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! 

 

Movin on Up Today

Bernie did pretty well yesterday. She ate a couple small meals, drank a bunch of apple juice, and tried to go potty. She also got to start her warfarin back up last night. 😊

 

On the flip side, she also threw up a couple of times and had to have a catheter put in early this morning around 4 or 5 to help relieve some of the pressure in her bladder. If you've ever had a foley in you know it can be tricky trying to urinate afterward. Let's hope this resolves today. 

 

We will be headed to general care up on the 11th floor. It's a little more difficult to update as my patient needs tending. I'm sure you understand. 

 

Our big goals for today are to try and use the potty, walk around a bit,  see the big sisters, and settle in upstairs in general care.  Her chest tube continues to drain and we will work toward getting that out in the next few days. She is still sounds pretty junky and even though her chest x-ray has improved from yesterday, we have some more coughing and clearing to do today. 

 

Thanks for following along and another update will likely come tomorrow. We have about 24 hours of whole family time together until next weekend. Big hugs from us all!❤

We appreciate all of your ❤, 💪🏻, and 🙏🏼!

A Good Night and Out of Bed

Bernie kept things quiet last night wanting only a few things: Good boy (our dog Fergus), Mama, "Cuggle Bay Bay" (cuddle snuggle with Dad), and apple juice. 

We stopped one of her drips, discontinued the lasix, and started her on some oral meds for pain control. 

 

Resting with "Good Boy" and Red Monkey

 

"Cuggling with Bay Bay"

She has her arterial line and foley out, had a few bites of eggs, yogurt, and sausage, and is currently sitting in a chair. She has been drinking a lot and even tried to use the potty chair. 

Bernie is pretty cranky and it is very hard for her to move around, but we are working hard to minimize her pain. 

 

Our plan for today is to stay in the ICU, start her back up on her Coumadin tonight, and get her breathing deeply as her lungs are a bit junky from everything. 

A big part of our team today, Nurse Kathy and her other half  attending cardiologist Dr. John Charpie (or as Bernie calls them "The Sharkies"🦈) are overseeing most of today's affairs in the PCTU. So glad to have such wonderful care from everyone working to heal the Bern. 

 

 

 

And if you ever need anything done, you just look at all the names of people commenting, liking, loving, and praying for the Bern! These forces are STRONG! We thank everyone for signing up to bring meals, donating to Bernie's medical expense fund, and powering positive energy in our direction. This love army is amazing! Thank you!!

Like "Moana", one of Bernie's new favorite movies, we have succeeded our mission  to "restore the heart" so that once again the people can be at peace and prosper. We are hoping to be up on the general care floor tomorrow to fully complete this mission over the course of the next week.

Post-Op Bern

We came to the room to see Bern after surgery and witnessed her extubation. She started to wake up a little bit and did not like that tube in her mouth. She's a little puffy, but that is to be expected. This first picture was before  she was extubated with the breathing tube in her mouth.  

 

 

 

Bernie is just going to rest tonight. We will leave the central and arterial lines in until tomorrow at the earliest. Her blood gases have looked good post-extubation. 

Nurse Sue is healing the Bern tonight and she was there July 26, 2008, the night the crap really hit the fan. It was the worst night we ever had and came so close to losing her. Sue indicated that Bernie's story still comes up when training new nurses relating to extreme cases of pulmonary hypertension and how kids can surprisingly rebound. I still keep and wear the  PJ pants I wore running to the unit that night as a reminder of what a bad night really is.  It's my "Pajama Perspective Theory" that every night after that one really is managable. I've mended them 3 times and they are paper thin, but I refuse to get rid of them.  

 

We may be opening a tab in the gift shop. Bernie will be scouting for presents when she wakes up tomorrow. We assured her when she wakes up there will be presents and she must have reminded us 3 or 4 times in the pre-op area. 

The good news for Jeff and I is that we scored a room at the Mott House which is the Ronald McDonald House here inside the hospital. It's so wonderful because we have our own personal sleep deprivation tank with the comfort of a nice mattress, private bathroom, and comfortable community living space. 

The "Michigan From the Heart" group of athletes stopped by again this week. Bern didn't really know they were there, but Jeff and I had the chance to talk with them and reminisced about life as college students who met here at U of M on the last day of the last term of drop/add that we were both here. They were excited to know there was "still hope" as some of them were upperclassmen. Oh, and Izzy, rowing scholarships for girls are real! Two of these ladies are on the UM rowing team.

 

Thank for storming the heavens today with your prayers and well wishes for strength, wisdom, peace, and healing. We have felt the love! Getting out of the PCTU is the next box to check and getting her heart rhythm back to normal. We are not out of the woods yet by any stretch, but we are feeling good about where things are and aiming for a quiet night. 

I'd also like to thank and acknowledge my brother Jeff  (shot and killed 31 years today) for what I believe to be "working for us from the other side" on a day that is notably hard for my family irregardless of other medical trauma. His heart and other organs were donated to people in need. In his honor, please consider being an organ donor and demand that guns and ammunition be made inaccessible to children in every home, at any and every developmental stage. Thank you. 

This Valve Came Out

Just met with Dr. Romano. Everything went well. Her new valve is in, but we are waiting for her normal heart rhythm to come back. It may take a couple of days. This is always a risk as an intervention has taken place near the heart's conduction system. 

This is the old 16mm valve (about the size of a nickel) that came out for us to see (upon my request). It was layered with tissue around it like a big pie crust with a hole enough to move the leaflets of the valve. It is actually pretty cleaned up here. Remember: This was the valve shoehorned in when her heart was the approximate size of a golf ball and she weighed about 12 pounds. Once pathology is done with it, we will take this little gem home with us, but this is what has kept Bernie alive for the past 9 years. Amazing, right?!

 

Bernie should be upstairs to the PCTU in about an hour. 

Valve in and looking good

Bernie officially has a new 18mm Carbomedics valve in and working. She's coming off bypass now. Transesophageal echo complete. The team in the OR is going to be finishing things up soon. 

Will be meeting with Dr. Romano in about 30-45 minutes. 

The Hand Off and The Wait

We left Weber's (hotel) this AM and told Bernie we were going to the hospital.

She said, "I see Nenna".  We confirmed that she would see Jenna (Dr. Romano) and that we were going to have some sleepovers to fix her heart at the hospital. "I go do it," she responded. 

While driving up the parking structure, she called out, "Strong". At least for those few moments we feel she had a positive outlook on a difficult situation. 

Arriving on the 4th floor, we checked in and went back to our pre-op bed space. The pics speak for themselves. Activities below included signing your child's life away, trying to get Bern to agree to the pulse-ox and pic with her fave surgeon Godmother, and waiting for intranasal versed to do it's job (I got to administer half of it as it took a team to restrain and align her). 

 

 

 

The breakdown: operation got started at 2:28.  I just got a call a few minutes ago that they are through the chest wall, she is on bypass, and proceeding as planned. 

Next update in an hour or so. 

❤

"I Can't Like It"

This is Bernie's favorite response when there something in her world she doesn't want. We've adopted this way of expressing disapproval and even though it's harder than hell getting out the door for this sort of affair, we gladly choose it over the alternative of not having a way to fix our baby. 

We made it to Ann Arbor yesterday afternoon. 

Just trying to savor some easier moments before things really get started. 

 

 

 

 

We have Bernie admitted for handoff at 11:30. The surgery will be anywhere from 4-6 hours and begin around 1:00. 

The most challenging part of the surgery will not be actually replacing her valve. It will be getting through the chest wall and through the scar tissue from four other surgeries. There will be a series of brief updates during the operation. 

We are very fortunate to have had a series of helpers this week to help with injections both in Ann Arbor and at home. It's not so easy finding pediatric homecare independent contractors in Traverse City! Kathy, Samantha, and Tammy we so appreciate your special attention and willingness to relieve Jeff and I of this extra stress. 

 

Nurse Kathy shows Bernie pictures of her kitty after administering her last pre-op Lovenox injection. 

 

 

Thank you for the amazing outpouring of support and your messages. We really appreciate this especially since it's hard to pick up the phone and make FaceTime when there so much going on (and we are trying not to verbally surround Bernie with these foreboding conversations). Your connection means and says so much. We love you all!

Thank you for keeping Dr.Romano(her surgeon and Godmother,formerly Hirsch) Dr. Ohye(surgeon on reserve), Dr. Charpie (attending in the PCTU today),the entire pre-op and OR staff, and the PCTU nurses and staff specifically in your prayers. 

Support Team Housekeeping Notes

Thursday

Surgery is scheduled for second case and should begin around 1:00.  We will be admitted on Thursday morning.

Meals and Food

Thank you to all of you who so generously have offered to help provide a meal, take some kids, or just about anything.  It means a lot.  We have a "Meal Train" set up and if you are interested in helping out in the food department you can click here. A new addition to this link is a button to just send some good old fashioned cash as eating at the hospital (if you're not Bernie), transportation, eating at restaurants with 5 people, and incidentals all add up. Thanks in advance if this is a way you can and want to help.

Watching "Moana" before the fire alarm.

HIPAA

Most people understand HIPAA, but just know that Bernie's doctors, nurses, or any other employee of Mott Children's Hospital are not allowed to disclose information about any of the patients to just anyone.  I can basically say whatever I want, but in the event that I do not provide information at a rate or in terms of content that satiates your curiosities, please do not try to get information from Bernie's care team or other hospital employee.  They just are not allowed to tell you and can lose their jobs for sharing such information. Likewise, they are not allowed to tell you about what may be the matter with other patients who may be close to where Bernie is staying.

Similarly, this blog is where accurate and reliable information will be posted in a timely fashion. If it's not up here, there's nothing more to know at a given time. Check it as often as you like, but there will be no "back or bonus story" available via group text or email chain.

Sisterly love.

VISITORS

In the event that you would like to visit (we usually love visitors!), there are several security measures in place.  Healthy visitors need to be badged before you can enter any patient care area.  Do not come if you have any cough, cold, or flu-like symptoms. You will have to check in at the front desk in the main lobby of the hospital and again at the security desk on the floor you will visit (we will be on both floors 10 and 11 during our stay).  Valet parking is the way to go in my opinion, but it is frequently full.  P2 is the name of the structure in which you can park yourself.  I cannot guarantee Bernie will be smiles and sunshine and she may just be ornery.  Don't take it personally if she doesn't openly love seeing you or something you may bring or act happy you are there. 

Knowing What to Say

I've used this article in some of my work with families both in my professional and personal interactions. If knowing what to say is not easy for you, this provides a nice way to at least tell you how to not say the wrong things. It's great for a variety of crisis situations that don't even have to be medical in nature. It's worth the read if you want to click here.

Random dancing with Lucy at home. 

What Bernie Likes Lately (in no particular order)

The movie "Annie", Paw Patrol, shark pictures, the movie "Moana", pop music, chocolate, Fergus, swimming, animals, cheeseburgers, matchbox cars, her parking garage for the cars, her sisters, sleeping in the kingdom, her cousins.  I'm sure I missed a few. Feel free to post pictures with #healthebern attached to them on Facebook or Instagram with any message or greeting for Bernie and I will show them to her periodically as looking at pictures that include people she loves, herself, or above references is really fun for her.

Sending Stuff

Our mailing address:

Bernice Smith
Michigan Congenital Heart Center
C.S. Mott Children's Hospital
1540 E Hospital Dr 
Ann Arbor, MI 48109

Thank you so much for your love and support during this challenging time for our family.  We know lots of you have been following our story for a healthy 9 years. If you're reading this far and/or for that long, you must not be sick of us yet and for that we are grateful.  Godspeed and Go Blue.