Oh what a LONG week it has been so far! I forget when it comes to babies, too much stimulation can be a bad thing. I think I overdid it yesterday with Liam with his back to back appointments. Everything, thankfully, went really well, we were both just exhausted by days end!
Monday, we had his appointment with the ENT to re-check his right vocal chord. Not a good report, it is still not moving and the ENT thinks it is permanently paralyzed. He said by this point he would expect some kind of movement if it were just a temporary injury. My motherly instincts prepared me for it though, as I had a feeling we were going to get that report. We knew before his surgery that vocal chord damage was a very common risk associated with heart surgery. The ENT did say though that most times, children with this issue are able to at least eat solid foods by mouth, even if he has to take liquids for awhile by tube. I guess we won’t really know how extensively this will affect him until he starts hitting milestones related to eating and vocal use. I am planning on scheduling another swallow study for the end of March, and I am hopeful that they can at least tell us that we can start feeding Liam solid food…but we shall see.
Yesterday was a marathon of a day at Medical City. His first appointment at 1:00 was to get his tube changed out to the MIC-Key button. We had to go to the Children’s Hospital at Medical City to meet the surgeon to have him change it out. It was a fairly quick procedure – 15 minutes, even though the doctor didn’t arrive until 2:00. Liam was really good and only cried for a little while during the change out….It looked VERY painful…I was surprised at how quickly Liam bounced back and was smiling and happy again about 10 minutes later. Then it was on to a quick hook up to feed him before his Cardiologist appointment at 3:00…
Dr. Verma said Liam is doing great – gaining weight really well, at 15 lbs. 12 oz. - even though this is slightly lower than he weighed in at his appointment last week, it was still a good month overall for weight gain. His oxygen saturations were lower this time, at 72 instead of 82 a month ago, Dr. Verma said his shunt sounded good and looked good on the Echo. We talked a little more about his next surgery – Liam is 5 months right now, so possibly the beginning of May we will start coordinating with the surgeon to see when the optimal time is for surgery. They will need to perform a Heart cath procedure when Liam is 7 months and then possibly schedule surgery right afterwards or possibly wait a bit longer if everything looks fine with the shunt. I can’t believe it is only a couple months away…I need to start some serious prayer time!
Speaking of prayer, God reminded me today to not forget to pray about what seems to be our reality…You know, the doctor-says kinda stuff that you just accept and move on from. I have a tendency to accept things the way they are and pray for resources to get through it – the “walk around or over the mountain” prayers. While this is good, God wanted to remind me that I can pray for the mountain to be moved! Awhile back I did a bible study that talked about just such a thing. It’s by my favorite author, Beth Moore, in her Believing God series. It talks about really believing God, especially in prayer, and knowing and believing that God is who He says He is and He can do what He says He can do. God is bigger than the doctor’s word, His miracles and healing can and DO happen. I need to remember that God’s word needs to be the source of our HOPE for Liam and not the doctor’s diagnosis. I need to pray EXPECTING and BELIEVING God to work and do big things in our life.
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