant drip of Fentynel, but she can get up to .05cc's extra injected into her IV, which lasts about 30 minutes.  Over the past few days, I've been asking if Chrissie could have built up a tolerance to the Fentynel since I feel like she's in a lot more pain than she's ever been.  Finally today, the pediatric doctor agreed to switch Chrissie to morphine, so pray that the morphine will help Chrissie with her pain levels.  They'll have to find the right dosage, and of course they'll start out with a low dosage to see what minimal dosages they can give, so pray that we'll be able to find that perfect dosage that relieves Chrissie's pain without over-medicating her.  (Honestly, at this point, I'm all for over-medicating our princess who is dealing with pain and agitation that no child should ever have to go through, but I don't think the doctors will go for my over-medicating advocacy!!!) 

Chrissie had a fever of 101F in the night again, which came down with Tylenol.  The pediatric doctor thinks it's due to internal inflammation.  Chrissie still has MRSA (staph), but the doctor doesn't think that's the source of her fever.  They're running more cultures, but so far, the only thing that's come back growing anything is the MRSA, which we already knew she had and supposedly is not the source of her fever.  Please pray for no fever and no infection!

I believe the biggest prayer needs are still for Chrissie's lungs to heal and function properly and for NO infection.  Still two huge hurdles that will take quite a while to leap, but Jehovah Rapha is mighty to save and His healing hand is on Chrissie.  He adores His precious princess, and she couldn't be in better hands.

I'm going to stick around the hospital today since so many changes are happening, and I want to be here to advocate for my baby girl who has no voice or way of communicating, other than showing me with the movement of her eyebrows and tears.  My mom may come up here later this afternoon if all is going well with Chrissie so that I can go hang out with our other kiddos.  Daddy is with them now at the campground, and they're having a blast, enjoying all of the amenities without lots of house and ranch chores.  Praise the Lord for this time of fun and family fellowship on our Super Sonny Sunday.  The Son's face is shining brighty on this day of rest, and we are so grateful for our extended faith family...all of you prayer warriors who continue to support us and lift us up to our Abba Father. 

Thank you!


Jo's Corner said...

Hi Lorraine and Family ~ I feel so sad for Chrissie. I have been on a respirator/ventilator/intubated many, many times and it IS awful to feel that thing in your throat. The most difficult thing for me was when they had to suction my lungs. If you can, try to be right by her side when they are suctioning her. As a former Peds nurse, I have to say that the pain issue is HUGE when it comes to children. They receive much less pain meds than adults would get. So you are right as far as bringing on the "Mama Bear" theory. You are the only person, You & Daddy, who can and will advocate for Chrissie. At the expense of being seen as an overbearing parent, well TOO BAD!! (That sounds kind of ugly, but it's the truth!) Also, in regards to the fever, ask the docs about the possibility of a Fungal Infection/Yeast infection in the blood. She has been on lots of antibiotics and it is not uncommon. I actually had that back in Nov. and Dec. and came close to death before it was treated at Mayo Clinic. They may be treating her already,but it's good to ask.
It sounds like the other kids had a wonderful time this weekend! I'm so happy that folks stepped up to help out your family.
Please, know that I continue to Pray many times throughout my day. I want to ask you if it IS okay to do another blog post about Chrissie? I did two and then felt badly that I had not asked your permission in using your photos. I really didn't think about it until a few days later. Could you let me know?
Sending Lots of Love to Chrissie and your Family! Jo

JTGsMOM said...

Are they not worried about the MRSA?

Jodi said...

Thinking about Chrissie and you all!

Just me said...

What about PCA (I think this is patient controlled analgesia or in this case parent controlled analgesia?) It gives you a button that you can push to give an extra little dose when you feel it is time, but blogs out ODs. Have they talked about that at all?

Kat said...

We are praying her lungs are completely healed, her pain subsides, and there is no need for any medication...because she so dang healthy!!! Praying so much more as well....May God's Hand rest on Chrissie (okay, it already so obviously is).

Stephanie said...

Heart kids seem to metabolize those pain meds VERY quickly. :) They also DO build up not only a tolerance to the Fentanyl and Ativan, but they become addicted fairly quickly. I am not sure why they don't have her on Versed instead of Ativan other than I think the versed can cause blood pressure to drop. Morphine will do that as well. If she seems to have trouble with the Morphine, you might ask about Ketamine. That is what we have to use with our son too. They can use smaller doses with the same effect.
One thing to watch for is that both the morphine and ketamine will make them hallucinate. Morphine visions can be a little scary.

We are still keeping all of you in our prayers!!! :) So glad you got to get out and have a good day with the other kids. :)

Stephanie and Christopher

Cassidy 16 said...

It amazes me that you mentioned "Jehovah Rapha". That is one of the songs we sing sometimes in youth worship. I never fully understood the meaning of this saying and i want to thank you for helping me understand. I will definately be paying more attention to the words when i worship and sing to that song. Thank you. I will continue to pray for her lungs to heal... Again thank you. I find miracles everyday from reading your blog

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