comfort level up

Last night was really rough for Fay. She could not get comfortable on the bed, and was in considerable pain. At one point in the middle of the night she was hurting so bad and was not able to get out a strong enough voice to wake me, so she did the next best thing and called me on my cell phone. (We are separated by about 9 feet!)

Today was better. We worked out a schedule of medications so that the level of the meds in her blood would always be the same. By the end of the day we could see a difference in her level of comfort.

Life just wouldn’t be the same without little Chase and his sweet sincerity. Tonight when he said his prayer, it went something like this:

Chase: "Dear Heavenly Father, Thank you for today and playing with Mommy and Daddy and Mean Grandma........."

You just cant’ help but love him. I used to think that Chase just thinks outside of the box, which I love! But I have to amend the statement a bit, Chase is not even in the box!!!

time to laugh

Our family has been blessed by so many who have taken us under their wing and has given us strength to w don't githstand the trials we have been through. I can't help but remember an old country song, (I don't know the exact words, but you will get the gist) if your going through hell, kepp on going, don't get out.... just keep on going. We're ready to "keep on going"! It's time to go home.

With all the tears and stress, it's time to laugh. After visiting with Fay yesterday, Chase and I went to visit my husband's old mission presidents wife. What a warm little firecracker! When Chase saw her on her driveway, he refused to get out of the car. It took words of flattery and a promised Ironman figure. Even with all that, I had to carry him inside. Once inside he took his time warming up. After ice cream and cupcakes he was comletely losened up as shows in the following conversation:

Chase: I know that lady. (pointing at me) She's my mean grandma. I have another grandma, she's my nice grandma. But she's (pointing to me) my mean grandma.

I wonder what would happen if the police stopped us and Chase said that? Maybe we shouldn't tempt any one!

He should have stayed in the car. Sister Berling fell in love with him!!

Another conversation: My mommy had an owy, and they had to unzip her and take the owy out, then zip her back up!

The first time Chase got to visit his mommy, he spent all his time searching Fay's hospital room. He wouldn't even give mommy a hug, he was on a mission! Finally we asked him what he was looking for. He said he was looking for the knife the doctor used to zip mommy up!

To Fay's Rexburg friends, ask Chase Sunday who his grandma is. Have fun hearing him describe me!!!!

new target!

Our new target for Fay is to bring her home tomorrow!!!! Please keep the prayers coming, there is a lot of healing to do. Sadly, Fay will be coming home on Methadone. As she heals she will be able to wean it down. She tried so hard not to need to take it. For our Rexburg friends, I know you are excited to have Fay home and to see her. Why don't you text her first and see if she is up to visits. If you don't get a reply from her you are welcome to call me or text me too. My number is 360-393-6054. Yeah!!!!!! Rexburg here we come!!!!!

Fay, Monday morning

Fay had a really bad night. The pain was as intense as it was in ICU. Late last night the doctors had a IV narcotics drip started on her. She was able to get a few hours of much needed rest. The plan is to bring her home tomorrow on Methedone and oxycodone. Non of us are too happy with the Methedone and hope it will be a very short time that whe is on it. :( Fay's Rexburg friends: Jared is coming home today. Maybe some can check in on him. He is such an amazing man. He stayed at Fay's side through all the rough times. He is my new hero!

Fay update

Fay's mom has been really tired and appologizes for not keeping the blog updated.

Fay had her chest tubes pulled yesterday. She was much more comfortable without them. She had her epidural pulled today. She thought she would be able to come home today, but she is having a hard time managing the pain. The doctor needs her to stay until her pain is managable. She wants to come home and is pretty upset that things weren't going the way "she" wants them to, but will wait.

Art work!

OUCH!

Friday pm

Picture from ICU. She is holding a long thick tube that was just pulled from her neck. Ouch! Fay is doing better today. Last night was so rough. She has not had any sleep for almost a week now. We all hope that tonight will be the night for rest.

the day after hell

It must have been the longest night ever for Fay. The pain was so out of control. It's got to get better. Right? Early this morning radiology came in to get a chest xray. The tech was as bad as they came. She roughly pushed the film canister under Fay without any care for the incision or epidural. When Fay cried out in pain and asked her to stop, she told her she had a job to do and that she had to do it that way. Sometimes it makes me wonder why these people paid money to gain the education needed to do a job that obviously they are not suited for. We are hoping that today will be better. That Fay can get some rest. That mom can get some rest too! Thanks for your prayers and support.

The "real size of the tumor" vs "assumed size"

Today we found out that the tumor, which was thought to be about 9X9X9 cm was really 14X12X12 cm. If my math is correct the real size, in volume, was 5 times what was originally thought. I think we can all say ouch.

Thursday, Day 1 towards recovery, AKA going through hell

Fay has had a pretty rough afternoon. She has not been able to manage the pain and is suffering from no sleep which makes the her pain even harder to take. Fay was on so much methadone, that she has built up a tolerance to some of her narcotics they are trying to use for pain management. They have her off the PCA machine (that's the "patient pushes the button herself and gets enough morphine to last 10 minutes" machine. She pushed every 10 minutes, and was still not doing well). They are working with IV push morphine combined with oral tablet. We are hoping that at some point things will start to work and she can get some rest.

Scratch the "pretty rough". She is so miserable that I heard her swear out loud while crying in pain. I'm her mom, I am not happy with her nurse tonight. Her PO2 is down to 75, with the alarm going off, and I don't feel like she is concerned enough. Fay will kill me for saying this, but until she does, I'll feel better "for having" said it!

Tome for some pics!

Fay is sitting up!!!! However, she is ready to lay down again!

Thursday am

I'm here at the hospital with Fay. She had a rough night last night. It's been difficult to find the right dosage and mix that will control the pain. She is off oxygen, but has a hard time not catching her breath. She is sitting up this morning and if there is room out on the Cardiac-Thoracic floor, they will move her out of ICU (yeah!) Jared stayed with her last night and he has gone home to try to get some sleep. Baby is doing well. Last night they got a scare when they were trying to get a heart beat, but they eventually found it and the little Slugger/Rock is in there and making himself known!

Fay and the pain

Just heard from Jared. They were able to up the dosage of her narcotic, and she is beginning to rest easier. Jared is amazing. I don't know how always manages to stay so calm and cool.

Fay in ICU

Fay is out of surgery. The doctor said it went much better than he had hoped. The tumor was much larger than thought. The doctor said it was the size of a cantaloupe. We don't know how she managed to breath with most of her lung capacity on the right side was taken up with the tumor. She is in ICU right now. I would love to say she is settled in and resting, but she is not. The doctors had Fay on Methadone for 3 weeks. She had developed a tolerance to it and when I left they were having a really hard time helping Fay to get her pain under control. She was crying when I left. It is going to be a long night for she and Jared.

She is in OR, and the recovery process can proceed

Fay was just taken back into surgery. We all feel good about the decision Fay and Jared have made to proceed with surgery. The last two months have been so hard for both of them. Finally we can look forward to "getting better". OR will contact us in about an hour. That is when they expect the doctor to make the incision. I will update then. Thanks for the love and prayers in her behalf, in her family's behalf and in the behalf of the doctors who will be tending her. Thank You!

March 1, 2011 Tomorrow's the big day!

It's almost here. Fay has met with her surgeon and has had contact with the other doctors who will be helping with the surgery. Fay is ready. She's ready to be done with all this and to start the recovery process. With the surgery, at least she can look forward to getting better, instead of continuing in pain and nausea. Her surgery is number two on the schedule. We will update during the surgery anytime we are updated as we wait. Fay is expected to spend one to two days in ICU. Mom (me) will feel much better when she is transfered out of ICU. Keep her and her doctors in you prayers.

Surgery date

After all Fay has been through this last couple of months, we feel the surgery team is now on the same page. Fay is scheduled for surgery at University of Utah on March 2nd. One of the biggests risks that will be encountered in this surgery is blood loss. The tumor is large and large tumors are often fed with quite an extensive vascular supply of blood. We will keep everyone updated as we get more information. Once Fay is in surgery, we will update as often as we can. Your prayers for Fay, Jared, Chase and Fay's doctor, Dr. Bull, are always so appreciated. They have strengthened us all. Your prayers have given us the strength to keep going when quitting sounds so much easier. Thank you to everyone.

Fay January 30, 2011

Fay is learning that she needs to take it easy or pay for it. She is struggling to get used to the medications she is taking and learning to redefine what a good day is. She is still vomiting and having a tough time keeping food down. Her pain level is much lower than it was last week. Her family continues to be grateful for your prayers and services. Tonight Sister Peck brought cookies over. They were so good! Thank you!

Fay, January 27

Fay has had a night to sleep on the news of a canceled surgery. She feels a little better about it, but is also asking that a Perinatologist be brought in for consult too. They are weaning her off the epideral and trying her on a different pain med. It was agreed that if the pain is not managed, then in two weeks she will have the surgery performed. It has been a very big roller-coaster ride. She's ready to get off! If everything goes well, she will be discharged tomorrow. Please keep the prayers coming. It has made a big difference. Just trust me on this one!

surgery canceled

Fay was to have surgery at 4:00 this afternoon, At 4:30 the doctor came into her room and told her that he was cancelling the surgery. Talk about a day filled with up and downs. The neurologists who were called in to consult, (neurology feels there is spinal involvement. But Dr. Bull does not really believe that, he feels the tumor is resting in an incostal nerve, and that is what is causing the pain.) feel that if the surgery goes Fay will loose the baby. Tumors of this size can be (doesn't mean it will be) very vascular. The blood lose would cause Fay to abort the baby. Neurology feels that Anesthesia can work with Fay with different forms of blocks that will allow her to manage her pain until she can give birth. This can present a problem too, how long do you wait? The doctor and Fay have agreed to give it two weeks. Then we might be back here again. The best senario is that the pain is managed and Fay can move on for a while. If not, we come do it all over again!

Fay, January 26

Fay had a rough night last night. We all hoped that the spinal block would help her control the pain she was feeling. During the night the pain increased to a point that it was no longer controllable or tolerable. Today they increased the strength of the block and also gave her Oxy-Cotton to get her through the rough times. Tonight she was experiencing some discomfort but was fine with it. Her surgery is tomorrow at 4:00pm Mountain time. I will post as often as I hear how she is doing. Remember she will be in ICU following surgery and then onto the Cardiac Unit when she is stable enough. Please keep her in your prayers. Those prayers have helped strengthen her as well as her family. Fay and Jared's wild little one told grandma (that's me) that I could go home now. Mommy didn't need me anymore!

Fay, January 24

We kind of had a real blow delivered today. So before I tell you what happened, I want you each to know that we believe when all is said and done, Fay will be okay.

We met with the surgeon today. He was very kind to Fay. We discussed what the surgery was going to involve and the magnitude of what needed to be done. The tumor is very large. Because of the size, they believe it will be very vascular also. This type of tumor usually presents itself with no pain. When there is pain, then comes the likelihood, that even though the biopsy came back negative, they're is a malignancy. The other reason for such intense pain is that possibly the tumor is involved with the spinal chord.

Fay was admitted today and a Thoracic nerve block was performed. (I don't think I said that right, but it's an epideral block, but higher up the spine.) When I left Fay tonight, she was comfortable. It has been a long two weeks of very intense pain. Surgery is set for Wednesday afternoon. From Surgery, Fay will be admitted into ICU. We hope to have her home in a week. The doctor said this surgery is in magnitude to that of open heart surgery.

Again, even with the blow we received today of the likelihood of a malignancy, we can't help but feel, when all is said and done, that Fay will be okay. If she needs more treatments after the birth of this little one, it will be okay. Please continue your prayers. They are a great support to us and Fay.

Fay had a rough night and rough morning. The tumor really has caused her a lot of pain. But the last couple of days, she has had a window of time in the middle of the day where she doesn't feel really bad. We like those times. Her doctor is changing her pain meds so they can find one that will take more of the pain away. We are all looking forward to this tumor thing being gone. During her better part of the day, we talked about having a "Schwannoma Fare Well". We'll see how tomorrow goes. Please don't quit on your prayers in her behalf. They are such a support for all of us. This is one of the greatest lessons I have learned., I had never looked at prayer as being a service. Keep on serving!!!!

Fay, January 21

Fay had a better night last night and was even able to eat some food today. She was able to sleep a bit and got dressed and even went to a store. Her pain is intense at times and difficult to control. Right now she is hurting so bad and will not let Jared or I call the doctor. We will wait a while longer and then call ourselves. Please continue your prayers.

Fay

Last night Fay got a little more rest. Her doctor her in Rexburg was able to help her piggy back some of her drugs so that the affect of them will last longer. She is pretty much in bed all the time. She has a hard time holding food down. She is trying to be patient, but trust me, that is not her forte! Guess where she gets that from? Not me!!!!!!!

Please keep praying for her. You just can't understand the magnitude of that service. Feel free to add your comment to this blog, I will give them to Fay to read.

Everyone..............Have a good day!