As Dorothy Says...

There is no place like home! Forgive me for the delay in letting you know, but I have been sleeping for most of the last 4 days. Even on our discharge day last Friday, I managed to sleep until 11AM IN THE HOSPITAL. The team wanted to wake me up so badly to give me the news of her qualifying INR of 2.7, but it was obvious I needed the sleep time, especially as I drove home later that day.

Bernie is doing great at home! I even saw her running through the house Friday night when we arrived. This is truly awesome! For someone who wasn't expecting to get back to life for a few more weeks, to see your child running through the house 8 days after her heart surgery with our past experience is STUNNING! As a baby after her last heart surgery, she wasn't even breathing on her own for 6 weeks. This time, she was barely intubated (on a breathing machine) for 6 hours! And then running 8 days later just seems to be more consistent with dreamland than reality. The difference between a baby and a big kid is truly night and day.

Bernie practically jumped into her hug with Lucy and was ecstatic to see her sisters.  They all doted on her, doing all of the things she wanted to do for hours.  They set up cars with her, took turns reading cards from her class to her, walked around the yard, and asked what she wanted to watch for a change on TV.  Doing hard things surely gives us appreciation for the simple, everyday good stuff right before our eyes. I see it in the older girls, too, and seeing grateful kids is truly a blessing.

And of course, she missed her "Good Boy", Fergus, and was so glad to see him.

Hattie Jo also stopped over to see how Bernie was doing. And before we knew it, the big girls had a lemonade stand set up and Bernie certainly seemed to help with the marketing. All in day 9 after surgery!

When I was packing for our hospital stay, I packed full-size shampoo bottles and toothpaste as well as summer clothes.  I believe what Dorothy really might say if she had just had her child go through open heart surgery in this fashion: "There's nothing like coming home with nearly full, non-travel size shampoo bottles!"  This is the polar opposite of that soak tub described in earlier. Upon washing my hair, I will certainly be reminded that preparing for the worst case scenario is possible to be just that: preparation. Reality often has unexpected goodness waiting for us that we can be extra joyful in experiencing.

I suppose that's our lesson: To expect good things. And to expect surprises. But if you are part of our support team and readership, you've taught us better.  We have learned from you that we can expect amazing things.  The cards, notes of love, extensions of support in so many forms. You are incredible for all you did to help us get through this only to stand in the sunshine. We are so fortunate to have you.  Our next follow up is June 8 in Ann Arbor. We will expect good things! Thank you for everything.

Not today...

Our INR is only at 1.8 today. We will still be here today and hope tomorrow will be our day so we can push north like everyone else from metro Detroit on a holiday weekend!

 I am so sad to have missed my big girls'  band and choir concert last night. Jeff was able to get a video of Izzy's first solo though. She told me last weekend that She decided she could finally give it a shot as she said, "If Bernie can do what she did and be that brave, then I can sing a solo."

As soon as I have the links to the snippets from the band segment, I will post those as well. I am very proud of Izzy the the oboe player, Sadie the trumpet player, and Lucy the saxophone player. They have worked really hard and sound great!

Bernie has really enjoyed getting cards, mail, and packages from her fans. Thank you so much for creating nice diversions in our days!

 

Would you like fries with that?

We cleared our discharge ECHO and it looks great! We are still looking at a post-op gradient of close to ZERO in that left ventricular outflow track (that number that was around 97 and expected to get as good as perhaps 15-20). Now we are just waiting for her INR (International Normalized Ratio measuring the effectiveness of anticoagulation medication Coumadin/Warfarin) to get high enough (thinning her blood out once again) for discharge.  This can take days, but we are hoping for a big jump in the morning from 1.2 today. In plain English, the bottom line is that as soon as that INR lands between 2.5 and 3.5, we can be discharged!

This current hospitalization seems like drive-thru pediatric cardiac surgery to me. I am waiting for the nurses to offer me french fries when they bring other things to the room. Okay, maybe tater tots. They don't have french fries on the hospital menu here in any way. And they totally hold the ketchup captive in the cafeteria as well.  Even when you remember to ask for ketchup on a tray, you only get 1 packet. But I digress. The typical pediatric cardiac surgery experience is really less than or about equal to 7 days. This is still so hard for me to believe. Our need for the heparin bridge due to Bernie's mechanical valve keeps us here a little longer, but still! This is typically a very doable hospital stay!

Many of you are probably wondering: Is this it for Bernie? Is she done now with having heart surgeries? That answer would be no. At best, she is up for at least one more heart surgery when she is a teenager. It will likely be the need to replace her mitral valve once again that will drive the scheduling of the next surgery. When she was 9 months old, a 16 millimeter Carbomedics valve was shoe-horned into her tiny heart. It's still working well, but will need to be replaced to get her through adulthood. At the time of her 3rd surgery in 2008, they only made adult valves, but in recent years smaller pediatric valves are being produced.  As you could imagine, there is only a very limited portion of the population that utilizes this technology, but I am glad to know this is more of an option for small people.

Enjoy some pics from today.  My lovely Black River friends feeding me and keeping me company this past week are all going to heaven. Thanks for the cards, goodies, and love from those of you afar.

 

Chest Tube Out...Off to the Rice Table

Another great day! Chest tube was taken out around 10am and once sedation wore off, Bernie was eager to get to the play room. Movie here. 

Rice Rice Baby

Bernie's INR was only at 1.2 this AM, but it could not be too close to our ideal levels when taking a chest tube out. It will likely be difficult to jump between 2.5 and 3.5 by tomorrow. We don't need any cardiac monitoring any more so we lost those leads that hang off her body as well as the oxygen. Once we get that INR right, we can then ditch the IV heparin. We should be good to be discharged by week's end as long as her discharge ECHO looks good and that will happen under anesthesia. tomorrow at 8AM in the cath lab.

Thanks for following along! All the love is really appreciated!! We don't get through this stuff alone.

General Care Photo Update

A rainbow over Mott tonight is beautifully suggestive! Chest tube comes out tomorrow! Home perhaps as soon as Wednesday. We just have to get that INR right as soon as we can after the tube comes out. It would be bad for her to have too thin of blood and pull this big tube from her. Here are some photos of our progress in the past few days. Enjoy!

Back to general care!

If you find yourself still amazed that our girl, Bernie, spent barely 24 hours in the PCTU, then you are not alone! We moved yet again and progress continues. This also means that we are out of the Mott House and living out of Bernie's hospital room once again. I joked with one of the nurses saying, "THIS is the heart surgery experience you give most people?! How did I miss this the first 3 times around?!?"

Probably the biggest milestone we experienced yesterday was getting out of bed and walking to use the bathroom. If you were impressed with her ability to get through the surgery itself, that almost seems small compared to the monumental task of getting her up and back to doing life afterward, especially in such a short period of time post operatively. It took four of us to move her 10 feet from her bed to the toilet. We had to transport her IV pole with about 4 pumps running, her chest tube drainage box, and all of the leads still attached to her aching, shell-shocked body also hanging around her abdomen. One person had to move the IV pole, another to carry the chest tube box and maneuver the tube, another person to hold Bernie's hands, and a fourth person to run interference regarding the physical environment. She will probably have her chest tube for another day or two. It's more painful than the actual sternotomy at this point. It's an open-ended tube sticking out from right around the base of her rib cage  that collects excess fluid from the chest cavity which is typically removed 2-4 days after surgery. Once this is removed, we can expect Bernie to be much more motivated to participate in physical activities.

Thank you to those sharing this journey with your children. I know that may seem an odd thing for me to be grateful for at this point, but it really does matter. Many times we want to hide the hard things from our kids. I understand to an extent, but something amazing happens when children are part of relevant, difficult paths and presented with the opportunity to understand rather than to remain oblivious. This is where the first seeds of compassion, empathy, and courage are planted. This is where they find out that people can do really hard things and come out stronger. When seeds of oblivion are encouraged to grow, those fruits can look more like fear, apathy, and ignorance.  Children part of guided and appropriate understanding learn that they don't have to be scared of people with complex medical problems and can actually be part of a helpful, healing solution. Thank you for those of you doing this kind of planting this spring as you discuss Bernie's situation and make our current lifestyle part of your discussions, prayers, and priorities.

Bernie is off of her IV morphine and taking her pain medication all orally right now. Her dressing from the sternotomy will come off this afternoon.   She's been up twice to use the bathroom. Here's smidgen of a visual on that one. Such a basic detail of life that we take for granted. We do so many complex tasks each day that usually go unnoticed.

Bern visited with her sisters last night and again this morning. Auntie Annie and Grandma Patty are also helping wrangle big girls and provide some nice distractions for Bern.

Thank you to our line up of support soldiers bringing food and support in so many forms. Bernie loves you!

http://youtu.be/twESCibZnKo

Smoooooooth....

If I could play a little Carlos Santana as you read this, "Smooth" would be the track playing upon clicking this post.

She was exttubated before I even laid eyes on her after surgery and I am still floored by that. She is on one liter of oxygen, we are weaning down her morphine, and she just asked for a cheeseburger. Her she is getting her EKG this AM.  We took out two of her peripheral IVs and her arterial line this morning. Progress!

Rounds just occurred and should she clear a little more junk from her lungs on her own and sound clear, she is stable enough to move to the floor and out of the PCTU. I am in shock that this is my child we are talking about! My prior experience here makes me nothing less than scarred and traumatized, but it looks like we will be spending only about 1 day in the PCTU as opposed to the 100 from the last time.

I slipped out to snag a cup of coffee and the rounding team showed up while I was gone. They ended up coming back a little  later so I could be part of the discussion. This is just one example of how patient and family centered care translates into the health care experience here. It's nice seeing these pieces in place and improved from our last stay. Families are part of the team to provide input, information, and participate in the decision making process because it does produce better outcomes.

Also, a word about hitting that drive through at McDonalds. If you choose to drive through, throw the change from your food into that little box. The new Mott House here in the hospital has added a completely new dimension to parent functionality. There are 8 private rooms, each with a single bed and a recliner as well as a private bathroom and shower. We were so lucky to get one!!! This space is located on the same floor of the hospital as the PCTU. There is a community kitchen and living room with a peaceful view. I can't tell you how amazing it is to be able to  slip away to private shower, take a private nap (Temperpedic donated a twin mattress for each room), make a private phone call, or eat something without paying cafeteria prices. Donations make all of this possible. Thank you for considering this next time you find yourself with a drive-by French fry craving.

Thanks for following along and we will have an update next when we move to the floor and get a visit from the big sisters.

Post-Operative Bern

We just got back to see her. She looks really good, demanded to be extubated already, and has a nice little braid in her hair. She rests for now, but could be angry when she comes off the big drugs.

She still has all of her lines in and will until it's determined we don't need that level of access anymore. She's back in a normal heart rhythm and gives us little reason to believe she will pull any tricks in that department.

We are thrilled with how things have proceeded this far and know that we need to have a really good 48 hours post-op for me to be convinced things are really going along this smoothly and speedily. I walked in the room to see her and the "STAND BY NOT VENTILATING" screen was already in front of us. It took 6 weeks for that to happen last time! There is even talk that if she has a good night, we could go back to general care tomorrow. They even moved the ventilator out of the room!

Keep the love, light, and prayers flowing! It's working!

Surgery Update 3.0

9:25 AM   We sent her off to the OR about an hour ago.  We anticipate some challenges getting through the scar tissue. It's very hard to see your baby get wheeled away when she sleepily asked for me to sit on the bed. I told her I would be there when she wakes up. She said she would be good for "Nenna"...what she calls Dr. Romano.

In leaving the pre-op area after Bernie was wheeled away, we got in the first elevator that opened up to take us upstairs.  In it was an older couple, probably in their late 70s with their adult daughter with Down syndrome coloring a blue bird in a wheel chair.  That made us both feel really good.  We will take all the good signs we can get.

Chaplain Julie (our favorite) met us in our room and we had a nice prayer together.  We will just be wandering around together and packing up our room here in general care to move to the PCTU. Not really feeling social at all, but will keep updates coming as we can.

We won't see either of them for a few hours. It may be well after lunch.  Updates will be added to this blog entry as we have them.

Thanks for following along.

11:22 We just got word the Bernie is "playing nicely" in the OR. They got through her sternum without issue. Her chest is open, all the lines are in, and she is on bypass (heart lung machine). There is a room now available for Jeff and I at the Mott House through the weekend (8 in-hospital Ronald McDonald accommodations). It has a single bed and a recliner chair where we can sleep and take naps to survive the PCTU. We should have another update in an hour on how the sub-aortic stenosis resection is going.

12:08 the resection is complete, she is off bypass, her gradient is at 0 from 97(wow! We were going to be happy with 15-20). We will be seeing Dr. Romano soon and they even think she will be extubated today. Let the recovery begin! This is where we can really hope and pray she still plays nicely!!

Cath Lab Results

Yesterday (Day 2) was a fairly easy day spent visiting a few different play rooms around the hospital.

We left for the cath lab around 7:30 and had some medication to sedate us again before going back to the cath lab. This photo was taken before our extra sedation. It sure makes the Cath Lab look like fun, right?

This update will be rather simple in that Bernie will proceed to the operating room tomorrow morning as expected.  The pressure gradient inside her left ventricle that should be close to zero is now in the high 90s as a result of the measurements this morning.  We can wait no longer to address this problem.

Recovery has been okay with no extra bleeding.  It's pretty hard for Bern to come off some of these heavier drugs and she gets grumpy. She has a large dressing on her groin and is a bit uncomfortable. We are glad she's eating her lunch right now (again, no gown, Body by Bernie style) and we will be taking it very easy tonight.

 We will be the first case tomorrow and release her to the OR between 7 and 8 am.  The surgery should take about 4 hours and we will probably get to see her in the early to middle afternoon in the PCTU (Pediatric Cardio-Thoracic ICU) Remember: this is what makes Mott unique.  No other hospital in our state of Michigan has an ICU dedicated to the critical care of kids and people with congenital heart defects needing critical cardiac care. The nature of their post-operative behavior is completely unlike adults with acquired heart disease and requires high levels of training in understanding how to treat them.  It's reassuring that she will be in such a  specialized area where her issues can be more effectively monitored. Even though we would rather not have to go there, we are so lucky to have their care.  Here's hoping we don't spend months there this time.

Thank you so much to those of you who have sent cards, gifts, meals, and messages of support.  We may not be able to respond immediately, but do truly appreciate your thoughts and effort. Specific prayers for minimal bleeding and ease in getting through the scar tissue surrounding her sternum would be appreciated.