Open Heart Surgery #2 Scheduled 🙁

It’s been a few weeks since we’ve made a post… sorry about that.

Here’s what has gone on the last few weeks…

Since the G-tube surgery Evan has continued to gain weight very steadily. In the last two weeks he’s gained a pound. His current weight is about 14 lbs 12 ounces. Feeding orally has unfortunately gotten worse. We think it’s from the constant puking that he’s decided that food in mouth = puking and he doesn’t want any part of it. We’ve stopped trying to feed him orally all-together as to not reinforce whatever it is that has made him hate it so much. On Wednesday we had our first visit with occupational therapy. The therapist evaluated Evan by watching his reactions when she touched his face and mouth with her gloved hands. He was not having a very good day, worse than most and when she put her finger in the front of his mouth he started retching and puked. It was at that time that she told us that Evan was the most oral averse child she’s seen. That wasn’t very comforting to hear but at least it allows us to put in perspective how hard we’re going to need to work to fix this. We’ve temporarily switched to straight formula wondering if something Sarah eats is upsetting his stomach. So she’s going to give up dairy in the meantime and if the change in formula works we’ll try the ‘dairy free’ breast milk. If the formula change helps and the same is true of the dairy free breast milk that would be great. If Sarah’s diet change doesn’t help and the formula does then I guess we’ll switch to formula but that would be a real disappointment. Sarah works very hard for that milk… pumping 5+ times a day, the endless pump parts to wash, lugging it around with her wherever she goes, always having to schedule things around pumping. It would be a shame to see the 2+ months worth of milk in the freezer go to waste. Spending $235 per month on formula vs the zero we spend now is another negative.

 

We had a follow up appointment in Ann Arbor with Neurology for the stroke/seizures that Evan had back in August. Dr. Lieber was very happy with his progress, he didn’t see anything out of the ordinary. So far Evan has developed very well, and we’re not seeing any negative impact of the brain injury. We’ll follow up with them again in 6 months.

 

 

 

 

It’s Christmas time and what is a must for kids at Christmas? Sitting on Santa’s lap of course! Our friend’s brother dresses up as Santa at Christmastime for events – and since he had the costume laying around he thought he would offer to be our personal Santa so that we don’t have to lug everyone to the mall.  It was very kind of him to drive from Grand Rapids (yes in costume) to walk into an ambush of babies.  Getting 5 kids ranging in ages of 4-13 months in a picture with Santa is no small task. Shear chaos, but it was fun.

 

 

We’ve been seeing the cardiologist every two weeks and so far everything has looked great. Our appointment two weeks ago was no exception, Evan’s oxygen saturation (sats) were in the low 80’s which is great given his heart condition. After leaving last time and not having an appointment for another 2 weeks we really thought things were looking good. If you would have asked me yesterday I would have told you that I thought Evan’s surgery would not be until early February.  Today’s appointment didn’t go as well. His sats were in the mid 60’s today. What gives? Well, he’s a growing boy… His shunt, only 3 millimeters wide can no longer supply enough blood to his lungs to keep up the level of oxygen in his blood. As he grows it’s only going to get worse. The cardiologist performed another echocardiongram to look at his heart function and the shunt, both of which were good. Then she told us that she was going to call the surgeon at U of M and let her know that it was time for the next surgery. We were taken back to say the least. We left the appointment with heavy hearts and lots of dread. I went back to work and attempted to get some things done but all I could think about was my beautiful little boy and what he’s going to have to go through… again. A short while later we got a call. Evan goes in for  a heart catheterization  on Jan 5th and the surgery is scheduled for Jan 6th. Less than 2 weeks away. 🙁