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!

Fontan Scheduling

Just a quick note to let you all know that we are scheduling the date for Audra's third surgery - the Fontan. Going a bit crazy. It will be good to be able to plan and then have the surgery behind us but our anxiety level is very high right now. It looks like we will get a date in October. 

More later!

Home sweet home!

We arrived home after a long day at UofM. Audra is such a super star! She did so well. She had no issues and is a "perfect candidate" for the Fontan (her third surgery). She required no intervention and had little issues. 

It did take us a while to get back and see her because she had issues with the blood thinner. But better late than never. We have learned to be patient. It was hard when the receptionist was on a

personal call hereby the person on the other side was directed that "you tell your baby momma that you ain't got not no money to pay for a rental car." It was better than tv. 

Back to the issues. Audra had a fair amount of sedation and so she was very sleepy, even when we left. By the time we got home, she had slept it off and was in a much better mood. We had a nice evening out in the neighborhood and Audra is sleeping well. Her sister, on the other hand, still needs another story to fall asleep. 

Thank you to everyone for your thoughts and prayers! We should be set for a while - at least until the fall. We really hope not to be back at the hospital until late October. 

All the best!

Cath - Good News

They are done with the cath and all went well! No intervention was needed. We should be able to leave this afternoon! We are waiting to talk to the doctor to find out all of the details but we wanted to pass along the good news while we have a chance. 

We will have to be in recovery for 4 hours. Recovery is never fun but it is a good feeling to hopefully be headed home today!

Pre-op day

The pre-op day today went well. Audra is a true sleep fighter. But we have known that :) She did really well until our meeting with the doctor doing her cath at the end of the day. She was cranky, hungry and over being at the hospital. Fortunately, a yummy snack did the trick but we could tell that our doctor prefers the cath lab to crying kids. 

At the echo, they were able to see flow on her left pulmonary artery. This is a good thing! It increases the chances that the doctor tomorrow will not have to do an intervention. We will not know for sure until they are doing the cath tomorrow morning so please continue to keep Audra in your prayers and thoughts!

We have an early morning tomorrow as Audra's cath is first case - meaning she goes first. The doctor expects that her cath will last 3 hours, which is on the shorter side of the estimate. We are not banking on this but it is good to hear. Our bags are packed in case we have to stay overnight and it is an early bedtime for our entire household. The hospital is tiring!

Thank you for your continued love and support! We will update as soon as we have a chance tomorrow. 

All the best!

Update

It has been a while since we posted an update. We have been busy living life, getting ready for vacation and getting ready for Audra's catheterization this week. Yes, you read that right Audra has her cath this week - on Tuesday and her pre-op day at UofM is tomorrow. 

At her last cardio appointment, we decided that since we will be doing some traveling before her Fontan (her third surgery in the fall), we would have her cath before we go on vacation. During Audra's echo, our cardiologist was not able to see the flow in Audra's left pulmonary artery. It doesn't mean that the flow is decreased and Audra has no symptoms that would indicate that the flow is decreased, but we decided - better safe than sorry - and we had to have the cath now. 

So here we are. Just two days out from Audra's second cath. This will be the second time Audra has spent the days of July 1 and 2 in the hospital. And we are hoping and praying that she does not have to spend the night of July 2 in the hospital. 

When the doctor is doing the cath is when we will find out if any intervention is needed on Audra's pulmonary artery. She may need a shunt or a ballooning of it. If she has either of those, we will stay overnight. The recovery is typically very fast from either one and we should be discharged on Wednesday morning. 

What I just found out is that if she has to get a shunt, Audra will be on a blood thinner that requires regular blood draws to monitor levels. If you remember just less than a year ago, we had some pretty horrible experiences with getting Audra's blood drawn. And the time frame for that is six months to indefinitely. Indefinitely?!? That is hard to think about so right now we are hoping and praying that Audra does not need a shunt. Please send your prayers and thoughts Audra's way especially between now and Tuesday!

The pre-op day consists of a chest x-ray, an echo and an EKG. Hopefully it is a pretty easy day. 

The cath is expected to last 2.5-4 hours. It will be on the longer side if she needs a balloon or shunt and on the shorter side if not. We will not get our first update until about an hour into the cath. At that point, they should know whether they have to do any intervention. Should being the key word, of course. We will keep you updated. 

On a lighter note, we are again fighting with our insurance company. This time it is over oxygen for a flight we are taking in July. Audra qualifies for fully-paid in home oxygen, which includes a travel unit. We do not use it so we do not have either one. We cannot get only the travel oxygen since she doesn't have the home oxygen. But we can get her the full home oxygen to also get the travel oxygen, which will all be fully covered. Make sense? Yeah, I don't think so either. But it is what it is. 

We will be updating soon! Thoughts and prayers appreciated! 

All the best!

14 Months!

Yes! Audra is already 14 months old! A lot has happened since my last post and I am sorry it has been so long. We have been living life to the fullest and haven't been taking time to document it here. 

Today we had a cardio appointment so this causes us to stop and reflect (and document). The good news is that Audra's heart function looks "perfect". It is pretty much unbelievable to say "perfect" given all her little heart has been through. But for a HLHS patient, her heart function looks both "perfect" and "fabulous". These are both words our cardiologist used today. She does not use these words lightly. This makes us happy!

Today we discussed Audra's Fontan. We

are looking at having it this fall. This came

as a HUGE surprise as we had previously discussed next spring. So our cardiologist will talk to our surgeon this week to see what he thinks about the timing. A key here is to avoid RSV season. If you read the blog, you know about RSV. If you forgot, it is a respiratory infection that most kids get but causes huge problems for HLHS kids, especially those that are pre-Fontan. 

So we want to have surgery outside of RSV season, which is much earlier than we were expecting. It shouldn't cause any issues but is just not what we were planning for. You never know what is around the next corner - even is you try to plan for it. 

This is a lesson we have constantly learned over the past few years. 

Once we find out the timing of the third surgery, we will let you know. 

All the best!