Tuesday, December 1, 2009

We've had better days..

Hello to everyone from Primary Children's Hospital..

I've been trying to write this entry for a while now. I tell ya.. just being in the hospital is a full time job for moms (and dads). The doctors and nurses have kept me pretty busy. To be honest, I prefer that. Those who know me, know that I like to be incharge (no laughing..) It's nice to feel like I'm running the show over here.

(Maddie is sleeping right now, so I'm going to type fast)

Here's a little update as to why and how we ended up here. (and now that we're here, how we get out of here..) It really started with her routine cardiologist appointment on November 12. Just as any other visit, Maddie had an echo. Dr. Everitt informed us that her echo had worsened and her Tricuspid Valve was leaking more than her previous echo had shown. Dr. Everitt then continued her exam, took a deep breath, and said to come back in two weeks. At this point, there really isn't anything more they can do for Madison, unless she is admitted. This visit, she is was definitely sitting on the borderline of whether or not to admit her.

Although Madison continues to look so good (on the outside), I knew that what was happening inside her little body was going to catch up to her soon. Her heart is working so hard. Her echos are scary to watch. You don't have to be a cardiologist to see that her heart is heading for trouble. Madison still had not gained any weight (she has been 17lbs. since June.)

On Friday Madison randomly threw up. Naturally, one would think she was starting to get sick. But she wasn't showing any other sick symptoms. Mark and I both had a feeling that this wasn't a sick symptom, it was the next stage of heart failure symptoms. We've had this feeling since November 12. In a way, we knew it was coming. On Saturday, Madison threw up again; on two seperate occasions. At this point, Madison still is not showing any signs of being sick (cold or flu). By Sunday, Madison was beginning to look pale. Her activity level was still normal and following the throwing up moments, she was fine. There wasn't any reason to rush her to the ER or InstaCare. I knew she was ok, but something was definitely going on.

Monday morning we had a routine cardiologist appointment. (if she didn't have one scheduled, I would have called) We went and had labs first. Her *BNP level is still +4,000. Upon exam by Dr. Everitt, she noticed that Madison's liver was enlarged. This is a clear sign that her heart isn't pumping enough oxygen or nutrients to her organs. She immediately sent us for an unplanned / unscheduled echo. Her heart has worsened significatly AGAIN. Following the echo, we were escorted directly up to the PICU where a bed and team of doctors were waiting for us.

And here we are.. in our little suite. They have started Madison on Milrinone. Milrinone is a heart medication that can only be administered through IV. Doctors have described this drug as being an energy drink for her heart. This drug allows Madison's heart to relax, but pump stronger or smoother, and more efficiently. This will allow her heart some 'breathing time', so it can get stronger. That's where the energy drink comes in... her heart is getting a little boost.

Today's events included waiting and then finally getting a Picc Line. For those of you not familiar... 'waiting' is a typical hospital game played between patients, parents, and medical staff. I have become very good at waiting patiently. :)

Anyway... Madison was first scheduled to receive her Picc Line yesterday. The IV Team was busy and requested that she get one first thing in the morning. 8:00am was the plan until that was pushed back to 12:00pm and that was pushed to 1:30pm. I felt so bad for her; she had gone 12 hours without food or drink. She was receiving fluids through her IV, but she was very restless this morning.

Speaking of food and drink... Madison has tried to eat, but still isn't keeping much food down. She is throwing up 1-2 times per day.

Good news... Madison will be coming home with a Picc Line. This will hopefully minimize or eliminate hospital visits. The magical heart drug, Milrinone can be administered through her Picc Line. I'm not sure if this will be a permanent med, or given as needed per Dr. Everitt's instruction.

Upon discharge, Miss Madison is also coming home with an NG-Tube. This is a feeding tube inserted through her nose. She also has a new med... Lovenox. (Every heart mom's worst nightmare) Lovenox is a blood thinner and can only be administered through a shot in her thigh or bum. Is now a good time to remind the world that I have a degree in Social Work, not Nursing?!

K - Heart mom's (or whomever)... I could use some advice. Are there any Home Health Companies that anyone especially likes working with? Anything else I should know about?


Anonymous said...

Well you might not have a degree in nursing but by the end of all this you very well could. Our thoughts are with you.

Anonymous said...

Well you might not have a degree in nursing now but by the end of all this you very well could. Our thoughts are with you.

Ryan and Hilary said...

Oh my goodness. I am so sorry that you guys are in the hospital, but you are in the absolute best hands at primarys. I love love love the nurses, doctors, etc. that help our little sweeties. Do you guys know how long you will be there? Can she go home on milrinone? Please please feel free to call me or email me anytime. I would love to come and say hello if you are open to visitors. We will keep you guys in our prayers.
my email is hilarymcook@gmail.com
much love, Hilary Cook

Joe and Elisa said...

I know of a nurse.....all you have to do is call! Look how cute and sweet she is. I love that last picture of her!

Kaidence's Mommy said...

We have had several PICC lines and central lines to care for at home. We use Intermountain Health Care. Our insurance works well with them and we haven't had too many problems. Also, we are close to you if you ever need anything. This process is scary and just know that you are not alone. We will walk it with you. Email me and I will give you my phone number. tellebelle@gmail.com. We are praying for you all. Will they let you come home on the Millrinone? I hope so, they wouldn't let us and therefore we spent month after month in the PICU. I will pray that all of that works well. Also, let me know what french of feeding tube she is. I have some from when Kaidence was about her size with extensions that have never been opened..

Family Scads said...

Yuck for having to be back in the hospital. I feel like that place is our home away from home (sad!). Lots of prayers that you get to come home soon.

Beckham has come home with a NG tube, a PICC line, and Lovenox shots. They are no fun...especially the Lovenox shots. Beck would always run and hide when I brought the shots out. I did LOVE the PICC line though (does that sound morbid or what?) because Beck never had to be poked during that time. He had it for 4 months.

You'll be a nurse soon enough! I sure feel like one!

LIB IN UT said...

Michelle, please let me know if there is anything I can help with! especially work wise. If I know in advance I can do PCSP's and field visits, etc. Please let me know. You guys are amazing!
Amie Smith

The Simmons Family said...

I am amazed at how calm you are. It's so hard to read where Maddie is because Owen will be there very soon. My prayers continue to be with all of you. I am so glad that they are allowing her to come home on Milrinone and wait. Praying for that new heart!!

Amber said...

We love you guys! Reading your experience brings tears to my eyes...you two are strong parents! :) Madison looks so cute in her pictures..love that girl!

go_laura said...

Michelle - I'm a friend of Ambers, and when she mentioned your blog, I knew I wanted to hear how things are going for your family. I'm glad to hear you'll be able to bring your baby home soon. You have lots of prayers coming your way! Good luck with everything that lies ahead!

Anonymous said...

I am a nurse, but this is still above my comprehension. At this point you know a lot more about it that I ever hope to. My expertise is with medically fragile handicapped individuals, something Madison will thankfully never be! Even though you have not heard much from me Madison and you have been and will continue to be in our prayers. Social work is not so different from nursing. It is just a different set of skills, but no less a mystery and the successes are just as miraculous. You and Mark hang touch and love your little ones with all your abilities. God will do the rest. Aunt Shelly and Uncle Don

Amy and Cody said...

You are incredible. And Madison looks so adorable in that last picture, love the smile. She is so beautiful. My aunt is a nurse, I will ask and see if she has any reccommendations on who to call.