From what I've been told there could be 3 possible causes to his seizures.
1. Meningitis- they did a spinal tap. Results will be back tonight. I'm highly doubting it will be meningitis.
2. Withdrawl- since he was on some major doses of heavy duty drugs yesteday and into this morning to keep him from pulling the vent out of his mouth, there is a small possibility that he could just be going through withdrawl. they gave him a breakthrough dose of morphine and another dose of methedone. So far, since he was given both, he has not had another seizure. I'm earnestly praying that this is the cause of the seizures.
3. Brain damage- there is a chance that when Joshua crashed on Monday, that his brain was deprived of oxygen. They are going to schedule an MRI first thing in the morning to check for brain damage. Hopefully we will have those results back by the end of the day tomorrow. Of course, brain damage is permenant.
I haven't had time to udpate also about our newest plan of care for Joshua. His surgeon is NOT at all happy with his O2 sats being as high as they are. For right now, they are not going to allow Joshua to have any PO feeds (feeds by mouth). They are going to "fatten him up" and get him ready for the Glenn (the 2nd stage surgery that was supposed to happen in February). They want to do the Glenn in the next 2-3 weeks. They are going to put him on breastmilk fortified with a formula that is already pre-digested so he doesn't even have to use calories to digest his food. We need him to grow as much as possible in the next few weeks. The G-tube has been cancelled until after his next open heart surgery.
I am literally hanging on by a thread at this point. I feel like every last ounce of sanity has been sucked out of me and I'm going crazy. I'm so exhausted that I feel like I'm living in some sort of crazy dream and that I'm going to wake up soon and it's going to be Monday morning and Joshua is going to go in for his G-tube and that we will be home in a week.
I've become paranoid of every cry, every movement, every twitch. I panic at every alarm that goes off, and every doctor that walks in the room. I'm in an ugly place mentally, emotionally, and physically. I don't know how to pray other than begging for the Holy Spirit to intercede on my behalf. I pray over and cry over Joshua every time I hold him.
Right now, I'm going to try to get some sleep. I'm sure it won't be long before another nightmare comes and interrupts my slumber and I awake to panic.
I will update as I know more. I truly appreciate your prayers. You are carrying my burden and I truly believe that is how I am still somewhat functioning and how Joshua is still here with us. Thank you.
16 comments:
definitely constantly praying for sweet little joshua. don't know what else to say but that i think of you and joshua continuously throughout the day.
God, please show Joshua, Jill & Shane your mercy.
Jill-
I've been waiting all day, prayerfully, for an update. I'm praying you can get some rest tonight. You are doing all you can, and then some, but I know your mama's heart feels that you could be doing more. I'm thankful you have Jesus to help lead you thru this. You may feel like you are meandering, but He is guiding your every step.
I am always asking Him why our babies and children have to go thru things like this. When I get the answer, I'll let you know- but I'm sure it's way beyond the scope of our finite minds.
I wish I could do something other than pray. I wish I could come to the hospital and...well, just be there, so you'd know for sure you have another in your corner.
Kiss that little man for me & tell him there are lots of people praying for him!!!!
I continue to think of sweet Joshua and your family throughout my day...and will continue to keep up the prayers. I'm SO sorry that you all are going through this, Jill...it's just not fair. You are an amazing mom and Joshua is one lucky little boy to have you!
Dear Lord,
It's 4am and Jill needs some sleep. Please give her good, restful sleep tonight. Keep the nightmares away from her. You are not the creator of fear so may you send your angels to protect her thoughts and heart.
Hold Joshua in your hands. Please use his little life for your glory and may those around his family right now see Your work in their lives.
Thank you for being in control when we are not. Help us to see that You are Good...all the time.
In Jesus' name.
Lord,
Please put a hedge of protection around Joshua. Keep him safe until his next surgery. I pray that the fortified milk will help him to gain the weight he needs to be able to sustain the Glenn. Lord, Joshua is in your hands. I also lift up Jill to you tonight-give her comfort and peace during this awful time. Please help her to rest, without nightmares, so she is alert and ready to care for her precious son.
Thank you for being a loving and merciful God-please show your mercy to Jill and Joshua.
Amen.
Shannan
Jill, how blessed you are that God has chosen your son to perform a great work for His glory! When things seem impossible, that's when He does his best work. Hold on just a little while longer. A miracle is coming. Don't doubt for a moment that God can and will do what He's promised. "I will not take this from you, but it will be manageable." Hundreds of people will come to know the Lord because of your son. It's hard to comprehend right now with all the pain and anxiety you're feeling, but you are and will be blessed!
I am keeping you and Joshua in my thoughts and prayers and hope that he becomes strong enough to have the glenn sooner than first thought. I understand all that you mentioned above, and hope that your mind lets you rest a little.From one heart mom to another. Hugs~~~~
( I hope you dont mind I added a link Joshua's page to my sons heart page asking for prayers and good vibes and thoughts whatever people are willing to send.. )
here is the link
http://huininkfamily.blogspot.com/
Jill,
{{{{HUG}}}} I am so sorry that Joshua is now having seizures. Logan had them following his first surgery and they developed later on in his recovery just like Joshua's have. His were focal seizures....appeared with twitching in his right hand. He would curl it up and begin twitching it while he remained very still. It was incredibly scary and I can definitely relate to what you are going through. They did a CT Scan on Logan and determined that his were a complication from being on bypass. There was no brain damage detected in the scan so they said that whatever damage he had must have been so minuscule that it wasn't showing up. They placed him on phenobarb and he immediately stopped having them. He was on it for three months and he has remained seizure free ever since. There is an increased risk each and every time he is placed on bypass of having seizures again but fortunately for us he hasn't.
The reason I am telling you this is so you don't lose hope and think the absolute worst. I know it is hard when you are going through something like this and your anxiety is at an all time high.
I am saying so many prayers for you that it will be a simple problem with an easy solution. Hang in there Jill!! I've been there and trust me....there is a light at the end of this tunnel.
E-mail me if you need to chat. jacks_rswl(at)mepotelco(dot)net
Jill-
I am so sorry your having to deal with so much...it seems like everyday it gets harder and harder. I look at you blog several times a day for updates because our days are numbered. We only have 12 more days until Jordan will be here and we will be facing the same battles. Your strength is amazing and I know somedays it takes all you can do to keep fighting. Joshua is so lucky to have an awesome mom like you! Y'all are constantly in our thoughts and prayers! Hoping today will be a better day for both of you!
I remember when the only prayer I could muster was "Please. Help." and that was sufficient. May the prayers of many lift you, hold you, sustain and comfort you. May God guide the doctors in deciding the best plan of care and give you peace with this plan. Hold fast - miracles happen - and know that anything is possible.
My daughter had seizures at 2 months (during post-op) that stopped her heart. She is a thriving, adjusted, "typically" developed nine-year old today. The final outcome is up to God, no matter what the doctors predict.
melissa
Jill, Over the past many days, I have read each update and blog. I haven't "said" anything or commented, only because there simply aren't words to say. All I have been able to do is to pray that God will continue to fill you with His peace, strength and comfort.
I cannot imagine the agony, fear and total helplessness you must be feeling, knowing you are not the one in control. God is the ONLY One who knows the outcome of your story. He is writing this story of Joshua and He is Central to its outcome.
I have been blessed beyond words at your strength through it all. You and Shane have shown the love of Jesus and His grace through all of this and someday, if not already, you will be a part of another's story. I believe many will come to Jesus because you have been their witness in times of deepest trouble. God has seen fit to use you in ways you didn't think were possible. Inspite of what the Drs. and nurses have said about, "it was the medicine we gave Joshua that pulled him through", we ALL know it is JESUS that has heard our prayers and our cries to Him.
Hang in there you two. God is working in His realm and not ours. Prayers will continue to go up on your behalf from here. Know that you are loved and God is working.
Blessings ~ Cindy S.
Jill, my heart is breaking for Joshua, you, and your family that you have to endure this. Every time I see the scar on my little heart baby, I use it as a reminder to send up a prayer for healing for your family. Please know you are surrounded by love and prayer.
Oh no, not the news I wanted to read and not what I wanted for you and your family and little Joshua. So sad, but I pray they find out his seizures are being caused by the lack of medicine he was being taken off of. No words can help right now as you go through this, aside from knowing you have a lot of people praying for you and I am praying right now that the Lord will intervene and make Joshua well and get through all he has to face in the coming days, weeks, months & years. God bless you all, I do not know how you do it and I cannot imagine having to walk in your shoes right now. I hope you can rest and you do not awake to panic. I pray for that for you. Take care.
Jill-
I don't know what to say except that my husband and I are sending you all the positive energy we can spare. This is certainly no consolation to you but we want you to know that we are hopeful for little Joshua. Though I have never met you, I wish I could hug you or hold your hand or wipe away your tears. Our heart babies are so special... heart mommies are too. I dont want you to forget that you are special and strong and a DAMN great mother.
I wish I could do something to ease your pain and to help Joshua.
Hugs, Hugs, HUGS-
Heather, Michael, and Sydney Malcolm
I wish there were more I could do or say for you, but I am continuing to pray. I think of you so often, and I share your story, asking for prayers.
You are all so loved. Praying for mercy and grace for your family. Love you.
praying for joshua and your family. Jayden had seizures after his first surgery and they put him on phenob and also done his glenn two. He is still on phenob but he has not had no seizures. praying very hard for joshua and family
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