Friday, May 7, 2010

Punk Princess

I decided to decline the MRI today.  I just didn't want to put Chrissie through that with all of the other stuff she's battling.  I couldn't imagine unhooking her from her IV meds and ventilator and hand bagging her (forcing oxygen into her lungs manually via an oxygen bag) for an hour or more.  Plus, if she started to bleed again in her lungs, what would they do to handle that without her suction device that's attached to the wall in her hospital room?!?  And she'd be exposed to all kinds of germs as she would have been wheeled out of her PICU room and down to radiology for the MRI.  Too many things that made me have my mommy red flags.  The MRI was ordered simply to look at her brain to see what (if any) insults it took during her crashes and ECMO experience.  The results of the MRI would not affect anything they're currently doing for Chrissie, so I really feel like it's everyone's curiosity around here more than anything that was causing the rush for the MRI.  We'll look into it again next week.

Everything is fairly stable in here again.  The doctor (pediatrician in charge of PICU today) said that they do believe there is some bleeding in Chrissie's lungs, but they don't believe it's severe enough to do anything other than what they're currently doing.  One reader commented that when they suction, if they will use ice cold saline water, it will decrease bleeding, and that is exactly what they set up.  Someone knows their stuff, huh?!?  They have the saline syringes soaking in a container of ice, on hand for the next time they suction incase there's bleeding.  (They hadn't experienced this before with Chrissie at this level, so they didn't have the ice saline ready the first time it happened this morning.)

They've turned the ventilator settings back up so that Chrissie's lungs can rest and heal more.  They had moved quickly with decreasing settings to see how much her lungs could handle, and today her disobedient, sick lungs rebelled and demanded that they continue to receive more external support.  Chrissie's oxygen sats are between 80-84 most of the time now, which is not as good as they have been, but they still have a lot of room to turn up the ventilator if necessary.

Chrissie is on an antibiotic specifically used for treating shingles.  Hopefully this weekend a lot of healing will occur with Chrissie (from the shingles to the lungs to anything else that needs extra help!) and next week will be a week of more progression.  They are keeping Chrissie pretty sedated now, which is wonderful so that she doesn't have to endure the pain and itching of the horrible shingles and she doesn't have to fight the ventilator.

From a reader (Hola Sara!):  "Many of us probably have the same questions. A few I have are ... 

"Will Chrissie "wake up" when they're able to take the ventilator off?  Or will she wake up on her own? Or do they wean her from the sedation drugs to wake her up?"  Chrissie is actually "awake", but just sedated.  Hard to differentiate, but it's basically like she's just super sleepy, so sleepy that she can't really even open her eyes.  They have her on good pain medicine with something we might compare to some powerful sleeping pills so that she's not fully awake and in pain, frustrated, aggravated, etc.  Chrissie can still respond to us. She will raise her eyebrows to communicate, and when she gets really angry (because someone is doing something she doesn't like), she will grit her teeth and make all kinds of really mean faces with lots of grimacing.  Just a few minutes ago, Nurse Steven, was irrigating her nose with saline and the suction tube, and Chrissie raised her left arm and tried to sock him!!!  She actually "got him", but, of course, she didn't have enough strength to hurt him!  I just held her hand and cheered her on, knowing my baby girl is fighting in there and not giving up! :-)  When it gets toward the end of a dosage of her sedation meds, Chrissie has a lot more movement and expression, which is sometimes really hard because that's when she's not happy and she might cry and grimace and wince, etc.  But when that happens, I always know that her next set of meds are due within about 30 minutes, so I begin asking the nurses to get the meds, which fixes everything up again and makes Chrissie more comfortable within another 30 minutes after being administered.  Before Chrissie will be able to get off the ventilator, she will have to be much more awake because she'll have to prove that she can breathe on her own (which is harder to accomplish fully when sedated), and she'll have to be able to cough on her own.  She will be very uncomfortable during this phase because the tube will still be down her throat, but she'll be awake enough to fight it and really want it out.  Chrissie's not ready for that phase yet.  Maybe next week.  That will be a bittersweet time.

"Overall, are the medical personnel pleased with her progress?"  Yes, the medical personnel is ECSTATIC about her progress.  No one thought she'd be here today after all she has been through.  They are in awe, just as I am.  Everyone comments on how strong Chrissie is, what a fighter she is, and I've even heard several people say that any other child would have never survived this!  They're extremely encouraged by Chrissie's progress.

"And you ... do you spend your days in the recliner next to her bed with your computer?"   Yes, I spend my days and nights by Chrissie's side.  I'm normally  not relaxing in my recliner with my laptop until late at night when things are slower around here.  Sometimes when Chrissie is totally sedated and all of her sats are good, I climb into my recliner out of sheer exhaustion, only to get snuggled in and have some alarm go off, then I hop up and check out what's going on.  I call it the orchestra of alarms.  There seems to ALWAYS be some alarm going off...chimes for oxygen sats being too low, blood pressure being too high (or low), CVP being too high (volume in Chrissie's heart), heart rate being too high or low, ventilator beeping to saw that Chrissie's fighting the ventilator or overbreathing it, then there's all of the medications that have alarms that tell when something is running low or has run out, and another alarm to sound when her feeding bag is almost empty, etc., etc., etc.  (Chrissie is on 11 different drugs/meds/feeds that all have alarm boxes, plus the ventilator, the oxygen probe, and all of the probes all over her chest and abdomen that all have alarms attached to them.)  I also change diapers numerous times/day, and I do physical therapy and occupational therapy on Chrissie 3-5/x/day.  I read books to Chrissie, pray over her, rub her hands and body and kiss all over her.  I fix her hair, suck snot out of her nose and spit out of her mouth, wipe her tears, and act as her voice for meds, discomfort, frustration, etc.  I'm also known to remind the nursing staff to change their gloves after they change her diaper and then start touching around her breathing tube or chest, and I'm always on alert for things that get dropped on the floor and then stuck back up on her bed to be re-used...I'm the germ police!  Oh, I also watch her breathing tube for build up of condensation or fluids, to let the respiratory therapist know to suction her so the liquid doesn't dump back into her lungs.  I also monitor Chrissie's body temperature to make sure she remains comfortable.  (She likes to be at 98 degrees farenheit, which often means changing the thickness of blankets she has on until I can get her at the right temperature...remember, she is the princess and the pea!)  I also make sure her body is rotated throughout the day and that she's not lying on cords, that her IV tubes aren't being pulled and stretched away from her (there's about 15 of them that get stretched away from her all of the time), and I make sure her urine catheter doesn't get pulled too hard when she's moved (and I clean it well with her diaper changes, trying to reduce chance of urinary tract infections.)  I also fix Chrissie's hair and give her massages, and give her "baths" (using antiseptic wipes that we warm in the microwave).  Then, between these tasks, I visit with doctors and specialists, asking questions and trying to figure things out.  The nurses do an excellent job of taking care of Chrissie, but she's not THEIR child, and we all know that no one but God loves our own children more than we do.  I don't send my children to day care, pre-school, Mother's Day Out or public/private school, so it's really hard for me to let someone else take care of them.  (Especially a child who has no voice or ability to communicate at this time!)  That's what God put me on this earth to do, and it is my pleasure to stay by Chrissie's side, night and day and make sure her every need is met.  I'm also blessed to have atleast one person who delivers a meal to me every day, and I've got the timing down now when I know for sure that Chrissie is going to be "out" (meaning that a certain combo of meds has been given and is active at that moment, keeping her comfortable and sedated) where I sneak away and walk the stairs for a little exercise.  I grab a milk on the 3rd floor patient kitchen, and take my vitamins on the way to the private shower on the 4th floor.  Then I get back to Chrissie before anything changes too much.  (I'm gone to the shower for about 30 minutes/day in the mornings.)  Most of the time I don't have to leave the room for anything other than a bathroom break, as there are no bathrooms in the PICU for parents/patients.)  Chrissie and I "hang out" 24/7, with K-LOVE Christian radio on ALL of the time (including throughout the night) since that's Chrissie's favorite music and it helps drown out the scare of the monitors when they all start beeping simultaneously and Chrissie begins to grimace...the alarm orchestra in harmony with K-LOVE!

"Who is doing all the "mom" stuff back home (cleaning, shopping, buying supplies, ordering Sawyer's food, laundry, etc.). Just wondering how your family is managing?"   God has set up the most amazing plan for our home.  In August, I implemented a system called "Managers of Their Chores" by The Maxwells, a large homeschooling family, which explains the Biblical importance of chores and work ethic and what our children learn by doing chores.  (Amazing book that I highly recommend.)  Before we left for Serbia to get Chrissie, we had the chore system going, and that has been a true life saver.  Each of our children has their own chore folder which has a schedule for every week day, and they all do a few chores/day, which keeps the house clean and organized.  With everyone pitching in every day, it's not too overwhelming, and our kids really take ownership in helping keep things clean and organized.  (Moms, you know that feeling after you just mopped the floors and then the kids walk in with mud on their shoes and you're appalled that someone could do that to your sparkling floors that you worked so hard on?!?)  Well, if your kids are the ones who mop the floors, guess what?!?  They don't walk in with mud on their shoes! :-)  It's a win-win situation!  When our kids do chores, they are learning so many character qualities that otherwise cannot be taught/learned, and they are much more aware of taking their shoes off at the door before entering!!!  Our 12-year-old daughter, Mattie, washes all of the laundry a couple of days/week, and our other 12-year-old daughter, Meribeth, does all of the folding of the laundry.  Mattie and Meribeth also have a "cook-o-rama" once/week to prepare Sawyer's special meals for the entire week.  (Sawyer has allergic colitis and cannot eat the foods that the rest of us eat, so the girls are preparing his meals for the week.)  I order the rest of Sawyer's food and snacks via the internet and have them delivered to our house.  I also stocked up on all of the necessities for the house before we brought Chrissie to the hospital, so everything was organized in bulk before we came to the hospital.  As things run out, my husband makes a run to the store to get more or we can ask Emily (Stephanie's daughter) who is always eager to run errands for us.  Everyone takes turns watching Kiefer (our 23 month old from Haiti) throughout the day.  My hubby stays home until 10AM with Kiefer on weekdays, then Emily watches him from 10-12Noon, then he naps and the kids do school in the house with the monitor on, then when Kiefer wakes, the kids alternate through 30 minute shifts until Matt gets home from work around 5PM.  This is truly an awesome time of learning discipleship, diligence, serving, selflessness and bonding as a family.  This is a definite team effort, and God has worked things out so beautifully.  Sure there have been ups and downs, but God is working out those kinks, and while everyone eagerly awaits the time that we can all be back together again, God is sustaining us through this time of separation.  God has blessed us with generous friends who are delivering meals to our family every evening on weekdays, and then people in the San Antonio area are delivering meals to our camper on the weekends.  My friend, Stephanie, is teaching school to our children.  (She lives on our ranch and took over homeschooling when we went to Serbia to get Chrissie, which God designed just perfectly.)  Stephanie is a brilliant woman who loves the Lord and loves homeschooling, and God designed this marvelous tapestry of help that allows us to serve in orphan ministry to the children God calls us to.  With many hands helping and serving and the awesome support of God, the burden is light and the yoke is easy.  We all knew that adopting Chrissie would mean lots of doctor's visits, hospital stays, and therapies, but her life is worth it, and the small sacrifices we are making are nothing when compared to the value of the life of God's precious princess. 

If you'll look in the background of this picture, you'll see a large container hanging on the wall with a blue lid.  The red stuff in the container is the blood they sucked out of Chrissie's lungs this morning!!!

Shingles on Chrissie's back.

Look at my sweet baby's arm!!!  This is her shingles outbreak that covers her entire arm and is even in between her fingers.  Poor baby!!!

The cast made of Chrissie's leg for her special orthotics that will help stretch her calf muscles, making it easier for Chrissie to walk and run and dance and jump after she comes HOME!!!

Yesterday, the hospital delivered me a Mother's Day gift on behalf of Chrissie!!!

Punk Rock Princess!  Chrissie has been more swollen today, but this seems to be the case where she fluctuates between looking "normal" and looking "puffy".  Chrissie had a punk pony tail today that I thought was too cute to tame, so we called her our punk princess today.


Kritter Krit said...

You are an amazing mom. You guys are an amazing family. Our God is an amazing God!

What an incredible testimony of Christian love working in perfect sync. Wow.

Praying for your sweet little punk princess. Love her spunky spirit! That girl is going to accomplish great things for the Lord one day! ...Heck, not "one day". NOW!

Love from Arkansas,

Family Rebuilding the Wall said...

God bless you abundantly! You are putting such a beautiful face on motherhood, and I'm blessed to have "met" you. I continue to pray daily for your angel girl. Still claiming Psalm 118:17. Thank you, thank you, thank you for that incredible post!

Donna said...

Ah, the tears!

I attended a special Mother's Day celebration at my kids school yesterday and today (they're virtual twins). Such a wonderful memory so I couldn't help but get choked up when I saw your Mother's Day gift from Chrissie. Next year I'm hoping and praying that she'll run to you with her big sweet smile and give it to you herself!

My thoughts and prayers are always with you. All of you. Please be well!

Our Blog: Double Happiness!

Kelly Pape said...

You are such a beautiful person, Chrissy will always know how you never left her side through all of this. I am still praying for your little princess.

Keeping the Faith,
Kelly Pape

The McBs said...

just wanted to say we are still praying... love that punk rocker pony tail... my KG sports one too! Gotta love your sweet girl!

Matushka Anna said...

God bless you all...I'm overwhelmed. I was a nurse for many years and it is so helpful to have a family member there all the time to keep an eye on things (nurses can't be in the room EVERY moment), to provide continuity, to be an extra set of eyes and hands when there are so many tubes/lines. But most of all, to ADVOCATE for the patient. Rest assured that Chrissie needs you. It is a blessing that you are able to be there.

Our mission said...

We are praying for your precious little girl in this time of hardship.
The Adamsons

Anonymous said...

i just read a bible verse on Verse of the Day and thought of you guys!
1 Thessalonians 1:16-18
Be joyful always; pray continually; give thanks in all circumstances, for this is God's will in you Christ Jesus.

Carrie and Rowan said...

Rowan and I prayed tonight for the lungs and the shingles to heal quickly and for complete comfort for Chrissie. I got my Mother's Day gift from Rowan (the hospital) today too...aren't they great!

They also brought him a quilt today (since it's so cold everywhere here in the hospital) and that made me think of something I would like to offer you. I've made quilts for years, and especially love to make memory or tribute quilts with photos on them for friends and family. I made one for Rowan's favorite hematologist/oncologist last year before he moved to Indiana. It ended up being 7 ft by 7ft and had over 100 pictures of him and his patients throughout the years he practiced here. I'm doing one now for a friend whose son is in remission from Cancer, and it has pictures documenting his journey through treatment. Once things settle down here and you finally get to take your princess home, think about if you'd like me to make a memory quilt of Chrissie's journey through this heart surgery and miraculous healing process. I can just picture it now, lots of pinks and heart and princess prints, with some of your favorite pictures from this stay (fav nurses w her, you rubbing her hand, Dad soothing her, etc), scriptures, etc. It could be a wonderful way to have something tangible and personal to look at with her, and be able to remember the miracles you've witnessed here, and to show how great our God is!

I would be honored to do this for you, and it would be my true pleasure to gift this to you, if you decide it is something you'd want. Just think about it and let me know. All you would need to do is email me the photos you'd like included. And if you wanted certain colors or scriptures, you could tell me that too. I realize this is a very personal thing, so I hope it isn't too wierd for me to offer that, And since you don't know me very well, I can send you pictures of some of the others I have made, so you can get an idea of the quilts I can do. As I said, no rush to decide, and my offer will remain open, because I have a feeling there are more and more miraculous moments and favorite photo ops to come. Just wanted to throw it out there to you Lorraine.

Rowan may be well enough to go home (again) soon on iv meds and antibiotics, but he is coming back for surgery next Wednesday. I will check in on you and Chrissie again then if we do go home anytime this weekend, but will continue to pray whether it be from upstairs here at the hospital or from my home.

In His precious and Holy name,

Michelle said...

i know this is bad timing, but if you get the chance would you PLEASE go to my blog & read the last 2 entries? they're really short compared to yours, and we REALLY TRULY DESPERATELY need prayers. even if you don't share about it on your blog, just having your prayers would be enough. but, of course, that's only if you get the chance - i know Chrissie & your family comes first. ;-)

just reading all you're doing for Chrissie, all those little "mommy things," i want to encourage your heart & let you know that you are doing an AMAZING job! even though i'm 23, i'm often the one in the hospital bed, and although i'm nowhere near as critical as your little girl, i want my Mommy during those times! she fights for me & that alone reassures me. your precious daughter has only been with you physically for a short time, but i can see the love you have for her, and i know that without it she wouldn't be here right now. Chrissie joining your family likely saved her life, from what i can see. Jesus is totally using you in her life & through her life He is being glorified. although this is an unimaginably hard time for all of you, and especially Chrissie, i want you to know how much God is using all of it. of course we all wish He could accomplish His purposes another way, but at least if you have to go through all of this, you can know that it is NOT in vain.

praying... as always. :-)

- michelle

Chandra said...

I think the "punk" look is just right for a tough day like this...those shingle look awful! Hang tough little warrior!

What an incredible gift that you CAN be with Chrissie during all this. You've probably seen many little ones who don't have a "voice" in time of need: to be the germ police, to get meds when needed, to encourage and pray over. What a blessing! Thank you God! Please continue to bless this mom with the strength she needs.

Praying that God continues the healing He is doing in Chrissie.

I thank God for all He has done in your lives to bring you to today, for orchestrating everything to His glory!

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