Sunday, May 2, 2010

You might be the mother of a child who has been in the hospital way too long with the hospital staff ask you if you're a nurse!  Too funny!  Nope, I'm not a nurse, just a mommy who loves her baby girl.  I'm my princess' advocate, and I'll be momma bear over my sweet child, especially while she lay partially paralyzed, sedated, and intubated (meaning she can't talk)!  I wasn't really even being momma bear, just sensitive bear, as I watch my daughter cry and shake and have these convulsion type of panic movements.  I sure do hope someone would sit by my side and advocate for me if I were paralyzed and unable to communicate my needs myself!  It is my pleasure and honor to advocate for my warrior princess who needs some ammo to continue in her battle!  (And, Dr. Porisch, if you're reading this, it was just an RT who asked me if I was a nurse because I asked some question that made me sound "official".  So, I wasn't misbehaving, just inquiring! :-)

Chrissie had a fairly good day, but her oxygen sats weren't as high as they've normally been.  They've had to suction her breathing tube/chest out quite a bit this evening, and they're getting out a TON of yucky stuff.  Old blood clots, clogs, and a whole myriad of yucky stuff.  One clot had partially clogged Chrissie's breathing tube, but they were able to break it up and get most of it out over a few suction intervals.

We received a blessing today when a former ECMO patient's mom delivered her daughter's pair of custom orthotics for Chrissie's feet that will help reduce pressure sores and help keep her feet in the right angle, amongst a bunch of other beneficial things.  This kind lady's daughter spent 42 days on the ECMO machine for respiratory issues (not heart issues), and she was just hours short of being the world record holder for a child of her age who held the longest hours surviving on an ECMO machine for respiratory issues.  (Chrissie's case is different due to her heart issues and not being able stay on the ECMO since she started bleeding profusely and would have ended up bleeding to death on the ECMO since it requires non-clotted blood to operate.)  Anyway, it is such a sweet blessing to see Chrissie wearing the specialized boots that were specially made for another princess who spent over a month in the exact same room as Chrissie, PICU 1 at Methodist Children's in SA!  (And, thank you to Pastor David Castillo for introducing me to this special mom...and thank you for feeding us your delicious chicken alfredo, too!!!)

My mom, Chrissie's Nana, pulled a 24 hour shift for us today!  She stayed by Chrissie's side and advocated for her while she read her stories and kept her company.  Chrissie slept peacefully most of the day, until the evening when she began to get agitated and uncomfortable.  (Of course this occurred just before I got to the hospital, and then I have spent the evening trying to help get Chrissie comfortable and figure out what is bothering her.  I'm just getting to sit down, and it's almost 1AM.  Praying Chrissie sleeps comfortably tonight! :-)

We had a fun time with the kiddos today.  The campground we're staying at is so nice.  It has a pool and a fun playground, and the kids have their bikes and scooters so they can enjoy "city life" for a while!  We went to Seaworld and enjoyed the sunny weather, although it was really hot...already, it's just May!  Thank you to those of you who pitched in to purchase our Seaworld season passes!  (Cristie, please pass along my thanks to all who donated to you, and thanks so much for taking care of the campground charges and blessing us with the Seaworld passes!)  It's so nice to get to just hang out with our kids and not have the stress of everything weighing down on us.  The drive to the campground is only about 20 minutes, versus the two hour drive to our house.  Kiefer (our newest son...from Haiti) didn't know what to think about Seaworld!  He didn't like the stroller, unless, of course, his big brother Sawyer got in it!  Then Kiefer wanted it all to himself! :-)  Kiefer wanted to ride the roller coasters, but he wasn't tall enough to ride anything.  He watched the Sea Lion show with Clyde, and kept pointing and talking Creole, but I have no clue what he was saying.  I think he was quite intrigued with the whole idea of watching these animals and people and crowds and loud microphones, etc.  Not something Haitians normally get to experience! :-)  He was a trooper though, and we were grateful to get out as a family and enjoy the sun.

I'm sleeping at the hospital with Chrissie tonight, and then I'll get together with the kids again Sunday.  Keep praying for Chrissie's lungs to clear.  She's got a long way to go, but with God, all things are possible.  And He is mighty to save.  All glory to God, our Jehovah Rapha.


Laurel said...

When our little guy was in a coma for a week (and even the week following the coma where he was still on a rollercoaster to save his life), we always had someone in the room (or right outside) with him.

At one point I explained to a group of doctors and nurses that it wasn't that we didn't trust them ... we were in AWE of the care he was being given. No ... the reason we always had someone by his side was so that they could pray for him whenever there was a need. It wasn't that we were huge worriers. Just the opposite, actually, we had the peace of God surrounding us, and we just wanted to always be in communication with the Lord (and passing along our prayers requests) when the need arose. One of the doctors thanked me, and appreciated the "teamwork" we had in saving our boy's life.

I slept in his ICU room every night for 3 weeks. My husband stayed at the Ronald McDonald house with some of our other children (though they only allowed 6 people per room ... and we had to get a hotel room for a few of the young adult/older teens). We lived 100 miles away from the hospital, as well.

My most awesome times of crying out to the Lord ... worshipping Him ... reading His Holy Word ... were in the middle of the night when everything was relatively quiet in the ICU. Just me and my blanket and my Bible ... on the bench next to my little guy's bed.

Be BLESSED. Your prayer warriors are praying night and day.

Laurel :)

Family Rebuilding the Wall said...

Just wanted to drop you a note to let you know that we're still checking in on your blog a few times each day and praying with faith. I'm so happy that you were able to get out with your family. God is so good!

Looking Up said...

I'm so thankful that you were able to get out of the hospital for a few hours. As a nurse, I'd often heard of patients who had been in the ICU for too long & were said to have developed what was called "ICU Psychosis". Well, my son was only in the PICU for 8 days following his open heart surgery, but I can tell you that by day 8, I began to lose it, so to speak. I never left my son's side for those long 8 days & being in all glass room, with bright lights continually shining, alarms continually ringing, & the fact that I was terrified that my son was going to suffer another major complication at any moment....all combined to make for one crazy mama. I was so thankful when my son was finally stable enough to be transferred to a stepdown unit. It wasn't until then that I finally felt comfortable enough to allow my mom & sister to stand guard over my son for a few hours while my husband & I took a walk outside of the hospital. I can't tell you what a difference that made!!!!!! As for people mistaking you for a nurse due to your lingo, I have to confess that when I first began reading your posts, I wondered if you were in the medical profession as well. You obviously have been listening to every word those docs have been saying very intently. But then, what mom wouldn't??? As you've said, you are your baby girl's advocate & if that means getting a crash course in ECMO 101, you're going to do whatever you have to do to see that your baby is safe. It's not education that you would have wanted, but one that you've received, nonetheless...Continuing to pray for your daughter's complete healing, Kim

Sweet Joni said...

Praising God for His loving hands on & around Chrissie!!! Many caring people I SEE. And continuing to reach out for prayers as we follow your blog.

I'm so learning from many! Riggs, Halls, You... While my father was hospitalized back in 2000, I didn't even know what a blog or Caringbridge was - did all updates by phone... oh the stress of just that alone, uff-da!!! [Course, I did when Mom was in so why not then? Riggs, don't]

Anyway, I'm thinking ONE reason Chrissie may be uncomfortable when awake is having to be being intubated. The tube down the throat does cause gagging & scratchy sensation, a horrible feeling! I know my father dispised it as the tears flowed down his cheek. [just like mine now] When he was out of the semi-coma he kept trying to take it out so they upped the morphine! :(

Am so grateful your family got to spend time together in the sun!!! Praise God for the blessings He is giving you!!! :)
God Bless, Hugs & Love
~Joni Lee

Laine said...

Lorraine, I am continuing to pray and checking in on Chrissie. She is such a princess and she has captured my heart! Even through the internet!
Enjoy your time with your other children! And I praise God for your wonderful support group! I know firsthand what a blessing that is!

Unknown said...

Another huge praise!

Have a blessed Sunday with your family!

Praising God for all the ways He is providing for your family now!


Ellen said...

Romans 8:11
11And if the Spirit of him who raised Jesus from the dead is living in you, he who raised Christ from the dead will also give life to your mortal bodies through his Spirit, who lives in you.

Job 6:10
Then I would still have this consolation—
my joy in unrelenting pain—
that I had not denied the words of the Holy One.

Romans 5:3-5
3Not only so, but we[a] also rejoice in our sufferings, because we know that suffering produces perseverance; 4perseverance, character; and character, hope. 5And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

Lord, I pray that Chrissie's pain be taken away. I pray that her panic attacks are removed. I beg you Jesus for her breathing tube to be removed; that her lungs would clear out and that she would be made whole and completely restored. Thank you Jesus!

Love, Ellen

Amy Molander said...

It's so amazing...yesterday I was on my way to a meeting and I just got the words from the song in my head "He is mighty to save, my God is mighty to save." I prayed, and asked God to be mighty for Chrissie, and then I turned on the radio. On the radio was the same song! I got tears in my eyes as I sang the words and continued to pray for Chrissie. He IS mighty to save, and it is wonderful to witness. Take care.

Debi said...

Glad that your family got to "get away" for the day. Sounds like an awesome day!
Praying today as always for your family and Chrissie and Dr. P. Praying for God's miraculous healing day by day.
Love and hugs and prayers,

Carrie & Rowan said...

Hi Lorraine, Carrie here from upstairs at Methodist Children's.. I get asked if I'm a nurse all the time too:-) We learn much more than we ever wanted to about medicine and know far too many medical terms. Consider it a compliment- you are paying attention and obviously being a tremendous mother and advocate for your precious daughter. The other day they tried to give me the employee discount in the cafeteria..hahaha, because they see me so much. Anyway, Rowan and I will be praying for Chrissie's transition to the new machine today and for no infection anywhere in her body. Rowan woke up this morning asking me to get my laptop and see how Chrissie is today (how sweet)and last night he colored a picture and said it was for Chrissie and then asked me if he would get to meet her sometime. Know that you are being thought of and prayed for by myself, and my little 3 yr old son, from just a floor away...throughout each day. God bless!

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