Hi all,
I am at a very difficult stage in life right now. All I need are prayers, love, and support. Let me know when I cross your mind, or let me know that you love me. These simple gestures really mean a lot to me, especially in this time in my life.
Always,
Kaitlyn
Me And My Sister!
I went back to the LPCH hospital on April 23rd. I was given another IV because I was severely dehydrated again. No surprise there. Then they transferred me over to another hospital called El Camino Hospital. Stanford rents out two units over there. One of which is called Comprehensive Care Program (CCP).
They put me in this unit which is for teens with eating disorders. I have to say I was very skeptical at first, and well…kind of pissed off they put me there. But I really think it helped me a little bit. At first, The nurses were all being very pushy telling me to drink more and didn’t understand gastric bypass surgery in the least. I got very frustrated and tired of telling each nurse everything they needed to know to take care of me.
I was there until May 2nd, when I was just starting to make progress with some pureed food and working with a counselor and Occupational Therapist to work through the pain. My insurance decided that I didn’t need “rehab” and wouldn’t answer the doctors calls. Three of my doctors and my surgeon were willing to have a conference call with the health insurance and they still did not answer the calls. I still have several doctors that want me to go back to CCP and they are still fighting with the insurance.
My insurace (Healthy Families/ HealthNet) has told my doctors that “Letting me go to Stanford and have surgery was a slip up in their paperwork.” And they no longer want to cover followup visits. Well guess what people, I HAVE to go back to Stanford now, whether you like it or not! So it looks like we’re in for another insurance fight.
As of right now, I’ve been in Chico for the past week and am going to stay for another week. I had an appointment at Stanford on the 20th but it was changed to the 27th because the adult surgeon, Dr. Morton won’t be there on the 20th. (who I have to see now, also because the pediactric surgeons don’t know what the hell to do with me). I think being in Chico has been really good for me. My sister, Angie is helping me a lot. She keeps me going.
After I got home from the hospital, (yes, I admit it) I gave up. Everything. All I was doing was sleeping all day, occasionally taking a walk. I stopped taking all my medication cold turkey and was drinking maybe 3 oz a day and half of a nutritional drink, which is about 100 calories. I’m doing a lot better than I was. I’m drinking 3-4 nutritional drinks per day and drinking 30-50 ounces a day. And with a lot of pushing from Angie I’m cautiously trying to eat a few foods. Honestly though, the smell of food makes me nauseious.
On top of all of this, Dr. Morton saw me on May 6th. He said if my pain and burning in my stomach had not gone away by the 20th (now the 27th) he wants to do an exploratory surgery and go into my closed off stomach and intestines.
Oh, and just for the icing on the cake, I had to make one of the hardest decisions of my life and put my baby girl, Daisy, to sleep on May 9th. She was 8 years old and had a bone tumor in her shoulder that was causing her a lot of pain. I love you baby and I miss you…
Daisy December 16th, 2000 – May 9th, 2009
One of the pictures Angie took of me out at Chico State. 
So…where to start? Hmm, I guess the beginning is always a good spot.
Thursday the 26th at 1:00am I woke up with a stabbing pain in my stomach. The pain gradually has gotten worse and worse. It hurt to drink, so I hadn’t drank much since Thursday and was “white as a ghost” according to my mom. I felt like I was going to blackout at any moment and barely made it into the hospital.
Saturday,the 28th at about 1:30 in the afternoon we ended up in the UC Davis Emergency Department. I was pale and ready to pass out, so after waiting for about an hour they let me lie down on a gourney in the hallway of the Pediatrics ED.
They immediately got an IV in me and a doctor came in and assessed me and my pain. They gave me dilotted (ugh, I hate the feeling of that stuff through the IV!) which makes my heart feel like it’s going to explode, but does help the pain immensely.
So, that knocked me out for a couple hours… a GI doctor came in and wasn’t very friendly. He asked my mom why we didn’t just have the surgery at UC Davis and was very nasty about it. Well, I didn’t go to UC Davis because they don’t do Pediatrics! After that, the GI doctor left and we didn’t hear from anyone until about 10:00pm when my nurse told my mom that they were admitting me to the hospital. I didn’t get up to a room until 12:30am!
We sat around at UC Davis for all day Sunday. The nurses were not very friendly, however I am comparing them to the Pediatric nurses I had at Lucile Packard Children’s Hospital 
My mom and step dad had stepped out to go eat lunch while I slept, (they gave me more dilotted). A different Resident doctor came in and asked me what my pain level was. I said an 8, and he said “You ready to go home?” I said I’d need to talk to my mom, who had also called Stanford’s doctor on call to see what we should do.
A new doctor came on duty at 7:00pm. My mom asked her if they could just discharge us and we’d go to Stanford the next morning. They agreed, but we didn’t get out of there until about 9:00pm. More waiting, and waiting, and waiting!
So, Monday we called Beth, my surgery coordinator. She said to come strait to Stanford’s ED so they could get an IV in me right away. I already felt like I was going to blackout again, just from being off the IV and liquids since 8:30 the night before. Dehydration is crazy stuff to mess with!
We got to Stanford, ended up having to use a wheelchair to get to the ED because I couldn’t walk straight. Beth had called ahead and told them I was coming, they got me right in and a doctor came in immediately after we were put in a room. Right away they put an IV in, drew some blood for tests, did a urine test, and then we were waiting for them to do all the admitting papers and find me a room.
I ended up in the exact same room I was in before! What are the chances of that happening?!?
I had (and still have) a whole surgery team working on my case. I have really stumped all the doctors this time. Of course, leave it to me! That has been the story of my life…unfortunately.
So, in these last two weeks, I have had…
Two CT Scans (one at UC Davis, one at Stanford)
One Stomach X-ray
One Upper GI test (or Barium Swallow Test)
Five blood tests
Several pokes to my gut/chest wall by several different doctors trying to figure out where/why/what my pain is
And of course…they all came back normal. Which is great, in a way. It means there’s no leak from my stomach, no twisted intestine, no hernia that needs emergency surgery. But, it also means that there is no explanation for the pain that I am still having that keeps getting worse.
One of the resident doctors came in and told me to “get out of bed and live my life like a normal teenager.” Yeah lady, I would LOVE to worry about “normal teenager” stuff…trust me!!! I do NOT want to be in this stupid hospital bed! And she pretty much implied that it was all in my head. I, and my mom were so frustrated. We told the Chief Resident doctor and he said he would “talk to her” and didn’t sound very happy about it at all. This was on Thursday, April 2nd (yes we were STILL at the hospital).
The whole time I was in the hospital they had me on Clear Liquids, which still hurt to drink but I could keep down okay. When I went home on Friday afternoon, they told me to just drink whatever I could get in. So, that’s what I’ve been doing.
Then, we had my post op appointment yesterday, April 8th. I saw Beth, Dr. Dutta (one of my surgeons), Ning (my nutritionist), and Dr. Bernard (the psychologist). Dr. Dutta thinks I may have cracked or fractured a rib while in surgery, because of all the instruments they used. That explains part of the pain, but not the pain from when I drink.
They put me back on the full liquid diet ( I had started to VERY slowly introduce pureed foods, which I would just throw up). However, today I have been drinking my protein shake from GNC, and I tried Boost Glucose Control (it has vitamins and protein in it and my nutritionists recommend it). And just about anything liquid has been coming back up too. This really scares me and I don’t know what to do.
I HAVE to drink even though it hurts. I can’t get dehydrated again, or I’ll end up back in the hospital. This, I have come to conclusions about. But what do I do now that I can’t keep barely any liquids down?
My mom is going to call Beth tomorrow and see what she says. We were supposed to touch bases in one week and then in two weeks if the pain wasn’t better they might do a Laproscopic procedure and a scope on my new and old stomach and intestines…the fun never ends does it?
Keep the prayers and encouragement coming! And thanks for taking the time to read this very long update!
Always,
Kaitlyn
Some pictures of Lucile Packard Children’s Hospital…
Hello to everyone who has been reading my blog. I have been admitted back into the hospital from 3/27 – 4/3. It has been a long, exhausting adventure of frustration and pain and tears along the way. I will update you all when I get enough energy up to write out all the details.
I am still in pain, and we go back on Wednesday for my one month follow up, so we’ll see what happens then. They think I have a stomach ulcer and put me on Aciphex for it, but if it doesn’t go away I may have to go to a GI doctor.
Keep the prayers coming, they are much appreciated!
Always,
Kaitlyn
I’ve been doing pretty good lately. I had an appointment on the 25th with the Physical Therapist, Nutritionist, Psychiatrist, and Surgeon and Nurse. It all went very well and they said to keep doing what I’m doing. Mostly working on exercise, getting enough fluids in and getting enough protein in. I have lost 20 pounds so far, in about three weeks.
However, last night at about 1:00am, I started getting a stabbing pain in my stomach. I don’t know why or what is causing it. We went to my primary care doctor today and she ordered an Urgent ultrasound of my abdomen, but I can’t get that done until Monday at the earliest because of insurance approval.
The pain hasn’t let up, even with Liquid Vicodin every four hours. I can’t get any liquids down because I feel extremely sick and nauseous when I do drink, and then my pain gets worse. Even when I drink the medicine. Definitely 10/10 on a 1-10 scale of pain. I just hope I do NOT end up back in the hospital on an IV because I can’t get fluids down. It’s always got to be something that goes wrong, right? At least with me it does!
This next week is going to be a rough one, so please keep me in your thoughts and prayers.
Always,
Kaitlyn
My surgery was March 12th at 7:30 am. I was very nervous and scared, and hadn’t slept at ALL the night before. Reality really hit me as soon as we walked into the hospital. I didn’t feel ready at all…but ready or not it was coming!
So, they checked my vitals and all that good stuff, I had to change into those icky hospital gown and the socks. If you know me well, you know I hate those stinking hospital socks!!! It took just two tries to get the first IV in. Yes, the first. I woke up with another in my other hand, and 8 puncture spots on my wrist wrapped in a thing of gauze. I later found out that this was used to give me blood pressure medicine during surgery.
After the surgery, I was in recovery for a long time. If it wasn’t for me asking for my mom, they wouldn’t of let her back for a couple more hours. My blood pressure kept getting higher and higher, because my pain was so bad. At one point it was 250/200! I woke up saying “It HURTS!” Which in answer they just gave me more morphine…which still wasn’t helping the pain.
So they put me on dilotted, which was just knocking me out, but I would wake up in a 10/10 pain still. So they put me on Oxycodone and Perkaset (spelling?) for now for every three hours. I have already been told by a couple friends to be very careful with Oxycodone. I should be off of it in ten days or so. I’m just glad my pain is tolerable now!
I ended up staying in the hospital until Tuesday March 17th. The pain specialists couldn’t get my pain under control. I don’t think I have ever been in so much pain. Each day has gotten a little bit better. I can get up with a little less soreness each morning, which is wonderful! I’m on the liquid diet right now, until next Wednesday. I go to my first follow up appointment Wednesday the 25th.
So far, besides the soreness and pain of the new stomach, I haven’t had anymore major pain. No nausea…yet. I’m still on the liquid diet so we’ll see if that changes when I start eating actual food. I am loving this feeling of not feeling hungry at all! It makes it challenging to get the protein in when you’re not hungry though. That goes back to eating to live, not living to eat!
All I can say is thank God for pudding, yogurt, and soup!My incisions are driving me crazy as they start healing. They’re extremely itchy!!!
This is going to be a journey full of major changes and challenges… Anyone care to join me?
Always,
Kaitlyn
I’ve been posting blogs about my upcoming surgery for awhile now. Some of them were full of excitement, some frustration (mostly with the insurance), and some of fear and trying to find my faith.
As the surgery gets closer (March 12th), I am having stronger and stronger mixes of all of these feelings. The frustration with the insurance is gone, they finally approved my surgery yesterday! But all of the other feelings, fear, excitement, doubt, and trying to find where my faith lies in all of this…those feelings are all still there.
Thank you for your continued prayers throughout all of these doctors and surgeries. I will update as soon as I am home and feeling up to it.
Always,
Kaitlyn
This past week, I have been on a mostly all liquid diet, as prep for my surgery next Thursday. It has made me realize how much this nation revolves around food. Every other commercial on TV is food/restaurant related. Every add in a magazine is food related. Americans revolve around food. People are living to eat, not eating to live.
I realize that I may have been one of these people…but I am ready for this change. I am going to start eating to live. My hope for this surgery is that it helps me to not go to food when I am overwhelmed with emotions, but to instead talk it out, whether that be with my mom or a friend or God. But I am not going to go to food to cover up my emotions. Obviously, it hasn’t helped, but has drug me deeper into my pit of emotions.
Thank you God for providing a surgery date and carrying me through this. Remind me everyday to trust you and lean on you in everything through these next few months.
More Later,
Kait
Yes, I know I just had surgery, but… here goes another one!
As we were driving up to Chico Friday afternoon, I got a call from Beth, the surgery coordinator at Stanford. She said they had a surgery date for March 12th and wanted to know if we could work with them since it was so close. US work with THEM? Umm…duh! It’s only taken five months for a surgery date to come around, I am NOT waiting for the next one!
So, this Thursday we have to go to the hospital for an all day pre-op appointment. We have to BE there at 8 AM, which means we have to leave at about 5 AM! Ugh.
The part that stinks is these next two weeks I have to do a “liquid” diet. I have to drink Boost drinks and I can also have yogurt, pudding, jello…etc. It’s okay, could be worse I guess.
Now all we have to do is PRAY. Because we still have not gotten an approval from the insurance. We could not know until the day before surgery, but I PRAY that it will happen before that.
So…ten more days. I CAN do this. Sis, I’m going to need your support on this. It’s only the first day of this liquid junk and I am already having a hard time…
Of course I am nervous, but I have been thinking about all this worrying that I seem to do so much…it is getting beyond ridiculous. The other night, I made the decision in my head I was not going to worry about this surgery. I know God has it in His hands and has complete control. If something does go wrong, it’s just part of His plan. I know He will guide and comfort me through this major change in my life. As soon as I silently made that decision, it was like a huge load was lifted off my shoulders!
For those of you who don’t know what Gastric Bypass is, check this out...
Always,
Kait
I have been counting down the days! 2 1/2 more!
This Friday we’re headed off to Chico again. My mom has a doctors appointment on Friday, because she has been really sick lately. I am really worried about her, please pray for her.
I hope to see my bestest friends Lindsey and Kathleen on Friday afternoon, but the details haven’t been made out yet.
And of course, I am excited to see my big sis, and stay the night with her and mom on Friday and maybe Saturday too…again, details have not been worked out. I am hoping I will have Saturday night with her, since I won’t be able to see her for awhile after this weekend. Mom says I need to focus on school more. Ugh.
Also, probably next week, I am getting an ultrasound done on my ovaries to check for cysts and what-not. I’m not sure what is causing my pain. I am SO fed up with the surgeon for the gastric bypass in Stanford. Still no surgery date, which means it will definitely NOT be in March, but now they’re saying “Maybe April…” (or May, June, July or August) !!!
And I just got a letter in the mail from HealthNet, saying they are not approving me seeing Dr. Garrison! So what does that mean, they’re not going to pay for the surgery I had last Tuesday??? Someone from HealthNet called my mom to tell her they had approved it! I hate health insurance! And I love my mommy so much for fighting with them for me for so long.
On a lighter note, I went to school today for the first time in about a week and a half. I finished my English 3A Unit 3 test, and passed it with an A (only missing one question!). And I finally got another elective class called Independent Living. It sounded kind of fun…teaches you how to cook and sew and live on your own, which I need to do sometime in the next year or so.
That’s pretty much all for now!
~Kaitlyn
