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.
Thursday, March 26, 2009
Monday, March 23, 2009
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!).
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, 2009
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. :-)
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. :-)
Wednesday, March 18, 2009
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.
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.
Tuesday, March 17, 2009
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.
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.
Sunday, March 15, 2009
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".
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".
Saturday, March 14, 2009
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.
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.
Friday, March 13, 2009
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!
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!
Thursday, March 12, 2009
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
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
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