Wednesday, May 5, 2010

No MRI on Wow Wednesday

Chrissie will not have her MRI today because our great nurse, Steven, realized that she has metal leads from the pacemaker in her heart, which can't go through the MRI machine!  Dr. Kupferschmid has been out of town, and he'll be back tonight, so he may choose to remove the leads sometime tomorrow.  Chrissie hasn't needed the pacemaker in about a week, so I'm thinking they'll probably remove the leads and do her MRI tomorrow instead.

This morning Chrissie's sats dropped, but we think we discovered the cause.  The nurse was commenting on the drop in her sats, and I was watching Chrissie's face when all of a sudden there was a bunch of blood running out of her breathing tube!  The nurse responded swiftly and quickly suctioned her and got all of the blood out of the tube and her chest.  After that, her sats came back up.  We are thinking that her lungs were possibly irritated by the amount of pressure being blown in by the ventilator (which they decreased) or the blood may have been a result of Chrissie's mouth being accidentally "jabbed" as she bit down on her breathing tube moments before the incident (while she was being suctioned prior to the blood incident), and the nurse had to stick a plastic probe into Chrissie's mouth to pry open her mouth as she had a death grip on the tube.  (She even bit through the nurse's glove!)  So now everything is back to "normal" in here...whew!  The nurse complimented me on how calm I was through that ordeal, and I commented back that seeing that occur is nothing in comparison to all we've seen happen to Chrissie over the past 2 weeks!  Plus, my God always sustains me through the drama.  So thankful for God's consistent presence with me and in this room.  I truly don't know how anyone would make it through something like this without Him close by.  He is my Life Saver!

They are beginning to transition Chrissie from her IV drip "drugs" to oral drugs (which are administered through her feeding tube right now).  They know that Chrissie will go through major drug withdrawals since she's been on so many narcotics, but their hope is that if they introduce the oral meds that help with the symptoms of drug withdrawals now, before Chrissie is completely off of the IV pain meds, that she may have less drug withdrawal symptoms.  Please be praying for this because we've been told that drug withdrawal can be excrutiating.  I think of meth or crack addicts that I've seen documentaries about who go through withdrawals with vomiting, sweating, panicking, screaming, crying, shaking, convulsing, etc., and I pray our princess doesn't have to go through anything that extreme. 

As we've seen time and time again, when God's people have lifted Chrissie up to His throne, He has so graciously answered our petitions.  So, I ask you to lift Chrissie up to Him petitioning Him for an easy transition from IV pain meds to oral pain meds without the horrible withdrawals that many experience.

I've been blessed this morning with several visitors who I had never met until today.  They've followed our blog, and they were at the hospital for relatives having procedures.  They lavished me with food and gifts!  See, God is always making sure my needs are MORE than met!!!  A little girl here in San Antonio reads our blog every night instead of having a story read to her at bedtime!  She is praying for Chrissie and praising God every step of the way.  This little girl woke up extra early this morning to make me breakfast tacos (as well as a sandwich and chips and teas and she even sent some bath soaps and lotions and she made Chrissie a sweet bow for her hair!), and she sent it all with her mom to the hospital early this morning (before I was even awake!).  WOW!  It is Wow Wednesday, but I didn't realize just how He planned to WOW us!  God is so good to surround us with so many sweet friends who are lifting Chrissie up and supporting our family in so many ways.

Thank you everyone for your prayers and support!  We are grateful!!!


trennia said...

I have been praying, and will continue to do so.
I find it an honor to pray for other's and it also gives me time to just talk with our Lord.
Sending (((HUGS))) from Ky.

Unknown said...

Praising God that the nurse realized that - I was thinking how can a pacemaker go into an MRI?

Praising God Chrissie is doing so well today!

Praising God for the little girl who wanted to lavish you and Chrissie with His love!


natali said...


Shannon said...

So good to read this report! Praying for Chrissie as these transitions happen, that she will feel that she is in the palm of His hand, sheltered from the storm where nothing can bother her!
What a beautiful gift from that little girl. I hope her Mama reads her these comments and lets her know that she is being the hands and feet of Christ! Way to go little one!!!!!
Hugs & Prayers,


"Are These Kids All Yours?" said...

Awww... praise God for raising up children to WOW us! That is so awesome. Praying continuously for Miracle Child- Chrissie!!!

Matushka Anna said...

It's been far too short a time for Chrissie to become "addicted" to the pain medication. Tolerance and addiction are two different things. As Wendi said, taking pain medication for pain is completely different than taking it for a high. If Chrissie seems to be in pain, then she needs pain medication...period. I think that your nurses and doctors know this. They're trying to transition her from IV to NGT pain meds because she'll eventually have to be on them anyway. In addition, she can be on medications that last much longer than IV meds. This will keep her from riding the pain roller coaster.

It's wonderful that people are beginning to think long-term about Chrissie! Very encouraging!

Jodi said...

Thinking of sweet Chrissie.


Kelly Pape said...

I remember being so scared about the withdrawal with Kaetlin as well, after being on morphine & a paralytic along with 20 or more other medications for 3 1/2 months. Dr. Spinella (Wilford Hall Doc who published a paper on Kaetlin) explained to me that addiction is very different than dependence (which is what Chrissy & Kaetlin have/had). They will wean Chrissy onto methadone if they haven't already and control her body's withdrawal based on indications that she's in pain. I remember being so excited for the day Kaetlin would begin taking the methadone because I knew at that point they thought she would survive (crazy). Only someone who has been through something like this can understand that rationalization! I hope this eases your fears a little. Our God is so mighty! No one thought Kaetlin would survive but almost 4 months later we left the PICU. I have seen 1st hand God's Grace and love for his little ones. Our family is constantly praying for Chrissy and all of you. Keep Hope Alive!
Much love,
Kelly Pape

Katie said...

That is great news!! Still praying for little Chrissie's complete healing!!

Debi said...

Thankful to God for such a wise and caring medical team and for the amazing new friends that God is bringing to you. What blessings!
Love and hugs and prayers.

Lisa (DanielsMommy) said...

I've been lurking for a few days now...and wanted to introduce myself. I am Lisa, Mom to Elayna and Danny. My little guy has down syndrome, and I found a link to your blog on one of the support boards I am part of. We are from RI, and I wanted you to know we are praying for your sweet princess Chrissie. My little guy had open heart surgery at 8 weeks I am a 'heart mom' as well. It has been amazing reading about the miracle's you have witnessed...Praise God.

Laurel said...

I have to tell you the weirdest thing ...

This is the first time that I have been able to read your blog for the past 2 days. (Prior to that I was checking in many times throughout each day.)

Seriously ... I have tried to log into your blog over and over for 2 days. EVERY time, before your page will open, my whole Safari crashes ... shuts down ... gone ... EVERY other blog has worked perfectly during those 2 days. YOUR blog has crashed my Safari (like Firefox, for non-Mac people) EVERY time for 2 days.

I believe it has been totally spiritual warfare. I have so desired to know how you all are doing ... I have been praying for you since the day Chrissie had her first surgery. And ... the enemy was not too happy about it. No other possible explanation.

Just had to share ... I was so BLESSED to be able to get back on your blog tonight. Whew! It was weird!


Laurel :)

Sweet Joni said...

Re: MRI - THANK YOU Nurse Steven!!!

Re: blood - So Chrissie has a bit of 'flair' to her eh' LOL Good sign she is a 'fighter' (Warrior Child) :-)

And I couldn't agree more with Wendi & Mutushka. :-) The level of pain predicts the amount of pain meds needed. When pain level is HIGH one will not get a "HIGH" unless OVER medicated. (acting goofy)

However, Methodone is the WORST drug to withdrawl from... which is not mentioned whether they'll continue Chrissie on that orally. I'm Thankful they are weaning her over tho b/c this is a Positive sign as it's already been mentioned that Drs. are preparing her for home!!! *IF she even needs pain meds when leaving the hospital* :-)

And it is so TRUE that mismanaged pain can lead to mental disability...

Now because IV works thru blood & Oral works thru stomach, Chrissie MAY get a bit of a tummy ache tho that too will be carefully watched over. I am GRATEFUL that YOU are her Mommy & Advocate!!! *hugs*

God Bless,

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