This is also another adventure we have been on recently.... I am going to copy and paste the email explanations I have sent out. we welcome your prayers as we are still emotionally trudging through this adventure with Cami's heart....
Sent February 11th:
Hello family and friends,
Four weeks ago, Cami and I went in to a routine Cardiologist check-up for her. She has been going in every 4 months, and everything has been great. This last visit though, the doctor saw some leakage in her bicuspid valve on the right side of her heart.
Her initial surgery when she was four months old really focused on the left side and all the issues that were there with the mitral valve, it also focused on her giant VSD (hole) between her ventricles and the coarctation (narrowing) of her aorta. Those were all beautifully fixed, and though she has some tiny holes still throughout, they will probably close and cause no harm.
The leak we saw on this last visit though, did prompt the Cardiologist to discuss with me what effects it has on pumping her blood efficiently, and he went over what a possible surgery for this kind of leak would entail. The frustrating thing with that visit was that the doctor did not have Cami's past info directly on hand, so he couldn't compare the current leak to any signs of it before. He asked me to call back two weeks later so that he had time to look at her history and make a decision about wether or not the leak was the same, getting worse, or getting better. He also would be able to let me know the next steps we would need to take.
After calling them back, and through a series of messages and phone tag, it has taken four weeks to get an answer about what needs to be done next. I received a call this morning from their office informing me that Cami will be having an MRI to look further into the leak. The Echocardiogram (ultrasound) that our cardiologist looks at her heart with is not entirely sufficient enough to really get a great picture of what is going on. So she will be going to Stanford again to receive an MRI. I do not have an exact date on it yet, they said that I will hear from someone in the next two weeks to schedule.
I want you guys to know that our hope was to hear that everything was recovering fine and the leak was getting smaller. That is one of the reasons we did not call or email everyone after the appointment four weeks ago. We really had nothing to report, because we didn't know what was going on. We didn't want to ignite any concerns unnecessarily, and we still really have no more information on what the leak looks like. The MRI will shed light on really what needs to be done for her.
Knowing now, that the doctor's concern was enough to get her an MRI, we are inviting you all in on this new turn of events. We are still hoping that the MRI will show that the leak is not sufficient enough for surgery, or that it is gone completely, or something miraculous. We know that there is a real possibility though, that Cami may need another surgery to fix this and to help her heart pump more efficiently.
We cherish your prayers and well wishes, and encourage you to lift Cami up to God for healing. Prayer for Ian and me as we go through this time of powerlessness would be great as well. I know that I can let my thoughts get away from me, and Ian and I both have probably thought about the worst results or possibilities of what Cami would have to go through. Please pray that we find peace in trusting Cami to God and His plan for her, and for this situation. Being a young child, an MRI for her would mean that she would need to be sedated in order to stay still for the procedure. With any sedation there are risks, and we admit that we are worried about the possible risks with her being in that state.
We will keep you guys updated with any news, namely the date on which we will be having the MRI. If you have any questions or comments, we would ask that you please respond through email. if you want to chat by phone we can set something up through email, but really do not want to be bombarded by calls at this time. We are open to discuss anything, but again, we know really only as much as I have told you here. Once the results of the MRI are back, more info will be available. Also feel free to pass this along to any who you feel would benefit from knowing about how they could pray for us.
We love you all, and thank you for walking through this with us and our daughter. God be with you all.
Sent February 26th:
My dearest family and friends,
We have a date and time set for Cami's MRI. It will be two weeks from today, on March 11th at 11am. We are asking for prayer on that day and time.
We have to arrive for the appointment and hour and a half before, and it takes about that much time to drive there as well. This means our day is going to start at 8am, and depending on how long the whole thing will take, with recovery from anesthesia and drive time back, we are optimistically looking at probably being home around 2pm or so. It will be a long 6hr morning, and we are still trying to decide if it will just be Cami and me, if Ian can/should get off work, and if so, will Dahlia come... we know that we are EXTREMELY blessed to have so many people surrounding us right now who are willing to watch Dahlia during this time, and that is a huge weight off our shoulders if we choose to leave her at home.
We have recovered some more information about what is going on inside her heart. I re-read through the post-operative ECHO report from Cami's surgery in October of 2007. In the report, there was 'trace tricuspid valve regurgitation noted." It was also reported to be 'trivial to mild.' It is relieving in a way to know that this regurgitation (leakage) Is not something that has just popped up out of nowhere. The MRI will help shed some light on the status of that same leak. It has been over two years since the surgery, and the leak is still present, so this will give us a good picture of how she is healing up and if she needs any follow-up surgical procedures.
Another hiccup right now is insurance. We are in the process of switching insurance because our current plans are out of our price range It has been an almost 7 month process for us. The girls may have been discontinued with their insurance at the end of this month, due to some income miscalculations. We have since, sent in the correct paperwork, and hopefully that will all be situated before Cami has the MRI. It is just a headache to continue to mail things in or drop stuff off at the county offices, and then call for status updates and coverage, etc. Again, hopefully it will all fall into place in time.
Sent March 18th:
Hello family and friends
I want to start by first thanking you for your thoughts and prayers for our family during this time of exploring deeper into the health of Cami's heart. We feel so blessed to be surrounded by such a great family of support.
MRI DAY:
Cami had her MRI on Thursday the 11th of March. It was a really long and emotional day. Our day started around 7am, getting ready, and dropping Dahlia off with our friends for the day. Cami was unable to eat anything since midnight the night before, and could only drink clear liquids up until 8am. She was a trooper. We had about an hour drive and had to be at the hospital at 9:30am, an hour and a half before the procedure was scheduled. Walking back to that hospital where we spent a month living just two years ago really brought back a flood of memories. Emotional memories. Hospitals aren't super fun and exciting places to be, and a children's hospital is even harder. The familiarity of the place was not a comfortable one, but we got to where we needed to be and proceeded with the check-in process.
Cami gets very uncomfortable in doctors offices. She always has. She has been in rooms with people looking at her and poking and prodding her more than I can count. She has had about two dozen extensive cardiologist check-ups since her surgery, has had to have a special shot every month for four months during the two flu seasons after her surgery, add in all of her regular check-ups on top of those. All this to say that she was not very happy to be in another room with white krinkely paper and an unfamiliar nurse poking. She was uncomfortable. This response got her a pre-anesthesia drug that allowed her body to calm down. It gave her slight amnesia and a drunken feeling so she would be able to separate from us more calmly. We then proceeded into the anesthesia room and the sleeping drugs were administered. Her body reacted normally by flailing and resisting, which was very hard to watch, but she was soon asleep and it was Ian's and my time to leave.
The procedure took about 2 hours. She went in at 11:15, she was intubated and had an IV placed in her left hand. Ian and I got lunch in the cafeteria and spent some time up on the roof. They called us back down to recovery room about 1:15, Ian got to see her a little but then had to leave to make the drive back. I was in the recovery room with her as the drugs wore off. She was very groggy and irritated with the IV, she was getting pretty anxious about the pain she didn't understand and just wanted it off. We were able to feed her a popsicle and that allowed the nurse to remove the IV. Once Cami had some sugar in her system and was relatively responsive, I was able to walk her out to the car and leave. We left about 2:30pm and made the drive home safely, picked up Dahlia and came home. We were home by 4. Cami couldn't walk around but wanted to very badly, she was wobbly and unbalanced, so we just laid low for the evening.
It was a long and emotional day. We thank you all for your prayers and support through all of this. We were blessed to not encounter any complications with Cami on her MRI day. There were tons of drugs running through her body, and we know that although these doctors do this every day there is always a risk, and to see our precious girl in such a state was really emotional. I know that we were being lifted up in prayer by all of you, and that gave us a lot of strength to get through the day in a somewhat uneventful way.
RESULTS, THOUGHTS, PRAYERS:
The MRI results took two business days to get to our cardiologist and we called them on Tuesday to see if we could set up a follow-up appointment. We were blessed to be able to get an appointment for Wednesday, the 17th, at 8:30am. We really went into the appointment with no expectations and were hoping and praying that the radiologist and cardiologist were able to see the information they needed to see to give us some insight into what comes next. The MRI looked good. All of the repairs form her surgery on her left side looked amazing, her aorta showed no signs of narrowing, and despite some anatomical abnormalities regarding her aortic valve, everything is functioning well. The doctor told us that the good news is that even though her right atrium and ventricle are large in size there are no additional elements that are affecting these areas other than her tricuspid valve regurgitation (leakage). It is a relief that we were able to see ALL that is going on within her heart so we could rule-out any other possible problems.
So now to the regurgitation. She still has it, When she is pumping her blood from her right atrium to her right ventricle through her tricuspid valve, the valve itself is not sealing closed and about 30% of that blood is regurgitating back into her atrium. She is basically double or triple pumping that same blood through the valve. This is resulting in enlargements of both her right atrium and ventricle. She is using more calories just to pump her blood than most of us do. This answers a few questions as to why she didn't just start exploding in her weight gain as everyone thought she would right after her surgery. She is still healthy, just on the lower end of the weight spectrum.
The presence of this regurgitation is not large enough right now to call for another surgery which we are grateful for. It will hopefully stay the same through her life, but there is still a possibility of this leak becoming a problem in the future. Now we just wait and keep on going back to the cardiologist to get a look at the progress report every 3 months.
This is good news, and I want to keep reminding myself that, but it is hard for me to know that there is something still not completely fixed inside of her. I feel so helpless about it, and although my brain knows that another heart surgery holds incredible risk, my heart longs for her to be fixed so much. It is hard for me to sit and wait and just watch as time passes by on this. I so desperately want her to be fully all that she can be, and the possibility of this getting worse somewhere in the future just lingers over us. I hate that we have to keep taking her to see a doctor to get hooked up to machines every three months. I hate that she's still wearing 18month old clothes when she will be 3 in two months. I hate that there is no other action we can take, that we will just let her live with this inefficient heart. It's functioning badly enough to keep an eye on, but not badly enough to fix. I just hate it.
She is alive though. She can sing and dance, laugh and cry, tell funny stories and run around with glee. She is so beautiful and appreciates so many things. She loves and hugs and kisses us and her sister, she cuddles and loves being thrown into the air. We are blessed to have her, and we need to keep our focus on the amazing life she has to offer. She brightens our day and makes us smile so much. I do not want to take for granted any of the time I have with both of our daughters, so we will keep moving forward and live this 'normal' that is our life.
Continue to pray for us if and when you think of us. We truly feel the impact of peace and hope your prayers put into our lives. We are trusting in God's planning in all of this. We will keep you updated if anything happens. THank you all again. A special thanks go out to Sara Greco for taking Dahlia on the day of Cami's MRI, to Linda Broesamle for driving Ian back over the hill to work from the hospital, and to Lana Hamilton for watching Dahlia last minute on the morning we met with the doctor for the results. Also thank you Suzy Clark for allowing Ian to go see the doctor with us for the results, and Cian Moroso for covering for him.
We love you all and truly appreciate your thoughts and prayers,
Ian, Emily, Camelia and Dahlia Scanlon
