Happy Birthday and CICU status 1A

I am posting from my phone so this will not be a long post. First of all HAPPY BIRTHDAY McCADEN. Today my oldest turned 11 and I am not home. This makes me so sad:( My mom will come up to the hospital today so I can go home for his bday dinner of smoked brisket! Yesterday was K's cardio check up. It was decided then to admitt her to the CICU for Milrinone for worsening heart failure. This morning they attempted to place a long term way to give IV meds (picc line). The attempt failed and so we just sent her downstairs to have the pros do it. There is a good chance that she will now be in the hospital until a new heart comes our way. On a positive note she has been up to a status 1A. This puts her in the grouping of highest priority for a new heart Life is crazy but we are a little crazy ourselves I suppose. We are praying that another persons hearts will be touched in a way that our Miss K and her heart buddies can get new hearts very soon.

Home....at least for a few days, hoping for more!

We are home!!!  I must say that by the time we made it home late Saturday afternoon I was exhausted.  So it was decided that being in the hospital would not get us anywhere over the next couple of days because Dr. E wants to see Kaidence have a few days to get a little better from the pneumonia before she considers putting her on Milrinone.  So home we are....for now. She is on extra lasix as well as tube feeds:( We have clinic on Tuesday. If her symptoms still lean towards heart failure becoming worse she may be admitted to the CICU to start the Milrinone and then hopefully moved to the floor a day or so later. So we are home, hanging out and enjoying this time as much as we can...just in case!

Also it was discussed that if a heart offer became available that we would have to pass it up due to how bad her pneumonia was.  Her cardio wants to be sure her lungs have healed before she is thrown on bypass.  She would prefer waiting 2 weeks before a heart comes but may take one with only waiting a week if it seems to be the PERFECT match! If that happened K would be brought into the hospital for x-rays and labs to be sure she was healed enough.

So that is it!  I must say that telling Matthew that Miss K was leaving broke my heart.  When he found out he just put his face down in his blankets.....Made me so sad.  Then he asked if I could come sit by him for awhile.  He is such a cute stinker.  Those 2 kids had a great time together and Chrissy and I can race with a wagon and IV pole like no other.

I will let you know what happens this Tuesday my friends. Thank You for the kind words and many prayers.

Heart Failure?

Happy Friday the 13th (for the last few hours)! Wow, Kaidence has been listed for 260 days!!!!

I debated over posting because I want to post pictures of all the things that Kaidence has been doing to keep busy and all her visitors, but I am too tired tonight.  So I will divide and conquer (I hope).  Tonight I will update with whats going on and tomorrow will be a post of pics!

So today's plan was to go home....obviously, we didn't.  Her chest xray showed fluid still in her lungs but nothing too bad.  As far as the pneumonia, the docs feel they have good enough control over it to send her home.  That was the plan.  However, when her cardio saw her this morning she saw and heard some things that concerned her in regards to Kaidences heart.  She heard a gallop in her heart, her liver is lower, her labs look a little screwy still and K's belly is distended with fluid (heart failure).  The girl no longer has a belly button!  Also, she is not really eating or drinking much if at all.  All these all possible signs of increased heart failure.  K had an echo today and that still looked the same but Dr E still feels that something is off.  I am so glad she listens to her intuition. She is concerned that the pneumonia has pushed her over the edge and into additional heart failure. She wants to keep an eye on her.  If things persist we may need to put her on IV Milrinone to help her heart function better.  That would definitely be a signal if a turning point and I am just praying that someone will say 'yes' soon, before it gets to that point again.

Kaidence has been started on tube feeds again at nights but will likely go to bolus feeds during the day.  They have increased her Lasix (diuretic) and therefore she is up all night peeing.  It;s really hard to unhook her and hook her back up to everything multiple times a night when you are half asleep.  She is still requiring some O2 at night and we are hoping to not need it tonight.  We will see.

We have had great visits from family and friends.  Mike even brought up K's little doggies because she has missed them so much.  She was so happy to see them.  K's buddy Monica came up yesterday and today.  Her cousins and grandparents have been by as well. She keeps pretty busy with Mr Matthew and so do Chrissy and I.  I think those two wore each other out yesterday because today they were a little more mellow.  They did get their bedtime stories together tonight.

There you have it!  Our main concern is no longer the pneumonia but the likely possibility that she is starting into more heart failure. I will update with any news.  Thank You to my sister, mom and Mike's mom for taking the kiddo so Mike could make it to work some of the days this week. Thanks for the prayers for my sweet girl.  To our wonderful ward....Thank You for all the wonderful dinners you have made for Mike and the boys this week. Love and Hugs to you all.

Hospital Sleepover!!!

Time for an update!  Let me start by saying that Miss K is looking MUCH better today and acting more like herself.  Still not as active but she is getting there. After much convincing she walked a short distance yesterday but that tuckered her out for the rest of the night.  Last night at 11:00pm she woke up begging to go upstairs to play with Matthew (her heart buddy who is also waiting for a new heart).  I told her no, because it was night time but she was convinced that it was morning.  Finally she went to bed and the  first thing she asked for this morning was Matthew.  So cute!

Back to the medical stuff.  This mornings chest xray looked worse.  It showed pneumonia in both lungs as well as fluid. It is common for these xrays to be about 1 1/2 days behind progress.  Clinically, she is showing improvement so they feel confident that in another 2 days her xray will look much better.  They are giving her extra doses of lasix in hopes to dry up the extra fluid in her lungs.  If things in a couple of days don't look better then we will discuss cleaning out the lungs.

The great news is that today we get to leave the CICU and go to the floor.  Kaidence and Matthew are so excited because they get to be neighbors.  I think Kaidence thinks its like having a sleepover at the hospital and they have big plans.  Cardio even cleared them 'hanging out together'.  Kaidence 's docs have made a goal for her of getting up and walking 3 times today.  Matthew says he is going to take her on 100 walks and then tomorrow 200 walks. Not so sure she will make it far on her one walk but I am glad he has such lofty goals for her in mind. I think he will be good for her to get her up and moving this junk around and out of her chest.  Hopefully, they can be therapeutic for each other. I just hope those nurses on the 3rd floor are ready for this big sleepover! Let's get this party started!

That's about it for now.  Today I have a good feeling about things to come for Miss K.  I don't know why, but I will hold onto that feeling as long as I can. We will Miss our great nurses downstairs but will hopefully see them again soon when she gets a new heart.  We are excited to go upstairs to see our nurses who we also love and have a great time with our heart buddies.  We will keep you all posted.  I think we will be here at least 2-3 more days, maybe a little longer.

Hugs from us all!

Update: Pneumonia and Pleurisy

Today Kaidence is pretty darn wiped out.  She is pretty weak and in a lot of pain with the pleurisy. We have come down from 8 liters of high flow oxygen to 5 liters of high flow.  It sounds like she has a hurricane in her nose. We are starting up tube feeds tonight because she is not eating, but I cannot blame her.  Her echo yesterday looked the same, so hopefully her heart will hold up well with this infection.  Tomorrow she will have another chest xray.  If the pneumonia still looks consolidated then they will go into her lung and scrape out all the junk and drain it.  I am really hoping that things will just look better on their own.

Many are curious what this does to her listing for transplant.  As of now they will keep her listed.  If they do get a heart offer they will meet together as a team and discuss the risks of transplanting her with this.  I think things are heading in the right directions, its just very slowly.

Today her CRP is down from 39 to 29 so that is great.  Ideally it should be zero, but we will get there.  Her white count has also dropped by half, another good sign that things are trending well.  Her blood has shown some clotting issues.  They said it's like she is on heparin but she isn't.  They are trying to figure out what is causing that issue.

I must say that my heart broke a little the other day at home.  Kaidence was sick and the day before we took her into the hospital she asked
K:     "Mommy, is my heart coming in a few days"
Me:  "Honey, I don't know.....Why?"
K:    "Because I don't want to be sick anymore"


All I could do was hold her in my lap and say a prayer with my little girl and ask that if a heart is meant to be for her that one will come her way.

All in all we are just hanging out today while Kaidence sleeps.  Maybe I can get some reading done today. Thank you all for keeping us in your prayers and for the kind deeds you are doing for my family at home.  Much Love to you all!

Pneumonia and pleurisy

Last evening was tough for Miss K. She was a pretty sick kiddo. So she has bacterial pneumonia in the right middle lobe. She also has pleurisy in that lung as well and it causes her a lot of pain. She is on 8 liters of high flow oxygen to help with her breathing to help with that lung because it is also partially collapsed. Her CRP 37.6 so she has a good infection brewing. We will likely be here for a few days. Thanks for checking in on us. Praying she can get better quick so she can get that new heart!

CICU

I am doing this on the phone so it will be quick. K I is being admitted to the CICU for pneumonia. Waiting for cardio to look at the heart side of it. They have called her doc to come in. Please pray for Miss K!