Dear Family and Friends:
Here we are at day 3 in the hospital here at Scottish Rite. Emory is doing better and they are still running tests on various things.
Originally, the dr. didn't think it was necessary to do a feeding observation. Emory was doing well on his feeding tube and hadn't thrown up very much, so he didn't order the feeding observation. Then, after talking with the nurse and the nutritionist, we decided that we should request to have one done.....we might as well do all we can while he's in the hospital. So, a speech pathologist came in this morning to observe Emory eating from the bottle. After observing him eat, she was a concerned that he coughed after he ate, his swallowing, and that he needed so much chin support. As a result, they are going to do a OPMS test (swallow test) on Monday. They are going to feed him through the ng tube (in his nose) all weekend because the speech pathologist only wants him to be bottle fed by a medical professional just in case he starts choking during the process.
So, our problems with Emory's eating include several aspects.....
His heart is working so fast and so hard that it burns the calories just as fast as he is eating.
There is a possibility of something being wrong with his Lower Esophagel Sphincter (LES) which is a muscle that helps keep the food down. It's possible that this muscle did not fully develop or simply that it's just not working. This is something that can be corrected with surgery but also that kids outgrow over time. For now, we are going to just wait and see how things go for him.
They changed his formula from Neosure to Alimentum. Alimentum is supposed to be for babies with digestional problems. Although he's done better, I don't think that the formula is playing a huge part in all of this.
For babies with DiGeorge Syndrome, there are several anomalies in the back of the throat and with the mouth that can play a huge role in how a baby eats and how the weight gain goes. They will be able to look at these on Monday when they do the swallow test.
More than likely, when we leave the hospital, we will leave with him being fed with a tube. This will help him keep more food down and will hopefully help him gain weight. It would be ideal for him to weigh 12-13 pounds when he has the open heart surgery, so the closer we can get to that the better. At our last cardiologist appointment, she said it was ideal for them to do surgery at 6 months, but she didn't think he would be able to wait till then. We see the cardiologist again on Thursday to see if he has gained any weight and to reevaluate things.
It is pretty much all a vicious cycle and several of the things he's dealing with go against each other. So, you can keep praying for him to gain weight, for the swallow study, and for the doctors to have wisdom in knowing the best time to do the surgery.
Again, we appreciate everyone's prayers and all the little things. Thank you to the Nobles for dinner last night. And, thank you to Eric Heim and Doug Barnett for taking care of our grass being cut on two different occasions. Also, a big thank you to Gremmy and Papa who are taking care of our other two boys at their house in TN. Every gesture is greatly appreciated.
We'll update the blog again when something new happens, and will especially give a report on Monday. Have a great weekend!
Claude and Twila