The family will be meeting tomorrow to arrange a date for the funeral. We appreciate all your support and prayers and please know your thoughts are being felt. The girls are with their daddy and we hope you will understand they need their time and privacy right now.
I told Emma that Lori was very sick. She cried and said she wished Mommy never had the surgery. I said me too. Then she wanted to tell Sarah.
We cried for about 10 minutes. Then Sarah found a paper heart on the ground....Then we started talking about all the birds. Uncle Mark said that Emma and Sarah were sister eagles because they have great eyes and can look after other. Mommy would be a flamingo because she is so beautiful and maternal. I would be the wise owl. I liked the way the first talk went.
More Lori updates when I know some information.
Last night Emma was very anxious. She was clutching a picture of Lori and saying she did not know what her Mommy looked like after surgery.
So my brother and father and I took Emma and Sarah up to Mount Bonnel. This is Lori's favorite spot in Austin. I told them stories of her studying there in law school.......con't
Lori has had ups and downs. DIC last night that threatened her life but she recovered. We are particularly concerned about her brain because her pupils don't react to light and are very dilated, and she has no cough reflex. I am praying for God to help me keep hope.
We left for Seton Main Hospital around noon today. The facility is better suited to deal with the VAD and the multi organ failure.
Sister Gertrude spent arranged to have the priest give the sacrament of the sick to help Lori heal. It brought back memories of 6 years ago when Lori and I watched as the baptized little Hannah the night before she had esophageal atresia surgery. I vividly remember the intense pain that only a mother and father can share when their child is seriously ill.
Now I am faced with having the most difficult conversation of my life. It is time for me to start preparing the girls. I plan to tell Emma tomorrow
that her Mommy is sicker than we first thought. I ask all of you to continue to pray that Lori can recover. Love Adam
Isn't it ironic. Lori said the one thing she was looking forward to with open heart surgery was weight loss. Well Lori has officially gains 37 PBS since Friday morning!
Ofcourse with dialysis, mother nature and more time she will probably leave the hospital losing 10-15 lbs.
By organ systems: Heart showing a little more activity. Kidneys have failed for now. Acute liver failure which should be temporary. Lungs stable on ventilator. Brain in deep sleep. Feeding through tube will start today into small intestine to limit risk of vomitting.
Anticipate transfer to Seton Main Hospital tomorrow.
Lori needs dialysis. I am frustrated because the kidney doctor on call is trying stop gap measures until the morning. If the next round of blood tests is worse I am going to lose my temper. I told the nurses to warn the kidney doctor.
Otherwise things are steady as she goes. Many of you don't know that Lori almost died from an asthma attack in law school. I know because I saw the blood gas numbers from the ER records. She is going to pull through again.
Lori had a stable night. Her blood is starting to clot properly now so they can start heparin to hopefully keep the VAD (mechanical heart) from clogging up. Her kidneys continue to worsen. I think her color is better. So far she has received 34 units of blood!
I realize that I will need a live in nanny for 2-3 months. Kaly may be able to do it but if not does anyone know where our Mary Poppins is.
Just a spoon full of sugar helps the medicine go down. Love Adam.
The girls are all in bed. Emma is sleeping over with friends on lake Travis. Sarah demanded that aunt Erin sleep with her. Hannah easy as usual.
We just turned Lori and cleaned her up. Her blood pressure is holding steady on the VAD. She has gone into acute renal failure. This is upsetting but I thought it would happen given how sick she is. I would bet on dialysis tomorrow. This should be transient.
Any visitors who have a nice picture of Lori? I would like to decorate her room tomorrow.
I plan to go sleep now. The next update in the morning God willing.
545PM. Lori has stabilized for now. More fluid around heart and right lung may require another surgery tonight.
I just watched the afternoon echocardiogram. This really helped me calm down. To me it looked like her beautiful heart is just sleeping. This is my inspiration for talking with Emma if she wants details. It is honest yet sensitive (I hope).
I am feeling more hopeful that it will start to wake up soon. I will also try to continue with my one finger typing updates.
Lori is back in surgery to remove a clot around her heart so that the heart can resume beating. They will leave her open & put in a transparent shield so they can go back in if needed. Prayers and good wishes are needed and very much appreciated.
530 AM They had to tale Lori back to surgery round 230 AM to stop bleeding and relook. Dr. Dewan came out with The first reassuring look in 12 hours! I can feel the calm of hope returning.
The blood is starting to clot properly, lungs and kidneys seem okay. I will see her for the first time since this nightmare began in a few minutes.
Thank God for some good news. Love Adam.
Into ICU before 12:00 AM, but not out of the woods!
Journal posted on August 14, 2010
Susan (Nana) writing: I'm home now, with the girls innocently sleeping upstairs, and the dogs sleeping around me, snoring and not barking!
I left just after 12:00 AM, with Adam and a few of his "Tulli" family, Jerry (Pa), cousin Cyndi, Aunt Margaret and Bryant, Aunt Elnora and Gary, and family friend Loretta Black due to arrive any second. (Plus, Mike and Erin's arrival by 2:00 or 3:00 AM.)
At approx. 11:45 PM, the surgeon stepped out to tell us Lori was in ICU and that there were certain factors (bp/blood/chems/coagulants) that were fluctuating. (My layman's memory of what said.) He and others of her team will remain with Lori until they have a level of satisfaction (stabilization?) so they would be with her awhile longer.
Lori was in surgery for 12 hours. She has her youth and healthy heart condition, including the now repaired 'leaky valve'. Susan
10:00 PM The surgeon spoke to Adam. The VAD is in place and they are preparing to move her to ICU. The surgeon thinks the cold liquid used to slow her heart might have stunned her heart. He thinks up to two days on the device will give her healthy heart a chance to recover.
Lori will have a tube into her lungs for the next couple of days as well.
This is the best news we've had so far. Adam will stay here tonight. Lori's brother Mike and wife just crossed the Red River coming from Bartlesville OK. Six friends/coworkers and 7 Tullos family with 5 more on the way have filled this waiting area. This hospital has only two floors. Small, intimate and convenient to the House. A little sense of relief, thank God. Susan
715PM. They still can't get Lori off bypass. She will now need an open sternotomy to put in a ventricular assist device to keep her alive. The surgeon hopes the heart will recover over the next several days.
2:50 PM - Adam has five family/friends (Jerry, Sondra, Cyndi, Jennifer and me) helping to pass the time. The nurse called down an hour ago that everything was going just fine, though Lori was still on bypass. Surgery started earlier, at 11:20.
Well surgery started at 1120AM. I just was told they are on bypass and all is well. It is 1257PM and I do not feel well. The thought of Lori's heart not beating is really bothering me more than I anticipated. The waiting is hard. I think I have to pace the halls a bit. Adam
I have gotten so many wonderful emails and phone calls from family and friends. You each mean so much to me and we are SO lucky to have you in our lives.
One of the most touching emails was from one of my high school teachers. She is adding my name to the morning prayer, so tomorrow St. Pius X High School will be praying for me as I prep for surgery. I get a little choked up thinking about it!
I can't sleep again, so I'm taking every advantage of the last hour of this day --- I'm sitting in my recliner, eating delicious tiramisu, and drinking a big glass of milk! I might even order a pay-per-view comedy (I ordered "The Back Up Plan" last night when we couldn't sleep!).
I just took my first shower with Hibiclens tonight. I vaguely remember washing my hands with this surgical antimicrobial soap when Hannah was in the NICU for 6 weeks (it is also used in correctional facilities to halt the spread of infections), but I forgot how amazing it is! I think I'm going to switch from my regular shower gel to Hibilens full time!! Ha! I'm joking! I have to do something to take my mind off how dry and itchy my body feels!
This has been one of the longest and most confusing weeks for us. There are so many surgeons, and many different approaches to the optimal timing of repair and the type of surgical technique that is best. I have had a crash course in cardiology and surgery over the past 3 weeks! It reminds me of the time when I had to cram for the bar exam. The bar exam also drained my energy and made me cry repeatedly, too!
After lengthy discussion, thorough research, a second opinion, and a few tears, we think that the right mini-thoracotomy approach is the one for us. According to the Cleveland Clinic (#1 in the U.S.), "The heart is approached between the ribs, providing the surgeon access to the mitral valve. There is no sternal incision or spreading of the ribs required for this surgical technique.The surgeon inserts special surgical instruments through the incision to perform the valve repair. Results with this approach are excellent."
You can watch a right mini-thoracotomy at http://my.clevelandclinic.org/heart/disorders/valve/mini_thoracotomy_video_mitral_valve_repair.aspx.
Depending on the type of minimally invasive surgery the length of stay in the hospital ranges from 3-5 days. Most patients return to work within 2-4 weeks, depending on their age, overall condition and the type of work they do.
This will likely be my last post for a few days. Adam or Susan should resume posts while I am in surgery and recovery, and I'll be back as soon as I feel up to it!
Thank you again to everyone who has sent emails, called, brought food, or otherwise supported our family. We GREATLY appreciate our wonderful and amazing family, friends, and the Down syndrome community!!
I can't figure out how to add information about diet/ food to CarePages:
Emma gave up red meat in kindergarten (she thinks cows are cute).
Once I am home I will be restricted to low fat, low salt.
We love fruit, veggies, pastas, salads, chicken, fish, cheese. We eat a lot of Italian, Mediterranean, Chinese, and Mexican food. The girls love "breakfast for dinner," mashed potatoes, mac n cheese, hummus, cheese pizza, steamed veggies, and noodles.
Decided against robotic procedure and headed back to Austin. I report to the hospital early in the morning for check-in.
Heart Hospital of Austin
Dr. Stephen Dewan
3801 N. Lamar (Central Market parking lot)
They should take me back to prep around 11 am. It will take about 1 hour to prep, 3-4 hours for surgery and 1-2 hours for recovery. Will try to train Adam in how to update this thing so he can give you an update! Unfortunately, the hospital will not release info on my condition, so I don't think you'll be able to call for status.
After that, I will be in ICU for about 2 days but may be able to have visitors on Monday or Tuesday. I hope to be back online myself by then to let you know myself!
Will post CarePage link next.
Many, many thanks for all the well wishes from family and personal stories from my fellow patients. I can't tell you how much it means to me and how it has kept me going this week. I love you all!
Because of the mulitple delays today, surgery for tomorrow was canceled. Another test is scheduled for tomorrow in Houston. We then decide whether to have sternotomy in Austin on Friday or come back to Houston next week for robotic. I have serious reservations - it will triple my time on heart- lung bypass machine (could increase risk of pneumonia risk / not good for this asthmatic girl!). In addition, he said it was the hardest type of surgery he has ever performed in his life. So far, he has performed only 95. 2 were converted to sternotomy and 5 have failed at 2.5 years. Would that make my heart a guinea pig?
He recommends sternotomy, but that is a procedure I can have done close to home with personally recommended and amazing surgeon. It's looking more like Austin on Friday???
After being pushed from 8:30 to 10:30 to 12:30, it is finally done.I was not a fan of the MRI! It was like laying in a hard, uncomfortable box for over 2 hours while being tortured with the sounds of jackhammers and fire drills each time you started to doze off. Whoever thought of that procedure?
Now we wait again for radiologist to call Dr. Lawrie to call us.
Dr. Lawrie wants to do his own tests tomorrow (my 1st MRI potentially followed by stress echo). Looks like either robotic in Houston on Thursday or sternotomy in Austin on Friday. Methodist Hospital is very nice. Soothing. I feel a feeling of peace here, though the ICU and recovery floors slammed home the enormity of the surgery. Feeling too sad and confused to post much.
Tomorrow is the day we make a decision, and I find that sleep may be impossible tonight. In the best of circumstances, I usually have a hard time unwinding, but I think the stress is catching up with me. The only thing that has worked over the past 2 weeks is playing endless games of Solitaire.
Last night I had a very strange dream. I dreamt that I had eaten out with Adam prior to my appointment with Dr. Dewan today. I had one margarita, and found that when I arrived (alone) at my appointment, my words would not come out clearly. I was slurring and tripping, so Dr. Dewan carried me to the exam room. While there, he showed us (Adam had magically appeared at this point) a very odd video of my heart spurting blood across the room with each breath I took. But he eased my stress by being very kind and patting my head/ rubbing my back like a puppy. I don't know exactly what the dream means (and I certainly didn't tell him about it today!). I wonder whether I'll have random heart dreams tonight?
I'm having a difficult time thinking that I might choose to stay in Houston for surgery, recovery, and post-op. That's a long time to be away from my girls. They have been very sweet. Sarah is performing "surgery" on her baby dolls and cried because she wants to have a scar that will match mine. I spent about 10 minutes Sunday trying to explain to Emma that she could talk to me, Adam, or a multitude of other adults if she had any questions or needed help with anything. She eavesdrops on all conversations and is such a sensitive little girl that I worry about her. My worry may be a little misplaced (I hope) because her response was, "Well, what if I don't need help with anything? Maybe I might need help with math?"
On another note, we sailed through our first ARD meeting today and were very pleased with our first experience. The school is so very accommodating and positive about educating children with special needs, and have been very proactive about gaining specific knowledge relating to Down syndrome. I feel very hopeful!
Will post again tomorrow after we have met with Lawrie.
Adam and I just met with Dr. Stephen Dewan this morning. If we choose to have the surgery here, it will probably be on Friday at Austin Heart Hospital (next to Central Market on Lamar & 38th).
There is a link to a great video that I found via this website about how to think about surgical outcomes:
Basically, in order, this is what one surgeon feels you should be asking each surgeon:
1. How many patients die from the procedure?
2. Will this fix the problem?
3. What is the recovery like?
4. What are the cosmetic issues.
Here is the information from this morning regarding these variables:
1. There is always risk with the heart-lung bypass machine and surgery, but that about 97-98% of patients my age and with my type of degenerative disease live through the procedure.
2. Given my age and the degeneration of my valve, he thought that there was a chance the repair would last at least 15+ years. It could possibly last longer, but he said they just don't have data going back that far. I had hoped that I could have one repair that would be good for life (or at least get a money back guarantee!), but if I live as long as I hope to live, there is a chance I may have to have this done again in my 50s or 60s. He said that most people in his experience who had the surgery were in their 60s, so given my age he thought I could be looking at another repair down the road.
He doesn't feel the tricuspid regurgitation needs to be fixed, and said that it might resolve or never become a more serious issue if the mitral valve is repaired.
They will also remove the atrial appendage, which would lessen my risk of developing atrial fibrillation following the procedure.
Complications could include stroke, heart attack, fluid around the lungs, death, and many other lovely-sounding issues. Because I also have pretty severe asthma, there might be a slightly increased risk of pneumonia (so if Adam turns you away from visiting for a cough or runny nose, you will know why!).
3. I was told that typical recovery time for a partial sternotomy would be about 6 weeks out of work, at least 4 not driving, and probably about 6 weeks at least before I can pick up the kids again. I'm worried about the recovery, but it's not as important to me as factors #2 and #4 because I know that it's a finite amount of time and that I will eventually recover.
I will admit that I made Adam drive me over to the Heart Hospital after my appointment. When I went on the floor where I would be in recovery, I have to admit that I nearly cried and couldn't get out of there fast enough. I am SOO much more comfortable with being in the family waiting rooms. Word of warning to visitors: it is COLD!
4. This factor and factor #2 are where I'm vascillating. There are so many different surgeons and so many ways to do the procedure.
Dr. Dewan performs only the partial sternotomy or right-side mini-thoracotomy, but seemed much more comfortable with the sternotomy (and I'm not so sure it's a good idea to ask a surgeon to perform a procedure he said he would do but would be more difficult, require equipment that is harder to use, and would require more time on bypass machine which could exacerbate any potential lung issues).
He also uses only a partial annuloplasty ring. I watched several videos last week which discussed the superiority of a full ring, so this is confusing to me.
He showed me where the scar would be -- I'd have to throw out about 80% of the clothes in my closet (which would ordinarily lead me to look forward to a shopping spree to replace them, but co-pays, sitters, being out of work for so long, and insurance deductibles are going to wipe out any money we might have for post-surgery shopping!).
The big downside I have heard to the DaVinci robotic procedure (Houston) is that there isn't any long-term data about how long the repair will last. When I thought I would be able to have one procedure for life with the sternotomy, that weighed more in favor of that procedure. But now I'm really anxious to hear what the surgeon in Houston has to say tomorrow.
So now it's time for me to switch gears and start thinking about my 1 p.m. meeting I have been dreading for the past 6 years -- our very first ARD committee meeting to formulate our daughter's first IEP. My "silver lining of the day" is that this heart thing has really limited the time I had to worry about the ARD meeting! I will just have to put my faith in the school (who I've been prepping for the past 2 years -- they have attended every DSACT education training, including the DownsEd conference this May!) and in our ability to work well together.
I can't believe that it has only been 2 weeks since I found out that I have mitral regurgitation! Even more than that, I can't believe I need both a cardiologist and a cardiothoracic surgeon. Last month, the only cardiothoracic surgeons I had heard of were Dr. Preston Burke and Teddy from Grey's Anatomy!
But alas, I need both a surgery and a cardiothoracic surgeon, and this is the week.
I live in Austin, Texas, and my options in town are limited. We have selected Dr. Dewan as option #1. We meet with him tomorrow morning at 8 a.m. He would perform a partial sternotomy at St. David's Hospital if we choose him. A partial upper sternotomy includes a 2- to 3-inch skin incision and division of the upper portion of the sternum (in contrast to a traditional sternotomy which requires an 8- to 10 -inch incision down the entire sternum). Dr. Dewan has been practicing for 31 years and comes highly recommended. http://www.seton.net/find_a_physician/dewan/stephen
On Tuesday, I will drive to my hometown of Houston to meet with option #2, Dr. Gerald Lawrie, at 2 p.m. Dr. Lawrie worked with Dr. DeBakey ( ) for 20 years, operated on Barbara Bush and other countries' leaders, and sounds nearly too good to be true. He also comes with a personal recommendation from the father of one of my high school friends. I am very fortunate to have him so close to home and on my State insurance plan! http://www.geraldlawriemd.com/
Our understanding from speaking with both offices is that we choose one of these surgeons/ procedures on Tuesday afternoon, and then I have surgery later in the week (as early as Wednesday, but more likely on Thursday).
My husband and father will be going with me to Houston. Neither of them are big talkers or typers, so if we end up staying there for surgery, then this journal will probably be lean! If I end up coming back to Austin, then I can count on Susan or other friends to provide more updates.
Many, many thanks to all of my amazing friends and family for helping me get through the past weeks with great spirits, great humor, and great love! Ironically, as I type this I'm listening to my daughter's new Glee CD and "Lean on Me" just came on:
Please swallow your pride if I have things you need to borrow.
For no one can fill those of your needs
that you won't let show.
If there is a load you have to bear
That you can't carry.
I'm right up the road, I'll share your load if you just call me.
It's hard for me to call on others -- I'm so used to being the caretaker! But I really appreciate each of you and know that Adam and I are going to need the help. So thanks and love to each of you in advance.