Yesterday we went to Clinic, what another wonderful morning having to get up at 6:30 a.m to get to PCH hospital before her medicine time. She got a finger poke again this week to check her levels. Makenzie has been having diarrhea for a few days which made me a little nervous because that is what she started doing when she went into rejection, so i was thankful that she had clinic so they could check her Echo and they said it looks good so yippee. As long as she doesn't get a fever or start vomiting then i think she will be ok. She has a lot of energy also so that is another sign of reassurance. Her Prograf level was a little high so Emily faxed the notes to TCH for Carrie to look at too see if they want to make any changes, but with having diarrhea they may keep it where it is at.
All in all clinic went well but for some reason though it seems like she collects a lot of little prizes between the lab giving out stuff and after her Echo. We end up going home with a little bag full of toys every time but her favorite though is after her echo they give out coins and they have multiple coin machine's and depending on the Echo Tech she gets between 2 to 5 coins and that is where the bag comes in.
Next week is her last weekly visit for clinic then it goes to every other week as long as everything goes good, which means we have been home for 6 weeks!!!!
I still thank the Lord everyday for allowing us to have Makenzie in our lives and for her to still be here with us and what a wonderful blessing she has had on our family.
Wednesday, May 27, 2009
Monday, May 18, 2009
Another wonderful day
Today was clinic day at PCH another early morning had to wake up at 6:30 a.m to get makenzie to the hospital to get her blood drawn before she takes her medicine at 8:00 a.m. Other wise if she takes her meds before her levels are drawn, her levels will be to high and not accurate to read correctly.
Today Makenzie saw Michelle the coordinator. She got her Echo done and the EKG read. Dr Everett her cardiologist said her Echo looks good,her heart sounds good her heart rate was sitting at 114. Everett specifically said she didn't hear a murmur which i have never heard her say that with Makenzie.So believe me i asked if they have heard it before on her and they said no. "sigh" which is good cause she said she has been hearing murmurs on other children. So that is a relief Makenzie has her own little things going on with her heart and what comes with a transplant patient. We don't need anything else right now for her to have to deal with.
Well good news her levels came back in the target range that they like it 7.6, so no adjustments this week which last week it was high so that is good that it went back down. They didn't do the cellcept level so i will have to post that level next time they draw it. Luckily they were able to just do a finger poke this week cause they didn't need as much blood drawn, so Kenzie didn't mind clinic this week cause no big pokes YEAH.
Today Makenzie saw Michelle the coordinator. She got her Echo done and the EKG read. Dr Everett her cardiologist said her Echo looks good,her heart sounds good her heart rate was sitting at 114. Everett specifically said she didn't hear a murmur which i have never heard her say that with Makenzie.So believe me i asked if they have heard it before on her and they said no. "sigh" which is good cause she said she has been hearing murmurs on other children. So that is a relief Makenzie has her own little things going on with her heart and what comes with a transplant patient. We don't need anything else right now for her to have to deal with.
Well good news her levels came back in the target range that they like it 7.6, so no adjustments this week which last week it was high so that is good that it went back down. They didn't do the cellcept level so i will have to post that level next time they draw it. Luckily they were able to just do a finger poke this week cause they didn't need as much blood drawn, so Kenzie didn't mind clinic this week cause no big pokes YEAH.
Saturday, May 16, 2009
Happy Anniversary
Today is 2 years since her transplant and what an amazing transformation from 2 years ago. she looks so much healthier and has so much more energy than before the transplant.
There of course has had a few ups and down with being immune suppressed, rejection which she just went through and being in out of the hospital through out the years.
I am very thankful she is still with us today. I thank my Heavenly Father
everyday for allowing me to still be her Mother and what a blessing it is.
It is amazing how much strength a little girl can have and how much closer she has made our family. I want to thank Makenzie's donor angel and their family,
who ever you are for the unselfish act, for allowing your child to be a donor and giving my daughter a second chance at life. My heart is so full and grateful every day for the decision you made cause of your decision i still get the chance to play with her read to her tuck her into bed at night and just being able to watch her grow into the little girl she has become. We love you Makenzie Happy Anniversary. Be a Hero Be a Donor
Tuesday, May 12, 2009
Another day at Primary Childrens Hospital
Today went pretty smooth, she needed a lot of blood drawn so instead of a finger poke which she does not mind she is used to it. They need to take blood from her arm, she new what was coming when right when they started looking around for a vein. I warned the nurse that she is a hard poke because her veins are so small, it usually takes about 2 to 3 tries before they get it right. But this nurse got it in the first try which i was relieved. Because it irratates me when they keep digging and trying and get no where.
She got her Echo done which looked good :). Her labs also looked fine her levels were a little high but Carrie wants her meds to stay where they are at and if they stay that way next week then they may make some changes. But all in all doing very well.
After her appointment i took her to the dentist cause she has a black spot on her bottom left tooth so i figure i should take her in for her first dental visit. That was fun she wouldn't even open her mouth she stayed on my lap while the dentist tried to look. He finally got in and saw the tooth and for little kids like her who don't want to cooperate they actually take them to the OR and put them out i guess it is pretty much an all day process with putting them under to recovery time they call it "same day surgery". That was the plan but the dentist thought is was to much for one tooth so we will see them in 3 months.
She got her Echo done which looked good :). Her labs also looked fine her levels were a little high but Carrie wants her meds to stay where they are at and if they stay that way next week then they may make some changes. But all in all doing very well.
After her appointment i took her to the dentist cause she has a black spot on her bottom left tooth so i figure i should take her in for her first dental visit. That was fun she wouldn't even open her mouth she stayed on my lap while the dentist tried to look. He finally got in and saw the tooth and for little kids like her who don't want to cooperate they actually take them to the OR and put them out i guess it is pretty much an all day process with putting them under to recovery time they call it "same day surgery". That was the plan but the dentist thought is was to much for one tooth so we will see them in 3 months.
Monday, May 4, 2009
Clinic Day
First of all thank you everyone for all the prayers for Makenzie.
Today we went to Primary Children's Hospital for clinic, it went really good.
Her levels looked good, her echo looks good, she has so much energy
can't ask for anything better.
Makenzie is slowly getting to know the doctors here again which we will be seeing a lot more of them because she went into rejection in January and ended up getting life flighted to Colorado for treatment. We where there for the 3 months that they require.
She had severe rejection which ended up leaving her in the hospital for 2 weeks. She ended up going into Cardiac Arrest and was gone for about 15 minutes and the nurses and doctors had to do chest compressions and breath for her to bring her back and i thank my Heavenly Father everyday for allowing her to still be with us and bringing her back to us. Luckily they where able to get it under control and her echo ended up almost back to normal function after the 3 months.
Now she is on 3 medications, She was on neoral but took her off that one and put her on prograf cause her levels were just all over the place and they are hoping this med will stabilize her level, cellcept which she hates and caffeine again to help stabilize her heart rate it seems to be working though it still dips in the 60's but it shoots right back up to the 100's yeah!
Just a little thanks to the cardiology team and transplant team in Colorado for saving my daughters life. Carrie we love you.
Thanks to the Piney Creek ward for all the love and support you gave my family and I while we were out there. You know who you are.
Friday, May 1, 2009
A world changed in an instant
A little history on Makenzie since it took me so long to figure this blog out.
February 17, 2007 Makenzie got sick and had a fever of 103 so we took her to an instacare thinking they will just give her fever reducer medication her oxygen level was low they took her to get a xray and found that her heart was enlarged for her size so they ambulanced her to Primary Childrens hospital. She was then admitted and put in the PICU. They later found out that her left coronary artery was on the wrong side of her heart and her oxygen was circulating around and not through her body. They did a ALCAPA repair to try and fix it. She was in the hospital for a month. She was then released, 2 weeks later she got readmitted back because the surgery didn't work cause there was already to much damage to her heart and wont ever go back to normal. They then told us she needed a Heart Transplant and insurance wouldn't cover the transplant in Utah so off to Denver we go she went by life flight from Utah to Denver in April to a wait a Heart.
She was put on milrinone and we waited for 23 days and then got the call.
Every little thing went threw my mind scared, happy, anxious and sad for the lose of another child and family, but very grateful they chose to have there child be a donor and give my daughter a second chance at life.
After the Transplant she was diagnosed with Bradycardia
she was put on Caffeine to help her heart rate and a lot of immune suppressant
medications right after the transplant. She was only in the hospital for 1 1/2 weeks.
We then stayed at the Ronald McDonald house in Denver for the
3 months post Transplant. She was seen twice a week in clinic to
get Echo's, Ekg's and blood work.
We then were able to come home the end of August of 2007.
Eventually the clinic days where spread further apart and life was great.
She did get sick alot more and they seem to last forever, and everytime rejection was always in the back of my mind, she did have a few ER visits but luckly nothing major. She was our happy little girl. Thank you to our angel donor and the family for saving our little girl.
February 17, 2007 Makenzie got sick and had a fever of 103 so we took her to an instacare thinking they will just give her fever reducer medication her oxygen level was low they took her to get a xray and found that her heart was enlarged for her size so they ambulanced her to Primary Childrens hospital. She was then admitted and put in the PICU. They later found out that her left coronary artery was on the wrong side of her heart and her oxygen was circulating around and not through her body. They did a ALCAPA repair to try and fix it. She was in the hospital for a month. She was then released, 2 weeks later she got readmitted back because the surgery didn't work cause there was already to much damage to her heart and wont ever go back to normal. They then told us she needed a Heart Transplant and insurance wouldn't cover the transplant in Utah so off to Denver we go she went by life flight from Utah to Denver in April to a wait a Heart.
She was put on milrinone and we waited for 23 days and then got the call.
Every little thing went threw my mind scared, happy, anxious and sad for the lose of another child and family, but very grateful they chose to have there child be a donor and give my daughter a second chance at life.
After the Transplant she was diagnosed with Bradycardia
she was put on Caffeine to help her heart rate and a lot of immune suppressant
medications right after the transplant. She was only in the hospital for 1 1/2 weeks.
We then stayed at the Ronald McDonald house in Denver for the
3 months post Transplant. She was seen twice a week in clinic to
get Echo's, Ekg's and blood work.
We then were able to come home the end of August of 2007.
Eventually the clinic days where spread further apart and life was great.
She did get sick alot more and they seem to last forever, and everytime rejection was always in the back of my mind, she did have a few ER visits but luckly nothing major. She was our happy little girl. Thank you to our angel donor and the family for saving our little girl.
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