Post Fontan - Days 2 & 3

Editor's Note: this was written Thursday night and it did not publish. 

We are already 3 days post Fontan and it seems like we are much further down the road. We have been so busy recovering that we haven't had much time to update. But no news is good news. 

Yesterday Audra got her orders to move to the general floor. But like our previous stays here, there is no room for us up on the general care cardiac floor, so we stay in intensive care. The boy in the room next door had orders to go to the general care floor since Monday and just left today, so we are anticipating staying here in the PCTU for a couple more days. 

Audra is doing much better now that all of the heavy sedation and pain killers are out of her system. She is back to her smiling and waving self most if the time. She is still a professional sleep fighter and tries to roll onto her belly, which she cannot do because of her chest tubes. 

Speaking of chest tubes, they have thrown around taking one out but have held off because Audra had not drank much (yesterday). But she has picked up in drinking and eating too and she is more active. Often times this causes an increase in the drainage from chest tubes but so far for Audra, this is not the case. We suspect that she will get a tube or two out tomorrow. It is likely they will keep in one or two for at least a bit longer. But it is looking like we are not going to have a long stay because of chest drainage. Of course, this comes with the disclaimer that things can and sometimes do change in just a moment. But for now we are cautiously optimistic and liking it.  

We have enjoyed visits from friends and family. We think that our older daughter may not want us to come home as she is having fun with grandma and grandpa and gets to go out on adventures with our nanny when she is not visiting us. When she is visiting us, she is having a ball in the Game Day Experience, which is a maize and blue playground here.

Also, thank you to so many who have prayed for us and gotten others to do so as well. We are very thankful and feel very blessed. 

On a lighter note, my husband met Brady Hoke yesterday and today was offered tickets to a UofM hockey game. He is often a lucky guy. 

We will keep you posted. All the best!

Post Fontan - Day 1

Audra is making great progress. It is hard to believe that she had surgery just yesterday. Audra is really ready to get up and going but we have to take things slow. 

We have known that Audra likes to do things her way or throw a tantrum. And this seems to be not too different. She has not been cooperating with having a nasal cannula. Whenever she is awake, she goes straight to her nose to try to rip it off. You can tell it is really bothering her but as the day has gone in, she has tolerated it better. Hopefully, it will come off tomorrow. 

Last night we had one of our favorite nurses which really calmed our nerves. She did a great job responding when Audra was clearly uncomfortable and we feel like she is getting the best care possible when in her hands. All of the nurses, okay most of the nurses, here are really great but it is especially nice to have one that you already have a trusting relationship with caring for your little one in the first night. 

Audra's oxygen saturation levels have been great! Although she still has a low flow of oxygen, she has reached sats of 96 and 98. This isn't much for most of us but for Audra who was at 82-ish pre-op, this is huge. She is going to have so much more energy once she is fully recovered, it will be unbelievable. 

Audra got 3 lines out today with another repeat nurse. One of the lines measured the pressures in her heart. This is one that is nice to have out because Audra is able to move more without fear of puncturing her internally. 

She has been weaned from most of her iv pain killers and is moving toward taking meds orally. This will allow her to get rid of another line so she will only have her iv. She also had been drinking a fair share of juice and milk but got an upset stomach and rejected it back out. So we are letting her stomach settle a bit

more since the anesthesia can cause an upset stomach. 

For a while today we thought that she was in pain because she was crying,

gritting her teeth and trying to roll over. But after adjusting her pain meds, we decided that Audra was just showing her dislike for the current situation (as her dad would say) and letting us know. As we weaned her from the heavy pain medicines, she began to do better. Her night shift nurses tonight even got a wave from her. Audra got to watch part of the Tigers victory tonight and is now sleeping. 

Thank you for all of the love, support and prayers we have received. 

Now we have to pray that The drainage from Audra's chest tubes clear up especially as she is on the move and eating here the next few days. We have heard over and over that the drainage from the tubes is what keeps kids here so we need Rhodes prayers that her drainage clears up and we have no other unforeseen issues. Thank you in advance!

All the best! We will update again soon. 

Fontan Surgery Day - Surgery is Done

Surgery went well and quick. Our first update from the nurse practitioner was the only update - just after 10:00. At that point, Audra was already done with the procedure and getting off the by-pass. 

Dr. Bove then stopped by and told us that everything went according to the plan. There were no issues and they hoped to get her off the ventilator by the time we got back to see her. 

The social worker just stopped by told us that Audra is in her own private room - not the bay. And one of us will be staying at Mott house, which is the in house Ronald McDonald house. We should get to see her soon!

Thank you for all your prayers!! Now the recovery is starting!

We will keep you updated!

Fontan Surgery Day - Waiting Begins

Our early morning went well and Audra was in a good mood. She was giving us smiles when we had to wake her up at 5 am. She does not get this from me. 

The good part about driving to Ann Arbor at 5 am is that Audra took a nap, there was no traffic, and we got a front row parking spot. 

Audra was giving out smiles most of the morning other than when she had to have her oxygen saturation level taken. She has not been a fan of that probe. 

She got some oral sedation before they took her back to make sure she was calm. They said it doesn't taste good but I guess when you are hungry enough, you will eat anything. This helped with her departure to the OR. 

We are getting settled into our spot in the waiting room. So far it is quiet, which is a pleasant surprise. But it is early. 

Thank you, thank you for all of the prayers and thoughts that are being sent our way. Please keep them coming as right now Audra is in the OR and getting prepped for surgery. Since this is her third open heart surgery, it takes a while before the actual surgery can begin as she has a fair amount of scar tissue from the previous surgeries. 

The plan is to have her chest closed at the end of surgery and to get her off of the ventilator within a few hours of getting settled after surgery. For her Hemi, Audra had a difficult time coming off the ventilator, so this concerning to us. But the doctors have told us that her previous trouble is no indication of what is to come after this surgery. So we are praying!

More updates to come. 

Fontan Eve

Here we are on the eve of Audra's Fontan. Fortunately, Audra and her sister are fast asleep. My husband and I, well that is a different story. 

We had Audra's pre-op day on Friday and everything went well. It was a long day but Audra is an ideal candidate for the Fontan, which is so great to hear. 

We have known this day would come but it doesn't make it any easier. But we are looking forward to having this behind us and moving forward. I really have a hard time believing that it is already here, which does not change the fact that it is upon us (and I should be sleeping). 

Thank you to everyone for your love, support, prayers, thoughts, texts, emails, phone calls, surprises for Audra... and everything! We really do appreciate it all. 

We are reporting to the hospital at 6:15 tomorrow and Audra will be first case meaning she is the first to have surgery for the day. Despite the early start for us, this is the best case. She will go back around 7:15 and surgery will take 4-5 hours. We will post updates here as we can. We should get to go back to see her a couple of hours after they finish up her surgery. 

Please keep Audra, Dr. Bove, her surgical team, her PCTU nurses in your thoughts and prayers! We are feeling comforted by the fact that we will have one of our favorite nurses caring for Audra tomorrow night. She took a non-weekend shift just for Audra and she is the best! We know that Audra will be in the best hands possible. 

We will be back all too soon. 

How Can You Help Us?

We haven’t updated in a while and with the temperatures dropping and the leaves changing colors, we know that October 7^th is just around the corner.  This means that Audra’s third open heart surgery (called the Fontan) will be here before we know it.

Right now we are in lock down mode where we are not taking Audra and her sister out to large crowds.  We are trying to keep everyone healthy so that Audra will be strong for her surgery.  Unfortunately, once Audra recovers from her surgery, we will be into RSV and flu season.  Since Audra will only be a few weeks post-op and will receive a $1000 a month vaccine against RSV, we are going to have another low key winter.  Just wanted to give you a heads up on that.

As October 7^th approaches, we also know (and appreciate) that people want to help.  We want to make sure that you know that your love, support and help are really appreciated and there are things you can do to help us.

Pray for us

Please keep Audra and our family in your prayers and thoughts.  We need all prayers we can get.  So reach out and talk to the powerful G-O-D with us (alright I may have watched The Mindy Project last night).  If we want some specific things to pray for, pray that:

Audra stays healthy so that she is strong for her surgery;

No one needs Audra’s scheduled surgery more than her so that her surgery gets bumped;

My parents have safe travels as they travel across the country to help us out;

The surgical team, and specifically Dr. Bove, is healthy and rested for the surgery so they are at their peak performance;

The surgery is routine and there are no complications;

Audra will have a quick recovery and her body will adjust to her Fontan circulation; and

Audra’s older sister will enjoy her time with her grandparents away from her parents as we help Audra’s “owie-heart” as she calls it.

Help Us with Audra’s Surprise Box

We are putting together a box with things that Audra likes that she can open whenever she needs a little pick-me-up, such as after a poke for blood, dressing changes, etc. Anything that is great for an 18 month old goes –balls, books, cars, stickers, Little People toys (the brand, not actual people, lol).  She especially loves books about animals and babies and especially lift the flap type books.  Also, we are looking for fun ways to get her lungs clear by blowing on things.  We have Gymboree bubbles and a few kazoos but any other (quiet) whistles, musical instruments, bubbles, etc. would be also appreciated.

Also, a few items for Audra’s older sister would be highly appreciated for visits as we are always working on sharing.

Help Us Decorate Audra’s Room

We would love to have signs, wall stickers, decorations to hang up on the walls of Audra’s room.  Hand drawn pictures or signs, paintings, coloring book pages, cards, whatever – it all works.

Also, Audra and her sister love opening cards so we would love to have you send or give us cards for both of the girls.  An occasional singing card has been known to receive extra attention :)

Visit Us

This is a pretty big change from the past when we didn’t want a lot of visitors.  While we obviously do not want anyone who is ill to visit, we would love to have you come visit.  The first couple of days will be rough and Audra may not be up for visitors.  But after the first few days, we are going to be getting back to normal while we are trying to get all of the extra fluid drained from her chest.  So visitors will be welcome! 

If you want to come visit, please let us know when.  We will put together a sort of schedule just to keep things sane on our end but we would love it if you could make it out to Ann Arbor!  Also, if you want to bring some lunch or dinner with you when you come, you won’t be turned away.  Hopefully our stay will not be too much longer than 10 days but hospital food, Subway and yes, even Pizza House get old quickly.

Donate Blood

Audra is likely to need blood during or after her surgery.  She needs generous donations of life-saving blood like yours because there is no alternative to human blood.  We have literally sat next to her as she received a transfusion and seen her change color from gray to pink.  It is really a miracle. 

If you haven’t given blood before, please consider it now.  Go to: http://www.redcrossblood.org/make-donation to find a blood drive near you and make a donation.  Audra and my family thank you in advance!  And believe me, if I can do it, anyone can do it!

Thanks for sticking with us!

All the best!

October 7

We got a date from Audra's surgeon, Dr. Bove: October 7. It will be here before we know it. Although we are not looking forward to the surgery, for obvious reasons, we are looking forward to getting it over with. 

We are also looking forward to meeting Audra's heart buddy, Wyatt, and his family this weekend. It will be the first of many play dates, I am sure!