I apologize for not doing a surgery/bone flap update sooner. There has been a lot of activity over the last 36 hours! The short story is that the surgery went well. The bone flap in back, held in place by four or five titanium plates. Joanne looks amazing! I think "Team Joanne" had gotten sort of used to seeing her with her bone flap out. But now that it's back in place she looks amazing!
Joanne is still at Littleton. We are sort of hanging out today to see when she will be transported back to rehab. At the moment she has a drain coming from the incision that is taking care of some fluid build up. Her surgeon is supposed to be in later this morning to determine when it can come out. She can't go back to rehab until the drain is removed. So we wait.
Cool thing: Erin, who is our other favorite nurse from our weeks here, is on duty today so we got to catch up with her and Joanne was able to meet her for the first time. Erin was on duty during some of the darkest days of Joanne's stroke, so there is a special place in out heart for her.
Joanne is exhausted and in pain. They took her down to get a CAT scan at 4 a.m. this morning, interrupting her sleep. She has been up since then and is now trying to take a nap, but it is difficult for her because she hurts. Her shoulder and hip on her left (paralyzed) side are continuing to bother her a lot and then incision from the surgery is painful and itchy too. She is on some pain meds but all they seem to do is take the edge off and don't fully relieve her of the pain that she is in. This morning she told me that she can't even remember the last time she was pain free. That just breaks my heart. I would do anything to take her pain and put it on myself. She has a lot to do to recover/rehab and the pain that she is in makes it so much more challenging for her personally.
It is also really weird to be back in room 556. This is the same ICU room that we had when we were here before. This is the room that we almost lost Joanne in. This is the room where we sat vigil and prayed and prayed that God would move to relieve the pressure on her brain. This is the room that we will never forget. It is nice to be here under such improved circumstances but a lot of memories remain. In some ways this trip feels like redemption and like victory. God moved and Joanne won! We didn't lose her here and she has come so far. I guess it's really hard to explain the complexity of emotion I think our family is feeling right now.
The girls are now officially on Spring Break. We sat down this morning and mapped out coverage for them for this upcoming week. It's amazing how something as routine as a school holiday needs a spreadsheet to coordinate all of our activity. But that's where we're at. We need to be there for the girls and we also need to be here for Joanne. So Papa got out a piece of paper and we scheduled it all out. I hope the girls are able to have some rest and relaxation over the next week and that we can be present for them. Papa is going to spend a whole day with them and my mom will spend a couple of days with them too as will Gran. Also hoping they will get some time with Joanne--they miss her a lot and I think they are sick and tired of the current reality. They want to be home, they want their mom back, they want to turn back the clock to when everything was "normal." As a dad I wish I could give that to them. I wish I could be more available and present for them.
Sometimes people ask the question, "If you could have any super-power what would it be?" I now have my definitive answer: I would have the power to be in two places at once.
Prayer Request:
1. That Joanne would not get an infection. If the bone flap gets infected or her body rejects it in some way that would be a bad thing. So please pray for healing and no complications.
2. Please pray that Joanne's pain would cease. Just hurting all the time is taking it out of her, wearing her down and significantly dampening her spirits.
3. Please pray for a good Spring Break for the girls, that they don't feel "passed around" and that they have some rest and some fun. Goodness knows they deserve it.
Toben
Continuing to pray on all fronts. What a journey you all have had. . . and are still in the midst of traveling. Healing, Blessings, and Hope to You All.
Posted by: Amy | March 26, 2011 at 09:45 AM
Praying for peace and rest and pain relief too God Bless xx
Posted by: Ann | March 26, 2011 at 09:50 AM
Hi Toben,
Amazing how you went back to the same room. It is almost like the Lord was showing you, that through the darkest hours or the beginning of a new chapter, he is with you.
I am so sorry Joanne is in such pain. I feel so badly that she must endure so much. There must be something big that God has planned for her in the future. Still it is hard to watch our loved ones suffer this way. Prayers will be said by me and my prayer chain.
Always, I keep your girls in my prayers. My daughter went through so much, but God really is good. Trust in that!
Also, take some time for you. Even if it is just to take a short walk or sip a coffee. It's hard being everything to everyone.
Blessings to you all,
Maribeth in NH
Posted by: Maribeth | March 26, 2011 at 09:57 AM
We are continuing to pray for all of your needs. So thankful to our Lord that Joanne came through the surgery so well. Praying for the girls, Joanne's pain and paralysis. Praying for your needs, rest, endurance, stamina, peace.
Blessings,
Julie Hoagland - Seattle, WA
Posted by: julie Hoagland | March 26, 2011 at 10:04 AM
I wrote one comment I think it went to cyber space somewhere.
Toben this post was so moving it brought tears to my eyes I am still wiping tears from my eyes as I write this, You are an amazing man you have been so faithful to your wife and kids it just blows me away. Take a walk and breathe some fresh air go by yourself and take sometime to yourself even if it is a small walk. I pray that God will give Joanne pain free days and I pray that you all will get some much needed rest well the girls are on spring break I pray that you will get quality time with the girls and you all can go do something fun together I pray that the girls will get to spend sometime with there mom. I pray that there will be no infections for Joanne. I loved this post most of all it was very moving Lord thank you for putiing this family in my path and I am so glad I can pray for them.
Carol
Posted by: Carol | March 26, 2011 at 10:16 AM
I am so glad to learn that Joanne's surgery went well, I almost used your email address to ask you but I didn't want to add to your load. I will pray for healing from the surgery, lack of infection and healing in general, as well as for a lifting of Joanne's pain.
I pray and hope your girls have a good break this week and that you too, Toben, can have some time to relax and have a break.
Love to you all,
Lynn
Posted by: Penbleth | March 26, 2011 at 10:19 AM
Praising God for His mercies and praying for pain relief and sweet peace!
Posted by: Betsy | March 26, 2011 at 10:24 AM
I so appreciate you taking time to post and share prayer requests. We will be praying for you from Delaware, and will continue in the days of transition in the immediate future.
Sherry in Delaware
Posted by: Sherry | March 26, 2011 at 10:44 AM
Thank you, Toben, for this very touching update. We will continue to pray for all your requests. Just rest in His hands knowing He has it all in control.
Posted by: Wilma Hatcher | March 26, 2011 at 11:09 AM
toben, i have been following your posts for weeks and i need to tell you how my heart goes out to you. one thing i want you to know is that not only is joanne and your girls a special person but it takes a special man to withstand all of this. alot of men would have bailed but this just shows how strong your character is. i know that at times you wish that all this hadnt happened but remember god is in control which you know. and i just wanted to say stay strong and know the love for your family will pull you thru. i honestly know that my husband as well would do exactly what you are doing and that is a wonderful thing. i will continue to pray for you and your family and most of all joanne so that she will get well and be able to be home with all of you. god bless you and continue to be the great husband and father that you are. connie
Posted by: connie | March 26, 2011 at 11:21 AM
Continuing to lift your prayer requests!
Peace,
Kim Feth
Apex, NC
Posted by: Kim Feth | March 26, 2011 at 01:05 PM
Toben and family... So very glad to hear such a good report! Praying for healing for Joanne and also for you and your family as you revisit painful places and the Lord shows you all how far He has brought you! Looking forward to hearing more good things!
Posted by: Marcella in Syracuse, NY | March 26, 2011 at 01:44 PM
I'm so relieved to hear the good report and the on-going prayer needs. On goes the charm bracelet. When wearing it, I was reminded to speak of Joanne with the result that another prayer warrior is joining the legions who are praying and loving a dear family we know only through your blessed writing.
To God be the glory, great things He has done in room 556!
Posted by: Michal Ann | March 26, 2011 at 02:35 PM
Joanne...one step closer to home, one step closer. I imagine the days feel long and the steps so heavy and homes very far away. But one step closer each and every day. You rare prayed for, for all the obvious things of course. That you would be free of pain. That speech, and walking and otherwise menial tasks that we take for granted would come to you with ease.
But mostly, I pray for peace of mind, heart and soul. All of these other wants WILL happen in good time. But the heart and soul, they a so easily bruised and so difficult to mend. None of the physical challenges can be overcome if the spirit is weak. So Joanne I pray for you to have comfort, peace and spunk for the road before you. A road that will twist and turn. A road that will fork when you least expect it. A road that is long. But a road that leads home. You will get there, you will.
Audrey and Emma...hold tight and know your mama is on her way back. Know that the lessons you are learning now about patience and care taking will serve you well in this life. Above all else, know you are loved!
Posted by: Auntie Mip | March 26, 2011 at 03:40 PM
I'm so happy to hear the surgery went well. I read your blog every day, even though I don't post often. It's hard at times to read what you are going through because I went through so much of the same things when my brother had his major stroke a few years ago. Your writings make me relive all those days and nights I spent at the hospital with him and I fully understand a lot of what you are going through. It's such a long, slow journey.
I'm not sure what is causing the pain in Joanne but I can tell you my brother also had pain in his left side (he too is paralyzed on his left side) However, we were told that while the pain is bad for him to deal with it does mean that those nerve endings are still active and the messages they are sending are making their way up to the brain.
Slowly but surely my brother got more and more movement on his left side. He still does not have all of it back. Maybe 80% in his leg and 50% in his arm.
However, we are years down the line and he is still in PT and OT 4 days a week and is still having slow improvement.
Sure the most improvement will come in the first year but if Joanne is not back to 100% by then, please don't give up. She will continue to get better even after that.
I've done tons of research and found that it could take up to 6 years to reach the full amount of improvement.
She has everything she can ask for with good medical treatment, great family and friend support and most of all, God on her side.
I have no idea how people without all those three things ever get better.
I know it's hard and one thing I want to tell you is to please TAKE CARE OF YOURSELF. Soon, if you have not already, you too will start to break down and get depressed. You will go through days where you get angry that you are the caretaker and your whole life has been changed in a way you never wanted. Then you will feel guilty for feeling that way and think you are an awful person for thinking that. Crazy things like that goes through your head. When and if it does, please know that is normal. You will get through it. But only if you take some time for yourself and be good to yourself. If you don't, you can't be good for anyone else.
Hang in there and if you would like to email me I would be happy to discuss how things went for my brother. It sounds like he and your wife have a lot in common.
God bless you and keep you strong!
Joanne
Posted by: Joanne Kennedy | March 26, 2011 at 04:04 PM
Prayed for all. Pray the girls have a wonderful Spring Break and that they can at least get some peace of mind. Prayed for Joanne and the "Team" that helping her recover. Praying that all that pain goes away. It's hard to have a positive attitude when you have a lot of physical pain. So glad that all went well with the surgery. I will just keep praying to God for Him to be with all of you through all of this.
Posted by: Patty | March 26, 2011 at 04:09 PM
I've been a bit absent from "blogland", but Joanne {& family} has never ceased being in my prayers. I'm relieved that her surgery went well, but saddened to hear she's in so much pain. Continued prayers for relief, peace & comfort...
Posted by: Leah C | March 26, 2011 at 05:44 PM
praying that Joanne will get relief from the pain! also praying that infection will stay at bay and that she will heal quickly!
Posted by: Beth Herring | March 26, 2011 at 06:08 PM
I wanted to share a verse I'm working on committing to memory..... one that has been a precious reminder of what's true....
In Isaiah 46:4, God tells us "Even to your old age and gray hairs, I am He. I am He who will sustain you. I have made you and I will carry you. I will sustain you and I will rescue you."
He sees our wrinkles and gray hair; our fears, our trials, our need to be cared for. This is a sweet and much-needed assurance.
Praying continually......
Posted by: Margie Smallman | March 26, 2011 at 06:15 PM
Praying for each of you! This week, I'm asking God to thrill Audry and Emma during Spring Break!
Prayers and hugs!
stephanie
Posted by: OceanMommy | March 26, 2011 at 06:40 PM
God bless you one and all. I know you must be so weary by now, but praying with the "great company of others" that God's amazing grace will sustain and give supernatural energy, and healing. I read the post all the way back from Jan 13th and praised God for how far Joanne has come, miraculously with the help and support of your amazing family, the health professionals and especially your leadership Toben. Thank you for taking the time to keep us informed out here in cyberland, and continuing to encourage us all on in specific prayers and thanksgiving for what our Awesome God is doing in your lives, and especially for the miracle of Joanne.
A "siesta" from So. Cal
Posted by: Pam Houston | March 26, 2011 at 06:48 PM
Thank you for this update. We continue to be a part of a large prayer meeting on behalf of the Heim family. Being back in that specific room is from the Lord to remember, like Ebenezzar, "God has helped me thus far' (1 Sam. 7) Consider that J's pain is trainning her body in endurance. Her body is finding ways to respond even though she hasnt conquored it yet. God sees what is ahead and He is providing in ways we cannot see. We trust Him, lean into Him completely. Priviledge to be alongside in prayer.
Kathy in Idaho
Posted by: Kathy Rivera | March 26, 2011 at 07:42 PM
I knew it had been tough, weary few days. I check in each day to know how you're doing. And want you to know that you are still in my prayers.
Posted by: Patti in Craig | March 26, 2011 at 08:29 PM