Wednesday, September 19, 2012

Amazing Days!

 I have been wanting to write this post for a week now but seem to have been faced with so many things that stopped me from doing so. Important, urgent things like my dad having a heart attack and finding out that he will be having bypass surgery in the next couple of weeks. But, things have settled  down a bit at the moment and I so want to share here the news of Emma's six week check!
Emma and I headed down to Children's last week to see her surgeon for her first post op appointment. I was looking forward to seeing (on the inside) how things were healing for Emma. There was a long wait today to get through the normal wait, xray, wait, wait in a different room, and then to see the Dr. Emma and I were laughing a lot and making funny jokes. Our family is known to remember and repeat funny lines from shows, you tube, etc. and we kept finding things to say them to while we were waiting. When Emma's Dr.came in he said, "I heard you two were getting pretty rowdy in here!" So funny! That just made us laugh more. He was totally joking but that made it funnier.
Anyhow, he chatted with Emma about how she has been feeling, examined her and discussed that she should just keep to walking for now and not to add any other activities yet. He also decided to send her for Phsyio to help loosen her shoulder and neck muscles. He is happy so far with how everything looks.
I was curious, as were some of our friends who have asked me, where exactly do they put the bone that they hope will fuse her spine together. So I asked him. I think he misunderstood what I was asking about because he brought up an xray that they took while Emma was still in surgery. It had to do with the top 87 degree curve and where they removed that whole vertebral column. They actually did remove that whole thing. probably 3 or 4 verteba worth leaving only her spinal chord during they surgery. The xray he showed us was during that time and showed two small temporary rods that held her spine in that area until he was able to build the bone back in around her spinal chord. Crazy! He told us that usally during surgery, there is musc playing, people are chatting a bit etc. but they have a special code when everything has to be completely quiet except for communication about the surgery. Emma was one of those times. After telling us this, he leaned back in his chair and let out a sigh and said, " I don't know what you were all doing on a spiritual level but, it worked." He told us again how it was amazing how she didn't have any bleeding while they were doing all that bone cutting. The anisthetist (sp) even asked during the surgery. "Are you expecting to loose any blood?" They were, but it never happened! Emma's Dr. relayed to us how even Emma's recovery was remarkable. The staff at the hospital couldn't believe how little pain she had after all that he had done and even asked the Dr. if he had her mixed up with another patient. He also said, "I can tell you this now that the surgery is over but for 4 or so days leading up to Emma's surgery, I was sweating." He said how he knew that there was a huge element of trust for us to hand over our child to him for him to batter them in the OR for 10 hours.   ( He had been worried about the surgery but little did he know that we have a great God who was taking care of all the details) I repsponded with something lame and he said, "It's good, it keeps me humble." I told him how for us, we were not worried. That we trusted him (and God) and that we were atually quite peaceful leading up to the surgery. Even up until that day. He told us that he thought we were really casual and relaxed the morning of the surgery and he found that to be a little weird for him at the time.

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God , which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Phil. 4:7

Anyhow, Emma is doing remarkably well and will see her Dr. in another six weeks. We share this with you because we want to bring Glory to God, to share with you how God has answered your and our prayers, to encourage you that God still moves in remarkable ways. It is so easy to get bogged down with all the trials of life but I know that I and our family will be able to look back on these days and remember that God sees us and hears our prayers and is quietly orchestrating all things for our good and His glory even in the body of a young girl, using the hands of a gifted surgeon who knew and could see that God's hands were guiding his hands and all the events around this surgery. Praise the Lord!

Saturday, July 28, 2012

Day 8 and 9

Well, I think we've turned a corner. Emma is no longer on the antibiotics and her tummy troubles have subsided some. This is a huge relief! She slept half of each of the last 2 nights in her own bed. She seems to wake up in the middle of the night to take some meds and move to the couch in the living room to give her body a break and assume a new position. She had been slightly tilted to one side due to all the short muscles in her body that were shortened because of her curve and those are very slowly stretching out and she is slowing looking a bit straighter each day.
She was able to take a bath of sorts today and this helps to feel so much better. Tomorrow I will wash her hair again. Also, I made her get up and go outside for a walk down to the "round about" and back this evening. I think this did her a world of good. Tomorrow she will walk there again in the morning with her dad while I take the other kiddos to church. (The treck to Vancouver and back is still a bit much for her.)
Thank you so much to everyone who has visited Emma, brought her some goodies, brought our family a meal while I was with Emma in hospital, or since we've been home (I've been so tired so this has been a blessing to me. ), sent encouraging words, prayed, and cared for our family. We have been blessed.

Thursday, July 26, 2012

Day 6 and 7

Well, we are home and being home has had it's ups and downs for Emma. I can tell that generally she is happier here and that she clearly missed her sibs as much as they missed her. She was thrilled last night to have a home cooked meal and she laughed out loud at something her brother said that frankly wasn't really all that funny but the two of them are so close they are a little lost without each other.

The last two plus days at the hospital Emma has been having tummy troubles. She is having to get up to the bathroom with tummy cramps very often. Last night she was up at least 12 times. As you can imagine, this is quite upsetting to her and disturbs her sleep so much so that she (nor I ) got very much of it. I had mentioned this issue again yesterday to the ortho nurse and she said to call her back today if there was no change. So, I called her this morning. We decided hesitantly that we would take her off the anitbiotics for now until her surgeon is in tomorrow to see if that helps at all. Hopefully this will give her some relief.
The reason that the nurse(and I ) were both hesitant to stop the antibiotics is because Emma has some irritation near the top of her incision and they usually aggressivly treat anything like that to prevent deeper infection. They did ALOT of bone cutting and don't want a bone infection!

So, if anyone is still reading this, please pray that Emma does not develop any infection, that her tummy trouble will ease off as this will make her much more comfortable. Thank you so much!
Blessings,
Corinna

Tuesday, July 24, 2012

Day 5 and Diaper Hair :)

So, when I made today's post I forgot a few details. Part of the reason I write this blog is so that Emma will have these memories of this time and that she will see God's love and care for her and how he has so faithfully answered our prayers.

Today we asked Emma's nurse if whe could have her hair washed. She agreed and said that she would come back later to do it. When she came back Emma's friend "Cupcake Shorts" had come to visit but we went ahead with the hairwash anyways. So, the way we thought it would take place is on a tray that is fairly flat and Emma stays lying down on her back for the hair wash but when the nurse came in with the supplies she had a huge package of adult diapers plus (yes, I did say adult diapers!) all the regular hair washing stuff. She proceeded to put some of them under Emma's head since she couldn't find the tray and washed her hair over adult diapers....it's pretty remarkable how much liquid those can hold! Anyway, diaper head....I mean Emma has nice clean hair now and Cupcake Shorts, Emma, her mom and I had a few good laughs about the whole thing. She also got her hair trimmed today since they had spa day here at the hospital!

On a more serious note: The top of Emma's incision is not looking so hot right now. Earlier today they had taken out her IV's and were preparing her for tomorrow's departure but tonight the Dr's wanted her IV reinserted and they put her back on IV antibiotics. They will come and assess it again tomorrow morning. There is a chance that we will not be going home tomorrow....she's pretty upset about that. Please pray that it will get better. Thanks so much!

Day 5

I think we've turned a corner. Emma is feeling much better today! Her fever has been down all day, she got her hair washed and is wearing her own clothes! Today is spa day here so she will also get her hair trimmed later too! ( I might even get my nails done at the same time. We should be coming home tomorrow if everything stays as is.

Monday, July 23, 2012

Day 4

Emma is much more comfortable today. She was given a muscle relaxer last night and that helped with the muscle pain. She is back on morphine. She has been pretty sleepy from the
meds and has been struggling with a fever all day. She did however take a fairly long walk with physio around the halls here even stopping for a free Blizzard! There are a few perks to being in the hospital. She likely won't come home tomorrow since the fever is still on board and they have yet to determine the cause of it. Anyhow, please pray for the fever to subside but more importantly for the reason she has the fever to go away. Also, for her extreme muscle pain. Thanks so much!
<3

Sunday, July 22, 2012

Day 3

Well, here we sit 3 days out from Emma's surgery. In some ways the time goes really fast and in other ways it goes so slow.

Today Emma was removed from her mophine IV which she was aiming for because she really wanted to get rid of some of her tubes. Especially the catheter. So, at about 6:30 this morning they took her off after gradually weaning her over the day before. As it turns out the this may have been a tad too early because she has struggled with pain management today. She has been up to go to the bathroom a few times today but can't get comfortable when she gets back to bed. Her muscles are SO sore!

In the early afternoon a orthopeadic Dr. who was on today but also saw Emma yesterday came to see her so we discussed her pain issues. He ordered some more meds for her and some muscle relaxants to help with the muscle spasms. He said that it may take a day or two to turn the corner. He said, that this was not a regular scoliosis surgery. He said it was like that times 5! ( I didn't even know that!) They did ALOT of work in there. The muscle pain is to be expected too because they have taken her very crooked spine and made it pretty straight.

She is well medicated now and is much more comfortable. Stay tuned for day 4.
Blessings

Saturday, July 21, 2012

Day 2

Emma had a pretty good day today. She saw a few more visitors, recieved about 5lbs of chocolate, enjoyed winning a new umbrella from EA Games, (they were here doing a special event) had a yummy turkey bacon sandwich and walked 2 times today around the block.(at least on this floor)

She is very tired this evening and they had decreased her Morphine but had to give her a little boost this evening and she wasn't coping with the pain as well. Now she is resting comfortably on her stomach! 

So, I suspect that she may have to be careful not to rush things, to enjoy the care that she gets here and mom's undivided attention, all the visitors for a few more days. 

I'll keep you posted. 
Corinna

Friday, July 20, 2012

"There were just all the right people in the room...."

Day 1
Today was a busy day and Emma did not sleep much. This morning during my choppy hours of sleep at about 6:45 Emma woke me up by throwing her stuffed dog and bunny at me. :) She was whispering because there were others sleeping in the room and I  was still not waking up. She said, "Mom, you better get up because the Dr's are coming in 20 min." Only a resident came but I was up and dressed.

Emma watched a movie today (sort of), sat up in bed this morning, dozed on and off, enjoyed a coconut Frappe and stood up with physio this afternoon. It has been a good day of movement for her. She has been having a bit more pain this evening so she maybe has overdone things a bit.

We had a few visitors today too. Some baring good food so that Keith and I didn't have to eat another days worth of cafeteria food. (Thankyou! ) If you come to visit make sure I take your photo and that you sign Emma's white board! :)

This evening around 6:30 Emma's surgeon popped in to see us. We weren't expecting him but he stopped in after another long surgery and still treated us as though we were the only
ones he was here to see. He checked on Emma who at the time was feeling a little more pain than she had been. After hearing all that she had done today he did say to take it easy. I asked him about her curve now and how much correction that he was able to get. He said goodbye to Emma and took Keith and I down the hallway to have a look at her xrays. Seeing those xrays blew my mind! When he first discussed having this surgery he really wanted to do it to make some space for Emma's lungs and heart however he didn't think that he would be able to make her straight, he would just do the best he could. Well, he compared her last xray taken just a couple of weeks ago to the ones from the OR yesterday.
Her top curve 2 weeks ago was 87degrees and the bottom one in the 60's. Yesterday's xray
shows 15 degrees on top and  less than 25 on the bottom! Chills. We had no expectation that they would get anywhere near that correction and frankly, neither did he. He told us that "There were just all the right people in the room"! That they just kept little by little cutting away bone, and packing in the gauze and the bleeding was so minimal that they kept going. Everyone in the room was shocked that she hardly lost any blood (too much and they would have stopped where they were. ) and that she didn't need a transfusion. Everything just went right, amazingly right! Keith told our Dr. that lots of people were praying. He said "Thanks, it sure made my job alot easier." God did it....all of it. We have no doubt. It is a special gift to see God's care in such a way. We know this and that is why we have to testify to His faithfulness. To God be the glory great things he has done!

"Now to him who is able to do far more abundanty than all that we ask or think, according to the power at work within us, to him be the glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen" Ephesians 3:20-21

Surgery Day and God Answers Prayers!

Well, here we sit on the other side. The other side of one of the longest days of our lives. It is difficult waiting and waiting and waiting knowing that your child is face down on some crazy apparatus for hour after hour and not really knowing if things are going as intended. However, we were fairly relaxed and trusting God that He would do what is best for Emma. (Romans 8:28)
We arrived here at the hospital at 6:30 am and were quickly seen by several different Dr's and nurses and the monitoring team. (They put markings on her head to later attatch electrodes to that they use to monitor Emma's spine function. Essentially to make sure her spine is still passing signals to all of her body parts.) She was so brave this time and was able to say goodbye to us in that area. Then the long day of surgery began.
While Emma was in surgery Keith and I walked, talked, shopped for a few things for Emma, waited in the waiting room, found out it would be longer, drank coffee, walked some more, read everyones messages of encouragement. (What a blessing to us! )
Emma surgeon came out to speak to us at 6:40pm or so. (We had said goodbye to her at about 7:45 am. and she was done at 6:30pm) Long surgery. Emma's surgeon is a superstar! We know that it was a very intense and long day for him too but he still came out
to speak to us like we were the first people he talked to that day! He told that everything went very, very well. He said that he thought she would be pleased with the results because her chest and shoulder blade deformity should be much less pronounced. The reason the surgery took so much longer irs because some of her vertebra were naturally fused solid, which we already knew, but removing some of that bone and separating them was more involved than he had anticipated having to go all the way around the vertebral colomn. As you can imagine this takes place right around the spinal chord so they had to move very slowly. There were no problems with her monitoring and he is happy with the results so far.

We finally got to see Emma in recovery at about 7:45 or so. She actually looked much better than after her last surgery though her face was very puffy. So puffy that she couldn't open her eyes without using her hands to open them. She was very frustrated by this because she really wanted to see us. The morphene also makes everything blurry. She also had great Angelina Jolie lips. The swelling has gone way down today. :) It was also difficult to talk.

Emma has done very well changing positions through the night and she has even sat up with physio this morning. Everyone is very pleased with her progress.

I am doing fine but suffering from a great amount of sleep deprivtion but I know that the Lord will sustain me through this too. Keith will be coming back today to stay with us.

God has been compassionate and gracious towards our family! We couldn't have asked for a better outcome and Emma is doing so, so well. We are so thankful to the Lord and all he has done. Our  (and your) prayers have been answered in the most amazing way! We are acutely aware that God may have not answered our prayers in the way we had wanted but HE did! May He be glorified in all of this.

"I will give thanks to you, O Lord, among the peoples; I will sing praises to you among the nations. For you steadfast love is great above the heavens; your faithfulness reaches to the clouds."  Psalm 108:3&4

ps. I think Emma is a little taller now. ;)

Wednesday, July 18, 2012

Tomorrow is July 19th!

Tomorrow's the big day. We will be up very early as we have to be at Children's by 6:30 am. Thanks to everyone for keeping us in your prayers. I will post here again tomorrow evening once Emma is out of surgery.
Blessings

Friday, June 29, 2012

Pre Op June 28 (Emma said to call this post.....I'd Rather Be at Sports Day!)

Well, it has been many months since I have updated this blog but I know that the word is out that Emma is preparing for another major surgery and some of you are wondering what is going on. So, here it is.
Over the past years Emma's spine curve has been steadily increasing. She is now over 80 degrees curved in her thorasic spine and I believe the lumbar curve is over 60 degrees. This has not been a surprise to us or Emma's surgeons as this is a typical progression of scoliosis and they had told us from the start that it would worsen as she grew. She has progressed now to a level where the surgeons want to intervene to protect her internal organs from damage. The S curve she has makes her quite compressed and they do not want her lungs and heart etc to suffer damage from lack of room. So, Emma is scheduled to have this delt with on July 19th Lord willing.
Yesterday we spent the day at Children's going through pre op. This, just like before consists of meeting with the nurses, physio, anasthetic, having blood work done, doing pulmunary function tests, signing paperwork and seeing her surgeon. Everything went smoothly and we met some of the same people that we saw before Emma's last surgery in 2008.
The scope of her surgery (I appologize if you are squeemish.) is to surgically lessen the curve in Emma's thorasic and possibly the top one  or two lumbar vertebra. They will do this by removing some bone around her genetic defects that consist of a couple of verteba that are naturally fused together to help to provide a bit of mobility there before he does the surgical fusion as the birth defect fusions in her spine are not the type of fusion that he is trying to achieve. There is  another hemi-vertebra that will need to have some bone removed as well. Then, he will try to straigten out the top 80 degree curve as much as possible without compromising the integrity of her spinal chord. He won't know how much this will be until he is in there. We are happy that the Dr. anticipates that her bottom curve will follow suite and that surgery will not be required in that area. We are hopeful that this is the case but again, he will not know for sure until he is doing the surgery. Then they will fuse her thorasic spine using bone which will hopefully grow together. To hold it all in place they will use pins and rods but it is the bone fusion that is essential for a successful surgery. (There is a slim possibility of a failed fusion which could cause the rods to break because believe it or not it is the bone fusing that provide the stability that is neccessary. The Dr. describes the pins and rods as a cast but it is the strength of that the bone growing together that gives Emma the stability she needs.)The surgery is expected to take somewhere between 6 and 10 hours.
Emma will be in hospital for 5 to 7 days depending on how fast she recovers but she is a bit of an overachiever so she will likely get to go home day 5 or so. I will be staying with her in hospital during that time and my mom will look after our other kids when Keith can't be here.
Some of you have asked how you could pray:
1. Please pray for Emma and our family's health over the next few weeks. Emma will not be able to have the surgery if she is sick.
2. For a peace that passes all understanding for Emma and for our family.
3. For our kids and their grandma who will be looking after them.
4. For the surgeon and others that will be helping with her surgery. For wisdom, health and a good night's sleep before the surgery.
5. For a success both in the taking of the fusion and the best possible outcome for Emma.
6.For God to be glorified.

"Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed." 1Pet. 4:12-13

Thank you all so much for your prayers and love and care for our family.
Love the Grooms