Posted on 04/13/2002 8:08:34 PM PDT by TMD
Four weeks ago today we left our home to go to the California State Finals of the Destination Imagination creative competition in Fresno and on a Spring Break camping trip to Yosemite, but we never quite made it all the way there. That evening we went to the Macaroni Grill in Fresno for dinner with the Destination Imagination team of seven 6th graders I coach from Rolling Hills Middle School and their families. It was a jovial night, but Kaitlyn didn't order dinner so we knew she didn't feel well, such began our odyssey...
Brad and I have just returned this afternoon from attending the Friday Family meeting at the Ronald McDonald House. We were feeling kind of blue today and far away from our home, Kelly, our pets and friends. At the meeting there was a woman from Egypt who has been here since Christmas with her daughter who is suffering from Leukemia and had a relapse during their vacation and a man from Japan who had brought his two-year old daughter to the United States for a heart transplant which they do not allow in Japan. It somehow made us feel not so far away after all, and the love and support we receive daily from all of you really is what is helping us get through this ordeal.
Yesterday they allowed me to climb into bed with Kaitlyn and hold her. So I finally got to give her a hug for all of you. It took about 30 minutes of maneuvering tubes and wires and various other items, but I put on a gown and hat and laid next to her for 45 minutes or so. She was pretty asleep during most of the time, but I hope she could sense my presence and was reassured somehow.
Kaitlyn is on Day 26 today and she is about the same. She is still on the ventilator and they have talked about turning the pressure settings down another notch today, but have not done so yet. She is starting to take small breaths on her own which will help her lungs and diaphragm grow stronger. The plan is to wean her off the ventilator, but know one knows how long that might take, perhaps 1-2 weeks. They plan to replace the traceostomy some time next week and do the bronchosopy to see what is up with her lungs.
The biggest concern now is the infections - both yeast and bacterial. The experts from "ID" Infectious Disease are now monitoring her case. They have switched yet again her antibiotic and anti-fungal medications and they are monitoring her white blood count, temperature, etc. closely. Today they did another ultrasound of her heart to make sure the infection has not spread there, but we don't have the results back yet. So far all the cultures they did two days ago are negative, but it can take 36 hours to grow in the lab. We need to make it through this period without a new infection! They describe her condition as being a "sitting duck" ripe for infection with lots of exposed, moist skin.
The next biggest concern is feeding her. Since that McDonald's Happy Meal four weeks ago today, she has been sustained on some yellow liquid nutrients called TPN, Pedialyte and a very small amount of baby formula. They stopped the Pedialyte and formula feedings yesterday because she wasn't digesting them. Her poor little system just isn't moving and they want to be ultra conservative on what they put in her. They hope to look at her esophagus next week with a scope to see if they can detect any problems. Meanwhile they plan to put in a PICC (peripherally inserted central catheter) IV line to allow her to receive the TPN in a more concentrated form. But, the folks that put those in those special IV lines are backed up until Monday... When I asked the Attending Physician the plan for feeding her he pulled a coin out of his pocket and tossed it. Not too reassuring, but everything they do with Kaitlyn is just trial and error because there is no precedent. She is so skinny!
Her eyes are also a concern and there is some adhesion with the lower eyelids and eyeballs starting to occur. They switched her eye medicines again today. She is still heavily sedated and since her small response two days ago we haven't seen much movement. They are going to cut back a little on the Fentanyl to see if she can wake up a little more. Her skin continues to heal, but she has lost most of her eyelashes, which we hope will grow back and she is starting to lose her eyebrows. Another side effect of this disease is that she can lose her fingernails and that is starting to happen on both of her thumbs.
For the first time today I heard the Attending Physician discuss the idea of moving her closer to home as she gets a bit more stable, perhaps to Oakland, Stanford or UCSF Children's Hospitals, but in the same breath he said "she's not out of the woods yet." I think they are getting tired of us around here. The men at the Information Desk know our name and ICU room number by heart when we come to get our badges each morning and we have already filled up two Frequent Buyer cards in the Cafeteria Coffee Shop... We've been to every restaurant on the block. We know all of the nurses and I think we must ask too many questions!
We are growing weary and homesick and miss talking to and being with both of our daughters so much. We miss our hectic schedule of car pools, Girl Scout and Indian Princess meetings, softball practices and games. We miss nightly homework and TV arguments. We miss Kaitlyn hating everything we make for dinner and not wanting to get up in the morning, and wanting me to make chocolate chip cookies everyday after school for her snack, "not the refrigerator kind Mom, the real kind you stir". We will never take any of those mundane things for granted again! Give your kids an extra hug and kiss tonight when you are tucking them in and read them as many stories as they want you too. Let them have that sleepover they are begging for and let them stay up late. Spoil them rotten this weekend just for us! _____________________ She is still in very critical condition. Please pray for this family.
God Bless.....
_______________________________________
Day 32
Dear Friends and Family, well a lot has happened over the last two days some good, some bad. Brad and I had started feeling pretty confident that Kaitlyn's condition was improving and had even started to talk about moving her to the Children's Hospital closer to home next week, but we got the wind knocked out of our sails last night.
To recap, on Monday Kaitlyn went to Radiology and had a special PICC IV line put in her left upper arm. This allows her to receive a higher concentrate of TPN (nutrients), which is good because she needs the calories, and to have a spot where the nurses can easily draw blood. The bad thing is we had to stop feeding her formula in order to do the procedure. On Tuesday she had a Cat Scan, which was another absolutely scary episode, not only the procedure itself, but waiting for the results. They again had to stop her feedings and we had to transport her through the bowels of the hospital to the CT Department. During the course of these transfers to the procedures on Monday and Tuesday both times the elevators broke with us and Kaitlyn in them. During all this transport time she was off the ventilator and receiving her air by a bag that someone was operating by hand. Elevator alarms were ringing and we ended up having to wheel her through the front lobby of the hospital... The Cat Scan results were o.k. it showed no abscesses, which is what they were looking for as a sign to the cause of the yeast infection. It did show lung disease and an enlarged liver, both of which we already knew were issues.
On Wednesday she was scheduled to go to the Operating Room and have the traceostomy tube replaced and to do a Bronchosopy to check out her lung condition. We have been waiting more than two weeks to have this done. She was scheduled to go at 1:30 and they finally took her down to the OR at 4:30. If you can imagine what it is like sitting in a hospital room for 3 hours waiting for surgery. They made Brad and I wait in a Surgery Consultation room for more than an hour during the procedure and then the surgeon came out and gave us the bad news. Part of the back of Kaitlyn's tongue has adhered to the roof of her mouth from the many lesions in her mouth. They worked to undo part of it, but she bled so badly they had to stop. So part of her tongue is still stuck to her upper back palette and they will have to go in and do more surgery to try and dislodge it. They will do this next Wednesday. She also had to receive more blood last night. This time she got her Aunt Katy's blood donation. I am giving blood this morning as we now have been told that even though I have a different blood type than Kaitlyn I am a universal donor. Our concern now is from the mouth down - her tongue, larynx, esophagus. All of these areas effect her voice, eating, taste and determine how long she will need the trace. She had blood in her stomach from the surgery that they had to remove last night so she wouldn't vomit and further damage her esophagus. They also did not change the trache or do the Bronchosopy. The results of her Echocardiogram (heart ultrasound) were also normal.
She still has the infections and the very bad news is that she has grown a new yeast culture. The head of Infectious Disease Dr. Ross is wonderful and is ordering every test possible. It is so nice not to feel constrained by managed care or costs in this situation and they are doing what needs to be done and doing it fast. They have been looking for the source of the yeast infection, but have not been able to locate it and it is in her blood system. The ID doctor has told us that 10% of yeast infection cases are not cleared by the antifungal drugs and the body has to resolve it by itself, but with good nutrition and other positive things he thinks Kaitlyn can beat it. They started yet another anti=fungal drug today.
We had been waiting until after the surgery to start and stop quite a few things, all of which are on hold now. They were planning on weaning her off the ventilator by turning off the pressure settings and to have her take breaths on her own supported by the ventilator. That still may happen this week, but we had thought it would start yesterday. They had talked about removing the Foley (catheter) and using some type of diaper, but that is on hold due to her skin condition, blood loss, etc. They had talked about starting the feedings again, which they have stopped and started three times this week because of the various procedures. That is on hold and she desperately needs the nutrition to fight the infections.
O.K., on the positive front Kaitlyn is actively taking part in her own recovery now. We have quickly figured out a communication system. We think all those years of playing 20 Questions in the car on family road trips has helped! She is "awake" several times during the day and night now. She can tell us through pointing her hands and index fingers and mouthing the words where it hurts or itches or where she wants cold wash cloths placed. The cold wash cloths is her new thing and she wants ice cold wash cloths on her head, stomach and chest constantly. Even more so when Mommy is in the room and I am running around every 5-10 minutes to re-wet them, get more ice, check the placement, etc. The nurses say she doesn't do this when I am not there. But, if she wants Mommy to baby her then that is fine with me! She also likes to have ice cold water placed in her mouth with a syringe and then she swishes it around, it must feel wonderful. We then suction it out like at the dentist office. We do this every hour or so. She has asked to swallow the water and we have let her swallow small sips, but with everything going on in her throat we don't know how well she can actually swallow. When we tell her she can't do something or have something she asks for she pouts and then cries - silent, tearless cries. Yesterday she heard the nurse tell Brad that she was taking a break to get a Diet Coke and Kaitlyn mouthed the question to her dad "when can I have a soda?" He told her not for now and she pouted. Later that day she asked me "Mommy when can I have apple juice?" Smart kid, she thought we just didn't want her to have soda so she asked for something healthier... We try and explain to her that we need to ask the doctors for permission for the water, ice, etc. and that she has to wait, but then she pouts again. She wants to suck on ice and the doctors had said that would be o.k. after the surgery so we had promised her, but now she can't do that or have the water in her mouth. I asked her if she was mad at me and she nodded yes... We feel like we are getting a little of our Kaitlyn back! I played her the tape our Brownie troop had made for her where they sang several Girl Scout songs and each said hello to her. I think it made her a little sad and I asked her if she missed her friends and she nodded yes. But, we have seen a few smiles too like when I told her Grandmas Cathy was going to come visit.
We received a wonderful bunch of letters that Kelly's 6th grade class had made for her and I read each and everyone to her. She loves the fact that big 6th graders are thinking of her. We read books to her and when I go through the titles of our small selection of books we have in her room she nods yes or no to which one she wants me to read. She asked yesterday why she can't swallow or talk. I explained to her as best as I could, without scaring her, about the traceostomy and the ventilator and had her feel the tubes and plastic device in her throat with her hand. I told her that her illness had made her very sick and that she had trouble breathing through her lungs and I placed her hands on her lungs so she could feel her breathing. I told her she is getting better now and is doing most of the breathing herself and the machine is just helping. She panics a bit when they have to remove the ventilator tube to change the tubing position or when they have to suction the trache and use the hand bag to give her air. She doesn't like the noise or the sensation and who blames her! We are not promising that she will be able to drink, eat or talk at any specific time point because we just don't know, but we tell her she is getting better everyday and while she says she believes that she wants to know "when and how long she will be here." We talk to her of going home and playing with her sister and her friends Lexi, Kestrel, Kennedy, Bailey, Casey, Ariana and Madison. We tell her that her teacher Mrs. Curry is saving her homework for her and we'll be doing her ArithmiTwist books before she knows it. We tell her that the Purple Unicorns need her back to play first base and that she needs to keep her legs strong so she can run the bases (after the Physical Therapist was in last night she started moving her legs and feet herself to do the exercises on her own!) We don't talk about time with her and don't ever mention what the date is or how long she has been here. She does remember the first days of entering the hospital because she keeps asking for ice to suck on which is what we did during those first few days. I think the middle of her stay is a blur, thanks to the drugs, but since they stopped the Valium and took her off the paralytic 9 days ago she can remember and it must seem monotonous. We don't talk about her condition on the phone in her room or in front of her because you all know how smart Kaitlyn is and she will figure out what we are saying! The nurse wouldn't even let me cry in her room yesterday because she said it would upset her. She tried to open her eyes yesterday, but she has so much medication in them she can't see clearly and we don't know how her vision has been affected. She has developed a spot on her left cornea, which is very serious.
Brad and I had talked to the doctor yesterday about moving her to Stanford Children's Hospital - before the surgery and all the new complications. They felt that her airway was stable and she could be airlifted by helicopter even on the ventilator. They want to have the infections under control, which might be another week or so at best. The biggest concern is her lungs and the possibility of developing a pnuemothorax with the high altitude of the air ride. They have now removed both of her chest tubes, actually the left one fell out... So if we can keep her lungs improving then someday soon we may come home. They would do a "physician to physician" transfer. God how we long to home with Kelly and our pets Maddie (our dog), Kali (our kitten that Santa brought who is growing into a cat while we have been gone) and Sushi (our goldfish). In a moment of weakness we have promised Kaitlyn a puppy when she gets home and even told her that we would let it have puppies since we didn't let Maddie or Kali have babies. Right now I think we would give her anything she wants! Kelly even promised her the front seat of the car and she smiled at that!
All in all it has been an exhausting couple of days. Yesterday was about our worst day in more than two weeks. We were just emotionally elated at the thought of going home soon and then we felt deflated with the results of the surgery. Today is our 15th wedding anniversary and these days we cling to each other for love and support. Mother's Day is weighing heavily on my mind and I miss getting the sweet hand made cards and gifts that Kaitlyn and Kelly used to make for me each year. Cherish those candy dishes made out of jars and painted flower pots you get this year! Kelly will be camping with her Girl Scout troop on Sunday so she won't be with us and we are not sure we want to tell Kaitlyn what day it is because she will figure out that it is now May and not April...
Thank you all for your cards, e-mails, gifts and financial support. We truly could not be doing this without all of you.
Love, Brad and Kerry
___________________________________
Please keep praying for this family.
Kaitlyn started having some breathing problems on Monday and they had to put her back on the ventilator. Yesterday they decided to take her back into surgery to try and have a better look at her lungs. Although there is quite a bit of lung disease the surgeon thought they looked better than they did last week and she saw no sign of blockage to explain why Kaitlyn was having breathing difficulties. So for now they are keeping her on the ventilator and we're hoping things improve in the next day so she can be once more weaned off the machine. While they were in surgery they also inserted the special dental plate (it looks like a retainer) in the roof of her mouth and detached her tongue from where it was stuck. There are still lesions down lower in her throat that are actually moving her tonsils into a different place and they still cannot see the larynx clearly. Basically this will be a very long healing process with her mouth, palate, trachea, larynx (vocal cords), etc. She will probably require additional surgeries, perhaps skin grafts or reconstructive work and possible speech therapy in the future. No one can say how long this healing process will be, what it will involve or anything so it is just a waiting game...
-----Original Message-----
Sent: Friday, May 17, 2002 6:55 PM
Dear Friends and Family,
We watched Survivor on TV last night with Kaitlyn in her hospital room. It is her favorite TV show. As we watched I was overcome by the parallels between what these trivial people dumped on this island in the Marquesas were going through and what we were going through with our own Survivor challenge.
On Survivor Marquesas the contestants have gone 34 days trying to "survive." Kaitlyn has gone 40 days now.
On Survivor Marquesas the contestants have not been eating well and are starting to get really skinny: Kaitlyn too.
On Survivor Marquesas the winner gets $1 million dollars; In our Survivor challenge we (or our insurance company) will probably have to pay $1 million dollars...
On Survivor Marquesas the contestants sit around all day with nothing to do; Same for us.
On Survivor Marquesas they play games for immunity: In our Survivor Kaitlyn is constantly challenged to keep her immunity and remain infection free.
On Survivor Marquesas the contestants are all unfamiliar with the strange land; We also are in unfamiliar territory where every car is equipped with "The Club" and a LA Lakers flag...
On Survivor Marquesas the contestants really miss their family and friends; Same for us.
Kaitlyn had her surgery this morning and I wish I could say it went well, but in reality it probably went as we had anticipated, not so great. The surgeon made dental impressions and has ordered a retainer-like device to be placed over Kaitlyn's palate. They will most likely take her back into surgery next Friday to detach her tongue from the area where it has adhered to the roof of her mouth and insert this device. They replaced her trach, but because Kaitlyn is too big for a pediatric trach and too small for an adult one they ended up putting the same type of device back in.
The surgeon's main concern is her larynx or voice box. We had the nurses get us a copy of Gray's Anatomy to study up on this so here is the definition:
"The larynx is an organ in the neck that plays a crucial role in speech and breathing. It has three important functions:
- control of the airflow during breathing
- protection of the airway
- production of sound for speech"
The surgeon was unable to get a good look at Kaitlyn's larynx because of the many lesions in this area, but he is worried about the condition. Her nose, mouth, trachea and lungs still have many lesions and adhesions and have not healed well yet. All of these areas are covered with mucous membranes and membranes are the stuff that the Stevens Johnson Syndrome attacks and breaks down. It really is a waiting game now. She has lots of healing to do. She probably will require more surgeries to take a look around before we even know what type of potential damage there is and what might be done about it.
On a positive note we still have no new infections and the Infectious Disease doctor is going to try and remove one of the powerful anti-fungal medications she has been on. This is great because it has a lot of side effects that bother Kaitlyn. She is still a big target for getting more infections though so they are being extremely careful. She will stay in the Intensive Care Unit during the transfer to Lucille Packard Children's Hospital (LPCH) at Stanford and once she is there and stabilized most likely she will be moved to a regular floor. She also is taking a larger amount of feeds through the tube in her nose now. Nutrition is still a key in her recovery so they hope to keep raising the amount of formula she is receiving and eventually take her off the TPN (nutrients) she is getting through her IV.
If the next surgery goes o.k. our plan is to try and get transferred to LPCH the week of May 27. We anticipate that Kaitlyn will be there for an unknown amount of weeks to months in rehabilitation. Our other daughter is coming to visit this weekend and may just stay here with us for awhile. We have all been apart far too long now.
Take your kids out for a Happy Meal this weekend and tell them it was Kaitlyn's idea!
_______________________________________
Please keep this family in your prayers. At this point they don't know if their daughter will be able to talk again or what the damage to her eyes/vision will be. They are hoping that the tracheotomy will not be permanent. She's been in PICU for 46 days now.
TMD
They are going to transfer us to Lucille Packard Children's Hospital (LPCH) at Stanford tomorrow! We don't have all of the details yet, but we believe we will be taking an ambulance from Children's Hospital Los Angeles to Van Nuys airport. From there Kaitlyn and I will ride in a rented Lear Jet with a Registered Nurse, Respiratory Therapist and pilot. We will fly into Moffet Field in Mountain View and then take an ambulance to Stanford. We should be there by tomorrow evening. Brad and Kelly are going to drive and will probably leave before the plane does.
It has been a very long weekend. Instead of taking "baby steps" towards improvement the new saying is "one step forward, three steps backwards..." Kaitlyn had surgery Friday and they were able to detach the rest of her tongue from the roof of her mouth. They also removed her tonsils. There are still many adhesions and they still have not been able to look at the larynx, but they have informed the ENT (Ear Nose and Throat) surgeon at LPCH of Kaitlyn's condition and she will take over the case. Kaitlyn is still breathing on the ventilator and hopefully if the transfer goes smoothly we can wean her off of that later this week.
Yesterday they informed us that Kaitlyn has contacted an infection called methicillin-resistant Staphylococcus aureus (MRSA). Here is the scoop: MRSA infection can develop in hospital patients who are elderly or very sick. Healthy people rarely get MRSA. Staphylococcus aureus, often referred to simply as "staph," is a bacteria commonly found on the skin of healthy people. Occasionally, staph can get into the body and cause an infection. This infection can be minor (such as pimples, boils, and other skin conditions) or serious (such as blood infections or pneumonia). Methicillin is an antibiotic commonly used to treat staph infections. Although methicillin is very effective in treating most staph infections, some staph bacteria have developed resistance to methicillin and can no longer be killed by this antibiotic. These resistant bacteria are called methicillin-resistant Staphylococcus aureus, or MRSA. So once again, Kaitlyn has developed something that is rare and hard to treat. Because of this she is now in isolation and gowns and gloves are required in her room and have to be discarded before anyone leaves the room. We're not sure how this will effect having visitors at LPCH. She also has developed a urinary tract infection. So she was completely off all the anti-fungal and antibiotics medicines going into her IV's for one whole day and now she is back on two different antibiotics...
I made a typo in my last e-mail and said that Kaitlyn could see clearly when she opened her eyes. I meant to say she "could not" see clearly. She did open her eyes several times today and looked and Brad, me and two different nurses. It was the most progress she has made and was a huge step. She said she could see us, but we're really not sure what she could or could not see clearly.
She is a lot more active now and can with help roll onto her side and move her legs. She has stopped nodding and speaking much and now mostly points or squeezes our hand. She is very tired, scared and anxious and we are trying to keep things as quiet as possible for her. Of course with nurses and doctors coming in every hour for various things it is hard to do. She did not sleep much last night and Brad was at the hospital until 5:30 a.m. with her. We usually have one of us at the hospital from 7:00 a.m. until 1:00 a.m. She constantly wants us to hold her hand and just be there with her.
Brad said to end this on a positive note. We have taken down all of your wonderful cards and pictures from Kaitlyn's hospital room and are packing up our room at the Ronald McDonald House. We are headed home and we cannot wait to get there!!!! I said goodbye to some of the nurses tonight and they cried! We have promised to come back and visit and to send pictures. Hang tight and we'll let you know when you can come visit us.
_________________________________________
Please keep up your prayers for this family. They have a very long road ahead of them.
http://www.bayarea.com/mld/mercurynews/news/3396464.htm
She is still very, very sick. Keep the prayers and support coming.
Regards,
TMD
Disclaimer: Opinions posted on Free Republic are those of the individual posters and do not necessarily represent the opinion of Free Republic or its management. All materials posted herein are protected by copyright law and the exemption for fair use of copyrighted works.