Monday, May 3, 2010

We've had a few "issues" (minor) this afternoon that started around 2PM.  I'm not sure if Chrissie is allergic to morphine (thus making her itch) or if it's something entirely different that's agitating Chrissie.  It began as we were changing her diaper (Chrissie now has poopy diapers since her intestines are being tube fed).  Chrissie gets embarassed that she's pooping in a diaper, so I know that when it comes time for a diaper change that Chrissie will cry a little out of sheer embarassment since she's such a big girl yet she's wearing a diaper.  (She still has her bladder catheter, so no tee-tee diapers.)  After the diaper change, Chrissie just got more and more agitated, which was coming out as tears and grimacing and high blood pressure.  We couldn't figure out what was causing her such frustration.  We gave Chrissie a dosage of Adavan (sp?) to help relieve some of her agitation, but it did nothing.  Next, we gave an extra bolus of morphine (like an extra "shot" of it through her normal IV drip), but that didn't do anything to help her.  So then we gave a dosage of Chloryll, which usually helps tremendously, but it didn't do anything either.  (Someone else mentioned Versed, which Chrissie has a constant drip being administered.)  After standing by Chrissie's side for an hour and half of her being frustrated and upset and crying and agitated, I decided to paint her toenails since Chrissie LOVES to have her toenails painted.  That didn't do any good (although her nails look cute!), so I knew Chrissie was really perturbed or hurting. 

The hardest thing is trying to determine the source of it pain, itching, uncomfortable position, gagging/drowning feeling of being intubated, or a whole host of other possibilities.  Chrissie can't talk while intubated, and the only movement she has right now is slight control over her left arm/hand and her eyebrows/lips.  (Will write more about that later.)  I noticed Chrissie kept taking her left arm and moving it toward her leg, then it appeared as if she was scratching her leg, but she doesn't really have very good control of her fingers, so she's always "grasping" and fidgeting, which just confuses us to figure out if she's scratching because she's itching or if she's just moving in frustration.  I was asking Chrissie to answer "yes" by moving her eyebrows up and down for me, but I don't think this worked b/c I asked her questions that she should have said "no" to (which would mean she would hold her eyebrows still instead of scrunching them up and down), yet Chrissie still answered yes to the no questions.  For example, "Chrissie, do you like chocolate?"  Chrissie wiggles eyebrows up and down.  Then I ask, "Chrissie, does your body itch?"  Chrissie answers yes with her wiggly eyebrows.  Then I ask, "Chrissie, do you like boo-boos (shots/IV's)?"  Chrissie answers yes.  So, that throws out that theory of yes, Chrissie is itching.  UGH!  This is so hard to figure out!

Chrissie is resting well now though.  It took 2.5 hours to get her to settle down, which was HARD.  I stood by her bed and rubbed her and talked to her, encouraging her and trying so hard to figure out what was going on, but I never got it figured out.  We finally chose to reposition her to see if that would help, and within about 10 minute of repositioning her, Chrissie calmed down and went back to sleep.  Maybe it was just a princess and the pea meltdown. :-)

I asked about her ventilator and lungs and if anyone can give me a time frame on all of that, but no one can even guess if it will be days, weeks or months of being on this ventilator.  It is a transitional ventilator, and Chrissie is still very dependent upon it.  There are hundreds of variances in the settings that directly affect Chrissie's blood gasses, oxygen saturation, Co2 levels, etc., and the machine can be set at a variety of levels that deteremine Chrissie's breathing rate, mean pressure, amount of air being puffed in and so much more.  I have no clue.  I asked the respiratory therapist today, but he was unable to make any guesses.  I just know that Chrissie is a long way from moving to even a "normal" ventilator, so lots of prayers still needed for healing of Chrissie's lungs.  God knows what needs to occur in there, so He hears your prayers and petitions and knows exactly what needs to occur to heal those lungs, which were Handcrafted by our Maker.

Keep praying for no infection.  Chrissie has had low fevers on and off today.  So far nothing is growing on the cultures, so that's good.  She still has MRSA (staph), but no one seems to be all that concerned about it.  Chrissie's on antibiotics that would treat staph, but not real sure what's up with that.  (Dr. Porisch...I need you!)  Dr. P always keeps me informed on everything, so I'm really missing being such a PPP (Porisch's Pampered Parent).

Gotta go, Chrissie's crying and moving back later...


kate said...

Praying for peace and no agitation. I can't imagine watching her go through that, but it makes feel better to know she's not alone and you are right with her. Hang in there Chrissie! Take one minute at a time and fight and before you know it that tube will be out of your sweet lungs! You are awesome!!!

Unknown said...

Praying for her comfort now!

Love you,

Looking Up said...

Will keep praying!

texaslauren77 said...

Hi There! Just reading through your post, and I had a BIG surgery a few years back...Anterioposterior Spinal Fusion of L4-L5 and L5-S1 vertebrae...not fun! Anyway, there was a LOT of pain involved, and prior to surgery, a few trips to the ER where heavy doses of narcotics for pain and to relieve muscle spasms were administered. Initially after receiving the drugs, they brought a lot of relief, and I would always feel so much better. But, as the drug began to wear off, I would ITCH like nobody's business!! I don't think it was necessarily an allergy...I'm an asthmatic, and typically, my allergy issues involve an asthmatic reaction with a tight chest, goopy lungs, severe nasal congestion, sneezing, etc... In this case, I just itched EVERYWHERE like there was no tomorrow. Obviously, it's probably pretty hard to tell what's happening with Chrissie's lungs in relation to the medicine since they seem to have issues of their own, already, that look a lot like what an asthma attack for me might look like. But, wondering if there is any nasal congestion or inflammation elsewhere that would indicate an allergic reaction... Or, maybe it's like you were talking about earlier, and she is metabolizing the drug very quickly, and is experiencing the itchy side affects as a result... I know you are in the best hands possible, and the doctors will figure it out, but just thought I'd share my experience with you! You all continue to be in my prayers! :)

ashleypmo said...

Praying that God will relieve her discomfort, and that He will continue the work of healing her lungs quickly and completely, while protecting her from infection.

Cristie said...

Oh sweet Chrissie, I pray that you will be comforted right now. I pray that our healing God will come and place his hands into every inch of your body and piece by piece, begin to make new every cell, every organ, every beat and every breathe! Sweet Chrissie, I pray that you will be healed SOON!
Jesus said to her, "Daughter your faith has healed you. Go in peace and be freed from your suffering". Mark 5:34.
Chrissie, I pray that even as you lay there, still, with little ability to communicate, that you are having sweet conversations with your maker. I pray that soon you will hear the words of Mark 5:34. I pray that your Lord will heal you and give you peace!
Chrissie, your sweet Mommy is at your side doing everything she can to give you comfort .. to be your advocate. But I know, Chrissie, that our God is with you too. Cry out to him, Chrissie ... he will bring you comfort in those moments. He tell us so ...
"As a mother comforts her child, so will I comfort you. " Isaiah 66:13. Chrissie, your Mommy and those around you try and guess what it is that is the source of your discomfort ... but HE knows ... He knows your thoughts, your hurts, and every ounce of your make up. He KNOWS! SO Lord, please please speak to Lorraine, to the nurses and through Chrissie and in those moments that seem frustrating ... let them know with clarity how to make her comfortable and what it is that YOU SEE and what YOU HEAR! Father, we know that you love Chrissie more than even her Mommy and Daddy could ever fathom and so we trust that even in the middle of the PICU unit Room #1 .. you are there are present ... and you have a wonderful plan!
In His love
Cristie Martine

Shelli Craig said...

Praying for Chrissie - and no infection -- and praying her lungs are healing and she'll be able to be off the vent sooner rather than later. My heart breaks for both of you knowing you can't know what is hurting her or what she needs in this state. I understand. :(

Hopefully they will find the correct concoction to keep her comfortable.

Anonymous said...

Maybe she is hot or cold??? My dad had open heart
surgery and was intubated and as he was starting to
wake up he was very hot and wanted uncovered but he couldn't talk to tell us that. Just a thought?!
I've been praying for your sweet girl since the beginning!
God is so good!

Anonymous said...

Praying each day for your Chrissie. I am praying for her lungs to heal and I am praising Him that there are no more bad reports to do with her heart.

I am certainly no expert in all your beautiful daughter is going through - but maybe its just the fever causing your daughter to be agitated. When my son was 2 he spent some time in hospital firstly with meningitis and then with Kawasaki disease. He was a really cranky case from fever and when he had blood product transfusions to help with the Kawasaki disease he was itchy and given antihistamine (due to low level allergies associated with the transfusions).... not sure if there is any help in this for you as you seek to understand Chrissie.

Praying for the Lord to give great strength and peace to your family and you lean on Him your rock.

Kristy (Australia)

Arnold family said...

So sorry for her visible discomfort today, will be praying more for her healing and comfort. It must be so hard not to be able to comfort her, but I am sure she is so glad that everyone is there for her and loves her.

Holly :)

Lori said...

That has to be SOOO hard seeing her grimacing, crying or struggling in any way and trying to figure out what is causing her distress! I am continuing to pray that God lay His Healing hand on her and fill her with peace, take away any discomfort she may be feeling. For what it's worth, I HAVE heard of morphine causing intense itching in some patients. Not sure if that's the situation with sweet Chrissie or not. I wonder if they could give her a dose of Benadryl when she is on the morphine so that the itching is resolved but pain is still being managed? And you mentioned talking to her and rubbing her. I know that massage is therapeutic on both the emotions and the body. I wonder if that might relieve some of her distress? Another thing you can try.... Is there a favorite beach or place that is calming and soothing that you all enjoy? You might want to play classical music in the background on low while taking her through a visualization...having her imagine for instance, her feet in the warm sand, squishing up between her toes, and the smell of the ocean air, or the feel of the sun--use a lot of detailed images and see if that relaxes her. Just a thought! Ativan is usually pretty good for anxiety and panic but I guess it depends on the individual as with most anything else. I pray princess Chrissie has a restful night and that the Lord continue to work His miracles on her little body and especially her lungs and heart! It's got to be sooo hard for all of you--I'm keeping your entire family in my prayers as always, Lori

Anonymous said...

i was thinking she may be getting urinary tract infections... which is very common with catheters.... michelle p. fayetteville nc

Dorrie said...

I have been following your blog for a bit now, since right about the time your precious princess had her surgery, so 2 weeks? Anyway, I wanted to say that I pray daily for her and for your family, for the doctors, etc.

When I had my son via csection 5 years ago, I had horrible itching after the duramorph (long acting morphine - giving in the spinal) was wearing off. You may not be far off, but then of course, as you have said, so hard to tell. Wishing her peace, and you rest.
Your family is beautiful!

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