La Siesta Grande
|Posted on October 28, 2011 at 6:15 AM||comments (1)|
Hello everyone! Sorry for the delay in updating the blog, but a lot has happened in the past few months since my most recent trip to Monterrey. When I returned from my surgery and big boosters, I was feeling the best I have ever felt since having RSD, and I had just had surgery for crying out loud! This was truly a miracle we could have only dreamed of! I owe it all to Dr. Cantu and my wonderful medical team at San Jose, and of course my family and friends for making another trip of healing possible for me.
During this time of feeling on top of the world, the Jarvis family welcomed in a Golden Retriever puppy named Boomer who was a special gift from my Nana and Pop-Pop. Since our other golden, Moe, died in 2007, we have wanted to get another dog but knew we had to wait until all of my Mexico trips were over. Little Boomer makes me smile every single day, and I feel so lucky to have him! I know the rest of the family, including our chocolate lab, Hershey, feels the same!
Another dream I was able to realize was going to a Taylor Swift concert. When I was in Mexico the first time, the only thing I wanted to listen to was Taylor Swift music during those rough couple of weeks after my coma, so when the tickets went on sale earlier in the year, my mom bought us handicap accessible seats to put away for my birthday. Months ago, it was only a far off dream that I would be well enough to attend, but we knew this surgery was coming up and came along with the big boosters. As many of you know, RSD can cause extreme sensitivity to vibrations that translate in a patient's body as pain signals. Concerts are made up of many many of those vibrations, so this goes to show you how well I was doing when I was able to actually go! I packaged myself up in my wheelchair with pillows, put in my earplugs, took some of my break through pain medication, and was the happiest girl in the world. I was so happy that I was fortunate enough to experience this special moment with my mom at this amazing concert that I couldn’t have imagined myself being able to go to in a million years that I started to cry. If you know my mom, you know she started to cry too! She cried during "TheDevil Wears Prada" so of course she was crying! I was so lucky to have these incredible 2 weeks where I was feeling so good, and I would like to take a moment to say thank you to all of you who made it possible!
As you probably noticed, I said 2 weeks, so the story is about to change. Don't worry, because it's not all bad. As part of the protocol for having surgery with ketamine, you have to go for boosters more frequently afterward to keep you feeling good. When I went for my first round of boosters in Philly, the nurses had some difficulties getting my vein. I really only have one good vein to get anymore, and it seems for now, it's seen better days. It took 5 tries to get a vein, and with RSD, that is not good. My whole body went into spasms, and to an outsider it looked like I was having a seizure. This is the way my RSD reacts when it's trying to say "Okay! Enough already! I've had enough and I'm done!". After a little while, my body calmed down, and I was able to receive the treatments for the 2 days. Unfortunately, even after having the 2 days of treatments I was not only worse off than before I walked in the door, but I was feeling the worst I had felt since my coma.
Different treatment options have been discussed. One option is to simply try again and go for a booster, but the bruising hasn't completely healed from the last time, and it's been 2 months. I don't think my veins and the rest of my body are ready to try again right now. Another option is to have a port put in, but after taking so much care to ensure the last surgery would go well, why would I want to rush into this surgery? I have decided to go with another option. I have added a wonderful pain management doctor named Dr. Lin to my medical team. I am trying a couple different medications to see if we can get the pain levels under control enough to return to heated pool therapy. Right now, I feel that I am still too sensitive and the water could do more harm than good. It's taken a couple of weeks, but I feel that I am headed in the right direction with the medications. With some more time and a few more adjustments with the medications, I hope to get back to pool therapy very soon.
A few changes have been happening at the Jarvis household. Since we moved here, I have always had the bigger room, and Erin has had the small room. Our plan was to switch rooms when I went off to grad school in a few months. With the turn of recent events and a slight change of heart, I decided I didn't want to go away to school anymore because I'm not sure I could physically handle it again. Just because I changed my mind about that, didn't mean it would be fair not to give my little sis a change with the bigger bedroom. After talking it over with the family, we decided it would probably be best if we were going to be playing musical rooms to give me a room on the first floor so I didn't ever have to worry about not being able to make it up the stairs. My family was generous enough to give up the family room for me, which has been my temporary room on and off over the past years. I now have a beautiful new bedroom that is easily accessible and where I can feel more independent. Let me tell you, this has completely changed my life for the better, and I can't thank them enough! Next on the list of renovations is Erin's new room. When that's all done, Erin's old room will become the new office/ Jeff's room / guest room. Wish us luck!
I also have a few announcements to make. This past summer I was fortunate enough to graduate from Stockton College with my Bachelors degree in Psychology and a minor in Holistic Health. My plan was to move onto grad school in the spring to get my Masters in Library Science. This most recent flare up has given me a bit of time to think about my future. I know I want to work in a library again, but I'm not sure if it makes sense to take out all the loans for grad school if there is a chance by the time I'm done I may not be well enough to work. After much research, I have decided to apply to Northampton Community College to get my Library Technical Assistant certification. This will involve 5 (but I wantto take all 6!) online courses that will only take 2 semesters. This will allow me to live at home, spend time with my family, and take the time I need to continue to get better.
My other exciting announcement is that four years ago I was an extra in a movie called "The Mighty Macs". Over the years I have been very lucky that incredible opportunities have come to me during times when I was feeling good. One day my good friend Alexis called me up to say she was going to be an extra in this movie and would I like to join her. Of courseI said yes! It took a long for the movie to make it to theaters, but now we are on the big screen! Our families went to see the movie the other night, and we had so much fun finding ourselves in the background!
Thank you again everyone for all your support over the years! You have made some miracles happen! Please pray for all people affected by invisible illnesses such as RSD, including their families. Please pray that one day there will be a cure. And please pray for all the doctors and their teams who dedicate their lives to helping those of us with RSD like Dr. Cantu, Dr. Luis, Dr. Schwartzman, and Dr. Lin because we would be lost without them!
|Posted on August 4, 2011 at 1:37 AM||comments (5)|
The last few days have felt a bit like a whirlwind, but so much good has come. We spent our first night back at the hotel Sunday night, but when Kerri seemed very sick on Monday we called Dr. Cantu. It turns out one of the medications she was taking to control the pain from surgery and RSD can make you feel like you have the flu. He suggested stopping that one and within a few hours she really started to bounce back. She started smiling again and was able to eat more than just a bite or two of soft foods. Mark and Erin enjoyed one more terrific visit with Jessica and Sarah while Kerri rested up to be able to make the journey home on Tuesday.
Dr. Cantu visited Kerri at the hotel on Tuesday morning before we left for the airport. He got quite the surprise when he saw her, amazed at how good she looked. The trip was long but she was quite a trooper and made it through the day. We arrived home at midnight and were greeted by a very happy pooch, eager to catch up on some fetch and cuddles. Thanks to Kristin he had a great time while we were gone. He opted to snuggle on Erin’s fuzzy rug to be close to all of us to go to sleep last night.
We had an interesting experience flying from Atlanta to Philly. Because of Kerri needing her wheelchair we are usually some of the first ones to get onto a plane, but the last ones off. As we were getting on a woman sat down 2 rows ahead of us with pizza. Another woman coming down the aisle saw it and mentioned that she would like some, so the woman gave her the pizza. We commented to ourselves what a nice thing that was for her to do.
After the flight, we learned from the flight attendant that the “random act of kindness” woman was Patti Labelle! The flight attendant didn’t know she was on the flight. It was one of the workers in the jet way that commented to the women as she got off the plane that she looked just like Patti Labelle, to which the woman replied “I am Patti”. Erin has decided that from now on if she flies, she should probably take everyone’s picture in case someone is famous! (By the way we have neglected to mention that on Saturday afternoon, Erin was treated to some iced coffee at the coffee shop in the hospital by Dr. Cantu and Dr. Luis. They not only treated Kerri better than we could have ever hoped for, but made Erin feel quite special too!)
Kerri will be examined by our dentist, Dr. Wright, tomorrow to make sure everything is healing well. In 2 weeks she will start another round of low dose intravenous infusions in Philadelphia with Dr. Schwartzman. After surgery, these treatments are needed again more frequently to keep the total body RSD symptoms at bay. We are very fortunate that everything has gone so well.
I looked up some of the lyrics for Patti Labelle’s songs today. This particular chorus reminded me how blessed we are to have all of you – our family, friends, doctors, and very special fellow RSD patients and families. Please keep them all in your prayers.
Hold on to me and we’ll be stronger
Together, stronger forever
Gotta have a little faith
To help us see things through
(This I know is true)
Sunset from the flight home
Thank you! Kathy, Mark, Kerri and Erin
|Posted on July 31, 2011 at 11:43 PM||comments (7)|
Hi everyone! Sorry we didn’t write sooner but the past 24 hours have been a little more difficult. Last night Kerri started to get pretty severe RSD pain down her left leg and right hand. We became quite worried that the total body RSD symptoms were all coming back that she had before the coma. We called the wonderful Dr. Cantu at home and he quickly helped to put us a bit more at ease. As always, he had a plan. He had the nurse administer one medication through her IV central line and when that didn’t help much he ordered something else which definitely helped and allowed her to get some rest. We thought the discharge plan would have to be postponed. Dr. Cantu told us not to worry that he would keep her at the hospital as long as she needed. But our prayers were answered and she woke up this morning feeling a little bit better and really wanting to leave the hospital.
We came to the hotel this afternoon. The trip was difficult leaving her exhausted and not feeling well. But that is to be expected with all that she’s been through this week. Thanks to our friends Jessica and Sarah, we had a wonderful driver who really took the time to drive very slowly and carefully. He had a van where we could just push her wheelchair up a ramp and he secured her carefully staying right in the wheelchair. I really thing she will start to feel better tomorrow. She can just rest in bed Monday and we hope to fly home on Tuesday.
Just in case you were curious, we found out that the tooth fairy comes to Monterrey, Mexico! She left some PESO coins under Kerri’s pillow the night after her surgery. All sorts of wonderful magic happens here!
Thanks for all of your prayers and wonderful notes to us. We really appreciate it – love and miss you all!
Kathy, Mark, Kerri and Erin
|Posted on July 29, 2011 at 9:39 PM||comments (7)|
Hi all! Kerri has made it through her 3rd booster without any major problems. These treatments are a bit rough to go through physically and emotionally. Dr. Cantu is very pleased that there have been no RSD flare ups in other parts of her body and she’s done so well that he said we may be able to stop the boosters now. She’ll remain in the hospital for a few more days so they can monitor her closely as all the medications are lowered. He spent at least 2 hours with her watching over her carefully, answering all of our questions (I tend to be a bit of overprotective, “we need to know everything” Mom when we come here – the people in this hospital are quite patient with me!), and visiting with us.
We find it quite sweet that each day during the boosters, Kerri holds her hands together and holds onto her ring from Jeff. Jeff, you are always on her mind and she loves you very, very much!
We have another little side note about the nice things people do for us here. On the first night we were here at the hospital, Erin and I were in the cafeteria. The manager remembered us from last year. I was looking for some pepper to bring up for Kerri for her mashed potatoes. When I asked for pepper, the manager smiled and showed me where the shaker was but told me to wait “un momento”. She came back in a minute with a specially prepared container of special “robusto” pepper to last Kerri for the week. Kerri has enjoyed it and felt special.
Thanks again for all of your prayers and for writing to us – it definitely makes us all feel closer to home and very reassured.
|Posted on July 29, 2011 at 4:29 AM||comments (8)|
Kerri had her second round of boosters and did better with them. She was more tired afterward, but felt the booster itself went more smoothly than on the first day.
Erin spent the day with our friends Sara and Jessica. She went shopping at one of Monterrey's largest malls, which is quite large and is across the street from the hotel where the President of Mexico stays at when he visits Monterrey. She was treated to many flavors of frozen yogurt while shopping at the mall, and took numerous pictures of the bunnies and other animals in the pet store.
Erin then got to spend the afternoon and evening visiting with Jessica. They spent several hours in the warm sunshine playing UNO, trivial pursuit, and just talking and laughing. They also managed to nearly finish the entire batch of chocolate chip cookies Sarah and Jessica had baked. Erin and Mark then had a wonderful dinner or stuffed peppers and spagetti pie that Sara prepared. We are sure that both Erin and Jessica will sleep well tonight.
We also met the mother of a young patient at Hospital San José (through our friends Sara and Jessica) with a rare condition, so rare that he is the only person in Mexico with his condition. There are no specialists for his condition in Mexico, so he travels all the way to Dupont Childrens' Hospital in Delaware where he sees the same doctor that originally diagnosed Kerri with her RSD. It is just another demonstration of what a small world we live in.
We look forward to Kerri having the opportunity to visit with Jessica and spending time doing whatever they will feel like after Kerri is released from the hospital. Thank you again Sara and Jessica for being such good friends. Good night and God Bless.
|Posted on July 27, 2011 at 11:00 PM||comments (5)|
As expected for the day after surgery, things were a little more rough for Kerri today but overall everything is still going very well. The oral surgeon visited this morning and was very happy with how little swelling there is. He feels Kerri is doing great! She had more pain today but this is to be expected after having 4 wisdom teeth out yesterday. When RSD is in the picture, pain is amplified, so the medical team is trying very hard to keep her comfortable. She had a 2 hour high dose booster infusion this afternoon with Dr. Luis, Dr. Cantu's partner, at her bedside the whole time. Seeing Dr. Luis again was wonderful and he couldn't get over how well Kerri looked since last year. Kerri woke up about 2 hours after the infusion was done. The treatment was unsettling for her but she is on board for the 3 or 4 more days of infusion to come. She is quite a trooper! She was able to start eating some soft foods today and enjoyed some mashed potatoes. Each day she's unable to eat or drink for 6 hours before the infusion, so by the time she woke up she was very hungry and thirsty.
Mark stayed right by Kerri for the infusion so I was treated to lunch with Erin at the hospital coffee shop and a little time soaking up the beautiful Monterrey sunshine in front of the hospital.
We love and miss you all very much. Kerri really loves having us read the comments you are sending to all of us. It is definitely one of the high points of our days here! Thanks.
Kathy, Mark, Kerri and Erin
|Posted on July 26, 2011 at 10:54 PM||comments (7)|
Kerri's surgery went very well with no complications and so far and no RSD flare-ups. Shortly before she was taken down to pre-op some wonderful things happened to help ease her mind and feel well enough to tackle the surgery! First Kerri's wonderful friend Jessica called to let her know she and her Mom were praying for her and to tell she can't wait for them to get together again. This call did so much to cheer Kerri up. Then our wonderful nurse Erica came to reassure Kerri and told her she had surgery with the same oral surgeon Kerri was having. Then the nurse Martha, who we told you about yesterday, came all the way up here to personally escort Kerri to surgery.
Just before she was wheeled down, another amazing nurse (who has stayed in touch with Kerri via facebook since taking care of her after the coma) came in when she wasn't even working to see Kerri off to surgery and brought her a beautiful angel who says prayers in Spanish. She told Kerri it is her job to translate the prayer and let her know what it says. This wonderful friend's name is Angeles, so the Angel was so perfect! Martha followed Kerri all the way into the operating room to reassure her and told her "I will stay with you until they kick me out!" Although Kerri is having pain, it is not nearly as bad as she feared. She is able to walk to the couch in her room even though she has an IV pole with 3 pumps and 3 bottles. She is on a liquid diet and enjoyed some creamy lemon water ice tonight (nieve limon).
We also were blessed last night by a wonderful visit at the hospital with our friends who live here in Monterrey, Gerardo, his wife Vivian, and their daughter Cynthia. They helped us immensely last year and took time from their busy schedules to come spend time here with our family and wish Kerri well for her surgery. Thank you so much and again Happy Birthday Cynthia!
Mark and Erin headed back to the hotel a little earlier tonight to do some laundry for us. They are so very relieved and grateful that there wonderful hija and hermana is doing so well. Love you Mark and Erin!!!
Please thank Dr. Cantu and Dr. Jorge and the amazing team at Hospital San Jose in your prayers tonight for their outstanding care and compassion. Thank you so much, family and friends for all that you do for us. We love you.
|Posted on July 25, 2011 at 10:26 PM||comments (4)|
Same place but so many different feelings! We know Kerri still has a lot to endure this week, but so far this time she is having such a different experience here. While last year she was really too sick to leave the hospital bed for more that a few minutes and wasn’t able to leave her hospital room until the night before she was discharged, this time around she is sitting on the couch in her hospital room looking out the window at the beautiful mountains. She is talking, laughing and joking. She is noticing the magic of Monterrey!
We have spoken with other Hospital San Jose RSD families about how God is always watching over us and helping to create situations that show us how blessed we are. Today this happened once again right before she went into her first surgery to install a central line for the medication access she will need for the rest of the week. They let me ride down in the patient elevator with her and I needed to explain to the OR nurse that the long pillow under her leg was brought from home (Kerri’s body pillow that has been a vital part of her “RSD coping system” for many years.) I wasn’t doing a very good job with my Spanish so the nurse from the ambulatory unit OR called for a nurse from the other OR unit to come over and help translate. Low and behold along comes a wonderful girl named Martha (pronounced Marta) who used to work on the 8th floor where we spent several weeks last year. She remembered Kerri and all of us and quickly helped to put Kerri more at ease. She remembered meeting Jeff last year and asked when Kerri was getting married (before we mentioned anything about it). Before we knew it, she was calling over to her supervisor to let him know she’d be taking care of Kerri and will also be there for her surgery tomorrow.
The procedure today went well with no complications. Kerri had pain afterwards but this has subsided quite a bit. Dr. Cantu decided to start the high dose treatments the day after tomorrow, so tonight Kerri is able to enjoy some hospital cuisine (the hospital food here is nothing like the hospital food at home – it’s all freshly prepared and actually tastes very good) and rest a bit. She will have her surgery tomorrow around noon. We got to meet the oral surgeon today who works with Dr. Cantu and seems great. He seems to understand the extenuating circumstances with RSD patients and dental procedures (very tricky!). We like and trust him already.
OK everyone – ready for the exciting Monterrey trivia for today? Mark and Erin went shopping at HEB last night, the Wal-Mart type store in the same parking lot as the hotel. First we must let you know Kerri’s favorite drink when we were here for the month last time was “Mucho Mango” juice. Well while they could not find that for her yet this time around, they struck gold. They found Power Puff girls mango juice. Yes we know all you former power puff girls fans are quite jealous now!
Have a wonderful night – miss you all.
Kathy, Mark, Kerri and Erin
|Posted on July 24, 2011 at 6:50 PM||comments (7)|
We are very happy to report Kerri is all settled in at Hospital San Jose Tec de Monterrey. Many feelings came across us all upon revisiting the place where so much transpired last year – some not so pleasant memories but also a reassuring feeling of coming back to the people who know best how to make Kerri well. The admission was a little different this time because the person helping us did not speak English, but all went well. It sure is less stressful coming back up to the beautiful views on the 8th floor for elective surgery as compared to last year going straight to the ICU for a coma. We were welcomed by a warm, friendly staff and were especially happy to reunite with Erika, one of the bilingual nurses who took take of Kerri last year. Dr. Cantu came by shortly after we arrived and spent over an hour with us, taking the time to “catch up” and working carefully to start an IV access in the least uncomfortable part of Kerri’s arm. (As fellow RSD patients can greatly appreciate, someone who is able to access a vein on the first try makes all the difference in the world. After having so many times of needing IV treatments, starting a line is difficult. She goes through a ritual of drinking many water bottles and using a heating pad to increase the chances of not having to be “stuck” too many times. Thank you, Dr. Cantu!)
Dr. Cantu explained everything that is expected to happen this week. He started a continuous ketamine infusion today. Tomorrow she will be taken to ambulatory surgery to have a central IV line inserted. This will make the rest of the treatments she’ll need this week much easier. Afterwards, she’ll have a high dose ketamine booster to help prepare her body for the surgery. The wisdom teeth removal has been moved to Tuesday around noon and should last a few hours. Then Kerri will have more boosters probably through Saturday. The plan is that she may be able to go back to the hotel by Saturday night or Sunday.
Kerri is resting pretty comfortably now, except for a little bit of arm soreness from the IV. Everyone is so nice here – even the cafeteria manager said she remembers us from last year. We got to speak to Sarah and Jessica on Skype and they even helped translate for us with the nurse – we are feeling quite pampered!
Thank you for helping us “keep in touch!”
|Posted on July 24, 2011 at 12:50 AM||comments (2)|
We are writing once again from the beautiful place where miracles happen for Kerri as well as so many wonderful RSD patients and families. We have known for 6 years now that Kerri needs to have her wisdom teeth removed and she was actually scheduled to have the procedure back in 2005 at a nearby hospital. At that time she became fully paralyzed so needless to say, we cancelled. Since then the wisdom teeth have certainly taken a back burner to other medical issues. We were told surgery was too risky before with the total body RSD symptoms and then needed to wait at least a year past her coma to consider the procedure. Since coming home from the coma (so very much better than before!), Kerri’s jaw, teeth and facial area have continued to be the problematic areas. After the coma we could actually hug our daughter for the first time in many, many years but ironically we could no longer kiss her on the cheek due to pain. Also her jaw would sometimes “lock up” for extended periods of time especially when entering a cold area, leaving her unable to speak or eat.
The past year has brought some tremendous improvement with Kerri using her wheelchair only for long distances. She has continued to require low dose ketamine boosters every 2-3 months with Dr. Schwartzman in Philadelphia and his amazing team. Kerri was able to go back to college and complete her undergraduate degree at Stockton. While RSD symptoms have continued to affect her life each day, she has been blessed with being able to do so much more, most importantly to begin to really enjoy life again, smile more, laugh more and enjoy so many things we often take for granted. Since the wisdom teeth symptoms have begun to elicit some RSD flare ups in other parts ofher body now, we have traveled back to see Dr. Cantu in Monterrey, Mexico, where Kerri can safely have the oral surgery to try and prevent her condition from regressing. The procedure is too risky to be done in the US because she requires high doses of IV medication before, during and after the surgery to help prevent the total body pain and weakness from returning. Since these medication dosages are not yet used in the US, we’ve come back to Hospital San Jose tec de Monterrey.
It has been a bit of a whirlwind week. We found out we were coming on Sunday and flew to Monterrey on Friday. We were treated to some amazing pasta sauce and pizza from our friends John and Rosemary the day before we flew here (with leftovers frozen for when we come back!). Today was Kerri’s 23rd birthday and I can’t begin to tell you how much we enjoyed visiting with our friends Jessica and Sarah here in Monterrey. Jessica is an amazing young woman whose health has been improving through an almost 2 year stay here in Monterrey. She has overcome so many obstacles- she and her Mom are such inspiration to all of us and the most wonderful ambassadors to families who travel here for treatment. Kerri was surprised by the most wonderful birthday celebration ever. We arrived at Sarah and Jessica’s apartment to birthday decorations on the door, the most delicious and never ending afternoon of food, and a fantastic birthday cake made by Jessica and Sarah decorated with the colors of Mexico. Of course spending time catching up with them was the best part of all. Thank you Jessica and Sarah for a magical day and for all or your help getting around Monterrey.
Kerri will be admitted to the hospital tomorrow to start her medication infusions, have surgery on Monday and probably spend about 5 days afterwards being treated to try and keep the post surgery RSD under control. We will keep everyone updated. Thank you all once again for making Kerri’s recovery possible and for all of your prayers and well wishes.