Sunday, September 14, 2008

A long road, maybe HOME.

Oh my dear Drew... my heart aches for you. I don't think I can get through this post without crying but fortunately there is a box of Kleenex handy. I don't even know where to begin, except to say that we covet every prayer possible for our little Drew. He is so close to God's domain now that I don't know if I am helping anymore, I just pray he is comfortable in God's hands right now.
We went to the ER a week and a half ago with Drew seizing strongly and having problems breathing. At first they didn't know if it was pneumonia, an asthma attack, or choking due to his seizing. He had stopped eating a couple days before, and looking back, I wonder if he was having a hard time swallowing things and knew he shouldn't be eating. We were admitted that Wednesday and they watched him for two days. We were sent home Friday at 3:00. We had been home not 1/2 hour when he had another incident and we were back to the ER by 5:00 with Drew having severe breathing difficulties. I am sure it was due to his seizures - when seizing he couldn't swallow his spit and then after the seizure (one of his stronger, intermittent ones) he would start choking, maybe due to weakness of the muscles that could help him swallow. We gave him a new emergency that night that seemed to have worked really well and we were home by 9:30 p.m. We had a new plan for home too now since that new medication worked.
Over the last couple weeks we had to treat Drew for some stronger seizures but the emergency med we were using was also one of his maintenance seizure meds so the levels in his body were getting way too high. One of the side effects of that med is that it could depress his breathing due to sluggishness so we were trying to wean him off of that a bit as that could have contributed to the problems and now we had a new medication we could try to use at home instead of that one. The only thing about the new one was that we could only use that one twice a week tops as well so it wouldn't get too high and again, possibly depress his breathing. So, the plan a week and a half ago was to only use that one if he got unresponsive or started having problems breathing due to seizures. We made it to Monday before we were back to the ER with severe breathing difficulties and an unresponsive Drew. Mid-day Monday he was doing better after the emergency med but we noticed he had problems so did a culture and found he had a urinary tract infection. We thought maybe we had something easy to deal with and could get out quickly!!! No. We were looking ok, but Wednesday he seemed to have some other symptoms and some more breathing issues so we were examined further and were to stay a bit longer. Wednesday night we nearly had a Code Blue - there were people running everywhere trying to get Drew breathing ok and to get his seizures controlled. (We also had a bad seizure session Tuesday night.) He was ok after that on oxygen, but becoming less responsive. Friday he was even less responsive, gurgling in his breathing, and really working to keep his airway open, all while seizing still. Poor guy. And still not complaining. Friday night they sent us to the ICU for airway support.
I think Friday was the hardest day of our lives to this point - we had a meeting with all of Drew's doctors and nurses. They wanted to know where we stood on how we wanted to support Drew if he took a turn for the worse from this point, and to make sure we understood the seriousness of his condition (even though we don't have a name for it yet!!!). So surreal. Our Drew. Here. Now. Too soon. Why? Just trust.
Anyway, we are still here in ICU, not sure which direction he will go next. He is relatively stable right now thankfully so that is good I guess. He is doing a little bit better today than he had been over the last 36 hours. He was unresponsive yesterday but this morning he started crying again. Just a little, but showing emotion nonetheless. I think he may have actually tried to smile but started seizing because of it. Any exertion right now seems to start a seizure. He is breathing with just a little oxygen, lots less than yesterday. He is keeping his airway open better and is rattling in his breathing a little less. He has a low grade fever sometimes, but low grade is alright for now. He has been tested for pneumonia but doesn't seem to have it - they will do a follow-up x-ray on Monday morning. He has some strange things going on still for some reason that they can't understand though - he is still fairly unresponsive, looking through us rather than at us. He can't sleep for longer than an hour or two at a time. He is flush on only one side of his body, (the same side that was sweating before). He is also retaining water on that side of his body. He still can't swallow so they are drying his secretions with medication which is helping with the choking, but also seems to be affecting his ability to pee possibly - he has to have a catheter inserted every 6 hours (sorry for the additional information but getting it out seems to be therapeutic). As he is doing alright breathing, we are probably going to be released up to the general wards tomorrow morning if he continues to be ok.
On a positive note, we have had one of the best nurses Drew's had yet over the last two days - what a lifesaver. We also have had two of the dearest nurses from the unit upstairs come by to visit - incredible ladies. We have been blessed with some of the most wonderful, caring nurses during this experience. These people have made a huge difference and I don't know how they can do the job they do, but man am I glad they do.
We are surviving as a family right now - challenging time, but life seems to carry on. Our families are here with us which is providing so much support. It is very difficult to talk to many others right now, it just hurts too much and seems like time I would rather spend focusing on Drew. Selfish perhaps, but when faced with the idea of losing Drew possibly in the near future, there is nothing I want to do more than to be with him, holding him, helping him, comforting him, just being there to listen to him breath, and to be close to him. Jordan is amazing - I couldn't ask for a better father for our kids, or a better husband. I have never seen him hurt so much though. I am glad to have him alongside through this challenge. We will make it through with God alongside, but I pray He gives Drew peace. It is so trying to watch him seizing all the time and struggling to breath. I have tried to kiss it better to no avail. I miss my little Drew so much, and I don't want him to suffer. Please pray for him, that God will fix him - either by taking him home, or by making him better. I just don't want him to suffer.
Deep breath. We are hoping Drew may still come through this - there is a chance. He started a new diet last week called the ketogenic diet. We are hoping it could help with seizure control. Also, if we could work his meds out alright maybe he would be able to support his airway better. Maybe this is all just related to a urinary tract infection and the seizures (and too many meds on board to try to control the seizures). The diet is one of the last ideas they have for seizure control for Drew so we really would love to see it work. There is a chance however that something underlying is causing all these complications, with the breathing, weakness, loss of muscle tone, etc. I think the docs wish they knew as much as we do! Drew has made a huge impact on all those around him - his little personality is so amazing. He must just be part angel! Anyway, he is very fragile right now and we are trying to enjoy every minute with him. We love our little Drew more than we knew was possible. We love all of you too, and thank you for your prayers. Please continue to support us in this way!!!

I will try to keep you all posted, but as mentioned, I have a terrible time trying to pull myself away for long! The family finally kicked Jordan and I out of the room last night for some sleep (the first longer bit in at least 3 days... why would we need sleep?) but that felt like much too long of a time apart from Drew! As such, I will sign off now so I can go get another Drew fix, but we love you all.

37 comments:

B said...

thank you Kari, for posting this and keeping us updated...I can't imagine how hard it was for you to write this down. your family is always in my prayers...

Kevin and Laura said...

Love you so much. I hurt for you in ways that words cannot express. Lavish that baby with extra hugs and kisses just for me please. I wish I could be there so badly to hug you and cry with you, it hurts to be so far away.

erinlo said...

Kari- Thank you so so much for taking the time to update. My heart aches. We don't know what to say or what to do so please know that you are covered in prayer by SO many- we are only one of the many. My children pray nightly for Drew. I love that Drew. He has impacted me greatly. But perhaps what has impacted me even more is his mama and daddy and the way in which they have held on to Drew and Peyton, held on to eachother, and held on to the Lord. Love you guys. -Erin

Erin said...

Hi Kari
I am a friend of Laura's and she shared Drew's story with me early on and told me about your blog. Reading your story just makes my heart ache for you and your precious little baby. I just want you to know that I am lifting Drew up in prayer. I also pray for you and Jordan that God renews your strength every day.

Tiffany said...

I am a friend of Kevin and Laura's. Just want you to know that I have been praying for your family through all of this. I will continue to do so.

Abbie said...

We are praying and praying for you. I really hope that you feel the Lord's closeness and his love for you and your sweet Drew. More people are praying for you than you know.
Jarud, Abbie and Luke Griffith

Greg Ashby said...

My heart aches for him too Kari... and for you, Jordan, Peyton and your families. We keep on praying for Drew and you guys. I only wish there was more we could do, but I know that's the most important. Thanks for the update. Love you guys...

Davis Family said...

Oh! May God bless you with peace and build you up daily. We are praying for Drew.
Love Roberta & family

Aisling said...

Kari & Jordan; you have had unbelievable strength through all of this and we thank you so much for keeping us updated. We love you guys so much and we hope and pray for continued strength and peace for you, Peyton and precious Drew. You are never out of our thoughts and prayers. Love you.

Aisling, Steve, Keegan, Josh & Connolly

Penny said...

I am Laura's Aunt Penny. We met at Laura and Kevin's wedding. You have been in our prayers. I can't imagine how hard it is for you two. I pray that God will give you strength and be with little Drew in a way that only he knows how.

Leslie said...

I have been reading your blog since you started it a while back and have been praying for Drew. You and Jordan have courage and strength that I am not sure I would have in your position. I will continue to pray for family and for Drew to find peace in one form or another.

Lezlie said...

Jordan and Kari, your family and especially little Drew are in our prayers.

Scott and Lezlie Bradford

Sarah P said...

Kari, Laura keeps me posted on Drew. There's a bunch of people concerned and praying for him here in FW. Just wanted you to know that.

Texas Staples said...

Father God, how marvelous are Your works. You are the Great Physician. We know that You have it in Your power to completely heal little Drew. We pray, if that is Your will, let it be done so he is no longer in pain. We ask for Your mercy on this precious child. He has been through so much in his short life. We pray for Jordan & Kari, Father. Continue to shower them with Your love and strength. They are such an awesome witness to the medical staff and their family and friends. We love this family and we lift them up to You now. Amen

We love you guys - Mary & Randy

gaines496 said...

Jordan and Kari - we know your cousin Randy in Little Elm, TX. We are praying for Baby Drew. Praying that God would touch him with his healing hand and take away the seizures or reveal to the doctors what they need to do to cure Drew. We know that he in the hands of the Almighty God. Continue to trust Him and lean on Him. He's the only One who change this situation. We will continue to pray for you all - for your strength and peace and encouragement. We love you and will be praying with you.

April Jackson said...

I am a friend and neighbor of Kevin and Laura. My heart hurts for you so much.I am praying and thinking of Drew a lot.

Melissa said...

I got to your blog through a link on Kevin and Laura's blog. I just wanted to let you know that Drew and the rest of your family is on my heart and in my prayers.

Kerrie said...

Oh Kari. You and your family's strength are amazing and we are praying for little Drew and all of you. Be selfish, Kari - shower your little one with kisses and hugs and know that our thoughts and prayers are with you.
Love to you all,
Kerrie, Drew, Dylan and Ryan

Nicole said...

I am praying for you all continually. We love you, and we hurt for you so much. We are praying, praying, praying.

John, Angie and the kiddos said...

You know how we feel. We'll always be there for you no matter where we are. We love you. I think you're right. Drew is more than human.

John and Ang

Amber said...

Kari, my heart has run away from my body and is sitting right next to you. I won't stop begging - I promise. I love you as much now as ever.

Anna said...

Oh my gosh Kari. My heart hurts for you. I had no idea you were dealing with this. My family will be in constant prayer for you guys.

Jan H said...

Thanks, Kari, for your time and love to post this info about precious Drew. We love you, and are continuing our prayers for Drew and your family. Take courage; may our almighty God give you peace. Love, Jan H

Kim said...

Lord Jesus,
Craddle this precious family in your arms right now. Whisper soft words of love and somehow grant them rest. Jesus, please keep precious Drew from pain and discomfort. You know everything and formed this precious little boy. You knit him together so please give the doctors Your Wisdom in how to bring the seizures to an end. Heal him and comfort Him; extend his life, Lord. In Jesus name. Amen.

Shawnda said...

My heart is breaking for your family. I found you through Erin's blog, and we are praying for your Drew and your family!!!!

"Trust in him at all times, O people;
pour out your heart before him;
God is a refuge for us." Psalm 62:8

He's a present help in times of trouble!

Oh, we are praying for healing!!!

One Hale of a Story... said...

Kari-
I don't know you, but I'm praying for you and your precious family. God is using you and your family for His amazing glory through all of this. You are in our families prayers.

The Turcotte's said...

Kari,
We go to church with your mom and dad. We love them very much and are hurting with your family! I can only imagine how hard this is and we pray that you will all have peace in God especially Drew.

jerred and lisa said...

My heart goes out to each one of you right now, I want you to know that we are praying for a miracle right now, in fact the whole church hear in Louisiana is praying for Drew!! I pray God brings you peace and strength to get through this, hold on to your faith that God's plan might be revealed! Know that you are in my constant thought's and prayers!

jennifer said...

Kari,

We just heard about your sweet precious boy. He is in our prayers and we will not stop. You and Jordan are there also. My heart is breaking for you guys.

much love,
Jennifer and Matthew Ensor

Emily Houglnad said...

Kari and Jordan - our prayers are with you continually - we pray that God will give you strength, endurance, wisdom, whatever characteristics parents need to be armed with to endure this sort of pain for their children, and I pray that Dennis and Marnie and Jordan's parents are armed with the same characteristics, since I know their hearts are breaking for you, too. We love you guys...

Buckners said...

Our hearts are ache for you and Drew.
We are the Buckners we go to church with Dennis and Marnie. Your parents are gifts from God to everyone they touch.
We have some idea of what you are going through right now. We lost our baby Truman Aug 3, 2007 to Trisomy 13. If I can give any advice in this surreal time is to trust your heart and listen to God, not all the advice that is coming your way right now. God will guide you and Drew. He will place people in your path to help. Breathe. Something that we did was to talk to Truman. Tell him that is was ok to leave us and rest in Our Fathers arms. We would see him soon and he would be all better!
Please call or have Dennis or Marnie if you would like to talk.
Sending a Hug and Prayer, Beth

Amy Jill said...

Kari- I am Erin Lonard's sister. I cannot begin to imagine the heartache you are experiencing, as I sit here crying for a child and a mama I've never met. Please know that you, sweet angel Drew and your family are in my thoughts and prayers.

Steve said...

The prayers of our family are with yours!

Amy Mccathran said...

Kari and Jordan--
My heart is so heavy for your family. We will continue to lift up your precious baby boy Drew as well as you two.
Much love in Christ,
Amy (Stump) McCathran

Jennifer and Rich Starkey said...

I am a friend of April Jackson (she is neighbors with Laura and Kevin). My heart aches for you and what you are going through. I found myself drowning in tears reading your story. I will pray for you and your family. God has a plan, I know you know that. You sound like strong people to be going through what you are and still managing to see a light. Everything happens for a reason. God gave you that special little boy for a reason. I pray you find peace, one way or another...

Jim said...

Jordan, Kari and family, you are all being prayed for in Searcy. I love you guys....Jim Ward

Jolene McDonie said...

Jordan and Kari, I am so sorry to hear about your loss. My heart and mind cannot imagine. I've cried for the last 20 minutes going through this site. My little girl is 18 months... very close to Drew's age. Jill emailed me today with the news. I don't even know what to say, except that I will be keeping your family in my prayers daily. I pray your hearts begin to heal and that you will be blessed to have other children. Dan and I only have one and she was an invitro miracle. We are not promised to have any more. I am content with that because there are so many children out there that need christian mommies and daddies to give them a chance at a normal life. Adoption is miracle in and of itself. God bless you and your family again.
With much love and sorrow,
Jolene (Dennis) McDonie