I am exhausted and at my emotional limit again today.
Joshua is doing well. He is off the vent- a nice little surprise for us when we got here this morning.
Our path was crossed with an amazing foundation who is going to help us out with some childcare costs. God is providing for our needs at the exact moment that we need it. I've had a few people ask how they can help us financially, and for as much as we could really use it, your money is also needed at foundations like this who have not hesitated to help us. Please go check out their website and if you feel led to donate so they can help families like ours, please do so. It is the least we can do to give back for the generosity and support we have received.
We talked to the doctor briefly today. She told us that the crash yesterday was from the shunt being too big. It will happen again. We will not be going home until we either have a shunt revision or the next stage surgery (The Glenn). They are talking about doing either one in the next few weeks. I'm still dealing with the implications of that information- another open heart surgery very soon, longer time here, continued living out of a suitcase. There are so many questions that I need to ask regarding the surgery. I'm hoping the surgeon will come up again today so I can bombard him. My main concern is if it's safe to do the Glenn on an 8 lb baby.
Like I said earlier, today is another day. I'm thankful for God's provision and that Joshua is still here. I'm trusting in His purpose for his little life. I'm running on the prayers and support of friends and family who are praying for strength. I'm mourning and grieving not being able to come home in the next few days and I'm praying for Joshua to continue growing as we look at the very real possiblity of another surgery so soon. I'm running on empty, but taking it one moment at a time.
14 comments:
I am praying and praying.
God is with you always. He will never waiver or fail you. He is your foundation. He is your grace. He is the love that expounds from you through your caring not only of your son, Joshua, but also your caring for others. God will continue to bless you and Shane and Caleb and Hannah. We love you! The Blackstone Family
Praying hard for Joshua and your family! A heart baby I follow, Caden,had his Glenn at 2.5 months and is doing well. thesmithsbaby.blogspot.com
I am sure his mom would answer any questions for you.
Jennifer
Mommy to Colin HLHS 17 months
I was thinking about this yesterday while I prayed for you: God's timing is so perfect. The crash happened before his G-tube surgery (how would he have fared through that surgery with the shunt complications that they didn't know about?), and while he was still in the hospital where he could have immediate care. I can't pretend to know why God does what He does. But sometimes I think, "Wow, if he was going to crash, You let that happen at the best possible time when You knew he could be saved."
I know that doesn't help the grief and helplessness and the frustration of another month's hospital stay. But I will continue to pray for your family and sweet Joshua!! I believe God is working every single second in your lives (and the lives of others who are reading your story).
Praying for you and your precious family. So many of us know the same road that you travel; the uncertainty, the what-ifs, living out of a suitcase, the desire to be home with your whole family. It sucks.
But don't give up. Fight for him. Fight for your family. I always try & look at others families situations and think, Man, it could be so much worse. Stay positive, stay strong, because your little man needs you to. You will have time to worry later, just not right now. Don't allow the enemy to poke his head in anywhere. When your mind starts wandering about the what ifs, shut it off & start praying. The mind is a powerful thing and right now it will be the hardest to control it.
Praying that the doctors and medical team know the exact course of treatment for Joshua and that he remain free from infection and human error. Praying for rest and peace for mom & dad and that all of their needs are met.
Many blessings!
I can't stop thinking of you guys.. and I'll keep praying for you and thinking of you.
Natalie had her Glenn at 5 months old but needed it sooner. I keep hearing more and more of successful earlier Glenn shunts being done.. I hope you get more answers and that Joshua keeps stable and well.. hugs to you guys!!
I am glad that Joshua is stable now and off of the vent. Saying many prayers for all of you for the coming days ahead. Hang in there!!!
Hi - you don't know me but I started following your blog from a link on another blog. A family acquaintance had a daughter who suffered from Heart Disease as a 3 year old. They set up a foundation in her memory called the claire bear foundation to help families with financial needs during hospital stays. Google it and maybe they can help you too!
Oh, Jill.
Jill.
hugs & prayers. no words at all.
Jill, I am so sorry Joshua has been having so many complications. I can just imagine how frustrating it is when he was doing so well early on. I don't know what it is like to have other children missing me at home while I am at the hospital, but I can only imagine your heartache and how much you miss home and your family. I pray that God sees you through this time and soon it will all be a distant memory and you'll all be home together, safe and sound!
Prayers!
Jen, Craig & Andrew
Oh, Jill!! I wish there were words to say, but there are none. Praying, praying, praying!!
We've been thinking and praying for Joshua and your family all day today! I'm glad to hear he's off the vent (that's huge) and I'm hopeful that the next surgery comes at a time that is good for Joshua. You're doing a great job, don't try to be superwoman...get rest when you can. Wonderful news about the assistance with childcare costs, love hearing about agencies like that!! Sending you many, many prayers and positive thoughts!
Sending tons of hugs and saying prayers for you. Rainy
Praying for Joshua and your family.
Julia Pray, Mommy of Asher, 23 months HLHS
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