Thursday, November 15, 2012

Not ready to go back yet

Life in the Willis house is just as crazy as ever! Jensen keeps me super busy and laughing all day long! This kiddo has so much personality, I can't take him anywhere without him getting assaulted by little old ladies! (Of course I have to make his hands and feet inaccessible and slowly back away from them so they don't touch him and give him the plague.) He is such a flirt =)

Jensen had his first experience playing in the bath tub today! He was a slippery little fish and kept wiggling out of my hands while I was trying to bathe him. This was the look he gave me when escaped while I was washing his hair! He had a blast and loved playing with all of his new bath toys (like he needed more toys! hehe!). 

We had a cardiology appointment this week. Jeremy and I have both had a feeling that we will be seeing Philly sooner than later. My mommy-spidey senses haven't let me down yet. Jensen is due for his cardiac cath in the next month or two. After  his Glenn, CHOP told us to expect a cath in 6 month-a year. This is all so expected but somehow it still feels like a shock. 

Jensen was great during the echo, even though he was a bit squirmy. He is over 20 lbs now!! Dr. Robinson was pleased with his progress and his physical exam. However, the echo showed a few concerning areas: 
1) Turbulent flow through the stent in his superior vena cava (indicative of narrowing)
2) Decreased flow through the stent in his pulmonary artery
3) Narrowing in his aortic arch

The stents were the areas we knew about, the aorta issue is new. The two stents will need to be dilated, since they are essentially a foreign body and do not grow with him. (I mean, look at this chunky boy, of course he is outgrowing his stents!) The narrowing in his aorta will need to be dilated as well. The echo is definitely not the best diagnostic tool to use and the cath will give us the definitive answers about the status of his stents and also of his Glenn connection (which has always worried me). 

So now starts the familiar routine of referrals, authorizations, scheduling, searching for flights, booking a hotel, etc... I am anxious to get to Philly and get this over with.  Dr. Robinson said that Jensen could stay stable like this for another 6 months. However, there really is no benefit in waiting to do the cath so he advised us to get it done as soon as possible, without rushing. (Yea right, I was ready to head to the airport after that appt!) 

I am absolutely dreading this trip. Lately, I have seen so many families have massive complications from the 'minor' procedures. Cardiac caths are still a surgical procedure and are still invasive. The risks include death, stroke, clots, and many other scary things. That reality is terrifying. I keep thinking that the more we put Jensen through procedures like this, the higher our chances of encountering some of those risks. Jensen has been through enough already and I hate the thought of doing this to him again. I know it is life-saving, so there really isn't a choice, but that doesn't make it easier. 

Another fear is that Jensen will suffer developmental setbacks from this. With the upcoming cath and the Fontan (last surgery) looming over our heads, we are so nervous about him bouncing back. This brave little soul has already proven himself to be extremely resilient, but I worry about that resiliency waning as he gets older. His brain has suffered  insult after insult and I am afraid that it can only handle so much before it stops making up for losses and overcoming such massive damage. Every week at physical therapy he makes huge strides and is on track with what he should be doing. I'm so worried that all of his hard work won't count for anything if he has a complicated recovery at the next surgery. 

That is our way of thinking now. Yes, this cath is considered minor. Yes, it should only be an overnight hospital stay. But those "minor" things start a wildfire in my mind of all the possibilities and every scenario of what could go wrong. I love this little boy more than life itself and I don't want anything to stand in his way. He's doing amazing things and is such a warrior, but I hope this next battle isn't too hard on him. 

Please keep us in your prayers as we get ready for our next trip to CHOP. We are hoping that the cath will be scheduled after we spend our first Christmas together at home! 

1 comment:

  1. Praying for you all on a daily basis! Hope you all have a wonderful Christmas!!!