I woke up at 5:45 again and called to check on Drew. The nurse said his night was "not bad." No changes really, still breaking through from time to time, but he also had a fever. The tylenol study is over, so he's not getting it intravenously anymore, but they did give him an oral dose through his ng tube. They are probably going to do a bronchoscopy today to try and see what the problem is with his left lung. They can also use that to suck up fluid or clots that they might find, so it might help him.
We got here at 7:30 and the new nurse, Jessica, was suctioning him. He's coughing a lot, even though he's not really waking up and it looks very uncomfortable. He also can't make any sound with the tube down his throat so it looks sort of like silent convulsing. They gave him more fentanyl and versed because he just couldn't get comfortable. And his fever spiked to 102.5 despite the tylenol so now he's on a cooling blanket. The nurse said his x-ray doesn't look very good, so I doubt there will be talk of extubating today.
I feel so weak today. I felt that way even before we got here. This is taking longer than I anticipated. It's frustrating. And they always make it sound like extubation is just around the corner. If they said it will be 3-4 days from the beginning it wouldn't be so hard to handle. I hate to see him uncomfortable and I know the coughing is painful. I haven't even been here an hour and I've had to step out of his room twice to have a good cry. I guess I was due.
So please pray for the fever to go down, for no infection, for the fluid in his lung to disappear, and for his comfort. I've been picturing him in the arms of Jesus while he's unconscious and keep asking Him to return Drew to me when he's ready. Please pray for my strength, I feel like a crazy person today.
Drew
Drew is a happy 7-year-old who loves his family, his friends, and everything Star Wars! He was born with a CHD, specifically interrupted aortic arch, VSD, hypoplastic aortic root and DiGeorge Syndrome. He has had three open-heart surgeries, the most recent was in May 2008 at Stanford. He is so strong and brave and we are very proud of him.
Ava
Ava is a spirited 5-year-old girl. She loves her family, friends and climbing, jumping and dancing. She brings us a lot of joy and a lot of drama! She is heart healthy. We love to see all the adventures she has!
This is how Drew's heart is now!
One and a half ventricle repair 1) VSD closed with a patch 2) Conduit from right ventricle to pulmonary artery . Drew still has the SVC connected to the PA in the upper left. Thank you Dr. Hanley and Dr. Mainwaring!
35 comments:
I'm praying right now! Thank you for your vulnerability with us all. It helps so much to know exactly how to pray. Love you!
Kristen
You are SOOOO strong and courageous!!!! I admire you! Thank you for your honesty we are praying for you and the specific requests! Big hugs tou you!
The Sheridans
LG girls are on our way to wrap our arms around you, Andrea. Just stay focused on your verses of courage and strength.
From the mouth of Eben, "Drew's going to be o.k. but it's o.k. to be sad." It's hard to see Drew look like he does right now. Tears are good therapy. I'm glad your having a few good cries. Sometimes you just need to let it all out.
You and Dan are still the bravest and most courageous people I know!
I can't wait to see you!
Love,
Jen
It looks like you will have some support driving from Sac today.
The waiting game is so hard but remember Drew just had major surgery done less then 72 hours ago. Stanford tends to be more conservative when extubating, they want to make sure it is time.
xoxoxoxoxo
"...the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express." Romans 8:26
The Lord is always with you and through the Holy Spirit, knows what you need even before you ask. You show amazing strength, even in this time of weakness.
For strength, read Psalm 91, one of my favorites
I'm going to come up on Tuesday, after I'm done teaching. Maybe I can help with Ava? I'll call tomorrow...love you
When your spirit is weary, God holds you in His arms just as He is holding Drew. So when you feel like you can't do any more, just imagine that God is beside you with His arms wrapped around you holding you tight telling you how much He cares. I'll be praying for your specific needs today! We love you guys!
Amy
Andrea: thank you for your honesty and transparency right now -- we can pray specifically for your resting in the Lord and that you will be lifted up and find rest in Him: "Come to me all who are weak and I will give you rest."
God bless you, dear sis, as you entrust your precious Drew to the Lord for Drew's comfort and for your own.
I love you, Lori
praying for Drew to heal that the scope gives the doctors answers and for your continued strength your doing a wonderful job of loving him and caring for him as you always do we are holding you in our thoughts and prayers~ wyndi steven and Izzy
My heart goes out you to you. Even though we don't know each other(I get your updates through Valerie B)my family has been praying a couple times a day for yours. I have even asked my mother-in-law's church to pray for all of you. Drew has the best surgeons, I am very familiar with Mainwaring and Hanley and they are outstanding, as is the staff at Lucile Packard plus you have your faith in God. From reading your posts it is easy to see that you both are very loving parents and Drew is a happy child. All this gives Drew all that he needs to pull through. As for crying, when Mya and Arianna both had to have open-heart within two weeks of each other in June 2006, I think I cried every day the whole month. It's hard and believe me, your posts and pictures touch me because they bring back so many memories. I don't know how much of the staff you are familiar with at the hospital but there is a Social Worker their named Heidi Scharrenberger and she was always a comfort to talk to when the girls' were there. I know she is still there as I saw her at the Reunion back in February. Sorry to be so long winded but just wanted to share with you. I'll keep praying and checking back for updates. Take care.
Lynne B.
Andrea, it's Karen Russell, J.T.'s mom from support group. I've been out of touch but just read your updates. My heart aches for you!! J.T.'s Glenn feels like yesterday. I remember the emotional overload, exhaustion, and frustrations. You are an amazing woman with God-given strength. I am so encouraged to hear that you're meditating on Jesus' promises and listening to worship music. That's how I got through J.T.'s recovery. Our heart babies are survivors, yet we as their mommies are also survivors (Daddies too)!! Drew and your family are in my prayers!
You're doing great Andrea, and so is Drew!
The ups and downs of the PICU are the worst. It's so hard to take the long view when things go up and down so much. I'll be praying for clear lungs and no fever.
FYI, as scary as a collapsed lung sounds, a doctor once told me that any fluid in the lungs is referred to as a "collapsed" lung. He said they're phasing that phrasing out because it tends to scare parents.
You totally deserve a nice cry. It also feels good to yell at the nurses occasionally, but it sounds like they're doing such a good job you might not get a chance to.
Praying for you guys and sending my love across the miles...
Ditto to what everyone has said. It has only been 3 days since he had his life-altering surgery! I wish I could be there right now. 8 more teaching days, and then you might have to put up with me in person. If you didn't cry, then you wouldn't be normal. He's doing great, and so are you.
I read this this morning while praying for you
"Come to me all you who are weary and burdened and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. for my yoke is easy and my burden is light"
Matthew 11:28-30
I love you guys
Kristina
Dear Andrea and Dan,
This is Meredith's Mom. Meredith sent me your blog to keep track of Drew since Meredith and Kevin are unable to read the blog for a few days.
Please know we are praying for Drew and your family here in Dallas. Yesterday, I lit a candle for Drew and I am including him in my novena. Tomorrow, I will write Drew's name in the prayer book at church when I visit the Blessed Sacrament.
Our thoughts and prayers are with Drew and your family.
Our love,
Cindy and Barry Hampson
i'm praying for all of you. you are strong, and so is drew. focus on your scriptures of encouragement and strength, and NEVER feel bad about having a good cry every now and again.
Sounds like you have some good support from the nurses and RTs. Praise God for that.
I pray you are able to feel a moment of peace today in the midst of a tiresome fight. I have asked some of my fellow nursing students to pray for you too!
Kym
It was once explained to me from a team of doctors that the healing process is two steps forward and on backward so have faith and know these things:
You have a world class team of nurses and doctors.
You have a wonderful support network that cares for you dearly.
You have the love and strength of God to help you through the valleys and triumph with you in the peaks.
You are a strong woman...(and crying isn't weakness, but rather an expression of emotion.)
Drew is in good hands and has the most amazingly strong mother (and father).
You have many Blessings...count them and put the rest in the hands of the Lord. He can do amazing things.
Carrie
i'm glad that the LG ladies are going to be down there with you today, to help you feel supported, and maybe take your mind away from all of this just a little bit. and i'm sorry things feel so up-in-the-air today. oh, there are no words. just know that you ARE strong, even when you feel weak, and it's a very good thing to step out and cry once in a while! love love love.
Andrea:
Your words break my heart! I know that it doesn't make you feel any better, but I know how you are feeling! I will pray for your strength (and Dan's, too!) although I think you have more than you know!!
Love,
The Hasty Family
Hey Crazy mama...don't worry...we all feel crazy when we're waiting for our angels to wake up!
I wish Drew was extubated already...but, they're taking such good care of him. The dieuetics will help clear that lung up (that always happens to Isaac..and it always collapses). It's so frustrating not knowing how long they will be in the hospital.
BUT...the one thing that helps get me through this time is knowing that he's sedated. His body is healing while his lungs are catching up. Hold onto that positive thought...he's not feeling any pain right now...he's healing. By the time we got Isaac off the vent last hospital stay, all the chest tubes and art lines were pulled. He was ready to go home soon after the vent came out. PLEASE focus on the positive...it's the only way to stay SANE right now. You have the best doctors and nurses in the WORLD taking care of your angel...he WILL be fine...his lungs just need time to catch up. (that's exactly what was wrong with Isaac last time)....
Drew is such a fighter....you are such a fighter...now, put on that cheerleading uniform and do a cheer for your baby doll!!!
We love you Andrea...
and know that our thoughts and prayers are with you!
Kathy
Andrea and Dan-
Keeping Drew in our thoughts and prayers. I remember how helpless you feel when you can't communicate with your precious little one. (Now we often wish Riley would STOP talking). Hoping he is extubated soon.
Love, The Thompsons
I have just sent a prayer request to my "Mother's Together" group at MPPC. I will continue to pray for a quick and full recovery for Drew and for strength and comfort for your family throughout these difficult days.
Love,
Christa Olson
Praying that you find comfort in knowing that God is with you, right here, right now. My thoughts,love,and prayers are with you and your precious family. ~ Laura Mulder
D & A:
Remember to take care of yourselves! Take a deep breath and get a break if you can. Go out to eat, to the ocean ...something relaxing and remember with confidence that you are in the best place you can be ! Take your cell and tell them what your up to. Drew is in excellant hands and will continue to be very very well cared for. You need to be in good shape yourselves for when they let him lighten up. When you are at the bedside continually and start to get worn down, even little things will look larger than they are.
Coughing is a marvelous thing--may look painful, but is incredibly efficient for the lungs' health. Just being on bypass causes so many changes the body needs to deal with over time, one of which results in fever. They are looking for infection and will treat it. I'm sure he is being treated with a just in case antibiotic anyway. You can take comfort in the fact that he will not remember any of this!!! Guarantee.
What Dr's H & M did in that OR is literally a miracle! Nothing should simplify that fact and to compare it to any other child's recovery or timing would be silly. Drew will do his special recovery on his (!) time schedule and no one will rush it. It will take time for his body to get used to new flows. A "complication" or a delay --or even a few-- should be expected. You are surrounded by confident, competant people just because of this. They WILL deal with literally everything!
Keep caring for yourselves. Prepare for a long haul and hope for a short one. Setting specific timings on things will be frustrating. I call them 'hopes'--if they happen great, if not, they will soon. Don't focus on How Long he remains intubated, it isn't really important. He will be for as long as he needs to be, and not a second longer.
As always you are in our family's thoughts and prayers! Feel free to pick up that phone and give either Val or I a call Any time day or night. We are here for you. Even this ol' heart nurse sees nothing unusual with where you are. clb
Hi Andrea and Dan,
You are going through such a difficult time right now, but you are doing great and being wonderful for Drew, giving him the love and support that he needs for his recovery. The ups and downs of recovery are heartbreaking and exhausting, keep your faith. I remember two years ago on this same weekend, when Drew and Vaughn were roommates at UCD and we were both so anxious to go home. You and your family will continue in our thoughts and prayers.
Love,
Rebecca
hiya! i love the wisdom that comes from your fellow heart families. they've been there and done that and have more insight than those of us who haven't. i'm thankful for them and the encouragement they give your family. i'm really looking forward to seeing you tomorrow and i have some great ideas of things to take your mind off of that hospital and your immediate circumstances. a little R&R if you will :)plus a little fun because that's what i do best! haha! i love you dearly and can't wait to give you a big squeeze. know you are loved and cared for. not only by all of us but by your Heavenly Father who loves you, drew and your whole family more than all of us combined!
see ya soon...
rose
You are being held tight in God's hands... all of you. God promises that if you hold tight to His promises, He will bring you through. Jesus is holding Drew... I'm confident of it. It's okay to cry, and it's okay that you are feeling weak. God has strong shoulders.
With TONS of prayers and love,
Taria
Andrea-
I wish I could be there to give you a great big hug!!
You are a GREAT momma, and I would expect you to cry!
I am so proud of you for keeping your eyes on JESUS.
We're still praying!
Love, Beth
Continue to think on the positive. I think is wonderful that Drew cannot feel the pain and hopefully he will have all, or most, of the tubes out before he wakes up. I remember having to sedate Arianna for every tubes, pacer wires, etc. when they needed to be removed. It was much more painful that way I'm sure. Drew can rest and his lungs can take a break while their taking a beating.
It's natural to cry and you need to do it from time to time. Seems like you have a wonderful support system and that is most important. I'll be praying the bronch goes well and you get a good report. At least they will get a good cleaning of his lungs. Take care and get some rest.
Love ya,
Vanessa
Andrea & Dan: It's Meredith's Mother-in-Law, Lillian. Please know that Drew is truly in my daily thoughts and that I am praying for you all during this difficult time. God Bless you and your Little Guy.
Big hugs to you Andrea. I know that this is hard.
Heart Hugs,
Samantha
You don't know me and I honestly can't remember how I found your blog. I have been following closely as I am anticipating my own daughter's open heart surgery. You are an inspiration. I am a believer as well and am holding your beautiful family up in prayer.
I absolutely love that you are open and honest with your feelings because it helps us all. We are stronger than we think, and I feel you know you are strong, however we can't be strong ALL the time. Especially when we are helpless in making things better for our children. Just remember that Drew won't remember this and that he WILL be better in the long run after this amazing surgery and it will be worth it then. Hard to see at this point, but it will be...eventually. Of course you and your family are in my prayers. Keep crying when you need to. Shelly and Faith
Dre- we are just back from vacation but wanted to let you know your family were in our thoughts and hearts all weekend! Hope Drew can come home soon and we are praying for you all. God bless you for being so strong!!! You have no idea what an inspiration you are to everyone. We love you!
-Mer, Kevin, and Brendan
Andrea & Dan,
What a blessing to be surrounded by family and to have the support of so many friends. I have prayed for you, Drew & Ava several times since receiving Christa Olson's e-mail (to the MPPC Mothers Together Yahoogroup). I'm so glad that she shared your blog URL so I can see your precious boy's face. Here's a favorite quote: "Tears are the safety valve to the heart when too much pressure is laid upon it.
You are, in His grip,
Angelyn Knab
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