Unfortunately there is not much news to report today.
The chest x-ray does look better today than it did yesterday, but his chest tubes put out 130 and 140 mls each yesterday. They generally don't talk about taking them out until he is around 45 mls per day. So it seems we have a way to go. Which is really disappointing because I think that is what is causing him the most pain right now. And the coughing. And when we make him move.
PT came in again today and wanted him to walk. Again he only walked a few steps (maybe 5?) and sat up for a while in a special chair. Then we took him on a wagon ride to see the train. He was in the wagon for about twenty minutes. As soon as we got him back in his bed he fell asleep. He's been asleep for close to two hours. I don't know if it's normal for him to be so weak. Part of it is probably that he's not eating very well either. I don't know if he's eaten anything today. He did drink some hot chocolate.
I'm feeling very frustrated today. These darn chest tubes are really holding us up. Drew keeps saying he wants to go home, and it breaks my heart every time I have to explain why we can't. He's becoming more and more irritated by nurses, RTs, PTs, etc. This is stuff that didn't use to bother him and now he cries and says it hurts. Please pray for his comfort & strength, that he would be motivated to get up a little more, and for fast healing.
We also got a roommate today. I feel I can't really complain because we were lucky enough to be alone for two whole days & nights. But, it is louder and this kid has about six people with him at all times. I hope Drew can still get the rest that he needs.
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!
16 comments:
well-what can i say? i want you guys home too. we'll continue to pray for fast healing and for his little spirit to be content for now. it sounds like you guys are doing what you can to keep him comfortable and occupied. know we love you and think about you tons!
stay strong sister!
love, the adamsons
I'm with Rose... we want you home too. We will also be praying for fast healing and a content spirit for Drew. You guys are doing a great job working with him and gently encouraging him to get more active! Good job Mommy and Daddy!
Amy
Ugh! I can feel your frustration all the way back in Sac. If only we could wave that magic wand... It is such an exercise in patience for you to have to not only endure this yourself, but to have enough strength for Drew to "borrow" from you when he's overwhelmed. Being tied to a hospital bed is just so counter-intuitive for a 4 year old. It just doesn't make sense to him, no matter how much you try and explain. All he knows is that he wants to be home and for some strange reason, you won't take him there, darn it! If only he understood how much you want to be there too. We're praying that you continue to have the endurance to "run the race" before you. We love you guys!
Kristen
Hang in there guys! He has come along way! Just hang on to that if anything. We will be praying that he eats and for patience for all of you!
Ditto to what everyone else said. I am so sorry that today is a frustrating day. We will pray for those chest tubes to come out for for Drew's little spirit. Love you all!!
We're praying especially for rest and strength for Drew and for you guys too. Thanks for keeping us up to speed...and hang in there.
Much love, Laurie
I am so sorry your feeling so frustrated. I hate spending that much time in the hospital. I'm sure Drew is just fed up with everything and everyone. I'm always praying for you guys.
There are so many emotions in your posting and in our hearts as we read what you report. We trust God's hands are carrying you with His love and tender attention to all your needs even when the disappointments are heart wrenching. Those of us watching can see the "waves" of the storm you are in. We're praying for you to be able to keep focused on Jesus so that you may be able to continue to walk on the water of this challenge. It is harder than we can imagine. But, our God is big enough even for this. May Drew be comforted, may his spirits be encouraged and may our God hold your eyes with His. We love you and hold you in our prayers. Thanks for sharing your journey with us. We're very proud of each of you!
Andrea,
We are thinking of you and praying for yiu as you continue to battle with Drew's recovery. I will pray for God's light to shine on you and through you to Drew and to his roommate (& family). You are an amazing mother! God will give you strength to endure each moment. He will renew you each morning. Find rest and be still before Him. Much love and many prayers from Ohio!
Anna
Still praying.....
Sorry Andrea, I know those chest tubes are bugging Drew and you too. I'll be praying for no more drainage.
Wish I could do more...
I know it seems like it will never end, but soon enough Drew will be back home in no time. I know what you mean about the roommates.. it's not ok when there are sooo many people at once. We had the same problem, and i finally complained. Hang in there, and I might see you Monday! I hope it is ok if we stop by.
Love,
Kira
I'm sorry that things are moving so slowly. I can't really say much other than to agree with everyone else and let you know that I'm still praying...
-Jennifer
What a waiting game this is! It doesn't seem quick right now but just think of how well Drew is doing and that you will be home soon. They can't keep you there forever (THank goodness). I need my friend Andrea back please!
I will come and see you soon. Just keep your head up. Your doing great!
I miss you, especially in my kickboxing class. I need you to shake it to J.T. with me.
"But those who wait on the Lord Shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint" Isaiah 40:31
I pray that you and Dan will not be weary and will find all the strength you need to get through this!
Love ya!
Jen
Oh...Mr. DREW!!! I hope those chest tubes can come out soon...I would have thought they would be out by now too...where's all that fluid coming from???
You know...if your roommates don't be quiet and have too many people...you just tell your nurse and they'll kick some out!!! OR..YOU guys can start making crazy noises and they'll get the picture!
Just send someone to go and get everyone ear plugs! I hope Drew starts eating soon...what in the world do they do with older kids like him?? Do they ever tell them tell stick the ng tube up their nose?? (gosh...i've never thought about it). HEY...have you seen a nurse named Melissa? Ask for her and tell her the Vegas Rollers send their LOVE!!!
I'm glad that Drew liked his goodies! I told you...I've got connections at that place! (and about 2 people that don't like me too much...but, many more that do!)
Here's a BIG HUG headed your way!!!
Love,
Kathy
We are praying for Drew too...He has been a real trooper and is on the home stretch.
Love the Balands
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