Thursday, June 18th, 2009

Good Morning! And yes it is a good morning!

Khloe and I got home from PCMC Tuesday night; she was feeling wonderfully well mentally and ok physically...the mental "wonderfully well" really made the difference about being able to leave. :-)

Today we go back in at 11:00am for an outpatient procedure to replace her GJ tube again! This time it has been lodged in her esophagus since her vomiting on Monday, but the drs did not want to correct it until they were sure her tummy could handle it once more. So since then she has been on a very restricted diet, not wanting any food to get caught on the tube when she was swallowing and cause her to choke and needing to give her tummy only very bland foods as it was healing. As you can imagine she is really looking forward to eating something with substance and flavor!!!! After the tube is replaced we go see her rheumatologist to check in on her scleroderma and muscle enzymes; we are hoping for good news.

Today is also the funeral services for Larry's father up in Chatteroy, Washington, just north of Spokane. Khloe's drs had told us last week that they did not feel she would have her strength and/or stamina back to handle the trip up there so we have known that the children and I would not be able to attend. It is hard to not be there for Larry and Mom/Grandma, and even harder to think about not being there for Dad/Grandpa; our thoughts will be with them through out the day. This week is also Zion's camp for Jamin and Jonah; we encouraged them to go as originally planned when we knew we would not be able to go to the funeral. They both spoke to me about Grandpa before they left and I know today will be a very tender day for them, too. I so appreciate the priesthood holders who will be supporting them while they are at camp and I know Larry feels the same way.

Because the men in our family are gone and we women all feel the need to have some fun time together, we are having a "girls day out" tomorrow and going shopping, out to eat and maybe catch a movie. I'm sure you can all understand the need we have to not be irresponsible, but to put off responsibilities for a short time. Khloe gets to choose the restaurant after her time off of yummy food and is putting a great deal of thought into it! Kimber is thrilled to go shopping with the big girls; she is by far the most clothes conscience at her age than any of the other girls were! Kindahl and Kailtin are also looking forward to the shopping, and Karissa and I mostly to time spent together with out having to make big-deal decisions! :-) Karissa has been a HUGE help to me this last week and I was and continue to be so amazed and yes, proud, of the job she has done in being the parent with both Larry and I gone. She only text me once last Sunday night saying she was "ready to stop being the mommy now"; she handled so many situations on her own in exactly the ways we would have wanted them done and without any guidance! She is a remarkable young woman!

But there are questions and then decisions facing us again soon; can Khloe go to Girl's Camp next week? what driving options do we have to get Kindahl back and forth from camp to her recital performances Tuesday and Wednesday? where can Jamin find full-time employment now that he has graduated? when can Jonah get in the last of his driving hours before getting his license? will Larry's mom be coming home with him to stay for awhile? can we go to Bear Lake as planned and can Larry be with us after the time he has already had off? will we as a family be able to participate in the Scleroderma Walk/Run fund raiser at Syracuse Days on June 27th as planned with Khloe joining in the walking? With just writing down these down, and recognizing that there are many more decisions to make each day, I am now EVEN HAPPIER we are taking tomorrow off!!!!!

June 15, 2009

So much as happened since I last posted; I KNOW I am really bad about keeping this updated as many of you have gently reminded me!

But, as my excuse is always the same....life is busy....this post, too, will be brief.

Khloe's appt on May 21st went very well. The meds she is on for her heart showed they were supporting it in normal ranges...yahoo! All her limitations were lifted for 2 months so it could be determined if her heart could maintain the normal ranges with normal, 13 yr old girl activities. So from that date until June 8th she did rally well, only tiring out more than a healthy young girl would, but no other consequences. The week before June 8th I was diagnosed with the Flu A virus and obviously quarantined from Khloe, but she started having symptoms that Monday and then on Tuesday her cardiologist asked us to bring her in for an echo as she was starting to have more irregular beat patterns because of feeling ill. As we were getting ready to leave Khloe passed out, came to, then passed out again (much longer version available when I have time to explain). We had to call 911 and they transported us to PCMC where we have been ever since. Khloe's heart was not causing all this, the flu and a Scleroderma flare-up have been determined to be the culprits, but they caused her heart to be in distress. Now, six and a half days later, her heart is back under control, the flu has run it's course and the Scleroderma is beginning to clam down the swelling in her muscles, yet she has developed some vomiting in the last two days that is currently unexplained and keeps causing her GJ feeding tube to come dislodged; it has already been replaced yesterday and now will need to be again after the vomiting stops. We, Khloe and I, get to go home as soon as all this new stuff is resolved, we hope by tomorrow.

Meanwhile, during this time here with Khloe, we also received the sad news that Larry's father passed away on Wednesday the 10th of June. Larry was very torn between being here with Khloe and needing to be with his Mom; he flew out on Thursday morning to Washington after being as reassured as possible by me, and Khloe's drs. He will be with his mom through this next Thursday the 18th which is the day of the funeral in Spokane. We, Khloe and I, hear from him at least three times a day, and the kids at home do, too.

At Khloe's last appt on May 21st she was scheduled for a Stress MRI on July 15th. The plan was for her to do normal activities until then, then do the test which requires the drs to give her medicine that would cause her heart to go into distress, then do the MRI to determine the extent of the damage caused by the Scleroderma. Now the drs are not sure we will stay on that time-line feeling that her heart may need more recovery time after this last bout. I will let you all know when we do. For now I have to end this and get back to her room.

Thanks to everyone who is helping us out, especially with Larry and I both gone from home.

So what do you do when you can't sleep....?

I envision the following scenario....the television reporter, amidst all the cheering and applause says, "So, Kathi, you have succeeded in creating a happy, peaceful, restorative Sabbath day, all your family is gently at rest, and your week ahead is planned and coordinated; what will you do next?", and my answer "Go to Disneyland!", then his answer "Yeah, right! You got yourself mixed up with the Taylor's! Try going to sleep instead!" So when I can finally get my mind to settle down for the night I will imagine what a great time our friends are having and that will give me a wonderful start to some happy dreams!

We have had a nice weekend, starting with attending the Renaissance Fair on Saturday with the Hope Kids foundation. This is a group that Khloe, and us as her family, became involved with during the last week of her hospital stay. It is an organization specifically for children with life-threatening illnesses and their families and provides ongoing events and activities as well as a special support community. The fair was outside and it was a gorgeous day! We watched full-contact jousting (even Jamin winced at some of the hits), listened to some great bagpipe/flute/strings music, and saw a myriad of costumes including Snow White, a Spartan and even a Trekkie! We got an added bonus for the day by being able to visit with our friends the Beckstrom's as they were arriving and we were headed home....great timing! Among other things, Kaitlin and Kindahl left with henna tattoos, Khloe with a "Harry Potter" type magic wand and Kimber with a flute and pictures of herself riding a camel! Larry took us all out for an early dinner and then Kaitlin and I got to go watch Jamin perform in the high school's dance classes recital, of which he did a fabulous job! This morning I woke up to another beautiful day and decided to take Kimber and Khloe on a walk. Kimber pushed her baby (current one is a stuffed polar bear!) in the stroller and I pushed Khloe in the wheelchair. What started out as a nice little stroll turned into a 4 mile walk as we were enjoying ourselves so much! Then we got to go to church and fill our spiritual reservoirs some more and then had a fun dinner with wonderful friends over to share it with us. All in all a happy, peaceful, restorative (now you know where that reporter I mentioned before got his line!) weekend.

Coming up we have a busy week with Kimber's kindergarten testing and year-end program, a mock disaster drill and recall for CERT, and Khloe's and my all day visit to Primary's on Thursday. The weekend is busy, too, with Jamin and I down at Snow College for his football "audition" on Saturday (wish him luck!), and our family speaking in church on Sunday (for all of you who will be gone for Memorial Day we will let you know if you missed anything!).

I will end tonight with a thought to ponder...for those of you with young children, looking forward to the day when one of them is finally old enough to babysit the younger ones and envying those of us already there, Larry and I discovered something of importance Friday night that we want to share with you...after all that time of waiting for them to get older and be able to babysit, once they can do that for you, take advantage and enjoy it as much as possible because there will come a day when, because they are now even older, they will have jobs and social lives that take them away and therefor are unable to babysit for you anymore!!!! So here's to our children becoming the responsible, contributing members of society we are raising them to be, and to us for not only letting them go, but encouraging them to, even when it means we don't get to see that movie we talked about all week!! :-)

I'm back!

Thanks to all of you who reminded me that I have not updated our blog for a couple of weeks! Isn't there a saying like "life is what happens while you are living it?" ...well we have certainly been living life to it's fullest lately!

Since I last wrote Jamin's graduating needs have gone into overdrive (pictures, announcements, college visits, etc); in less than a month he will graduate as one of the top students and athletes in his class...woohoo! He is also a terrific young man in his strength of character and values and we are so pleased with the person he has become. What mom wouldn't absolutely love having her son open her car door for her even when she is the one who will be driving or take her arm to help her over a rough patch of ground or check with her each morning to see what he could do to help her day, among so many other thoughtful things he does? And what dad wouldn't enjoy having his son work on his car maintenance without being told, like reading the same hot rod magazine, and laugh hysterically together at the same ridiculous commercial that they play over and over again? Jamin is a wonderful son, great big brother and will be a remarkable adult.

Kaitlin was chosen to be SBO (student body officers) over Student Relations for this next school year (her senior year!) and was also accepted on the Yearbook staff. I was able to help her just a bit on her portfolio she had to submit for SBO and was amazed at her creativity and production skills. So this means that next year she will be involved in SBO, yearbook, the Standard Examiner as a teen reporter and act as one of sixteen high school representatives on the district's Superintendents Council...along with working and anything else she can manage to fit into her schedule! She also received the Leadership Award through the Teachers of Tomorrow program at Weber State University last week and she enjoyed having Larry act as her escort for the night.

Jonah started his first "official" job in April and now has finished his training time and is busy working 3-4 days a week. Larry and I had the chance to visit with his boss one night at a social event and he said Jonah was a great employee; parents like hearing that! I got to go with him last week to set up his checking/saving account with his own debit card; that makes four of our kids handling their own money now! He gets to start the balancing act of football conditioning, work, friends and family this summer (not necessarily in that order!), but I am sure he will rise to the challenge. It is neat to see your kids learn more about managing themselves and grow with added responsibilities.

Kimberlie is working hard learning her part for the Kindergarten end-of-the-year program. Can you believe she volunteered for a speaking part and has it memorized already?!! She also got to go to the Clark Planetarium last week on her first "bus ride" field trip; she was nervous about the bus not having seat belts :-) but I also think the bus ride was the best part of the adventure when it was done! I, surprisingly, had a hard time letting her go at the last minute and was lurking around the corner of the classroom listening to the instructions to the chaperones and keeping my eye on her! After all my other children having gone on sssooo many field trips through out the years why was it suddenly difficult for me to let her go??? I don't know if it was the fact that she is the youngest or if it was all mixed up with feeling so protective these days of all my kids or what, but I need to say "thank you" to Jenny, a dear friend and neighbor, for understanding my wacko feelings and taking it upon herself to arrange for Kimberlie to be with her on the trip!

Several more "thank yous" first to my sweet husband, Larry, for taking time off from work and making me go to Women's Conference as planned! Prior to Khloe's hospitalization, I had arranged with Larry to be home in the mornings the two days of Women's Conference to get Kimber off to school, with the older kids being home with her in the afternoons until he was home at night, while Karissa and I stayed down in Provo for those days. In February I was really looking forward to attending with her for the first time and hoping to start a new mom/daughter tradition of a Women's Conference retreat, with the other girls joining in as they became adults. Of course all that changed with Khloe's health and I was going to cancel out for this year, when Larry insisted that I needed to go ahead with our plans, especially now with so much on my plate. We compromised at my attending, but not staying overnight and just driving back and forth each day...benefit of living in Utah! Thank you to Myrna and Susan for saving us seats in the Marriott while we searched for parking each day and for sharing their experiences of the classes they took! The conference was great, and being with Karissa and sharing some classes with her was fabulous! She and I were also able to connect with friends from Washington that now live in Utah and all of us where able to eat lunch on Thursday at the Gartz's restaurant "Dew", next to BYU campus...YUMMY food and highly recommended...thank you Simi and Andy! Then the reason I was supposed to attend became clear in a class Friday afternoon I had previously looked right past in the brochure...it was tittled "Difficult but Precious: Our Last Days with Those We Love". This was a class meant just for me and it was the most uplifting, strengthening, and faith building class I could have taken. I learned a great deal about this journey and I was able to add a lot to my reservoir to prepare for those times I need to draw from it. Most importantly I was able to see the possible blessings and growth that could be ours with a humble and loving approach vs. an angry, despairing attitude. A special "tender mercy" was meeting and being encouraged by a special daughter courageously supporting her mother through her final mission here on earth...Heidi, your instant friendship and kind words of understanding made the message of the class complete and my thoughts and prayers are with you, too. I drove home Friday afternoon with a whopping headache from all the emotions of the conference, but even that was welcome as I thought over all I had gained those two days, so my final thanks goes to my Father in Heaven for inspiring so many people to provide just what I needed in giving of their time, offering their support, passing on what they have learned, and sharing their experiences.

This update would not be complete without mentioning the wonderful two nights we had first with Kindahl and then a week later with Khloe as they each received their Patriarchal Blessings. I can share that Larry and I are so blessed to have these special daughters in our family, each with her own divine mission to fulfil in her own unique way! We are both humbled to realize that we were given the opportunity to be their parents and yet thrilled at the same time to understand their tremendous potentials! You go, girls!!!!!!!!

Now for our medical update: Khloe has had some hard days these past couple of weeks with blood pressures entering that 130 zone several times and having more bouts with breathlessness and just feeling worn out. Her cardiologist has been watching all this closely, increasing one of her meds and scheduling some more tests for our next appointment with her on the 21st. She woke up with a slight cold on the 4th and I had to check with the cardiologist again for what medication she could take, finding out she can only have a straight antihistamine because any decongestant would increase her heart rate. So she had a few days of being pretty congested which didn't work well with the breathing problem. A little funny note, when I called about the cold it took me a minute to understand why the doctor seemed more intense in gathering the information from me...she thought Khloe might have picked up the Swine Flu virus and it never even occurred to me that it would sound like that when I first started to relay her symptoms! Moving her bed back upstairs has had mixed results; she likes being with her sibs and having a door to close for privacy and a feeling of protection at night, but going up and down the stairs more often, even with resting on the bench at the landing to regain her breath, has been part of the cause for her higher pressures and fatigue. We are working on the possibility of adding a room and bath edition downstairs which was recommended by the doctors because of Khloe's disability status with physical limitations that will progress, but it is a big (make that huge) step with today's home equity decreases. I hate (make that SUPREMELY DISLIKE as we teach our kids that to hate is to be totally negative) having to balance a decision that would be the best support for one of my children with a financial position!!!! However, if we do proceed with the new room we have some great friends and neighbors who have volunteered their services in different construction related areas that can help offset the costs so for them I am truly grateful!!!!!

Speaking of friends, I need to alert my neighbors that in the near future the Syracuse Emergency Response Teams, ie: the fire and paramedic departments, will be visiting with us to familiarize themselves with Khloe, our house, her medical equipment, etc, in case they ever need to respond to a call from our home. Because we know that Kimberlie is scared of the sirens we asked if they could show her how they work when they come to visit and they said she could even turn it on for a trial if she would like. So now we want to prepare all of you that if you hear sirens and look out your windows to see emergency vehicles in front of our house, don't get worried unless you actually see Khloe leaving with them!!! :-) As there are more than one shift in each department, this scenario may repeat itself several times so I will try my best to inform you before they come. We have been joking about using their loud speaker system to announce "this is a test of the Syracuse Emergency Response system. This is ONLY a test" so you wont be concerned but I can't promise that will happen! :-)

Here's to looking forward to a good week, with great weather and days going according to plan with no surprises; negative ones that is, positive ones are always welcome!

Birthday recovery week!

Thank you everyone for all the great birthday wishes for Kindahl, Khloe and myself! Thursday and Friday were wonderful days for the girls and yesterday was just as nice for me!

Larry and I enjoyed chaperoning the prom last Saturday night. I would say all the kids attending (the ballroom was packed at the Davis Conference Center) had a fabulous night to remember. Jamin and Kaitlin both had terrific dates and it was fun to have all of theirs, and also Jonah's friends, say hello through out the night. As chaperones we got to have our picture done by the photographers there so we had Jamin and Kaitlin pose with us for a typical prom night "group picture" that will be added to the Lewis Family memory album.

Larry's cousin Tom and his wife Sherry came into town Saturday night and their daughters Jessica and Amanda, along with Jessica's fiance Daniel, came up from Provo yesterday for a visit. We had a great time...especially the Wii competition in the evening that had us all yelling and cheering and Khloe having to take breaks to calm down her breathing and blood pressure! The Lewis branch of the family hear by issues a challenge to the Hickman branch for further family competitions! :-) I would imagine that just between Jess and Daniel and Karissa and Troy our family honors will be kept at a high performance level!!

Khloe is having a quiet day today to make up for all the excitement yesterday. She decided to not use her wheelchair at church and she did very well, and even though her breathing and blood pressures were labored several times last night, activity like this is too important to all of our mental well-being to keep her away from it. Who wants to constantly have to sit out on family fun or not do things at all in case it could cause a problem? And who wants to be the one having to enforce it? The answer to both is no-one and the even better answer is that doing things like this are more helpful than the possible risk of causing harm. So...bring on the fun!

Along with all this Khloe has decided she would be happier having her bed back upstairs with the other kids so today we (meaning Karissa and I) are also moving bedrooms around. She can go up the stairs now a couple of times a day with sitting to rest on the landing and she enjoys being up there with all of her siblings, so for now this is another thing we can do for her mental health (which we are learning can be as equally important in how she feels as all the medical support). She will need to plan her trips up or down so that she is only taking the stairs a couple of times each day and this will take some getting used to; for now I am preparing to be her "gopher" but I hope it wont take too long for her to be used to thinking ahead for what she needs and where she wants to be. We know that this is a temporary situation and that at some point in the future her physical needs will again dictate a different place for her bedroom, but since we don't know when that will be, this is the decision today. I want to add a HUGE thank you to Khloe's sisters who, out of necessity, are having to move their things around and adapt to different rooms/closet spaces in order to have the best possible arrangement for Khloe and her medical equipment...I am so proud of each of you and the understanding you show! And the boys, too, for all their help (even though they are glad that being the only boys means they never have to move bedrooms!)...ALL of my kids are WONDERFUL!!!!!

Happy Birthday to Kindahl and tomorrow to Khloe!!!

We have had a great and tiring day (sounds like the title of a book!). It began with Kindahl's birthday celebration this morning at 6:30am (when you have kids that work in the evenings it is the only family time!) and for those of you that know of our birthday breakfast tradition, she chose Cinnamon Toast Crunch! Oh, and birthday pictures are even more fun when everyone is still in pajamas with messy hair!! :-) So we were all in great spirits as we left to go our to our destinations and it was a great day from then on! The tiring part was the full day of Khloe's dr visits...and I mean FULL DAY! We had an exam with her heart failure specialist at 10:30, and medicine given at 11, followed by blood pressure checks at 11:30, 12:00, 12:30 and 12:50pm, with walking or resting requirements in-between and another dose of medicine. Then we saw her scleroderma specialist at 1:00pm followed by a return to the blood pressure checks at 2:00pm, 2:30 and 3:00 at which time we saw the heart failure specialist again for a final visit. Maybe exhausting would be the better word! Khloe did wonderfully well though she promptly fell asleep the minute we were in the car for the ride home!

Her visits resulted in the following information/changes/goals: as far as her scleroderma it has not changed much throughout her body but we have noticed a decrease in her mobility and range of motion. This is probably due to her not being able to do her stretching or any exercising and therefore will stay this way until she can move more and then it will be a wait and see what response we get. Her finger tip ulcers remain under control with no new lesions and her reflux is also under control, supported by the GJ tube. With her heart, Khloe was able to walk up to four and a half minutes before needing to rest and catch her breath and is still needing to sleep two to four hours during the day as well as about ten hours at night. While we did not reach the goal of ten minutes of walking the dr feels it is still obtainable and that as we work on the right dose of medicines she would also like to see Khloe having more energy and feeling less worn out. It was obvious that Khloe is also retaining fluids so a new medicine was prescribed to help with that. The dr is upping the dose of one medicine to work at keeping her blood pressure consistently lower, and let us know that the dosage may need to increse again. They are concerned about the "angina" problem, especially lasting as long as it did so we are now to put her on her oxygen right away and come straight into the heart clinic if a prolonged episode occurs, and Khloe is currently wearing a Holter Monitor for 24 hours of continuous ekg readings for them to review. We return in a month for another echo and visit with the heart failure doc, with a plan for future visits to do stress and exercise testing on her heart when she is stronger. No labs or blood draws were needed today since it was all done last week in the ER and Khloe was really happy about that!

Khloe was also happy to have her Make-A-Wish friend Mandi deliver the scrapbook to us today that was made of our trip to Florida; she met us at the end of our drs visits and it was a great way to end our day at the hospital...Thanks Mandi! And to make the day even better, Khloe's friend Emma and her mom Lori drove up to meet us at the hospital and spent a good part of the day with us. Emma also has Scleroderma with alot of the same issues Khloe has, but because this disease can be very different in each individual, she has had some challenges that Khloe has not, just as Khloe deals with some that Emma doesn't. It has been a great comfort for Khloe to know someone her age who also lives with this illness and today it was wonderful for them to talk, and compare, and commiserate, and laugh, and share with a friend who can really understand. It was very nice to spend the time together with them and both Khloe and I were uplifted by their support of us...Thank you Lori and Emma for taking the time to come!

Back at home tonight we had Kindahl's birthday dinner of both hard and soft Tacos (of course when it is your birthday you can have whatever combination of food you want!) followed by chocolate cupcakes with chocolate frosting courtesy of Karissa, with the sprinkles on the cupcakes provided by Kimberlie. We heard from Kindahl about the great day she had and then later she went to cheer practice and three of the older kids went to work. Khloe called it a night at 7:45pm and Kimber followed at 8:00, though she had to get up and "show me something" before settling down by 8:20. Now at 10:44pm everyone is back home and most of them are in bed for the night.

Thus ends our "great and tiring day", with plans to do it all again tomorrow, at least the great part and probably the tiring part too, as we celebrate Khloe's birthday. So think of us in our pjs and messy hair at 6:30am, and for those of you who can still be in bed at that time, while I may envy you the warmth and comfort, I wouldn't trade places with you for anything! :-)

(BTW...for Khloe we will be having Cookie Crisp!)

Monday April 13th, 2009

I was just re-reading my post from a week ago...how time flies and how things can change so quickly! We really did have a great spring break, but the projected activities turned out a bit different than what I had planned!

Last Wednesday evening about 9:30pm Khloe started having heart pains, the same type that she was having when we went into the ICU in March. It is a stabbing type pain that seems to circle within her heart, backing off to a dull ache and in the past has come and gone in about 5-10 minute episodes a few times a day, but Wednesday night it started being continuous on into Thursday morning. We spoke with the cardiology team several times from midnight on but because there were no other symptoms (shortness of breath, lightheadedness, etc) we did not go in to the hospital until Thursday afternoon when the drs became concerned that it was still happening. So off Khloe, Larry and I go to Primary's ER at a little after 4pm where they did another full work up on her heart...labs, ekg, Echo. Everything looked good, just one slight slip in her heart function on the Echo but they called it "borderline" and because everything else was still within normal parameters we got to go home at 10:30pm. Apparently she is having what is called "angina" or pain associated with less blood flow through the heart and while she has had it before, this time the worry was that it lasted so much longer (over 27 hours) than the past 5 to 10 minutes. All that can be done when this happens is Tylenol for the discomfort, unless other symptoms of distress are present and then we are now under orders to go straight to the ER if that occurs. Beside all the discomfort because of the pain and then being extremely worn out and tired because of lack of sleep, Khloe was fine after everything calmed down and after having Friday to recover was back to her "new normal" by Saturday. I, on the other hand, am still trying to get on top of being constantly tired but feeling too much stress to get any decent sleep; it goes with the territory I guess. :-) . But the humor for the week helps...this time for our trip to the hospital I took a moment to pack a bag with a couple of days worth of clothing and personal items in case we ended up staying again as the last two times I was not prepared and Larry had to bring things the next day. Well, Khloe, Larry and I decided that because I did this, we got to go home, so now we have decided that I need to take a packed suitcase along for each dr's visit just to make sure we don't have to stay!

I do want to share something with all of you that I was thinking about Wednesday night while sitting up watching over Khloe...many of you remember that when we adopted Khloe we had several delays in going to court to finalize her adoption because her birth father kept filing appeals to overturn the termination of his parental rights. Though there were no grounds to support his appeals, he had the right to file all the way to the Washington Supreme Court (a process of 4 levels of appeals), which he did, causing a little over a year of waiting for our family. The second time he filed an appeal, we had already scheduled the court date, followed by our temple sealing date because no birth parent in Washington had ever filed any more appeals after a first attempt, mainly because after that first attempt they had to finance the appeals process on their own instead of having a court appointed attorney. So, as I was preparing to drive in to teach a class to other prospective foster/adopt parents, I got a phone call from our very agitated and apologetic social worker telling me we had to cancel our plans for finalizing Khloe's adoption and therefore, our plans to be sealed together as a family, pending this appeals process which could take several more months. Our other options were to take the risk of going ahead, knowing that any further appeals we would have to handle ourselves without the support of the State, or we could even cancel the adoption and have Khloe placed with another family. I was devastated, having to call Larry and tell him, trying to remain calm in front of the kids and our babysitter, and as I said, knowing I had to teach a room full of hopeful foster/adopt parents over the next 3 hours, I was silently praying for help and guidance. A short time later I got into the car for the drive into the DCFS office and as I started to turn on the radio I felt impressed to leave it off and to continue my prayers in behalf of this new situation with Khloe. Suddenly in the quiet of the car I realized the chorus of the hymn "Do What Is Right" was repeating over and over again in my head..."Do what is right, let the consequence follow; battle for freedom in spirit and might. And with stout heart look ye forth til tomorrow; God will protect you, then do what is right"...and I knew Khloe was to be our daughter, that things might take awhile to be legally finished but that we would be sealed together as an eternal family and that we needed to fight for this with all our might and look towards the future with confidence in God and His plan for us. The huge change in how I felt instantly was amazing and later that night, as I looked up the complete hymn with all it's verses, I knew that song and the experience I had just had about Khloe and our Heavenly Father's plan for her in our family would be an example that I would never forget. Now, on that night last week all this came back to me once again, but with a new and added meaning...God still has a special plan for Khloe and our family and because we fought that battle eleven years ago to be sealed as an eternal family, we can look forth with stout hearts to a tomorrow, a forever future, together. How much that knowledge helped me last Wednesday night, and continues to now, as much if not more so than all those years ago.

How grateful I am to know we have a loving Father in Heaven who knows each of us personally and who provides just what we need at precise moments in our lives. He has blessed Larry and I with 7 wonderful children, each with their own story of how they came to be in our family, and were meant to be our children. Some might say it was all coincidence, each of those 7 unique experiences, but Larry and I know it has always been our Heavenly Father guiding us through those times and how much joy we have in our lives because we listened to Him. I know that even now, when it seems that we are being asked to face something beyond what parents should have to, that God is with us, and once again I draw comfort from Him.

This coming Thursday is Khloe's first official follow-up since her heart failure diagnosis. It will be an all day exam and testing at Primary Childrens. It is also Kindahl's 14th birthday, then Friday is Khloe's 13th birthday. Saturday is another cheer competition for Kindahl and then the Jr/Sr Prom that night and Larry and I are chaperoning (we have promised to not bother Jamin and Kaitlin and their dates too much!). We are also looking forward to Larry's cousin Tom and his wife Sherry coming to stay for a couple of days this weekend while they pick up their daughter Amanda from BYU. While all of this may seem crazy and hectic in our lives right now I want you to know that it is also just plain fun and sometimes that is the best therapy around!

Spring Vacation!

Good Afternoon Everyone! We are in the middle of a glorious Utah spring day, blue skies and temperatures in the mid 60's! A nice start to the kids spring break! I began the day with an early morning walk with Kimber and then later this morning we all took Jetta, our German Shepherd, down to a nearby field to run and play fetch. She wore herself out racing around all of us in the field and then running back and forth to the suburban where Khloe was sitting to watch all the fun. Now we are all home getting the house in order so we can play the rest of the week!

These past few days have been a lot of fun for our family. First we were able to visit with a group of good friends from Camas several times over the weekend; they came down to attend General Conference. Seeing them all after 3 years was a real treat; all of our kids had a blast catching up with their friends as did Larry and I. Khloe got to see them, also, which she enjoyed a great deal, even asking one of my friends to keep me talking one night so she could visit longer! On Friday night Jamin had his "Mr Syracuse" pageant. He had been nominated by the school's dance line and he in turn asked Khloe to be his escort. Jamin did a great job making up a Hip Hop routine for his talent, as well as all the activities during the week; he and Khloe even coordinated their dress clothes so they would match! Then that night, Khloe felt so special as Jamin knelt in front of her on stage and gave her a rose...it was pretty special for all of us watching, too! He did not win the title, but he sure is a winner in our family! On Saturday Kindahl had a cheer competition at the University of Utah and her team took first place! Kindahl was very excited as was Karissa since she is one of the coaches! Then since the men in our family were attending the Priesthood Session of Conference and traditionally go out to dinner afterwards, I took the girls out to dinner using the victory as a reason, though I really did not need an excuse to have a fun night out with all my daughters after the last month we have had! Finally, yesterday we all enjoyed a restful and uplifting day watching Conference from home. We were all together, even Troy our future son-in-law, except for Larry as it was his drill weekend, but he came home to a peaceful, happy family.

Through all this Khloe did very well. She is getting better at realizing how much activity she can do and monitored herself each day to plan ahead for things she wanted to do. For example, she knew we could visit with our friends from Camas on Friday morning and then that night had Jamin's show so she used walking to and from our next door neighbors house where the Camas friends would be gathered as her walking goal for the day and used her wheelchair for all the time she was at the show that night since she could not be sure how much standing/walking would be required of her. It was a good plan and throughout the day she was able to get information about how she does when being more active. She needed a nap about an hour after getting home from the visit and slept for almost 4 hours, then charted her blood pressure several times during the day and saw that it was up in the high 120's (if it reaches 130 we have to call the cardiology team). Right before going to bed that night it was 124/78, so now she knows that using her wheelchair in the evening helped it not go too high and planning a very quiet day on Saturday before using her wheelchair when we went out to dinner gave her the rest her body needed to recover from the day before and her blood pressures averaged in the low 100's. This information gathering has been good for the other kids, too, because they knew 120/80 was a good blood pressure and were wondering why we needed to be concerned with Khloe's in that range. It gave us the chance to talk more about how most peoples systems regulate their own pressures naturally, even with exercise, but that it is all the medicines that Khloe is taking that are regulating her system and the doctors are still watching to see if they have the right combination to support her the best.

So, all in all we had a great weekend with special activities, visits, and information gathering. And now we have a whole week ahead to schedule whatever we want to do..what could be better? :-)

Tuesday, April 1st

Khloe said I should start this post with an April Fool's joke about her...something like "Guess what everyone? Khloe's hair has turned bright red because of all the medicines...now she looks like me!"...but then we knew you were all way too savvy to fall for that! :-)

So how about some Lewis Family humor instead? It may be a little off kilter, but those of you who know our family will forgive us! Khloe was able to go to mutual tonight for the first time, though she is still needing to use the wheelchair as being up and walking more than 5 minutes makes her blood pressure and heart rate go up. She also needs to have her travel oxygen with her in case she needs some for recovery after exertion and at dinner tonight Larry and I were reviewing with the kids how to care for the container. You see, this past Sunday Jamin had helped load the wheelchair and her oxygen in the suburban and had forgotten to secure the backpack/travel container and in the 1 mile drive to church it had fallen over (a big worry with compressed oxygen), but was fine. So after discussing what could have happened we got on a roll laughing about how fast the suburban could get to the church if the oxygen fell over and exploded...it would have to be pointed in the right direction...if it went straight up in the sky what were the odds it would come down in the parking lot...would everyone know the Lewis kids had arrived by the bright ball of flame behind them...etc, etc. But to reassure all of you, we did remind the kids of the correct way to handle the oxygen before they left and told them to make sure no one at church kicked the cannister...or pretended it was a football...or played "keep away" (because they might get blown away)...etc, etc!

Now to be serious (which is hard because I am still chuckling), Khloe is doing well, though she is continuing to feel some frustrations with her body being so tired all the time. As I mentioned before, she is up to standing and walking for about 5 minutes, but we notice that just that much activity causes her blood pressure to rise about 7-10 points. We were asked to get a blood pressure cuff so we could take her pressure randomly, keeping a record of activties and the effects on her system; we got a digital one so Khloe can do this herself. She is supposed to stay under 120 and while at rest she averages 97/60, but any activity raises it up to around 115/70 and some times has been in the 123 range. If she goes to 130 and over we have to call the cardiolgy team for decisions. This past Sunday we all went to church together for the first time in March and though she really enjoyed being there, she did start to feel tired at the end of sacrament meeting and thought of going home, but pushed through till after Young Women's. Her pressures and heart rate were stable after the three hours, but she was exhausted and was in bed asleep by shortly after 7:oopm and did not wake until after 9 Monday morning. Since then she has napped every day of her own volition and seems to do better at a regular daytime schedule. She is able to go up and down the stairs as long as she sits on the bench on the landing for at least one minute, but she and I really have to plan ahead for any thing she wants to do as the extra time needed to go up the stairs, or to fix her hair and change clothes, or to get in the car to go somewhere has to always be figured in. In spite of all this, she is happy and her spirits are high. She has her "home hospital" teacher from school coming tomorrow for the first time and is looking forward to having some school work to occupy her time ( yes fellow parents, read that part to your children!).

I want to thank you all for the comments and messages you have left on the blog or sent to my email. I read them to Khloe and it makes her feel much more connected to everyone. A big "thank you" to Kimberlie's teacher Miss Thomas who understood that when Kimber came to school last week with her arm wrapped up in bandages, that though she was pretending to have an injury, it was her way of dealing with some of what she has seen Khloe having to do and having her teacher validate that made her ( and I) feel supported and cared for.

March 26th; Happy Birthday Kimber!

Wow! Where to start? I know you are all waiting to hear how Khloe's Tuesday and Wednesday appts went but they ended up being more than what was expected so here goes...

Tuesday went well; her appt with the dr following her scleroderma showed the swelling down in her knees and they decided to reduce her Prednisone which made her happy, though the trip itself made her very tired. We then went to the lab for blood work and they had trouble drawing from her PICC line so called our home health nurse and arranged for them to come do a "TPA" (a medicinal treatment to clear clogging in the line) that night. As part of that the nurse always does routine vitals checking and everything was normal. Then Wednesday morning at 5:30 I am woken up by hearing Khloe whimpering in her sleep and when I got down to her she said she had stabbing pain in her head whenever she moved and I realized she had fever. I called our nurse to see if the TPA could cause this and she said no and then called the cardillogy dept at Primary. The called back right away and told me to bring Khloe right in.

It seems Khloe developed an infection in her PICC line, an esecially big worry becuase the line connected to her heart, so her appt with the heart failure specialist turned into being admitted to the hospital, having the PICC line taken out and put on a big combination dose of antibiotics by IV for the next 24 hours. Khloe was in a lot of pain and then very, very tired most of yesterday but the fever broke in the late afternoon and she responded well to the antibiotics so by mid morning today plans were confirmed to send us home.

Before we left we did get a longer visit with Khloe's new heart specialist and we both like her very much. She specializes in patients with heart failure and is one of the top in her field. She went over all the prior information we had been given; in short Khloe's scleroderma has moved to her heart and will continue to progress, eventually causing her heart to stop, and because of this she is also experiencing hyper and unbalanced rhythms that could cause a more sudden expiration of her heart. Then she went on to say that while her fellow cardiologists were all correct in their diagnosis and treatment of Khloe while she was in acute heart failure in the PICU, a different approach is used long-term with heart failure patients. Her plan is to help and encourage Khloe to do as much normal activity as possible for as long as possible rather than limiting her (wheel chair, little walking, home bound unless necessary). With patients like Khloe, where the outcome can not be corrected or reversed by medicines, therapies or procedures, quality of life becomes the priority. She will be working closely with us to continue to regulate Khloe's heart meds and to tweak them when necessary, as well as keeping updated on her exercise (ie: how far can she walk before breathless) and of course continuing echos and MRIs . We see her again on April 16th (Kindahl's B-Day) where we need to give her an update on how active Khloe has been able to be and she will do a day's worth of testing the medications to see how they are supporting her.

So Khloe will now be working on slowly determining what activities she can do starting with being up and waking around the house and even trying the stairs as long as she can sit and rest on the landing. The doctor has warned Khloe that suddenly standing up or even sitting down quickly can cause her blood pressure to spike or drop causing light headedness/dizziness and the possibility of falling so she needs to take things slowly but our goal for the next month is to see if she can work up to walking for 10 minutes She can now plan outings with friends such as trips to the mall or a movie with the only quallifiers being that she is to avoid peak times at those places when there are a lot of people as there is always the chanceof picking up a virus that can affect her heart, and to plan out how much standing/walking will be necessary and opt to take her wheel chair if it will help. She is still to be out of school and on home services the rest of this school year but that was a minor thing for her to give up since she has already missed so much. We started with her aitivites tonight by joining the rest of the family for Kimber's birthday dinner at our local Chinese restaurant; Khloe was able to walk about 8 steps before being out of breath but then was able to sit at the table for over an hour of dinner fun before geting up again and she was thrilled with being able to go (I can already see the wisdom in the dr's plan).

I did not think I would have more examples of routine changes so soon but these are good ones, though if/when her meds get changed again I think I will qualify to work in a pharmacy! Khloe asked me if evey other time we go to the dr's now will she end up being admitted and I said I certainly hope not! What a crazy 24 hours!

But what a great ending... it made little Miss Kimber's day that after being apart as a family so much this past month we could all be together for her birthday blast and it was pretty special for all the rest of us, too.

Monday 23rd

Hello Everyone,

We have done very well these last 3 days, adjusting to our "new normal" and trying to get new routines and phrases in to place. For example, Khloe has decided she likes the word "fatigued"because it sounds fancy and I have had to ask her to qualify it by stating she is sleepy tired or worn out tired. Two more are the help in getting to the bathroom which Kimber has decided she can do by pushing Khloe in her wheelchair and planning bathing around Larry, Jamin and Jonah so they can carry her upstairs (she loves being carried by the men in our family!). I am sure more changes will come to our attention as time goes onbut for now we are approaching each one with brainstorming and a lot of laughter.

Khloe has appts at PCMC tomorrow afternoon and Wednesday morning with her Scleroderma drs and a heart failure specialist and including another echocardiogram. Besides giving everyone an update on how the medicines are doing supporting her heart, we also hope to determine how she does with regular activity one day after another; at home she still is easily "fatigued" whenever she needs to stand up but they need to know if being active with wheelchair support is also difficult.

Last night Khloe asked to be carried upstairs to "see if it looks any different"! Since we moved her bed downstairs there has not been a need to go upstairs and since she could not bathe until today she did not even need access to the bathtub, but none of us realized she missed the kids space/commraderie that exisists with all their rooms together since we have made efforts to be toether downstairs. Anyway, the giggels, guffaws and general silliness that went on with the kids upstairs and Larry and I down was fun to listen to and good for all (you know, "the kids vs parents cuz they would never get it" kind of fun).

For all of you that have used baby monitors and know the fun of over-hearing cute comments you will get a kick out of knowing that we have one set up for Khloe by her bed so she can wake me up for any night time support. You can imagine some of the fun things I am now privvy to hearing during the day if I am in my room, most recently the hushed voices of Kimber, Kindahl and Khloe as they compared how may pieces of bubblegum they were each chewing un-beknownst to mom (or so they thought!).

Thursday, March 19

Several of you have asked about visits now that we are home and we would love to see you! Seeing our friends is great for the Lewis' but especially for Khloe since she can't get out to do anything. My only hesitation is that I never know when she will be too fatigued or even sleeping... this morning she was awake at 6 but back to sleep by 7:30am and is still sleeping; yesterday she was resting/sleeping off and on all day. Probably the best thing for those of you close by is just to stop in when you can and for those of you driving a bit, give me a call so we can plan on a date and time.

Our first day home was wonderful, exhausting, envigorating, scary, peaceful, chaotic, and educating. Alot happened and nothing happened...I organized the downstairs to better accomodate Khloe's supplies, meds, equiptment, her nurse came by to teach me how to flush and medicate her PIC line and several friends stopped by to check in and bring helpful information and then the rest of the time we just relaxed and enjoyed being home. I have to mention here how FABULOUS it was to lay down in my bed the last two nights; I never appreciated how comfortable it was until after two weeks of trying to sleep in a chair and I could go on and on about soft yet firm support, cool sheets, fluffy pillows, etc, etc, etc!

Humor for the day...I am required to post a notice on our house stating that oxygen is in use and therefor no smoking is allowed, nor oil or grease brought in. So for all of you that may be planning on coming into our home while smoking or maybe changing the oil in your car or carrying your deep fat fryer with you, please note the sign posted in the front window and make the appropriate adjustments/corrections. You may also take reassurance in the fact that we DO have oxygen in our home so you may breath safely. :-)

We're home!!!!!!!!!!

Yes we made it home last night about 7:00pm and found balloons, streamers and a big "Welcome Home" sign from Khloe's friends! The last couple of miles before our house Khloe had such a big grin on her face all I could think of was the saying "smiling from ear to ear"! It is SO good to be home!

Where things are: Khloe's physical ability is very curtailed for now...bed rest, wheelchair use, sitting on the couch only walking a few steps to the bathroom and she must have someone supporting her during those times; she also needs to have supervised care 24 hours a day. She is on oxygen at night and any time she transfers (bed to wheelchair, wheelchair to couch, trips to the bathroom, etc) for recovery assistance. She has one double PIC line still in her left arm so that labs/bloodwork can be drawn at home to monitor her heart; we are not sure how long that will remain. She has her bed downstairs and for now she will be limited to staying on the main floor. She tires very easily and today has slept alot but looks forward to visiting with friends whenever possible. Her echo from yesterday showed the medicines assisting her heart very well..not as much as originally hoped, but still very good... and we are hopeful this may give her heart more time than first predicted. The doctors had considered implanting a personal defibrillator/pacemaker but told us yesterday that it would not help enough to justify the trauma and possibilities of infection to her heart, so we will just be dealing with "funky" rhythms and of course, the doctors will be closely following her progress. And we say progress because over the next month we want to see Khloe handling her physical movement better with less distress and hope to work up to fewer limitations.

Khloe's spirit and attitude is great, but she is also frustrated with those physical limitations; it is hard to hold herself back when mentally she feels so alert but she has had a couple breathless moments caused by too much or too sudden activity so I am hoping she will start moderating herself rather than me having to be the "Mean Mommy". No one wants to constantly be reminded of the need to stop doing something and no one else wants to be the one always doing the reminding (insert the names "Khloe" and "Kathi" in the appropriate places :-) ). But, once again, being home is WONDERFUL!!!!!

I plan on continuing the blog with updates on Khloe and more about the rest of the Lewis family and look forward to continuing to hear from all of you.

Happy Saint Patrick's Day!

Good Morning All!

Today we hope to have the luck of the Irish on our side (after all I have Irish ancestors) and may get the news that we can go home!
Since Sunday Khloe's "hospital" medicines have been successfully lowered and as of last night, turned off, with the support of the additional three other meds she can be on at home holding her steady so far. Today there will be more lab work to see if these three meds are able to maintain the level of support her heart needs and another echo will be done to also aid in that determination. If so, then we get to leave PICU and may go straight home rather than a few days in a medical unit. WooHoo! I will get back to you with our news as soon as we know.

March 15th

Today has been a quiet day. Khloe has slept alot more today than in the past few days; drs think because of all the ups and downs with the medicines. She has not been tummy sick for more than 24 hours now, which is good news, and as of 4:00pm this afternoon has had her medication lowered for another attempt. The drs also started her on one more new medicine which can be taken at home. Her chest pain seems to be under control, but her knees started swelling and showing some bruising yesterday, more so today, that is thought to be caused by one of these new meds so that is being watched closely.

Larry and Grandma were up for a visit, as well as Bishop and Sister Temple, and yesterday evening Mandi, Khloe's Make-A-Wish liason and friend was able to stop by. Khloe and I both enjoy being able to have visits now, though they are still on a minute by minute approval granting by the staff here depending on how she is doing at the time; we know that some of you have been by but have not been able to come into the PICU and we are sorry that a visit was not possible, but have loved getting your messages. We both look forward to getting home and having time to visit with more of you.

As for when we will be home, that seems to be farther into this next week now. Khloe and I decided today that when we get home we want to have a celebration...she thinks ice cream cake will be good and I like the idea of a Costco cake with buttecream frosting - can you tell that while the food here is really very good we are both craving something more??!! And Khloe would like to eat at a table instead of in bed and I look forward to having people to talk with over a meal instead of eating solo all the time. We were both laughing about this today because Khloe has always thought the epitome of luxury was eating in bed while watching TV (something not allowed at home) and there have been times when I thought a solitary meal or two might be nice...we have both changed our minds!

A special thank you today to Billie Kaye for lending me the book "Everyday Greatness".
I have especially enjoyed reading the stories and insights compiled within it's pages and though it is a book that can be opened up to any section at any time, I find I am reading it from cover to cover. So I will end tonight with a quote by Thomas Carlyle under the category of 'Taking Charge' which I felt spoke directly to me at this moment in my life..."The times are bad. Very well, you are there to make them better".

March 14th

We had a little set back last night. As I had mentioned, the drs are trying to wean Khloe off of the medicines that can only be given in a hospital environment and adding those medicine which do the same type of support for her heart, but can be taken at home. So far she has responded well to this, however, yesterday after coming down a step on one of the meds, her blood pressure and heart rate spiked again, they had to go back up in dose on that medicine and it took from about 9:00pm until around 4:00am for it to stabalize. She was also sick again during this episode and this morning is very tired.
So today is one of those two steps forward, one step back kind of days. It means that Khloe needs to go through a stable time again before the meds can be decreased once more; we are hoping that may be as early as tomorrow.
At home Grandma and Granpa Lewis have been able to stay a bit longer, which the family really loves and I greatly appreciate! I know we Moms often wish for the power to be in more than one place at a time and I am certainly feeling that need now! :-) But I must also say how wonderful it is to hear from Larry and the kids about all the nurturing that is being shown by our friends and neighbors as well as family near and far. Thank you all SO MUCH for giving my family the care that I am not able to right now!
Another tidbit for those of you from Parker's Landing Ward...when visiting Khloe here at Primary's a few days ago Karissa heard her name called in the hall...and was happily surprised by Michelle Shaffer! Tender mercies like this meeting we see as messages from our Heavenly Father that He is constantly mindful of us.

March 13th

Hello All,

Thank you for your kind comments and words of support. I am reading each of them to Khloe.

She is doing better today and our hopes increase that we will be able to leave the hospital next week. She has done well with the slow backing off of "hosptial" medicinces, though the drs have had to slow way down on backing off the one crucial to helping her heart beat stronger as she keeps having PVC's or premature ventricular contractions. They started today with one of the "home" replacement medicines and the plan is to increase the dose each day as long as she tolerates it well. Her attitude and approach to life is right back to normal and asked today if she could take a walk! The dr told her she needed to be able to sit in a chair and then stand for a few minutes at least three times in one day before trying to walk; today she has managed two times so far and is determined to make the 3rd though after each time she has quickly fallen asleep and there is not much time left this evening. :-)
A bit of humor (because that is helping us all, being able to laugh)...the drs let her start eating food on Wednesday, though she continues to have bouts of nausea and vomitting. Apparently this does not bother her happiness at being able to eat small bits of food because yesterday morning as I came in from the mandatory parents absence from 7am to 8am she was lying in bed with the nurse holding the bucket by her head, obviously having just been sick, and she looked up at me with a big smile and announced she had just ordered an omlet for breakfast and could not wait for it to get to her room! The nurse and I had a good chuckle. We can learn alot from our children!

Khloe

Dear Family and Friends,

We thought this would be the quickest way to get information to you on how Khloe is doing and though I am not very computer savy, Kaitlin is and we have her to thank for setting up this site.

So, from the beginning...Last Monday the 2nd Khloe came home from school and mentioned she had had some back and shoulder pain that day but was feeling fine . On Tuesday she had a follo-up appt at Primary Children's for her feeding tube which went well and then she and I went out to lunch and then to the mall. We had just started our shopping when she needed to sit down because of feeling out of breath. Oven the next 30 minutes our shopping consisted of Khloe moving from bench to bench because of breathlessness so we cut things short and went home where Khloe slept for the afternoon, waking for dinner and then going back to bed. During the night she was awake 3 times because of breathlessness and chest pain so first thing Wednesday morning we were at our pediatricians, who, after consulting with Khloe's dr at Primary sent us down to their ER. After blood work showed a heart enzyme level being very high they did an echocardiagram which showed her heart only contracting/pumping out at 17%. During all this Khloe was getting weaker and weaker, with great difficulty breathing and started to drift in and out. She was admitted to the Pediatric Intensive Care Unit. In spite of being immeadiatly on medications to help her heart rate and blood preassure, that evening she had a tacacardia episode that lasted about 20 minutes while a team of twelve worked to get it under control. The rest of the night past with the crash cart remaining next to Khloe's bed..one of the longest nights of my life.
The next day an exploratory surgery which included a biopsy of her heart, along with an MRI, showed that her Scleroderma had started in her heart causing it to stiffen in several places. This has created an inability to expand enough to fill with blood and also the inability to push the amount of blood out to her body that is necessary for it to function. The damage is permanent and as Scleroderma is progressive the doctors have informed us that Khloe's life expectancy may only be counted in months, though there have been a few examples of longer periods over a year. The doctors goal now is to wean her off the medications that can only be given in the hospital and replace them with those that provide similar support but can be taken at home; this was started Tuesday of this week with the forcast of returning home by this weekend or early next week.
Coming home will be wonderful, but we wil have some new challenges. Right now Khloe can not get up to a standing position without her heart and blood pressure getting out of control, so the doctors are not ready to say what her ambulatory/mobility situation will be...walking slowly, wheelchair, mostly bedrest...it is unknown at this time but a plan will be in place before we leave the hospital. She will be fitted for a power wheel chair as her manual one will cause to much stress on her heart for her to push along and we may need to do some remodeling for a downstairs room and bath for her...we just don't know yet what to expect but the one thing the doctors keep encouraging is for Khloe to be able to do as much as she possibly can for as long as she can and be as independent as possible too, in order to keep her spirits up and a positive attitude.
Khloe herself has been unbelievably mature, understanding, accepting and wise way beyond her years. She has full knowledge of what has happened as well as what will happen in the future and her only concern was would it hurt when her heart gives out. Her heart specialist was able to explain to her yesterday that it would not hurt but be much the same as this episode, with her getting weaker and more out of breath over time until she finally was too tired to do anything at all and then her heart would simply stop. I know this is hard to read, it was hard for me to stand there during his explanation, but it was just what Khloe needed to hear for her to be comfortable with what will happen.
Now 8 days later Khloe is her normal, cheerful self (though disguised as a pincushion with 3 IV sites, 2 double PIC lines, and an arterial line) while she rests in bed in between the 3 times a day she must practice sitting up or standing for 2 minutes. We hope to be moved from the PICU soon to a room on a medical need basis vs an emergent need basis, and then to come home.
I will update this blog as information changes and look forward to keeping Khloe updated about those of you who shoose to leave comments. A tremendous "thank you" to each of you for your prayers, concern and support. We know many of you fasted in Khloe's behalf this past week and feel certain that the right combination of medicines that has helped her heart be able to function at a better capacity was finally found shortly there after.
Until the next post,
Kathi