Thursday, February 18, 2010

Which way will we go?

I am torn. WE are torn. And we don't know what to do. Here is the situation, as simple as I can possible make it.
  • Eli needs open heart surgery.
  • He needs it sooner rather than later.
  • Eli is not in heart failure but has severe pulmonary hypertension.
  • Eli is 3 months old and just reached the 8lb mark.
Now to where thing get tricky. Originally were were going to have Eli's heart surgery at The Heart Institute in Hope Children's hospital. Dr. Illbawi was going to be the skilled surgeon going into Eli's little heart and repairing it. The date was still unknown and there have been very little talk from our cardiologist about it.

Josh and I have both been paying out ideal situations in our minds as far as when surgery would be and how we could make it work. We would love for it to be done while Josh is off for spring break at the end of March. Then we could stay as a family at the Ronald McDonald house and take turns spending time at the hospital with Eli. Malachi would be with us as the house, we would be together and Eli would have equal time with his mom and dad. Ah, this would be the perfect situation. Realistic? Probably not. 

However, I got a phone call from the Cardiologist at Children's Memorial Hospital wanting to discuss Eli and our options as far as where to have the surgery. After talking to her for over an hour on the phone, I was even ore confused than ever. They seem willing to work with us on getting a date (most likely over spring break) and agreed with me that it needed to be done sooner rather than later. They arranged to have a messenger drive out to our cardiologist (about 2 hours away) to get Eli's records. This way they can discuss him at their meeting on Monday and make their decision on what should be done. Dr. V told me she would call me late Monday night and let me know what they thought. She then gave me her personal cell number and told me to call with ANY questions. I  have, twice. After they meet we get to set up a time to go in and speak with the cardiac surgeon and a nurse, go on a tour and ask any and all of our questions. Did I mention Children's Memorial is ranked 12th in the nation for Cardiac surgery? 

What do we do? Where do we go? Which man do we want to do the repair? How do we decide? I don't like this one bit and wish someone would just give me an answer!


Tara said...

I have no words of wisdom on what you should do. I just want to mention a few things. First, we found the anticipation and time leading up to heart surgery to be worse than the actual event. Fear is no fun. Second, a woman whose child has had several heart surgeries gave me the gift of perspective. She said, "Heart surgery is scary but not having the option of heart surgery is unthinkable." Praying for you!

Kristin said...

Totally random thought, but... from my experience (and this is totally arrogant, I know, but it got me through Max's surgery)... I wouldn't be too concerned with where, just get it done. I kept thinking, why would God place this child in our family just to let his life be taken by a surgeon? I was so confident that he would be fine during surgery, no matter who did it. (and yes, there are other complications other than death, but I didn't really even spend time thinking about them) I know that's arrogant, but really - these doctors wouldn't keep their jobs as surgeons if they were totally crappy. With that said, even the best doctors can make mistakes. What's going to be best, the hospital or the date? What's going to keep some sanity in your household? Go with your mommy instinct, and GOOD LUCK!!! Prayers :)

Emily said...

You are such a good Mommy. I know through a lot of prayer, you will make the best decision for him!

Stephanie said...

So, what does your gut say? You know both of these doctors - if they were both in the same place, which would you choose? Christopher had his surgery in Peoria - smaller hospital relative to Children's Hospitals. :) We LOVE them there - to the point where all of his care has been shifted to Chicago and Milwaukee EXCEPT Cardiology. Do you feel that way about one doc or the other?

The other issue is to look at the PPH. Cardiologists deal with it, but they aren't the be all end all professionals.....does the closer hospital have a Peds Pulmonologist? - not allergists, but actual pulmonolgy doc? I was suprprized to find that Comer only has audult pulms on staff...Peoria has none.

As far as the timing, I think (hope) what they are getting at is that repair needs to be done ASAP to minimize damage to the blood vessels in the lung from the PPH - however, if he is maintaining and not totally incapaciatated from the heart defect - then it is not an emergent situation. A month or two is not going to make THAT big of a difference, where as if he could have a good quality of life without the OHS for a couple of years otherwise - that could be more serious in the long run from thePPH.

I am sure this is clear as mud.LOL!

If we were closer, I would just say we will come get Malachai and have an extended playdate....although I don't know if you would be comfortable having him that far from home. :) Offer stands tho!

Hugs & prayers! E-mail me if you need anything.

Steph and Christopher