Many of you have asked for a "day of surgery schedule", so I'm going to post a "rough draft" of what we "think" will occur:
• Sunday, Feb. 21, 8PMish: Matt, Lorraine and Chrissie will travel to San Antonio in our RV and "camp" in the parking lot of Methodist Children's Hospital.
• Monday, Feb. 22:
o 5:30AM, Chrissie must check in at the hospital
o 5:30-7AMish, Pre-op “stuff” (meet with various doctors, get into gown, anesthesiologist will give Chrissie a “cocktail”, etc.)
o 7AMish, Chrissie will be taken to the operating room. (We will get to walk with her all the way into the operating room and stay with her until she is asleep. She’s normally not traumatized by this, and she will not get any needles until after she is asleep. We’re the ones (Matt and Lorraine) who will be traumatized as we say goodbye to our baby girl!!!
o 7AM-8AMish, Prep for surgery. (Chrissie will be under anesthesia for all of this as the team of doctors prepare everything necessary for Chrissie’s surgery. She’ll be hooked up to a “life machine” and have lots of tubes and electrodes and “stuff” hooked up to her. The “life machine” will keep her alive. It will do her breathing and keep her body alive while her heart is not able to function during the surgery.)
o 8AMish-???, Open-heart surgery. We really don’t know how long this will take. This is not a routine surgery. This is not normally performed on 4-year-olds. (This is normally done within the first few hours/days of life as one normally cannot survive without open-heart surgery when one is born with Chrissie’s heart conditions.) The surgeon told us anywhere from 4-8 hours for his part of the surgery, and then the surgical team will need to work for as long or longer to stop the bleeding. So, Chrissie may be out of surgery anywhere from Noonish-8PMish. We just don’t know.
o After Chrissie’s surgery is completed and they have stopped her bleeding, she will be moved to PICU. She will remain on the life machine, she will be intubated, and sedated. At this time, Chrissie’s body will be needing to learn to operate again. Her heart will need to learn how to pump (it’s never done that!), she’ll need to get to a point where she can breathe on her own, her oxygen saturation will need to stay in a “normal” range, and her blood pressures will need to stabilize, amongst other things. This is a time that we don’t want fever, and of course we don’t want any complications. (One possible complication that the surgeon explained is that once her lower ventricle fills with blood (the one that they’re going to install the cadaver pulmonary artery into), it may not know what to do with it and instead of pumping it out (which it’s never done), it could swell with blood and her heart could literally explode. They’re installing a special “pop-off” patch over the hole between the lower chambers so that it will pop off if the pumping ventricle doesn’t do its job correctly so that her heart won’t explode.) We want Chrissie to be able to stay sedated as much as possible after the surgery so she’s not agitated by all of the tubes and freaked out (and boy, does she FREAK out in hospitals, understandably, after spending her first 10 months of life alone in a hospital, abandoned by her first family who couldn’t afford to care for her condition), but sometimes too much sedation affects blood pressure in a negative way, so it’s a careful balance.
o Chrissie will remain in PICU for about a week, more than likely, unless there are complications with getting everything to work correctly. After everything stabilizes, she’ll be able to move to a regular room and then she’ll be able to go home after they are sure everything is going well, she can eat and drink on her own, pee/poop on her own, etc. We were told to “expect” around 2 weeks at the hospital, but it could be longer or shorter, depending upon how Chrissie’s body reacts to all of this “re-plumbing”.
o For those who don’t know, Chrissie doesn’t have a pulmonary artery or valves, her lower ventricle (the most important one) doesn’t pump blood, she has no blood flow from her heart to her lungs, she has many “kinks” (think kinking a garden hose) and stenosis (narrowing) in her pulmonary vessels and veins where blood must get through the tiniest of openings, she has a 75% oxygen saturation rate (resting), she has a huge hole between the lower to chambers of the heart, and she has a God-made blood flow system of vessels in her neck that He created to keep her alive (that no one else has), but it works independently of the heart and could fail at any moment, plus it’s only giving her ¾ of the oxygen her body needs. (She could die of heart failure at any moment if she doesn’t have this surgery.) It’s a MIRACLE beyond all miracles that Chrissie is alive. There are many possible complications with this surgery, but it is necessary in order to give Chrissie a “normal” life. Right now Chrissie cannot run and play or sing or swim because it takes too much energy and her oxygen sats drop. She is looking forward to being able to be a “real” kid. She talks often about being able to run and not say, “I tired.” What a joy it will be to see our little princess play with her siblings without hesitation or reservation. Jehovah Rapha (The Lord our Healer) is in charge, and we lift our precious daughter up to Him, the Great Physician.
Thank you all for praying!!!
Sunday, February 21, 2010
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15 comments:
I will be thinking of you guys and praying for Chrissie all day tomorrow. That poor sweet girl needs to get her heart fixed so she can run and jump and play! Give her a big hug and kiss from her Reece's Rainbow family, we all love her so much!
-Molly (RR)
I just found your blog. Our family will be praying for you and your Chrissie. Your little one will be safe during the surgery and healed when it is all over.
I found your blog through Shelley and wanted to let you know that our family will be praying for Chrissie tomorrow.
Chrissie and your family will be in my thoughts and prayers tomorrow and over the next couple weeks. God has worked a miracle in her; he will work another one as her heart is made "new". I'm sure of it.
1:45am
Praying that your last couple hours of sleep will be peaceful and restful and that God would grant you "the peace that surpasses all understanding" as he guards your hearts and your minds (Phil.4:6) As I looked at those words I noticed what comes before them;
"The Lord is near." (Phil. 4:4b)
We are praying for you today and I believe God is pointing out that He has already done "immeasurably more than we can imagine" in Chrissie's life (of course she had a manicurist whose niece has heart issues!) - But that promise is for right now, today as well:
"To him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." {Ephesians 3:20-21)
God is near to you, Pattersons, and He is at work. Peace to you all!
Hi Matt and Lorraine, just wanted you to know I'm lifting you and Matt and Chrissie up in prayer. I just know that as you hand her over that you are not handing her over to the "surgeon" per say, but merely handing her over to Heaven's operating room where she'll be greeted by a host of angels surrounding her and that God's hand will actually take over the surgeon's and do all His mighty handiwork! I pray peace, comfort, strength and endurance for all of you. Will be looking for updates. much love, Marc and Tamara Berger
Lorraine, we're praying for you. praying for peace and strength and endurance. Just know a host of angels will greet Chrissie as she enters the operating room (Heaven's operating room) where the Handiwork of God will be performed. Glory to God in the highest.
We are praying for all of you and your family.
Monday, February 22nd, 5:10 a.m. God I pray that your peace would flow over Matt and Lorraine as they prepare to take Chrissie to the hospital. I pray that they would cling to YOU and trust in YOU as their all-powerful Father who is able to give peace that passes all understanding. I pray against the enemy who would want to sow seeds of fear, anxiety, and worry. I pray that Your angels would surround this family and keep any doubting spirits away. I pray for Chrissie to be able to trust her mom and dad. I pray that you would supernaturally give her peace in the midst of a traumtic environment. I pray that you would give Matt and Lorraine and the hospital staff wisdom to know how to best comfort her and ease her into the hospital and pre-op routine. Psalm 66:5 "Come and see what God has done: He is awesome in His deeds toward the children of man." God, You have done awesome things in the lives of this family. I pray that You would once again show Your might power this morning.
Praying for Chrissie today, for your entire family, for the surgeons and entire medical staff. Praying for God to do a mighty miracle in Chrissie's little heart. He is our great Healer. Clinging to Him with you today!
praying for you all this morning... peace, trust, and care.
- Andrea at 6am on Monday
Lorraine and Matt, I am so shocked. I was sitting in front of my computer praying for Chrissie as you all were supposed to be checking into the hospital.I wanted to leave you a message when I finished praying and was looking for your blog when the message came about Chrissie's illness. I'm so thankful that God is watching all this so closely and stopped the surgery so no infection could set in. Isn't He amazing! I know you are probably on an emotional roller coaster, but this just reaffirms how closely He is in control of things right now. His timing is always perfect. I pray that Chrissie's illness is just a bug, and that God will grant you all peace and comfort until the surgery is rescheduled and while you wait on Him. Blessings and peace.
Retha
I just checked caringbridge - so sorry to hear about Chrissie's fever! I have been praying during this past hour. I was just meditating on Paul's shipwreck as he was heading to his trial. Praying for you to hold up as you endure this little "shipwreck" of a fever for Chrissie while she awaits her medical "trial". Rejoicing that none of this is too big or unknown for our Sovereign God's hand!
Praying for you this morning, I remember that scary feeling of handing over my girls and the relief when I heard it was all DONE! Please update as you can, and know many of us in RR are praying for you today!!
This is your RR family, I am praying for her and for you. I will also pray for the nurses and the doctors who will care for her these next few days.
Praying like never before. Love you all!!!
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