Clinic was on Wed do to the Holiday's it was not busy at all so we got in nice and easy with out any long waits. She did really good with her blood work, they got it in her vein the first try and got all the blood they needed and then we did not have to wait long for the Echo, it just took the Echo tech a while to get all the pictures we watched 1 1/2 shows waiting for him to finish with Makenzie. Her Echo came back perfect and her heart sounds really well. Her labs came back and they also looked good so no adjustments on her meds. They put another halter monitor on her because last month she had a lot more pauses and adjusted her caffeine so they want to see if they put her on the correct dose. So I will update that later.
She also was able to get her 2nd dose of the H1N1 vaccine which she did not like getting that at all. Primary Children's hospital is giving them out now to patients family so Braxton and I was able to get the vaccine as well. But all in all clinic went well and we will be back in a month. Thank you everyone for your prayers and support.

Happy 4th Birthday

Happy Birthday my sweet little angel you have made this year such a scary but wonderful year. I am so thankful that you are still here with us.

You are growing up to be such a wonderful little girl with such a strong little spirit.

Mommy and Daddy love you so much and enjoy watching you grow up and seeing all your little personalities change as you get older, and making you the person you are today. Hope it is a wonderful day as it is to us. You are such an amazing little girl who I could not ask for anything better.

We are blessed to have you in our lives and what lives you have changed even though you are only 4.

I would again like to thank her donor family for allowing Makenzie to be here and be able to celebrate another birthday.

Thank you

To start off we are so grateful that she is staying healthy this winter season especially with all the cold and flu viruses going around. It has been a month since I have updated on Makenzie she had Clinic back in November and everything went well, again they needed a lot of blood so they used a vein in her hand but she was a trooper and did not cry. Her echo looked awesome and her heart sounded good all her blood tests came back perfect so no adjustment on those. They did put a halter monitor on her and we got the results back with in the week and it had more pauses then last time and the pauses also lasted longer so they had to up her caffeine to 4 ml per day. So this month when she goes back to clinic they will put another on her to make sure that the caffeine is working for her at that dose.

Clinic

Thursday Makenzie had clinic, they needed so much blood because she has had diarrhea for over two weeks now that they wanted to cover all there bases and get different kinds of tests to see if she has any viruses that are hiding around in her. They also took a stool sample to check that also. Echo took forever as usual. We finally got in and her echo looks good her heart sounds great, so far a healthy girl. Her prograf level came back and it is right on target for the first time in a while so we won't need to go back until next month. Luckily her weight maintained and she actually gained a few ounces 26.4 pounds even with all the diarrhea I was for sure she would have lost some weight. Way to go skinny Minni. Just not really looking for winter time again with all the viruses going around and the swine flu. We just need to keep her locked up in the house. She can be BUBBLE girl!!!!!!!!!!!!!!

A little update

Well it has been a while since I have updated on Makenzie so here goes. She had an echo done a few weeks ago and all looks well. She is doing really well so far, she is gaining weight she is up to 26 pounds, getting big slowly but surely she is getting up there. Her prograf level is still not stabilizing it is a little high so they lowered her dose to .56, we get to go back to PCH this week to get her blood drawn again.
Now for the dental update she went to the dentist a few months ago and I told them i was concerned about a black spot on her tooth, so they made an appointment to get it fixed. We went to PCH on the 6th and they put her out and took her to the OR room which sounds pretty severe for a tooth but she would not even let the dentist look at her. I was so scared when they took her because of her heart and the rejection she got over this year. To be honest I cried when they came and talked to me the first time to let me no what they are going to do before they came and got her, but 35 min later they were done and she was coming out of the anesthetic crying for mommy. They put a crown on her tooth and filled another. And life goes on

Second tumbling class

Today went much better we went and got her a little tutu because there were other girls there that had them on so she wanted one think that helped her out a little. This week she did a few warm ups, but she did not want to run. Then the kids all lined up so they can do there summer saults and kenzie did 4 of them it took her a while but she did it and the look on her face was so cute she was excited. Now for the second trick they did hands stands and when it got to kenzie's turn no can do she did not want the teacher to touch her at all but her big sister Ashleigh tried to help her and it went a little better. All in all the second week well.

Tumbling Class

Makenzie started tumbling class on Wednesday, and oh boy what a fun experience lol. We got there and she would not even do the warm ups. She did tell the teacher her name though which for her is a good start.
All the kids started to line up to start tumbling and Kenzie did not want to even do a summer sault she just cried for the most part, but when they where able to choose there own trick Kenzie actually did something. She did the splits, it was cute and I was proud of her so hopefully next week she will do better and I can get some pictures of her.

Clinic

Today went pretty smooth clinic started off with a good bang. Got into the lab found a nice vein yes it took them one try to get the needle in. Then went to the cardiology clinic and got into a room they took Makenzie weight she still weighs 25 pounds. Right after echo came and got us they did there thing and then we saw Michelle.
Makenzie's white blood count is a little on the high side so they said she might be fighting off an infection so i need to keep and eye on her to make sure she does not get sick. Her Prograf level was a little low so they bumped up her dose to .58 and we get to go next week to get labs drawn again.
Dr. Everett wants Makenzie to get another halter monitor done next week to see if the results are still good if they are they will want to lower her caffeine dose.
All in all it was a good day, just not excited for winter with the swine flu on the rise, yes she will need the vaccine for it.
I thank my Heavenly Father every day for the health my daughter has and the love she brings to are family.

Haltor Monitor Update

Last week Makenzie got a Halter Monitor put on and we got the results today. Michelle called me today and I missed the call so she left me a message and the tone of her voice did not sound good. So I was nervous to call her back and when I did my heart was pounding waiting for the results and of course her computer was going slower than ever. The worst thing always goes through my mind and I prayer everyday that she will continue do well and her heart rate will continue to stay steady.
So for the results Michelle said that it actually looks better then the last time. She said that there were less pauses, shorter pauses and no premature beats. Her heart rate numbers are... the lowest it dropped was 54 and that was around 1 a.m and the highest was 140 and her average is what they look at the most is 103 so we are pretty happy with those numbers. Thank you all for the prayers I no that it helps out.

Another 2 weeks have gone bye

Well it has been 2 weeks since Kenzie has had clinic so here we go. This week clinic took forever it started off with labs which they had to get a lot of blood so they needed to use her vein so they first tried her right hand and the vein got blown so it was no good but to my surprise she didn't even cry once, so they went for her left hand and got a good vein and on this hand she only cried a little.
Then she got put in her room to wait for the Echo tech to come and get us and once they came and got her their was an emergency in the Cath lab that needed a Tech so her Tech left so we then had to wait for them to come and get us 15 min went by and nobody has came to get her but other Techs have came and gone with other kids. So finally i went and got a Tech and they finally saw her and got her Echo done it is now 9:30 a.m and if you no we usually are done by then. But we had to wait to see the Transplant Coordinator and the Cardiologist.
The Echo results came back and they looked good her labs are also good, her levels also came back her Prograf level is finally on target but once we start the new bottle we need to let the Coordinator no so they can monitor her levels to make sure the new bottle is mixed right. We also got her cellcept level back it is a Little high but they are going to leave her where she is at. We finally were able to leave and it was 10:45 a.m

Levels

This week has been crazy busy with going to PCH last Thursday during clinic her levels were low so they up her dose to .47. S0 we had to go back to the hospital on Monday to get her levels rechecked and it was up but not where they wanted it to be so they up it once again to .48 and wanted Makenzie to come back today to get it checked again. Once again her levels dropped so Emily up her dose to .5 and we get to go back on Monday to get her blood drawn again.
I then called Carrie to see if PCH has been faxing Makenzie's note's and last clinc she did not receive any thing so i asked her about Makenzie's levels and she mentioned getting a new bottle, I then thought about it and Makenzie started a new bottle right before her clinic day so I called Emily back and told her about it and she is going to keep track and if it is the new bottle she will talked to the pharmacy to get a new one refilled.

Life is wonderful

Clinic is always a fun adventure haha. Getting up early is no fun with 2 kids actually this morning was not bad because they went to bed early. Anyways luckily this week they did not need a lot of blood so they poked her little finger and not even one tear. Clinic was running slow so we didn't even get into her echo until 8:30 a.m. We actually saw her coordinator before the echo which was nice then we wouldn't have to wait for Michelle after the echo, just Dr. Everit (cardiologist) .

Makenzie's echo and her heart sounded good. Makenzie actually gained weight as well she is up to 25 pounds which does not sound like much but for her little self it is awesome. All of her blood work looked good except her Prograf level was way low it was 3.2 when it is supposed to be between 6-8 so they increased her dose to .47 and on Monday we need to go back to PCH to get another lab drawn to see if her level went back up. So we get to get up early once again.

Clinc, Pink Eye and a Cold

Clinic went well last Thursday they had to take a lot of blood this time, her usual to check her levels and they needed extra blood to see if she has a virus that is causing her diarrhea. Her Echo looked good her levels all looked good. Her magnesium level was a little low but Carrie was not to concerned. The doctors at PCH are also concerned about the caffeine she is on and her weight gain so Carrie decided to lower her dose down to 4ml once a day instead of 5ml.

Last Saturday during the night Kenzie was all stuffed up and around 4 A.M Kenzie started coughing so i took her temperature and she had a fever of 100.4 so i gave her some Tylenol and 10 min later she threw up. Flash backs came but i new she was not have rejection cause we just went to clinic so the next thing that came to mind was the swine flu i could not sleep i was tempted to take her to the emergency room with an immune suppressed child they can catch everything. The next morning i called the on call coordinator and talked to Michelle she said it does not sound to concerning but if things seems to worsen take her in.

Now on Sunday Kenzie woke up with her left eye glued shut so i didn't think anything of it then later on during the day her eye got red and goop started coming out so i took her to the inst care and 2 hours later we finally got in and they prescribed her with eye drops and i had the doctor check everything else since she has had a cough and stuffy/runny nose just wanted to cross off the swine flu. Doctor said it is probably just a virus causing a cold.

Haltor Monitor Update

Today I talked to Michelle the transplant coordinator Makenzie has been having diarrhea for about 2 weeks so on Thursday they are going to do a few blood test (CMVPCR and EBV) to see if it is a virus so i will up date that later.

But now for the good news we got the halter monitor results back if you no Makenzie's background she was diagnosed with having bradycardia which means she has a low resting heart rate. Her prior holtors showed lowest her heart rate sat was in the 40's when she would sleep and the highs would be in the 150's with the caffeine. Anyways this time her lowest heart rate was 55 asleep and 150 for the high, her average was 117 so those are very good numbers for her. So the caffeine is doing its job.

Update

Just a little update on clinic once again. This week we went on Thursday it went pretty smooth other than her labs, she had a lot of blood that needed to be drawn so they had to do draw from her vein which they found one in her wrist. This time the nurse didn't quite get it the first time she ended up digging around for a minute which bugs me.
Anyways her labs ended up looking good but waiting for her Cellcept level to come back, Echo looked good as well even though the Tech this time took for ever. They also put a halter monitor on her which needed to stay on for a 24 hour period to record her heart rate so hopefully it recorded it because when she woke up there was only one lead that was stuck on her chest she is a wiggler at night so it didn't surprise me that they all fell off. We should get the results back sometime next week I hope so I will have to post the results next time.
We are down to once every other week now which is a little nerve racking to me because I like the feeling of knowing that her heart is still functioning properly every week and there are no signs of rejection.
On the other hand we ran into our good friend Noah which had a Heart Transplant the same year Makenzie did in Denver. His Mom said that he is doing good and his Echo also looked perfect. He is getting big and we love your hair Noah so cute.

Early Morning

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.

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.

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

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.

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.

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.