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.

Brighter Day

Whew. Glad today was better. Thank you for lifting me up after the downer day yesterday. Not the worst day I have had in this arena for sure, but it's never easy receiving news that's less than what you want to hear, especially when the stakes are so high. I managed to sleep from about 2am-6am and for some odd reason felt like pressing forward with a little room organization even before my coffee retrieval mission this morning. 

 

 

We had a calm and easy day with no vomiting, nosebleeds, or extreme bouts of being upset. 

Bernie ate a full breakfast, lunch, and partial dinner. She received 3 pints of blood since last night and is looking and feeling more like herself. Fingers crossed for a great repeat discharge ECHO on Thursday!

Just to remind you what is at stake based on Thursday's ECHO: If the gradient across that mitral valve is 10-12 or less, we can be sprung for home if her INR is therapeutic(2.5-3.5). We would come back in a few months for another ECHO. If pressures are still at 15 or higher across that mitral valve, Bernie will go for another heart catheterization on Friday. If pressures are confirmed to be this high in the heart catheterization, we will schedule another surgery for a larger valve as soon as next Monday. 

At a minimum, Bernie has 2 more sedated procedures: the ECHO and removal of the IJ line in her neck where we access for blood draws, transfusions, and IV meds. 

Her heartrate is still trending on the higher side, as high as the 110s at rest last night. She's usually a 60-70s kind of girl. 

 

Destiny the whale shark does a great job keeping Bernie oxygenated with her "blow-by hole".

Thank you to those of you who can donate blood and do!! It's so important and appreciated. Bern is feeling so much better with her new blood, we walked to the lights at the end of our hall, played cars, and had spa night in the room. This is primarily when Bernie brushes my hair, we play soft music, light candles, and she practices putting ponytails in and taking them out of my hair. She seemed to even crack some smiles today. 

 

Some other fun things we were able to do today included crafting in our room, standing at the sink to brush our teeth and wash hands, and play some games. She continued to drop just about anything with the possibility of a present so thank you to those of you who have sent some goodies along. 

We may even consider cracking in to that squirrel's nest in her hair tomorrow. It could take time, if not a scissors. If Bern has a new do when you see her it's because our detangling efforts were simply not successful. 

Onward to Thursday. Thanks again for the many loving and affirming words. We will heal the Bern! Let's just hope it gets to be the easy way and we can go home Thursday. 

Monday, Bloody Monday

Today is all about the blood and flowing of fluids. Not such a great day to be totally honest, but if you have been riding the Bernie Train long enough, you know it comes with a lot of twists and turns. And you get both. Sometimes lots of them. 

Bernie still requires oxygen and apparently it's really drying out her nasal passages. Hence the dreaded nosebleeds. She's had about 4-5 of them so far today and as an anticoagulated young lady, that means they can last much longer and be more intense. Difficult when you couple that with pain management, basic recovery, and the fact that you are also unable to eat since you're throwing up with a sternotomy and chest tube wound. We've got more of a humidifier element added to the blow by tube so that should help a bit. 

 

Her procedures did not start until almost two hours later than expected. That's a long time for a kid who wants to eat, but we finally made it. 

 

She's peed, pooped(yay!), vomited a few more times, got her chest tube out (yay!), and had her discharge ECHO. The discharge ECHO shows that the pressure across her mitral valve is drastically higher than her post-op ECHO (went from 2 to 15) and is about what it was before surgery.  This was disappointing. We had to then quickly go to the Cath lab for a type of x-ray of the beating heart to show that the valve was not the issue. It's not. It's working great. But, yes, pretty scary for about 30-45 minutes until the valve leaflet function could be ruled out. 

 

 

Another suspicion for this higher gradient is that she is anemic which can falsely elevate said pressure gradient. Her type and screen indicates this is an issue. She's getting a blood transfusion right now to offset this. We are going to give it another couple of days and let her chill and recover, get moving a little more easily and we're hoping in another couple of days the ECHO will show some different numbers. We know Bern takes time so we need to give it to her. 

 

Now if it takes more than time, a more back of the brain idea is that this size valve really need to be bigger than it is (despite being the best and most reasonable size and fitting well) and shoehorned in along with likely a pacemaker. Yes, this may mean another operation. Don't know when. That will depend on her.  

Her heart rate right now is higher than her baseline and we are hoping it slows down a bit more to ease up those pressures. We are really hoping this changes. 

 

Bernie herself has had a terrible day not knowing any of this technical stuff by name. She obviously feels terrible and even presents didn't get very far today, even if they did help slightly. She hasn't eaten in 2 days and has no interest in food. 😞

So how am I doing? Honestly today sucked. All of those feelings of needing to rush back into surgery couldn't  help but move to the front of my brain. And, no, there's nothing anyone can readily do for me. My clothes are spattered with blood, vomit, and oxycodone. I taste salty,  bloody secretions on my own skin from kissing Bern and holding her close during the day's  seemingly endless procedures. And I will do it all over again tomorrow for her if I have to because that's what you do as a parent whose child is in need. Anything it takes. Because she is who she is and so very worth it. 

 

So turn it back on, Warriors. You're in it. We will be here for a bit more and can't quite fully celebrate yet. But someday we will. 

Thanks for being there. 

A Good Day for a Bad Hair Day

I'm happy say that we are worrying about lesser things today! Bernie is keeping food down better, successfully used the bathroom, her chest tube output is decreasing, and she is sitting up in bed on her own without assistance (if presents are present). Most importantly, we have seen brief smiles, even if she still hurts quite a bit. 

We hit the floor and the sisters arrived within the same 20 minutes. Getting up and out of bed to walk to the rice table was an instant priority. It was a great distraction and motivation to finally get moving and have interactions with the girls. 

 

 

The big sisters did some extreme crafting with the child life team. I am pretty sure they cranked out more crafts in an hour than the staff had seen in there all week. Bernie said she wanted to do some crafting, but her tummy said otherwise. She went back to the room and threw up instead. Red Monkey helped her sleep it off. 

 

 

I had a "Saline Reprieve" at my cousins' house to stock up on sleep. Jeff stayed on at the hospital while the big girls and I ducked out. Staying in this hospital environment certainly makes me want to put plush carpeting and soft surfaces throughout my house. Every little exchange in a comfy home is really such a luxury. 

Today we had a pretty social day and visited with the cousins, family, and friends. 

 

 

 

Bernie certainly enjoyed a few more presents as well as cards and pictures of everyone in her class. She had to sleep off the excitement once again, but all of these pictures are taped to the wall for her to see. Such fun cards!  Don't worry, 2-3 kids, Bernie is again eating cheeseburgers and will be back to school within a couple of weeks!😍🍔🍔🍔❤ 

 

Tomorrow is an big day as the dressing on her sternum will come off, the chest tube will come out (very unpleasant from my perspective, but she will feel so much better), we will get more aggressive in increasing her INR, and maybe, just maybe we can think about addressing this...extreme bed head!

 

It will be a good day when this is our biggest issue. It is the densest, most matted bird's nest of a head of hair I think I've ever seen.  

Your prayers and positive energy to get through the procedures tomorrow would be appreciated. If you could also include Uncle Alex (Jeff's brother) who will be starting round 3 of 4 of his chemotherapy, that would also be appreciated. Our Grandy is working on clearing her lungs so she can continue to battle stage 4 GIST like a boss, but she's also needing some prayers right now. It's a tough time to be a Smith, but Bernie prayer warriors have tremendous healing power and we can share the love I'm certain. Thank you!!

Happy Sunday, Everyone!