Return to Paradise!

It's good to be home! We made it back last night, but before we left Mott, we had to take care of a few things. 

We delivered some goodies to our heart buddy Bowen who in turn played a song for us on his "Spamjo". Completely awesome!

 

We had to go play on the playground on the 8th floor since Bernie could not participate the way she wanted to the day before. 

 

 

And we got to say goodbye for now...

 

Arriving home, we were greeted by this awesome sign in the dining room signed by all of the kids at Woodland. It's lovely!

 

Bernie was so happy to be able to "cuggle" with her sisters and see Fergus, aka Goodboy. 

 

 

And of course, Bernie wants to sit and page through books of all kinds, but I wasn't expecting this to be what she wanted to look at now that she's home!

 

 

Ah, it's wonderful to be back to the land of full-size bath towels, beeping from household appliances only, and usually uninterrupted sleep. 

We can't thank you enough for your verbal encouragement, culinary support, financial contributions, and loving care. However it worked for you to show your support, we are grateful. We know it's different for everyone and that's what makes it so great. 

For those of you who offered up financial contributions, we are ecstatic to let you know that this money is enabling us to purchase a home testing machine for Bernie to check her INR as needed without having to go to the clinic. When Bernie was a baby, these machines cost between $3000 and $5000, money we weren't willing to shell out just for convenience when the clinic is right across the street from our house. We are now able to get the machine, test strips and lancets for just under $1000. Our local clinic hours have also changed in the last year and is not open when Bernie is out of school for the day. Insurance does not cover this type of purchase. We will now have our own machine and this is going to help A LOT! Thank you!

Thank you for everything and we are hoping to be nice and boring for the remainder of 2017. We couldn't have gotten through all of this without you!

❤❤❤❤❤❤❤❤❤❤❤❤❤

SuperBern Sunday

INR at 2.7 and nosebleeds or not, we will be discharged as soon as possible which hopefully means we can be home by dinner time!! Yippee!

 

Yesterday we spent time touring the hospital and I ate with the girls in the cafeteria. In riding around, Bernie loved it when the girls would run ahead of the wheel chair and hide behind corners in the halls. Bernie also spent a considerable amount of time browsing the gift shop. 

 

 

 

 

Once again, our heart family here at Mott continues to amaze us with their skills, patience, and dedication to providing the highest quality specialized pediatric cardiac care. Bern really is something of an anomaly and there is no other place in our state or even in the Midwest to which I would trust caring for her cardiac needs. FYI, Mott is currently ranked #7 in the nation for pediatric cardiac surgery and care by USNews and World Report. Detroit Children's Hospital is approximately #47. DeVos is not even ranked. Please know this information even if you don't think you need it, especially if you live in Traverse City/Northern Michigan. If you or a small loved one ends up in trouble from a heart standpoint, you can get here from Northern Michigan usually by request only. If there's one lesson I have learned through all of Bernie's affairs, it's that you have to be your own and your children's own best advocate. You shouldn't have to fight or request to get the best care, but you do. And you don't have to be born with a heart defect to need this type of care either. Just take that tidbit of knowledge and tuck it away where you can find it later if you need it. 

So the last IV just came out and here's the fist bump to prove it. Now time to shower and get out of here. See you in the north!

 

 

Saturday Roses and Thorns

Rose:

 

Cuggles with Lucy

Thorn: 5 bloody noses using countless gauze pads and washcloths

Rose: Afrin to help stop bloody nose

Thorn: 2 attempts on 1st blood draw

Rose: Cool infrared handheld device to detect blood vessels

Thorn: Have to poke again before 7 AM

Rose:

 

Sisters crafting together

 

Eating dinner for the first time in a week with my sweet Izzy, Lu, and Sadie😍

Very big rose:

 

 Thorn: I realize that in titling this post that all of this really happened on Friday. Hospital time can warp a brain slightly!

Discharge Delayed

Wouldn't you know I was checking out of Ronald McDonald House just as Bernie was getting her INR checked and her numbers are not worthy of discharge today. Her INR is only at 1.7 and it needs to be between 2.5 and 3.5. 😔

Needless to say I got immediately back on the phone with RMH and got our room back. 

Here's what this means for Bern:

1.  We start Heparin again. She has that new IV from yesterday. 

2. She gets labs drawn tonight at 7 and again at 6am tomorrow. More pokes. 

3. She is in the hospital for at least the weekend. Best case scenario for discharge is Sunday. 

Bernie enjoyed seeing the sisters. We had presents in the playroom and we even caught Bernie trying to RUN to the lights in the corner of the general care floor. 

 

The girls sort of remember the Ronald McDonald House  from when the were small. The most distinct memory was that of the fresh smell of the laundry room/rec level. The renovations are terrific!

 

 

Bernie knows how to make her rounds in this hospital, that's for sure. I can't imagine how many patients have spent multiple hours in the same day on the general care floor, the PCTU, the cath lab, and the play room. She just continues to let us know that everyone in every department of this Congenital Heart Center is needed and valued. 

 

Nurses Rebekah and Sandy help remove Bernie's IJ after her trip to the cath lab for her ECHO yesterday. Even though anesthesia wouldn't remove the line yesterday saying, "It's a hematoma waiting to happen," we did it and it went very smoothly!

Visitors welcome. Just trying to make this as fun of a weekend for Bernie and the girls. 

We will hope to see Traverse City by the end of the weekend or the first part of next week. 

 

Bernie actually enjoyed music therapy this morning. 

Thanks for continued prayers that Bernie can get through these daily blood draws without too much trauma. They are super hard for her. 

Love to all.

In the Cath Lab for another echo

Bernie had some apple juice when she came out of her first round of sedation today. That pushed us to needing to move again at 3 o'clock for another echo in the Cath Lab under a greater degree of sedation. 

We spent an additional two hours in the PCTU waiting for the next procedure. Fortunately, one of the therapy dogs was available to entertain Bernie for a while. Lola climbed right in bed with Bernie and they hung out for a good 20-30 minutes. A perfect diversion. 

 

They're going to brush her hair and give her a bath while she is sedated as well. Hopefully the hair brushing will not push her over the edge into an agitated state.  They may or may not do a transesophageal echo well they are back there.

In the meantime, I went to the bathroom and brushed my teeth for the first time today at 3:00 and I am eating this full order of Count Twists. 

 

I just got word from our nurse practitioner today that everything from this more heavily sedated echo looks good. The gradient across the valve after further, more advanced exploration is somewhere in the 5 to 8 range. 

Her IJ in her neck has been pulled and she has a new peripheral IV in although it really won't be needed. We are bumping up her Coumadin, getting one last finger poke INR check in the morning, and will be discharged!

Can I get an A-MEN!!!!!!!!! Thank you, God! Thank you, Love and Prayer Warriors! Jeff and the girls will be down in a few hours. we have a room at the Ronald McDonald house tonight and will be on the road to Traverse City tomorrow.

Now it really should feel good to see this movie of Bernie laughing with the therapy dog, Lola, before this last big procedure.

Not Coming Home

Not a lot to say right now. Pressures across the mitral valve are not what we want them to be. Lots of people involved and moving parts right now so we don't have a plan just yet. We are just going to be here. Very disappointed. 

Hopefully Over the Humpday

Bern spent the day chilling in her room, walking the halls, visiting with friends, and playing with her cousin, Patrick.

She's wrapping up using her oxygen, wanting to get up, and moving more. She ate 3 great meals and as you can see from our photo report of the day, we had a pretty good day. 

Ironically, we are on the brink of kicking off Congenital Heart Defect Awareness Week (February 5-12). So many of you ask what our family needs during challenging times like this. We need your connection. We need your prayers. We need the amazing science and the advancement of research relating to treating congenital heart disease. Sure, Bernie loves the presents that she gets and we certainly have enough to keep us busy here in this hospital room for quite some time, but most significantly, we need to be assured that her condition can be successfully treated over a lifetime. Today the hospital launched a new challenge for heart week to raise funds to make that promise to Bernie and kids like her. Donations will be matched by The Charpie Family Foundation up to $30,000. If you are interested in this opportunity, please click here.

 

The CHC Patient and Family Centered Care 3 Momskateers. 

 

 

 

 

 

I hope Bernie likes Patrick's hair. It may come out looking just like his by the time we can shower and untangle it!

 

Tia on rice table overload. 

Thanks again for following along.  Tomorrow is a big day. Hopefully all of the numbers will be on our side.  An update will be posted in the afternoon.