Amanda has been reminding me daily that I have been slacking on updating the blog. As was the case before, when we got back home and things start cruising along normally (as much as normal can be for Audrey) I just kind of forgot to update.
Overall, the whole procedure was more positive than we could have ever imagined. We were dreading the entire trip leading up to it. Audrey did so well during our stay at the hospital that our best case time-frame actually held true. They released her from the hospital on Thursday but they wanted her to remain local for another day just in case we noticed anything abnormal at all. So Amanda and Audrey settled into the Ronald McDonald house for that night and then were able to cruise around Rochester a little bit. It all felt a little surreal that Audrey had her surgery on Tuesday and then two days later was out of the hospital and really showing no effects at all. She was as active as ever and really happy.
One of the possible side effects that is possible with the denervation procedure is a slight risk of Horners syndrome, a drooping eyelid as well as a constricted pupil, due to affecting the nerves that control this. Initially we could see a little bit of this in her eyelids, along with the puffiness from the surgery and meds, but we feel very fortunate that her eye has really recovered back to normal now at this point. As I said, we are grateful that everything went so well.
We were so thrilled that everyone was back at home on Friday. Based on past history, we never expected to be home so quickly. We were so thankful and relieved to have our family all back together at home again. Audrey attended our neighborhood block party on Saturday and had a normal weekend like any other playing with her brother and sister. She's such a tough little girl and is truly a reminder to enjoy everyday.
-mk
Monday, August 29, 2011
Wednesday, August 24, 2011
Wednesday Recap
Audrey had an awesome day here at Mayo. She was definitely back to her spirited personality and was fully playing and eating again. It started out a little rough because she couldnt really fall back asleep after her 4am nurse visit so she and Amanda were cruising around the hospital at the crack of dawn. Audrey's sleep was all out of whack at that point so she ended up taking a few sporadic naps throughout the day.
Both Dr. Ackerman and Dr. Moir came by and were very happy with how she is recovering and doing overall. We are still fully on schedule to get out of here in the next couple of days and get back home. Amanda and I are still a little hesitant to fully count on that happening but she's looking great so far so we'll see.
Today Audrey did not want to just sit in her room between naps so we took quite a few walks and she had a little playdate with the twin boys in their room. She's been able to shed some of her cables and lines and has the telemetry monitoring now so we're able to ditch the room and cruise around.
- mk
Tuesday Night Update
It was a long exhausting day today but just wanted to make a quick post to say that all is going well. Audrey is stable and resting in her ICU room. We have started weening her off of the Lidocaine drop so by mid-day Wednesday she should be back to only the two medications she takes on a regular basis at home. She started eating some light foods and clear liquids again late this afternoon so we are hoping she'll regain even more appetite tomorrow morning. She has been remained tired and pretty grumpy throughout the day and cries very loud everytime a nurse or doctor attempts to check anything on her but she seemed to get a little better when she got some juice and cheerios in her this evening.
Dr. Ackerman came by and thought she looked great and was doing excellent. We are hesitant to get our hopes up because we know how quickly the situation can change but he estimates that she'll be able to return home on Friday. We'll see.
While here we have been fortunate to meet a nice family of two 1 year old twin boys that both have the exact same gene mutation as Audrey. Crazy to think that of the documented roughly 20 cases worldwide of this specific case, there are 3 of them in the Rochester ICU right now. It's been really interesting to learn about each other's experiences thus far and I'm sure we'll continue to be resources for each other in the future.
- Mk
Dr. Ackerman came by and thought she looked great and was doing excellent. We are hesitant to get our hopes up because we know how quickly the situation can change but he estimates that she'll be able to return home on Friday. We'll see.
While here we have been fortunate to meet a nice family of two 1 year old twin boys that both have the exact same gene mutation as Audrey. Crazy to think that of the documented roughly 20 cases worldwide of this specific case, there are 3 of them in the Rochester ICU right now. It's been really interesting to learn about each other's experiences thus far and I'm sure we'll continue to be resources for each other in the future.
- Mk
Tuesday, August 23, 2011
Surgery complete
-mk
Sent via BlackBerry by AT&T
Denervation underway...
This picture was taken this morning when we got to the hospital. She was happy and cheery still at this point.
We are finally underway after a long morning of pre-op, which is so much tougher when we are unable to give Audrey any bottle or food. She obviously knows the drill at this point and became extremely worked up and scared when they started putting the leads and other connections onto her. She was getting so worked up that we were more than a little worried about her heartrate and the possibility of it going into torsades again, similiar to a month ago at CHOA. At this point her ICD is adjusted so that the defibrillator is turned off but it is still pacing if needed. They allowed Amanda to go back to the OR with her until they got the anesthesia in and she fell asleep. At this point we are in the waiting room and waiting for updates.
The below picture is of a monitor in the waiting room that updates with the status. Audrey is 'patient 1074116' and is currently in the OR. Kinda feels like being at the airport and keeping our eye on flight 1074116 on the monitors.
Will post an update when we get one.
-mk
Monday, August 22, 2011
WFMC
First off, I want to thank everyone for the very thoughtful and caring calls and emails. We really appreciate all the of the love, support, and help that you all have provided during this crazy time for the Koch family.
Today was a power packed day and Audrey handled it all like a champ. We started the day with an xray appointment and then an electrocardiogram appointment. Both of those went really smooth as Mayo really has their processes down pat and move patients through quickly. At that point it was about 10am and Audrey was tired so she took a quick nap for a little while before the next appointment. We then met with the cardiologist Dr. Ackerman at 12:45. We previously have had a couple of calls on the phone with him and he was familiar with Audrey's case but we walked through all of Audrey's details with him once again. He is definitely one of the world leaders in the study of Long QT so wanted to soak up as much of his insight as possible. He was extremely caring and down-to-earth and willing to talk to us as long as we wanted. It was very interesting to hear his full perspective on the path we should take for Audrey's care and compare notes to what we have discussed with our Atlanta doctors also. One of the huge gains from this trip is that we are now a patient of Ackerman's as well and he knows our Atlanta doctors really well. They have collaborated on Audrey's details in the past and following this procedure there will be more of that collaboration to ensure we consider all options.
One thing we hear, in different ways from different doctors, is that her specific type is one of the scariest and most unpredictable. Ackerman explained that on a scale of 1-10, with 10 being worst, her case is about a 9. Our Atlanta doctor said in similar terms that if we were to line up all of his cardiac patients, that Audrey would be in his top one or two most concerning ones. Its always hard for us to believe this is the case with how well her first year went overall but that speaks to the unpredictability of her specific gene mutation. For these reasons we have to be proactive and aggressive in her treatment, which is why we are here now for this procedure.
After going way over on our appointment time, we were late for our next appointment with the surgeon Dr Moir, but I felt a little better about tomorrows surgery. I asked him to tell us some of the success stories for her type, which was definitely good to hear once again. He explained to us the positive that for her rare case, it was one of the earlier Long QT type 3 mutations identified so there has been more knowledge gained around it than some of the others. There are about 10-20 documented cases worldwide of her mutation but enough to gain insight into the details to know some additional medicinal treatment options in the future.
We walked through the plan for tomorrow with both Ackerman and then again with the surgeon and are comfortable with the plan. The one thing that we didnt realize was that they will have to turn off her ICD during the procedure to make certain that there are no shocks caused by the procedure. They will be starting her on a lidocaine drip during the procedure as a precaution though so that should help balance that out. We have to get her there at 6:45 AM to begin anesthesia and the procedure will begin around 8 or 9 AM and will last only around 30-40 minutes total. We'll get to then see her again right around 10:30 or 11 AM. We're really looking forward to just getting this thing done and moving forward. We have researched and discussed and thought and then done it all again so many times that we are now ready to finally get it going and move forward.
I'll post an update on Tuesday about her surgery success.
- Mk
Today was a power packed day and Audrey handled it all like a champ. We started the day with an xray appointment and then an electrocardiogram appointment. Both of those went really smooth as Mayo really has their processes down pat and move patients through quickly. At that point it was about 10am and Audrey was tired so she took a quick nap for a little while before the next appointment. We then met with the cardiologist Dr. Ackerman at 12:45. We previously have had a couple of calls on the phone with him and he was familiar with Audrey's case but we walked through all of Audrey's details with him once again. He is definitely one of the world leaders in the study of Long QT so wanted to soak up as much of his insight as possible. He was extremely caring and down-to-earth and willing to talk to us as long as we wanted. It was very interesting to hear his full perspective on the path we should take for Audrey's care and compare notes to what we have discussed with our Atlanta doctors also. One of the huge gains from this trip is that we are now a patient of Ackerman's as well and he knows our Atlanta doctors really well. They have collaborated on Audrey's details in the past and following this procedure there will be more of that collaboration to ensure we consider all options.
One thing we hear, in different ways from different doctors, is that her specific type is one of the scariest and most unpredictable. Ackerman explained that on a scale of 1-10, with 10 being worst, her case is about a 9. Our Atlanta doctor said in similar terms that if we were to line up all of his cardiac patients, that Audrey would be in his top one or two most concerning ones. Its always hard for us to believe this is the case with how well her first year went overall but that speaks to the unpredictability of her specific gene mutation. For these reasons we have to be proactive and aggressive in her treatment, which is why we are here now for this procedure.
After going way over on our appointment time, we were late for our next appointment with the surgeon Dr Moir, but I felt a little better about tomorrows surgery. I asked him to tell us some of the success stories for her type, which was definitely good to hear once again. He explained to us the positive that for her rare case, it was one of the earlier Long QT type 3 mutations identified so there has been more knowledge gained around it than some of the others. There are about 10-20 documented cases worldwide of her mutation but enough to gain insight into the details to know some additional medicinal treatment options in the future.
We walked through the plan for tomorrow with both Ackerman and then again with the surgeon and are comfortable with the plan. The one thing that we didnt realize was that they will have to turn off her ICD during the procedure to make certain that there are no shocks caused by the procedure. They will be starting her on a lidocaine drip during the procedure as a precaution though so that should help balance that out. We have to get her there at 6:45 AM to begin anesthesia and the procedure will begin around 8 or 9 AM and will last only around 30-40 minutes total. We'll get to then see her again right around 10:30 or 11 AM. We're really looking forward to just getting this thing done and moving forward. We have researched and discussed and thought and then done it all again so many times that we are now ready to finally get it going and move forward.
I'll post an update on Tuesday about her surgery success.
- Mk
Sunday, August 21, 2011
The time has finally arrived for Audrey's next procedure. We have struggled with the surgery as time has passed since her ICD implantation. We had an appointment at Childreans Healthcare of Atl on Thursday where they downloaded all of her stats from the ICD since the last appointment and she has been doing awesome. There have been no arythmias or worrisome rhythms. I asked our EP to tell me on a 1-10 scale how he thought she was doing and he said "9.9". The fact that she was doing so well begged the question that we had been struggling with. I asked him if he still feels as strongly that the denervation procedure should be performed on Audrey and he explained to us that he still felt the same. The decision to move forward is not as much reactive to what occurred last month but more of an attempt to prevent those arythmias in the future.
After our day of travel we are now here in Rochester, Minnesota. We have a full day of consultation on Monday including ECG, Xrays, and meetings with multiple doctors. We are scheduled for the procedure on Tuesday although not sure what exact time yet. We should find that out on Monday.
- mk
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