Three months later... Amazing difference

Blaire had her 3 month follow-up with her surgeon on October 14th. Dr. Karlen took new xrays today, and said everything looks great. She is still standing a little off center, but that is normal. Her brain has not figured out her new center yet, but the scar is fading, and the back looks strong and straight. Dr. Karlen then asked Blaire what she wants to do. Blaire stated that she wants to cheer again. And Dr. Karlen said, "What is important to you is important to me, go ahead and start cheering and tumbling again." As a parent that really scares me, but we have complete confidence in Dr. Karlen. He told Blaire to listen to her body and take it slow to start, but except for tackle football, she is released to do anything she wants.
The Lord really knows how to time things, the Dr. appointment was on a Thursday, and on Monday cheer tryouts for her school, Mohave Middle School, began. She helped with the tryouts, made the team again and will be one of the co-captains for this year. Even two month ago she would have never dared to hope she would be healed enough to cheer on her school team. She is now going to K&K and dancing with her teammates on her competitive cheer team. She has lost all flexibility in her back, of course, but she is determined to get her tumbling; back handsprings, round-off back handspring tucks and standing tucks. While I am nervous, I am so proud of her determination to re-learn these skills, no matter how discouraging it can be.

August 20... Blaire Returns to School

What a difference in Blaire's pain. She is now quickly making progress, and has gone from wishing her pain would just go away to wishing she can get back to doing the things she loves. She returned to school for the first time today. She only made it through 3 periods, but it is a great sign she is returning back to her old life. She went to K&K Wednesday evening for a short time to visit her friends. It exhausted her, but she was so happy. Even the awful pain that comes back every night when she tries to sleep cannot take away her happiness at "getting her life back." I pray that she continues to improve.

August 17 Update

We have continued to struggle with maintaining Blaire's pain. It is so heartbreaking to watch her suffer. Yesterday, she also had extreme pain in her stomache. We took her to her regular doctor who, because the pain was located near her appendix, sent us back to Phoenix Children's Hospital Emergency room. We were definitely not happy to have to be going back, but Dr. Karlen stopped by and raised her spirits. The emergency room doctor decided that she should be admitted and monitored throughout the night. She was in a lot of pain, and very dehydrated. Another IV began to give her some morphine for the pain and lots of fluids. By last night, after so long, we finally began to see Blaire's normal happy personality began to emerge. By this morning she felt better than she has since the surgery. For the first time she told me she was hungry and wanted to eat. This trip back to the hospital may be just what she needed to put her on the right path of recovery.

UPDATE 2 weeks post surgery

Sorry, for the delay in an update. Also, there are no pictures, Blaire does not want me to take any pictures of her right now.

We have continued to be very worried about Blaire's recovery. She has had to continue to take the pain medicine at a maximum level every 4 hours to keep the pain in her back under control. Because of this she is always sleepy and lethargic.

She has no appetite, and is often nauseous, so she has lost about 9 pounds since the surgery. She is now almost 5 foot 7 inches tall and weighs only 95 pounds. She is skin and bones.

She had her first post-operative appointment with her surgeon today. The nurse told me confidentially that Blaire's pain 2 weeks post surgery is the worst that she has seen.

Her surgeon is very happy with the healing of her incision. She had another set of x-rays taken, and everything looks really good. Her back is so straight and flat. There is no infection, and everything is healing great inside.

However, he told her that he is worried about her weight loss, and her pain. He took her off the pain medication Codeine and put her on Percacet. He is hoping that this pain will begin to recede in the next few days.

We are praying that this change in pain medicine will help her be more comfortable, and that her back will heal to a point that the pain begins to go away soon.

She is discouraged and scared. She just wants "her old life back." She wants to go to school, church and cheer and hang with her friends.

Please pray for her to be encouraged, and that she will turn the corner on her recovery soon.

We love you all.

New X-rays

Yesterday Dr. Karlen took new x-rays with Blaire standing. We were able to look at them today. He measured the curvature of her spine at only 14 degrees now, and her shoulders are nice and even. Personally I think it looks better than that sounds, but the goal was 15-20 degrees, so we couldn't be more pleased. Blaire is leaning a little as she is standing, she still has to get used to her new posture. Carla Goodyear suggested we get a few full length mirrors and place them around the house so Blaire can see herself and remember to stand what will now be straight.

This next x-ray show Blaire from the side. It shows how much her spine was able to be de-rotated. The rotation of her spine is what caused the right shoulder blade to protrude, and for that side to be much higher than the other when she bent over. You can see her back is nice and flat now. I was surprised to see how long the screws actually are... they go all the way through her vertebra.

Blaire is Home

Blaire is home resting comfortably. We are so thankful to have are little girl home, and she is so happy to be home.

Friday Progress

Though we had some setbacks and frustrations yesterday, there also was a lot of progress. We Praise the Lord and thank Him for Blaire's quick and positive recovery.

Today, was a much better day, and Blaire made even more progress. First, Dr. Karlen came in and removed her dressing, the on-cue medicine tubes which was a medication pack that automatically gave medicne directly to Blaire's incision site. (I did not mention that one when I was naming all the tubes in her... did not even know it was there at the time). He also removed her drainage tube. What a beautiful back Blaire has. The incision is quite large, but is clean and flat and seems to be healing well.

After that, Blaire continued on working on her walking. Courtnie her cheer coach came to visit, and I gratefully let her put her budding Physical Therapy expertise to work as she helped Blaire take a short walk down the hallway.

Later, Blaire was taken to the x-ray department and x-rays were taken with her in a standing position. Tomorrow we will learn how straight her back is now. We are SO pleased at how straight and symmetric it looks, so we already know what a success her surgery was.

Blaire had other visitors; Lizzy, Taylor and her Aunt Diane came with Sammi and Jacob. Her Impact youth group leader from Scottsdale Bible came, and Grace also returned for another visit. Those visits really inspired Blaire to work hard at getting up and walking.


Her IV's needed to come out, so this afternoon both remaining IV's were removed... That is it... Blaire is tube and monitor free. And Nushka came and helped Blaire with her last Physical Therapy walk. They walked around the unit to the Lighted picture board that Blaire remembered from the last time she was here almost 6 years ago! Nushka even had her climb up a couple steps. Wow... 4 days after spinal fusion surgery... Aunt Barbara: what advances they have made since your surgery!

Now that she has all her IV's out, all her pain medication is being given orally. This transition has been a little rough, as she cannot give herself the jolts of morphine when the pain begins. But we are trying to get her on a schedule alternating between codeine and valium to keep her pain control steady.

Because Blaire still does not have much of an appetite, these medications on an empty stomach is making her nauseous, so she has been taking an anti-nauseous medicine. We are hoping to wean her off of that by morning.

With all the progress she is making, Blaire may be coming home tomorrow night! She will have a lot more healing to do there, but Granny is anxiously waiting to give her the love and attention that will help her heal more than anything else can!

Thank you all for all your love, support and prayers. I can truly say we felt the hand of God on Blaire. And we felt the peace that passes all understanding as we ached when we had to watch Blaire go through the pain. We know that through tribulations, we grow both as a Christian and as a person, and I know this experience will change Blaire into an even more amazing and sweet young lady.

Call me 480-688-8546 if you want to visit tomorrow, so I can give you the latest updates.

Blaire's progress on Thursday

Nushka, Elaine and Blaire start Blaire's walk. Blaire seems to be almost as tall as her sister now!


This morning, Blaire was visited by both her Surgeon, Dr. Karlen and her Anethesiologist, Dr. Tong. They are both so wonderful, and really seem to care about Blaire. Dr. Karlen is so pleased with her incision site, there has been no seepage from her incison except through the drainage tube. He wants to remove that tube tomorrow and replace the dressings.

The goals today were to remove the catheter, and get Blaire taking her pain medication orally. Nushka, her Physical Therapist came this morning and Blaire practiced sitting up, standing and walking to the bathroom, and sitting on the commode. Once she knew Blaire could do that, the catheter was able to come out. We were afraid that it would have to be replaced, when Blaire struggled for most of the day to pee on her own. The nurses gave her until 7 oclock this evening before they were going to have to replace it... Blaire finally was able to go about 6 oclock!

Nushka came back around 4:00 and Blaire, with Elaine's help, was able to take a long walk down the hallway to the waiting room and back. The goal was for her to repeat that walk this evening, and even farther if possible. But, when we started out, Blaire's back and neck muscles began to spasm, and she had to lay back down. Her pain level went to a 9. The nurse gave her valium, morphine and another nonnarcotic pain killer to stop the pain.

Another goal today was to get Blaire off IV pain medication and to oral only. However, probably because Blaire has not eaten a regular meal yet, the oral medication made her very nauseous, so we had to continue with the IV medication today.

The bright spots were her visitors today. A young lady from Blaire's Sunday School class who had this same surgery, Grace, came to visit with her mother. Brittney and Lynz from K & K came with a HUGE card signed by all her gym-mates at K&K. It is so cool and is now hanging in her room. Aunt Lisa and Lauren brought her balloons but they had to pop all the latex ones and only bring the mylar one in... I guess it is against the rules to bring latex balloons. But Blaire really appreciated the thought.

A lot have asked when they could visit Blaire. She is able to have visitors now, and looks forward to seeing all her friends.

Blaire's Surgery

I have made up a link for anyone who wants to see all the surgery pictures. Some are sort of intense (OK, really intense... sorry Bobbi). Don helped me add the explanations of what each picture is showing. It is really interesting but some are quite graphic.

Here is the link: http://blairessurgerypics.blogspot.com/

Blaire's First Walk

Blaire's stay on the regular floor started a little rocky when the trip from ICU caused her pain to spike quite a lot. But, with a little help from the Physical Therapist, Nushka and some extra medication, the staff soon got it under control.

Later, Nushka returned and helped Blaire sit up, stand and walk to the doorway of her new room. Though that was only about 20 feet there and back, it was enough to exhaust her.

When she stood up, her dad said he thinks she is now taller than her mom, who was standing next to her. The Surgeon, Dr. Karlen told her today she was definitely taller today than she was when woke up yesterday morning!

Last day in ICU

A lot has happened today. First thing this morning the Physical Therapist, Nushka, came in and helped Blaire sit up for the first time since the surgery. It was rather painful for Blaire, but she did it like a trooper! she wouldn't let us take a picture of her from the front because of the pain, but we got a really good look at her back. It looks so beautiful and even and straight! We are so pleased.

Because one of the numbers they were monitoring was low, the Doctor decided to infuse Blaire with one of the units of blood she had banked in the last few weeks.

Later that morning Tiger, a Phoenix Children's Hospital therapy dog came to visit Blaire. What a sweetie he was... and really smart too. His owner was such a neat man, also. Blaire really enjoyed cuddling with Tiger for a while.

Finally in anticipation of moving to a regular room, they removed some of the lines and tubes attached to Blaire. The IV in her neck was removed, along with the arterior line and a couple other monitors.

AND Blaire was moved to a regular room (102A for those who want to visit) about 4:00 today.

Still working on pain control (?????) but she is doing great! She is looking forward to having visitors tomorrow.

Wednesday Morning!

OK, first Laura Maurer added the white medical tape to her already geeky glasses. Blaire loved it...can anyone figure that out?... since when do you strive to look geeky?

Last night went very well. She was able to keep her pain under control with the morphine.

She did get a little frustrated throughout the night, because the nurses had to keep waking her when she slept because her breathing would become too slow and shallow.

Today her breathing seems to be much stronger, she is feeling more pain and little aches over her body, so we know the anesthesia from the surgey has finally worn off.

Some number they are monitoring is a little low so they will be giving her some of the blood she donated earlier in the month to replenish what she lost. But Dr. Karlen came to visit and said she is right where he would like her to be, everything looks really good.

Today is a big day... the Physical Therapist will be in and Blaire will be sitting up. She will be able to eat and drink, though only apple juice and pudding to start.

If all goes well she will be moved out of ICU to a regular room by this evening and she can start having visitors!

The Human Pincushion

Things are calming down, though we are still struggling a little with the pain. She now has morphine, it is not at a constant drip, but Blaire can give herself some every ten minutes. She is also still not getting a steady flow of the valium, but the nurse has given her one dose to bring down the pain. As Blaire's breathing continues to improve, things are getting easier.

I thought I would talk about all the cables, tubes and equipment attached to our little girl.
First, second and third; Blaire has three different IV's. She has one in each hand and a third in her neck.


Fourth through seventh; Blaire has four different monitoring devices: one is one her finger that measures her oxygen saturation. Another is in her artery and it measures her blood pressure constantly. She has two monitors stuck to her chest to measure her heart rate, and a blood pressure cup which periodically measures her blood pressure.


Eighth and ninth; she has an oxygen mask to give her the extra oxygen she needs, and her button which she can press to give herself her pain medications.

Tenth; she has these inflatable stocking devices on her legs to keep the blood to her legs circulating.

Eleventh and twelth; she has a drain from her back incision, and a catheter because she cannot get up to go to the bathroom.

Phoenix Children's Hospital is an amazing place. Because they do so many of these surgeries, the Surgeons, Anethesiologists and nurses are experts in what they do. Though I had my anxious moments today, I never doubted she was in the best hands possible.

I am definitely praying for a quiet night... we could all use it!

Pain Management

Because it was hard for the Doctors to get Blaire to start breathing on her own, and even after she did start breathing, the breaths were short and shallow, the ICU Doctors did not want to start her on the morphine and valium as planned.

Her back pain began to increase until it was quite intense, so her anethesiologist felt she should be put on the morphine. He did not want the pain to get too intense, or it will be difficult for her to get it back under control.

They began the morphine, but it is not as a continous drip as planned, but will only be given if Blaire wakes up and presses a button.

They do not want to start the valium until her breathing has improved. She needs the valium to keep the muscles in her back from having spasms.

However, now her breathing has becoming even more shallow and uneven. So, until she has recovered from the anethesia a little more, it will be a balancing act between controlling her pain and keeping the medicine at a low enough level to keep her breathing adequately.

ICU

We are in ICU.

We have seen Blaire move her legs and arms, and briefly open her eyes. She has woken up and complained of her discomfort, but then quickly fell back to sleep.

YAYYYYYYY! We are so thankful...

They want to keep her as sedated as possible today, and are closely monitoring her. She has so many tubes and drains and IV's and other equipment attached to her. It is quite amazing. But for now we are just thrilled to look at her and hold her hand.

Surgery is Over

That was a very tense 45 minutes, and for those of you who knew my mother I sure you can understand our concern.

However, the Doctor just came out and let us know Blaire has woken up. It just took her longer than they wanted, but she woke up and moved all her arms and legs.

He is VERY pleased with the surgery. He is pleased with the correction to her curvature that he was able to achieve and the amount of rotation he was able to remove from her spine.

We are now waiting in the ICU waiting room to see her.

Praise the Lord, for He is faithful and good.



Dr. Karlen views Blaire's x-rays before closing. The left side is after the screws were installed and the right x-rays is after the spine alignment. It looks great!

Urgent Update: please pray

The nurse just came out, and they are having trouble waking Blaire from the anethesia.

Please pray she wakes up soon.

Second Surgery Update

The nurse just came out again, and there is more good news. The rods have been installed and the spine has been straightened. The nurse does not know how straight her spine is, they will be taking another x-ray soon, but she thought it looked really good.

Now they will be doing a final tightening of all the screws and the vertebra fusing. This is when they take small pieces of her hip or rib bones and attaching them along side her vertebra.

Then they can close! The nurse thinks that the surgery should be over in about 1 to 1 1/2 more hours. The Surgeon will be coming out to see us then.

After that it will be another hour or so before we can see her in ICU.

We are so excited to see our precious Blaire. And we praise and thank the Lord that he is taking such good care of her.

Sorry for the graphic picture, but it is the one we were waiting for... Dr. Karlen is closing up her incision after all the work is done.

Surgery Update

The nurse came out of the operating room a few minutes to go to let us know that the Surgeons are finished installing the screws in her vertebra. All of her vital signs look really good. And they are ordering a second x-ray.

This is great news for us, they install the screws so close to the spinal column, and because they monitor all her nerves, we know that the column was not touched during this phase.

Next they will be inserting the rods into the screws, then the process of straightening her spine will begin.

Thank you all our friends and family for your wonderful messages, texts and prayers. We are getting them all, and really appreciate everyone's offers of help and support.

Dr. Karlen prepares for surgery (red cap)

Dr. Karlen and Dr. Greg White worked together to install the screws.

Surgery

Arrived at 6:00 am. We spoke to both the Surgeon and the Anethesiologist, and Blaire was given some medicine to relax her. She was still very anxious when we left her at the operating room doors, but we are assured she will be asleep within a few minutes. Here are the pre-op pictures. They are going to take pictures during surgery (Sorry Courtnie they won't do video, but Blaire told them to take lots of pics for you). Surgery should begin about 8:00 am... and the Surgeon believes it will take about 3 1/2 hours. God is good, and we know he is watching over Blaire and all her surgeons.

The Night Before

Over the last month we have been busy preparing for tomorrow. Blaire has donated blood twice in case she has needed it, she has given blood for tests and has had all her check-ups.



Now there is nothing for us to do... it is in God's and the Surgeon's hands... Blaire is prepared, and is now sleeping peacefully in her bed.



About a month ago we attended a tour at Phoenix Children's Hospital where they explained every detail of what her surgery was going to entail. They showed her the rooms she would be in, and all the equipment that they would be using. It was very informative and helpful.



There were two girls at this tour who had undergone the same surgery. One of the girls, Giselle Arnold, just had the surgery one year before. She exchanged facebook information with Blaire and has been sending her comforting and encouraging messages throughout this month. What an amazing young lady she is. Thank you Giselle for all your support.


And Gina Brown has generously offered to keep Grant tonight, tomorrow and Wednesday so the rest of us can be at the hospital during Blaire's surgery... Grant was so excited to spend time with Tommy, and we are so grateful.

I am overwhelmed by all the offers to help, and believe me, Suzanne, Laura, Carol, Carol, Karen, Michelle, Sabrina, Delaine, Sarah and everyone else, I will call upon you if I need you. As of now just your support and prayers are enough.

Good night and God bless

Posterior Spinal fusion surgery

I thought you might like a little information on what posterior spinal fusion surgery is all about.

If a child's spinal curvature is greater than 40 to 50 degrees, doctors typically recommend surgery to correct and to fuse the vertebrae along the spinal curve. Surgery may also be necessary for curves that occur in certain areas of the spine or for adults with scoliosis who suffer from pain.
Scoliosis surgery is one of the longest and most complicated orthopedic surgical procedures performed on children. The operation takes approximately six hours. Hospitalization can last several (usually around six) days, and activities are restricted for several months.
Surgery is most commonly performed through incisions in the back (referred to as a posterior surgical approach). For less common, very rigid, or severe curves, additional surgery may be required through the front or side of the body.

Posterior Spinal Fusion surgeons often use a modification of a two-rod system (or instrumentation) for spinal fusions, following a procedure that was invented in 1984 by two French surgeons named Ives Cotrel and Jean Dubosset. Two metal rods and hooks or screws are attached to the spine to provide as much correction as possible. Small pieces of the hip or rib bones are then grafted to the vertebra so a portion of the spine fuses (heals together) to hold the correction in place. The patient's ability to bend or move may be altered minimally.
The instrumentation is left in the body, even after the bones have fused, to avoid another surgery. In addition to supporting the fused area, instrumentation also applies force to the spine to help correct the deformity. This surgery may straighten the spinal curve considerably.

Blaire's surgeons

Dr. Judson Karlen on the left is Blaire's Surgeon and Dr. Greg White is another Surgeon with Phoenix Children's Hospital who will be assisting him. They are Orthopaedic Surgeons. Dr. Karlen's speciality is in Hip and spine deformity. Dr. White's speciality is in Scoliosis and spine deformity. We have great confidence in her surgeons, and they come with very high recommendations.

We are asking for prayer for these two men, that God will guide their hands and help them take really good care of Blaire.

Her surgery will be Tuesday morning at 7:30 am at Phoenix Children's Hospital.

Saturday and Sunday July 24-25

Blaire's Granny came in from Kentucky on Saturday to help out during this time. We are so thankful to have her here.

On Sunday, Blaire's aunts and uncles came over for dinner to wish her well. Her aunt Diane made her a quilt. The squares had been decorated by many of her friends and family. It is neat and special.

Friday July 23

Blaire saw her surgeon Dr. Karlen today. He did new x-rays and Blaire's back is now at 48 degrees. It is really good she is having the surgery soon.

Dr. Karlen ordered titanium rods. We are so pleased with this choice. They seem to be superior over the stainless steel rods.

Based on the x-rays, the surgeon found Blaire's lower back is very flexible, so he will be fusing her spine only to the L1 vertebra. She will be able to retain all the flexibility in her spine from the L1 vertebra down. This was wonderful news!

Blaire's spinal fusion surgery

This Blog will update everyone on Blaire's surgery and recovery. Your prayers, thoughts and well wishes are appreciated!