Wednesday, October 13, 2010

Wednesday, October 13, 2010

Today was a whirlwind of changes. When I got to the hospital, we were still waiting on the results of Caleb's chest x-ray. By the end of the day, I had found out that it looked better than yesterday. The increased diuretics seem to be working, but of course that means Caleb's weight is back down. Now we are 25 grams above his birth weight. Twenty five grams over 8 weeks is not a great accomplishment and is not putting us on the road to grow into the shunt.

I talked to the nurse practioner about the mixed messages I have been getting from the nurse practioners, surgeons and cardiologists. She said that there has been a large amount of discussion about what to do with Caleb. We seem to be stuck, with no steps backward, but no real steps forward, and everyone seems to have an opinion about what is going on. Opinions abound and real evidence is hard to find.

As soon as we got done talking, the cardiologist told the nurse practioner that Caleb was going to have surgery on Monday to downsize his shunt. We have been told previously that this was not a possibility that anyone was seriously considering. They were worried that he would still not like a smaller shunt and we would be performing dangerous surgery for nothing.

When I talked to the cardiologist, the overall feel I got was that we had to do something and hope that this worked. I called Phil to make sure he can be here Monday and we made plans to make sure the Big Three got here this weekend in case things go bad on Monday. I was in tears, but Caleb was still fussy so I couldn't go to the Chapel for my obligatory breakdown.

About forty five minutes later, the surgeon came in to talk to me. He came in with a big smile on his face and asked me why I was all teared up when we were looking at good news. He explained the situation in more detail and things are much better than they sounded earlier. As you may remember, when Caleb had his heart catheterization last week, the pressures in his lungs were too high and this is a problem for the other surgeries in the normal plan. In the past three days, his oxygen saturation levels have hung out between 80 and 90 percent. This is higher than what they have been (and higher than they want them to be). The surgeon feels that this is an indication that the pressures in the lungs have decreased on their own, eliminating the need for the Viagra and giving us a situation where downsizing the shunt may provide real results. While Caleb will have to have his chest opened, will need to be intubated and put on the ventilator again, he should not have to go on heart/lung bypass. The plan is to put a little clip on the shunt to reduce the diameter and choke it down a little. The surgery should take about three hours and should not involve messing around with his heart, just the shunt.

If this works, it should reduce the blood flow to his lungs. This should keep his lungs from flooding and allow us to come off the high flow air. The reduced blood flow to his lungs will result in increased blood flow to the rest of his body. This means more blood for his intestines (less chance of shutting down again) and his heart (less likely to have a heart attack).

While I am not excited about more surgery and the potential complications (terrified is more like it), I am excited that maybe this will be the fix we need to move forward. I am also happy that Caleb has started to show us more of what he needs, instead of just telling what he doesn't want. Please pray that this is the change we need and that this will do the trick.


  1. As bad as I felt when I read you couldn't go to the Chapel, I was thankful that the surgeon was there in less than an hour to see you and bring some encouragement into your situation. Hugs for you, dear sweet Jen.

  2. Now what I see from my computer, with only your pictures and your daily updates to guide my heart, I feel God's presence over this life that is struggling with a less than perfect design. I'm glad the surgeon was there to encourage you and assure you that this is their educated opinion on how to improve Caleb's heart and lung function. Our prayers are ongoing.

  3. What a rollercoaster you have been on. I will pray for fabulous results on Monday. Love to you all.


  4. Praying for Caleb,your family, and the surgeons. Caleb is a strong little guy! Here is a hug for you. Love ya