Home Sweet Home

We got home late last night. Let me tell you the airport experience for this family of five was quite the comedy show! After stopping at Costco to buy another large suitcase to consolidate... We had 4 large roller suitcases, a duffel, two backpacks, a diaper bag, stroller, three car seats, and various blankets, coats etc. Brian pushed a luggage cart, I rolled a suitcase and pushed Aubrey in a wheel chair, and Three year-old Malakai pushed Zoe in the stroller. Our finest moment came as we tried to board the tram to the ticketing area. I got Aubrey and the suitcase in and Malakai was trying to get the baby in as the doors were closing. Somehow Brian ended up getting there in time to dump the luggage cart in the doorway and delay the train! All the people in our car were helping us pick up bags and hold on to Zoe, and several people took our bags and kids off the train at the stop.  We were a mess!!  There was one advantage to looking as helpless as we did--was we got some great service from the ticketing agent and the TSA workers.  TSA even gave the kids stickers. Everyone was so nice to us. 

We came home to a clean house filled with the sweet smell of a fresh Christmas tree! Thank you Bridget, Oberlees, and Carlsons! What a fun surprise!  

Aubrey is doing great so far today! She is moving around well and happy, and much more independent than I was expecting her to be. We miss all our friends and would love to have some visitors in moderation! We need to protect Aubrey from getting sick so please only stop by if you are well and don't be surprised if we ask you to wash your hands!  Aubrey will be recovering for the next five weeks with some limitations. We are told the pain should subside in about another week, until then she is doing well with Tylenol and occasional ibuprofen. She is not allowed to push, pull or lift anything. She needs to be careful not to fall, so no bike riding or rough play. Until her incisions heal, we have to clean them daily and no swimming or submerging them in the bath. Other than that, exercise is important for her recovery so she can be as active as she wants to be, balancing that with rest. 

Now on to unpacking....

Lots of great news

So thankful...
Where do we start? Yesterday, we had appointments all day. We received some great news and some info that we are still processing... From youngest to oldest:
Zoe- At three months of age, yesterday was her first cardiology appointment. We have known since she was a couple weeks old that she was gene positive for the same mutation that the rest of us have. Based on her echo, ECG, septum thickness, etc. she has a completely normal heart except for a PFO (small hole) that 10% of the population has.  They have no concerns about the PFO at all, and they suggested she should be seen at 1 year and then only annually thereafter unless symptoms develop. Praise God for that awesome news! Even at 3 months, Malakai had indications of HCM septum thickening, so we are thrilled about these results.
Malakai- He still has no signs of any gradient in his outflow tract.  He does have a thick septum (9 mm), but it is in a location that, at this point, is not causing any concern.  The doctor categorized his HCM as mild.  The Mayo team indicated that we may be able to take him off his medication because things look so good.  That sounds fantastic, but Julie and I are still processing this as it is different than what we had heard previously, and there isn't really a change in his testing (echo, ECG, etc.).
Aubrey- Wow! She is walking around so much quicker. Yesterday there were multiple times where she got "stuck" while she was sitting. That means that she started leaning and couldn't straighten herself out. So far she hasn't had that issue today; her strength is certainly returning. I still lift her in and out of the car, scoot her into the middle of the bed to lie down, get her up from lying down, etc.  However, she is only on the tylenol today, and she doesn't seem to be in such intense pain every time she is moved.  Once I even asked her to not do something where she could have lost her balance.  Until today the pain did not allow her to take her guard off. 
Medical update: We had a chest X-ray this afternoon (only one appointment!). They want to make sure no more air has made it's way into her chest cavity alongside her lungs before she gets on a plane.  We hear the official results tomorrow morning during our final appointment, but indications are that we are OK to fly home based on Julie's interpretation of the X-ray. The original source of the air was most likely the chest tube sites not closing up completely...
Me (Brian)- I got a little more clarity on what my heart looks like and the implications of that. The team still recommends I stay on my medicine, but they indicated that they would not give me a heart rate limit like I currently have (125 bpm).  They would just say if I get really short of breath to take it easy. There may be an incremental risk of getting a shock from my defibrillator, but with that safety net in place, the doctors are saying I don't need to limit my activity. He indicated that there are advantages and disadvantages to not working out and the incremental risk of a shock isn't very high in my situation.  He emphasized that a shock isn't the end of the world either, although it is scary to me. We aren't quite sure what to do with this advice yet, but that was encouraging for sure.  It's hard to know what to do with the differing recommendations...
Overall- These past few months have been filled with a lot of emotions. There have been so many developments with Julie's Dad's health. We learned about Zoe's HCM. And we learned Aubrey needed to have surgery among other things. I must say that God has protected us so far and I trust that he will continue to do so. We are so thankful Aubrey's surgery has gone so well. I'm hopeful that she will come out of this with increased energy, but more importantly a better long-term prognosis.  Her gradient has been decreased from 160-180 mmHg to 0! Seeing Aubrey in so much pain was very difficult for both of us.  Agreeing to heart surgery and all that it entails was very intense as well. I hope that the toughest part is past and I look forward to continued healing.

Together Again

Aubrey was discharged today! She is doing so well. She had a great day with Nanna and Papa at the hospital while I took the rest of the fam to appointments at the other Mayo buildings. Three sleeping children and two grateful parents are all together in one room at last! We feel so blessed. 

I am too tired to write much more right now, but I will soon. Here are some pics from last night and today. 

Update

It was a pretty frustrating day. She waited all day not allowed to eat and finally had the procedure. But they took her down only to have her wait another 2 hours. So she missed her pain meds. By the time they put her to sleep she was really hurting and all upset. There is a little more to it, but I was really mad about how they did everything today. Good news is they got the air out and took out some fluid that also accumulated in her chest and they didn't have to leave any tubes in. They say she'll feel much better after this. We'll see. We have a bunch of appointments tomorrow so it will be really hectic. Kai's here now!

Waiting Game

As we are waiting for anesthesia and the procedure to drain the air from Aubrey's chest, I asked Aubrey about several things that have happened over the last few days. It turns out that most of the yucky stuff she has gone through, she doesn't remember at all!  She remembers everything leading up to surgery but not going to sleep in the OR. Then I asked her about the various things in the ICU and she has no memory of the breathing tube, chest tubes, femoral tube, neck tube, or the nurse that cared for her the first two days! She remembers the catheter a little bit. She remembers the ICU and her neighbor and the last nurse there. Those first days were pretty miserable so it makes my heart happy to know she doesn't remember. Aubrey has no fear going into this sedated procedure, by the way. She has been more herself today after a grumpy morning, despite not being allowed to eat. 

Monday

We got a smile out of Aubrey so I had to post it!  The doctors are still going back and forth about the air bubble in her chest. So they keep doing chest X-rays and checking it. If they want to fix it it requires a little procedure with sedation. So they keep telling her she can't eat or drink anything. She was allowed a little breakfast but we are waiting for results again before lunch. I wish she could eat so she could get a little stronger. 

Here's our cutie!

Sunday

Aubrey is still on track. They may release her tomorrow. She had a chest X-ray that showed some air around her lung. That was concerning to the doctors. So they put her on nothing by mouth until they could do another X-ray and see if it was getting better or worse. Thankfully it was better or they were going to put her in the ICU, sedate her, and put in another chest tube. They did make her go on oxygen though to help with the rest of the air. That made her pretty mad. 

I guess I was hoping to see more improvement today. She walked to the playroom once and did a little homework until the doctors made her go back to check on stuff. She was pretty down most of the day. When the stronger pain med wears off she seems to have quite a bit of pain. It is hard to believe she could be ready to get discharged tomorrow. 

Malakai comes tomorrow. I really miss him. I hope Aubrey is up for seeing him. 

Saturday part 2

Aubrey did well for the tube pull. They gave her morphine just before and she handled it really well. The chest tubes go between ribs so they are very painful every time she moves. Now that they are out, she could walk much better. She was moved out of the ICU to the PCU where she'll stay for the remainder of her time at Mayo. From the new room, she walked to the playroom and colored for a while and walked back and climbed into bed. That was huge. Her pain is better. I am excited to see some real progress today. 

Specific prayer requests: that she will drink enough so they won't start IVfluids. That we know the best way to encourage and help her. That we can manage her pain. For my mom and dad and all they are going through. That I can get over this cough/cold. For rest for those of us taking care of Aubrey. For peace.