Sixty-Forty

Ive been avoiding this post since Friday. We've been asked several times since then about our visit to Peoria and I have repeated the story enough to now feel as if the news is a healing wound verses a fresh one. 

The lord has blessed Justin and I with the knowledge of our Sweet baby girls medical "issues" since before her birth. However, no matter how prepared we may have felt in the past or feel at this very moment, when we meet some of these issues head on we turn into frightened children, Or at least I do. When I feel like this I try to take comfort in my faith and my belief in Jesus Christ. In all aspects of my life but especially in moments like these I find God's love for me and all of his children comforting.

When I am breaking in all of the same areas that have been mended too many times to possibly withstand more tragedy, I try to tell myself to take comfort in knowing that God will not give me more than I can handle. It has actually become somewhat of a personal mantra of mine and at times a saying that I also resent.

Driving home on Friday I desperately needed a warm embrace. I try to remember that I am never alone and while driving with Vada in the back seat, how I could possibly feel alone is beside me, but I did. I was tired and trembling and every part of me ached from the knowledge that I would soon face another great fear.

Usually I am fine with the Peoria trips being just Vada and I. I actually almost enjoy that time alone. Its a time that I recollect myself and my thoughts. Today, however, I wished for the company of my husband. I spoke with my sister on the phone and I did appreciated the conversation but I wanted to feel Justin's hand in mine. I wanted to hear his smooth voice saying absolutely nothing yet somehow forming all of the perfect words that I needed to hear.

Sometimes I wonder if I am suppose to endure all of this alone so that I somehow find the person and the voice that I have lost through my depression. Or maybe I am suppose to be reaching out and by breaking through the walls that I have somehow created God is helping me find who I once was. Either way, on this trip home, I felt alone and lost.

On Friday we did end up doing an unscheduled ECHO. The XRAY that was done on Monday had shown Vada's heart to be enlarged and while examining Vada on Friday, Dr. Bramlett had heard more of a murmur than what he was used to and he felt that it would be the best idea to do further testing.

The ECHO showed differences in her heart from the last ECHO. As Dr. Bramlett was describing the changes he pulled out a heart chart that resembled the one below. He flipped it over onto the blank side and began drawling his version of Vada's heart. I have high lighted the areas verses scanning his drawing as it is easier to read this way.


Vada's Pulmonary Valve is still narrowing and has narrowed considerably compared to the ECHO done only a couple of months before this one. The Pulmonary Artery is leaking some, but due to the narrowing of the Valve it is a very minimal leak. The narrowing is actually a benefit to Vada's condition and it protects her lungs from becoming full of blood and causing other complications.

The red is showing the opening between the Right Atrium and the Left Atrium. Basically, there is no wall between the upper two chambers and there needs to be one. However, as scary as this may sound, it is a condition that many people live with their whole youth and into adulthood before ever needing any surgical repair done. The concern falls mostly at the bottom of Vada's heart, between the Right Ventricle and the Left Ventricle. This is shown in blue. The "hole" is very small. In fact it is so small that it is not really effecting her too much altogether. Dr. Bramlett says that her heart condition is what they consider a "perfect defect". If you had to choose between any heart condition, this would be it, because everything is working together to compensate for something that is not fulfilling its duties. One defect helps another and so on. The green is showing that the right ventricle is enlarged. More than likely by a over flow of fluid/blood into that chamber. If you look at this post there is a picture of the XRAY that was done this last Monday and you can tell that her heart is enlarged.




Sixty-forty. That's how the cardiologist is weighing his decision for surgery. Sixty being the greater and where he thinks she needs to have her heart repaired soon, as in this Spring. The forty is his side where waiting has its benefits as well. This Monday Dr. Bramlett and his team will meet with the pediatric cardiac surgeons and from this meeting we should have the answers on which route we will be taking.

Making the decision to proceed with the plans of heart surgery is a decision that is a very difficult to make. At this moment it is not actually being made on the basis of Vada's heart condition, as it is timing. Right now this is a window of opportunity. Vada has been seizure free for quite a while now. She has recovered, for the most part, from being on the ACTH steroid and her heart is now in a position where it could withstand an operation. At one point the cardiac team was saying that her heart was practically inoperable and from fear of the seizures returning the Doctors think that this is our moment to go in.

Its strange because I am terrified of Vada's seizures returning. Not because of what they look like but because of the damage that they and the medications can cause. She is doing so well. "Leaps and bounds" is what her physical therapist always says in reference to her achievements. I lost her for awhile during her seizure treatments. She stopped doing things and stopped smiling. I have her back now, and I don't want to give her up. I am afraid of what all of this may mean. If we do operate then the stress from the surgery could cause the seizures to return. I am being told that it is a strong possibility. If we wait then we may have shut the door on our only opportunity of repairing her heart because, once again, the seizures may return.

Dr. Bramlett said it very well when he told me that this may be a decision where if something happens down the road we may find ourselves wondering if we did in fact make the right decision. He said that this is a situation where questioning ourselves is not something that will help in any way. All we can do is make the decision that is what we believe to be in Vada's best interest and take comfort in the knowledge that we were doing what we thought to be right for her. As much as I don't want the surgery, I believe too, that this is her time.

A Different Kind of Seizure?

Over the past week Justin and I have been noticing new physical movements from Vada. Some of them seem to be typical for her. She seems to enjoy smacking her lips together and for the most part when she does this it seems to be somewhat voluntary. We have also noticed her eyes are doing some rolling and she has displayed some odd head movements. There has been two occasions (that I can remember) where she looked liked she had "jack knifed", once Justin was the one to first notice the movements. I hate feeling like I am the only one dealing with this and seeing this. I am constantly in conversations that make me feel as if the other person thinks that I am over reacting. Maybe I am or maybe I am just defensive but when Justin is right there next to me, witnessing the same thing that I am, I just feel more self assured.

The nights are becoming somewhat of an issue again. If I am remembering correctly I posted something around a month ago in more detail about the nights seeming to be the worst for Vada. I personally think that is because of the distinct difference between napping and going to sleep for the night. Our bodies have eternal clock and it knows the difference between a short nap during the day and going to bed for several hours over the night (at least I think so). As often as I have seen Vada's body movements during the evening, it just makes so much sense to me. However, proving my theory is hard to do.

The past two days (yesterday and today) I have been video recording some of Vada's "episodes". Last night I emailed them to a friend who is extremely familiar with IS/Ws and I emailed them to Vada's Neurologist. My friend responded first. Dr. Jennings called later this afternoon. He said that he had watched the videos a few times and was concerned that she was having other seizures besides the Infantile Spasms/ West syndrome. He thought that she may be having Atonic seizures. He was also concerned with her lip smacking, which tends to be a common physical symptom of several different types of seizures. He too had noticed her eye movement and that made him uneasy.

We have the Sabril (vigabatrin) here at the house just in case the IS came back, but if its not IS then there are other medications that can treat the seizures. Ones that are potentially safer to use than the Sabril. Therefore, he wants to do an EEG and the quickest way to get one done is to admit her to the hospital. So this Monday after I drop the girls off at school V and and I will be taking another trip to Peoria to see Dr. Jennings and have that EEG done. I am assuming that I will know what were looking at before her and I leave the hospital.

I have added the videos that I sent to the doctor to my blog page What Vada's Seizures Look Like if you are interested in seeing what were seeing. You can also find more on my Youtube page. Keep in mind that the movements are hard to detect, they are subtle things that you wouldn't think much of, unless you knew what you were watching for and to be completely honest, we're not for sure if we are actually seeing seizure but it seems as if we are.

Ill just throw this out there for any parents who may have experience with GERD or similar issues. If you watch the newer videos that I posted look at how she is swallowing and the sounds she is making when she does it. She does not have a problem with spitting up so it probably is not GERD, but could it be another issue pertaining to her throat? Any ideas are welcome. I know that children who have Down syndrome have a higher risk (vs. children who do not have Ds) of all kinds of medical issues so maybe this is one of them and not seizure related...?