Recovery

We have been home for a week now and we are doing great. This part if Aubrey's recovery has been very easy. She is not sore anymore. It amazes me, but she quit taking Tylenol after one day at home. Her energy level seems normal for her. She doesn't need help doing anything except occasionally asks for help sitting up from flat on her back. But she would figure it out if we weren't right there. Her appetite is normal. We are trying to avoid anyone with a fever, but are still getting together with friends otherwise. Aubrey got to go to her class Christmas party on Thursday. The kids were so excited to see her and she was excited too (though she acted extremely shy the whole time.) The class had been so sweet to pray for her every day and to send notes and gifts to her in Minnesota. 

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. 

Saturday

Aubrey did well last night. Brian slept in her room again. She is having a pretty good day today. She has talked much more and even smiled and played a little with Zoe. It is Sooooo good to see her smile. 

She got her neck line out this morning which hurt , but now that it is out, it is much better. We are waiting for a dr to get the chest tubes out. This will be a painful process (pray) but we are told that it will help her pain a lot once they are out. We are supposed to move out of ICU to the step-down unit this evening. That will be better. 

We have been face timing with Malakai who is at Brian's sister's house in Nashville. He is doing very well. We miss him, but at the same time are so glad he isn't here yet. He comes on Monday with our brother-in-law. 

While while we are here supporting Aubrey, my mom, aunt, brother and his family are all in Seattle with my dad. Thursday, My dad was in Seattle having his last chemo treatment for stage 4 lung cancer and had a seizure. It turns out this was caused by new tumors in his brain. He is stable and in the hospital. They are hoping/planning to treat with radiation at this point. It is so hard to not be there to support them, but I know I need to be here for Aubrey.

Life does not seem to go as we dream or plan, but this world is not out home. We are so thankful we have hope for a future with no more tears no more pain no more sickness. And we are filled with Joy and gratitude. Thank you for praying. Thank you for supporting us. Here are a couple pics from today. 

Photo from today

Aubrey made some good progress today, but it was hard. Here is a pic of her sitting up in a chair. 

Day 1 post Surgery

Brian and I have fallen in love with Aubrey on a whole new level! She is so strong and brave and sweet. She amazes us. This is a hard day. Our hearts break every time we see her pain. 

Milestones for today: she got a femoral IV out. She is able to eat a little more (jello, broth, ice cream if she wants.) she just moved from bed to sit up in a chair. That was a big one. She had a really good night (Brian stayed with her.) she slept well and he saw her personality come back a bit. She has been pretty serious today and showing more pain. We have seen the surgeon and a cardiologist etc. and very one is very pleased with her progress. She'll stay in the ICU until tomorrow (partly because of space and partly because that's where she is at.)

We are told her pain and everything should improve a lot when the chest tubes come out and that will most likely be tomorrow. 

If you have prayed something specifically for us and seen how God has answered, I would love for you to post a comment on that. Thank you for the prayers for peace--God has definitely been giving us supernatural peace. 

ICU

Aubrey came through surgery beautifully. Brian and I went back to see her about an hour after. She had already begun to wake. In the last three hours she woke up, got her breathing tube out and is eating ice and a Popsicle. She seems to be in and out of quite a bit of pain. She is talking a little bit and letting us know what she wants. We are so excited about how everything went, but it is so hard to see her in pain. 

Surgery is Over

We just talked to the surgeon and the electrophysiologist. The surgery is done and was very successful!!  They were very pleased with how it went. They were able to remove nearly all the obstruction. Her pressure gradient went from over 100 to 6. That is excellent news. The defibrillator is in and it works. She is getting stitched up and then settled in the ICU. We should be able to see her in about 45 minutes. She will still be asleep. We are very relieved at this point. Praise God. Thanks for covering us in prayer. 

Surgery update 2

We just talked to the Communicator. She said the main part of surgery is done. I assume that means the myectomy is done and she is still on bypass. Not sure where they are at with the defibrillator. We met her primary nurse that will care for her today and tomorrow while she is in the cardiac ICU. 

We feel really good about how everything is going and trust she will come through it all perfectly. I think the hardest thing for me right now is that they have to operate on her at all. I fully agree it is the best thing for her, but it is still hard to think about anyone operating on my sweet baby. We are in good spirits, calm, and collected, playing cards, and caring for sweet Zoe. Zoe has been a near perfect baby through all of this. She has an echo scheduled for tomorrow. 

More to come...

Update

Aubrey is now on the heart and lung bypass machine. All according to plan so far. 

Morning in pictures

Some photos from the morning once we got to the hospital until just before they took her back.

In Surgery

I went with Aubrey to the OR until she fell asleep. She has been mostly smiles all morning. She is in surgery for the next few hours. 

Waiting

We are at the hospital in a private waiting area. Aubrey is playing and happy. Brian and I are trying not to show our nerves. Soon they will have Aubrey get into her gown and take us to the OR. She had to shower last night and this morning with special red soap, scrubbing for 10 minutes straight. She is cleaner than she's ever been!

Day 2 at Mayo

We had a good day today. Our first appointment was around noon so we finally got a full night of sleep and a little time to relax. And, Miss Wright, Aubrey worked on her trip journal! We met with the child life specialist and got a tour of where Aubrey will be, and Aubrey got to do some medical play to help her feel comfortable with things. She got a doll to dress in a hospital gown and decorate. 

We met with the electrophysiologist next and talked through getting an ICD. Then we met the surgeon. The cardiologist, electrophysiologist, and surgeon are all excellent. We left each appointment with full confidence that this is the right course of action and that these are the right doctors to do it. That right there was an answer to one of our specific prayers. 

We report early tomorrow morning. Aubrey will be away from us for 4-6 hours. Surgery and getting her situated in the cardiac ICU. We will get updates roughly every hour on how everything is going. I will try to pass along updates as they come here on the blog. Once they have her in the ICU we will get to see her. Brian is planning to spend the night with her. 

We are going out for reportedly the best Mac and cheese in the city! Thanks for praying. 

Day 1 at Mayo

We made it to Rochester. We stayed at a dear friend's house last night and drove down early this morning. By 11am, Zoe has had three appointments and Aubrey just went back for her first, an MRI. She didn't seem too nervous, just tired and hungry. She wasn't allowed to eat until after this test. 

We are third on the wait list to get into the Ronald McDonald house and are likely to get a room today. Aubrey has appointments scheduled all over the place here today. It is a little overwhelming, but this place seems to run like a very well oiled machine and there are always friendly people to ask for directions. 

10:45pm

Just climbing into bed after a looooong day!  We had a packed itenerary today with appointment after appointment including a sedated MRI and echocardiogram for Aubrey. Brian and I had to split up several times, eat on the run, and we still had to skip 3 of the appointments. We were the LAST appointment with the cardiologist. He spent a couple hours with us talking and answering all of our questions. When we got done the hospital was virtually empty! 

We went straight to the Ronald McDonald House where we get to stay for the whole trip. This place is wonderful and so welcoming. We got checked in, had a tour and then ordered pizza. 

Aubrey was amazing. She was such a trooper. She didn't get to eat anything until about 1:30. She had anesthesia in the morning making her sleepy most of the day and had lots of various types of stickers stuck all over her for tests throughout the day. She did everything without complaining or arguing. We were so proud of her. 

We all need some good sleep tonight. Tomorrow we have several more appointments and Thursday is surgery day. Thank you for all your prayers. 

Heart Surgery, Now?

We are heading to Mayo Clinic in Rochester on Monday so Aubrey can have heart surgery on Thursday. For those that don't know the background, Aubrey has  heart condition called Hypertrophic Cardiomyopathy (HCM). It is a genetic heart disease that caused the septum between her ventricles to grow thick/enlarged. Her thickness obstructs blood flow to the aorta. She was diagnosed after her pediatrician heard a heart murmur and referred her to a cardiologist at 6 months of age. Now at six years old, Aubrey still has no symptoms, but her heart is always working really hard against the pressure built up in her left ventricle. The thickness makes her more susceptible to sudden cardiac arrest or other forms of heart failure. Brian, Mslakai, and Zoe also have HCM, but Aubrey's is the most severe. 

Nothing has changed with Aubrey's health recently, but the doctors feel this is a good time to do surgery. She will have lots of tests at Mayo on Tuesday and Wednesday, (Dec 3 and 4) and we will consult with the top surgeon for this particular heart surgery. If everyone agrees that this is the right thing to do, Aubrey will have surgery Thursday Dec. 5. She is supposed to be in the hospital for 5-7 days and then fly home to complete her recovery at home. 

Please pray for all of us. Pray for God's healing and protective hand to cover Aubrey. Pray he reveals his power and presence to her. Pray against fear for all of us. Pray for the logistics. Pray for her doctors. Pray that God would be glorified in all of it. 

I will do my best to keep this updated throughout the process of surgery and recovery. Feel free to share the blog with friends and family. 

On our Way

We are on our way to Nashville for a week with family over Thanksgiving. Aubrey is working on a workbook sent to us by Mayo to help prepare her for surgery. We talk through each page as if it is all so normal.