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Kaitlyn Paige Powers Welcome to Kaitlyn's Web Page. It has been provided to keep our friends and family updated about Kaitlyn.
PLEASE sign the guestbook! It gives us more support than you know!! Thank you!
On December 22, 2004 at 6pm Kaitlyn was diagnosed with a golf ball sized tumor on her cerebellum and brain stem. She concurrently had severe hydrocephalus. We received this news as the result of a CT scan that Jennifer had demanded. We received the news on the telephone and were told to go home, pack a bag and get her to Portland immediately and that she would likely be having surgery the next morning to take the tumor out and put a shunt in. We did as told with the help of some wonderful people. We got to Portland at 2am, checked into PICU (it hadn't occured to me, Jennifer, Kaitlyn's mom (a REGISTERED NURSE!!) that she would be admitted to PICU (shows how much I was able to think), slept for about 1/2 hour. We were woke up at 5am and her nurse told me to take Kaitlyn into the shower and bathe her and really scrub her hair with Hibiclens. We did that, returned to her room. As the doctor was trying to show us the CT of her tumor, they were taking her to MRI and we couldn't really look at the tumor. We went to MRI and she was sedated. We literally ran with her and the gurney to surgery after the MRI. She was in surgery for 8 hours. 90-95% of the tumor was removed. We were told that sometimes when that much of this particular tumor is removed that the remaining portion will die off. That was our prayer.
I'm sure a lot of you are curious about how we knew Kaitlyn had something wrong. She was very clumsy in dance and gymnastics class. I thought maybe she was just a clumsy little girl. One day at gymnastics it was obvious that wasn't the case. Me being the level-headed mother I was at the time (NOT!!) took her to the podiatrist, then the orthopedist, THEN the neurologist. The neurologist originally thought she had a Chiari Malformation. He ordered an MRI of her brain but it couldn't be done until late January (this was on December 21, 2004). At that moment, that was ok. He said Kaitlyn had nystagmus and wondered if her eye surgeon from UCLA had ever seen that. She'd had surgery for a lazy eye a couple of years earlier. I wasn't sure so I called UCLA and they returned my call the next day, December 22nd, 2004. His assistant said that he said Kaitlyn DEFINITELY never had nystagmus when he examined her and he last did that in May of 2004. The nystagmus was new since May of 2004! I immediately called the neurologist back and told them it was new and that I now wanted the MRI STAT!! They called me back and said the MRI facility could get Kaitlyn in a couple weeks later. I said, "That IS NOT STAT!! I want it today!" They said nobody in Medford could do that. Children require sedation for brain MRI's and nobody had an anesthesiologist available on such short notice (great service to our community huh?) So I drove to the neurologists office, stood at the desk bawling and told them I wanted an order right then for a STAT CT to rule out a bleed or a mass in her brain! The one smart thing I did in all of this. After a lot of tears, persistence and telling the medical assistant EXACTLY what she better go back in the room and tell the doctor, I got the order. I had Jeff (who had the kids) meet me at the hospital we both work at and we had the CT done. We knew the CT tech since we were both ER nurses and worked with him A LOT. He wouldn't let Jeff see the screen as the CT was progressing. We now know it was becasue he saw the mass and didn't want Jeff to see it right then. The neurologist (whom I really like) called us about an hour later and was sooo very kind in telling us about the tumor. I'm not being sarcastic. He had a hard job to do right then and handled it really well.
I remember bargaining with the Lord immediately after hanging up with the neurologist, 'if you will just let Kaitlyn live AND have a good quality of life (both are equally important to us) that we can go through anything Lord. Just please don't take my baby away from me! THAT I CAN'T HANDLE!!
Kaitlyn was in Doernbechers from Dec 23rd through the 29th. She was transferred to Legacy Emanuel for inpatient rehab as she couldn't walk, feed herself, write etc. She had to be transferred back to Doernbechers January 3rd as the temporary shunt had been removed before she went to rehab hoping she wouldn't need a permanent one. The hydrocephalus returned and she had to have a permanent VP shunt inserted. She went back to rehab on January 5th and was finally discharged home on February 4th. Kaitlyn's RIGHT side of her body was paralyzed after the brain tumor surgery and she was writing with her non-dominant left hand. She has gained all that back and is writing with her right hand again. Other than the facial paralysis you'd never guess how far she's come! My girl is a TROOPER!!
Kaitlyn and Colby
Kaitlyn and Oscar
Kaitlyn's first fish
Slide at Fair
Ninja boy
Teenage Vampire girl
Colby and Hannah
Whhoooaa Newt..
Kaitlyn P and Katelin M.
Colby and Oscar
Oscar as a cute Puppy
Prince
Oscar and Diego
Kaitlyn and Hannah
Colby in sissy's showercap
Colby hitting the ball
Homerun...running the bases.
Kaitlyn and Newt
Journal
Tuesday, December 23, 2008 11:32 AM PST Merry 2 days before CHRISTmas!!!
Did any of you notice that Kaitlyn's guestbook was signed by another mother named Jennifer Powers also with a child with a brain tumor? How wild is that? Jennifer, if you're reading this, I e-mailed you and would love to learn more about Brad.
Today is the 4 year anniversary or Kaitlyn's brain tumor resection (surgery).
OK, so yesterday I left off as the doctors were showing Jeff and I the CT done the night before. We literally only got to look at it for about a minute because they were wheeling Kaitlyn out of her room to MRI for her first MRI and Kaitlyn was getting scared because she thought we weren't going. We obviously followed. They did the MRI about 7 then practically ran with her to surgery. She was in surgery for 6-8 hours. It was then that Jeff and I were alone and coming to grips with this new reality. Actually I think it took a LOT longer for us to really absorb what was happening.
When Dr Selden (her neurosurgeon) came out he said she did great and he got 90-95f the tumor out. He said sometimes when this much of the tumor is removed, the rest dies off. He said sometimes they grow back immediately and sometimes they stay stable for a period of time then begin growing again. He said he couldn't get the entire tumor as the remaining part was in the floor of the 4th ventricle and she would have been very disabled.
I was never so happy to see her as I was after surgery. She was paralyzed on one side of her body (I think it was the right but can't be sure). It was that way for around 12 hours. That was terrifying. Her hair was full of dried blood and betadine/iodine and all tangled. Her head was shaved up the middle in the back, about 3 inches wide and a 3 inch x 3 inch patch just above her forehead on the right for the shunt. I was expecting much more shaving. I remember using one of those small black combs they give you at the hospital and pulling her hair forward, away from the incision, combing with water to clean it and putting tiny braids all over her head. I tied them with little red and pink bows the hospital gave me. I knew if I didn't do that her hair would be a horrible tangled mess by the time she was able to get out of the bed. It took a long time.
She was mad after surgery. I think because everything happened so fast but also because she couldn't move. She couldn't move her head AT ALL. We had to keep turning it so her neck didn't get stiff. We had it propped with rolled up receiving blankets. I kept occupied by making sure she was clean, positioned well, her bed was neat and she had all the stuffed animals where she could see them. Jeff would stay up with her at night while I slept in a small bed in the room for parents. He slept during the day and I was up with Kaitlyn. As much as any parent can sleep when their chld is in PICU. She had fabulous nurses. At one point she had an NG tube. Initially she had an external ventricular drain. That is basically a temporary shunt to drain the excess spinal fluid from the brain. It is done by gravity. I remember one of our favorite nurses had it raised too high and fluid/pressure was building up in her brain. Things were getting tense and he realized the mistake. No harm done but he felt horrible. I remember when Kaitlyn got out of bed for the first time. It took a nurse and the Physical Therapist to hold her body and legs, me to hold her head as she literally couldn't hold her own head up and Jeff to manipulate the chair. It was wonderful to see her out of bed!
On Christmas Day, Santa Claus came to the PICU. Was I blubbering like a baby or what? I will never be able to explain how thankful I was for that, how touched I was and how relieved I was. There were also many mixed emotions as I'm sure you can imagine. Kaitlyn wasn't letting us take her picture after surgery and very, very begrudgingly let them get a picture of her with Santa. She was laying in her bed and he leaned over her and they got the picture. She got the greatest gifts. They also made sure Colby was well taken care of too! SUCH RELIEF AND THANKS! Every day she was in the PICU they brought her a different stuffed animal. When you're admitted to PICU when you arrive in your room it already has a beautiful quilt on your bed that was made for you by a very special group of ladies. I also can't explain how that touched me. It helped for us to see her in the hospital bed but with a beautiful little pink quilt over her and not just the white bedding. We still have every quilt she got during her hospital stays. We will keep them forever. When she was transferred from PICU to Peds she had a great blue, wintery comforter on her bed.
Those are my memories of Christmas Day, 2004 in PICU. Hopefully all Kaitlyn remembers is Santa!
More to come tomorrow!
God Bless you and your families!
Jen
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Links: http://www.caringbridge.org/or/katelin
http://www.caringbridge.org/visit/cooperreynolds
http://www.flickr.com/photos/prayersforkaitlyn Family Photos
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