Wyatt's Fontan

It has been forever since we have posted. It is really because all is well.  No news is good news. We have been busy living our mostly regular life (a bit on the sheltered side). But we have no complaints. 

The reason I am motivated to dust the cobwebs off of the blog is to ask for your prayers and positive thoughts for Audra's heart buddy, Wyatt. He will have his Fontan in the morning at UofM and we want to give him and his family all the support that they have provided us over the years! 

We pray for Wyatt, his family and his medical team that they are all strong and focused and help Wyatt to a speedy recovery so they can be back home soon! Thank you for your support!

All the best!

93!

Sorry that it has been so long since we have updated. All is well and we have had an uneventful time since leaving the hospital. Audra is doing well and we are back into our routine. 

We had a visit with our cardiologist and Audra's sat level is 93!!!!!!! This is the highest it has ever been without oxygen. This is great. 

Thank you for all of your love and support! We are blessed!

Going Home!

Good news! We got word this morning that we are cleared to go home! More later but we wanted to share the good news!

Post Fontan - Another Quick Update

We are settled in on the general care cardiology floor. It is bittersweet because one of our favorite nurses is back on shift tonight and we would have had her. But intensive care does not frequently remove chest tubes so it is good to be in general care for that. 

Audra has been in a grumpy mood because she isn't allowed to eat for 6 hours before the procedure. Fortunately, she is sleeping now and they will give her a decent dose of pain killer when she is getting her chest tubes out shortly. 

We are hoping that with the tubes out she takes deeper breaths and is able to get rid of the nasal cannula that she has had. Prayers are appreciated!

Thank you! All the best!

Post Fontan - Quick Update

This is just a quick update. Today at rounds they decided that we are going to pull all three chest tubes! We will then see if Audra takes deeper breathes and her oxygen saturation level increases so she can get rid of the last half a liter of oxygen that she has been on for a while. 

They even mentioned the H word - home! We try not to get too excited because you never know what will happen but best case would be we could go home tomorrow! Continued prayers are appreciated as Grandpa has told us how much getting chest tubes out hurts and don't want to have to get them back in again!

We will update again soon!

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.