Day 15
Today Afton had a swallowing test. They took an X-ray of her swallowing to ensure that all the liquid goes to her stomach and not down her airway. If some of the liquid is leaking into her lungs it could cause an infection, which could be dangerous for her. She did really well with the test and so they have let her start to practice bottle feedings with small amounts.
The doctors have been starting to educate us more about Afton’s disease. About 1 in 100,000 babies are born with this. It is quite rare, so not only are we learning the medical professionals are leaning more every day as well.
The most important part of keeping Afton healthy in the future is to ensure that her ammonia levels stay within normal ranges. We can do this by giving her medicine and putting her on a special diet. However, when Afton’s body creates white blood cells, her ammonia levels can go up as well. So, this means that anytime she is starting to get sick, we need to be proactive and get her to the emergency room. They will give her the nutrients and fluids that her body needs to lower the ammonia levels. To begin with, we will need to go to the hospital for any of the following: a cold, fever, loss of appetite, vomiting, flu, or exposure to people who have had the flu.
This is very overwhelming for us to think about as parents, so we would like to ask for help from our closest friends and family in monitoring this. If we are all together and you/your family has had or had exposure to the flu (or other illnesses), we ask that you let us know. Additionally, if we are together and soon afterwards your family gets ill, we would appreciate a phone call letting us know that as well. Lastly, as fun as babies are to hold and play with we ask that you refrain from doing this if you have been sick or around others that are sick. As Afton gets older this shouldn’t be as hard for us to manage, but we need to be extra careful in these younger years.
There is more talk about getting Afton ready to go home. At this point we think that she will go home with a feeding tube. She will probably be able to take a bottle, but the feeding tube helps us guarantee that she is getting the appropriate amount of calories as well as her medicine. This is our preferred method because if we have direct access to her stomach, there is less risk of her ammonia level rising to dangerous levels with her first illness. So, if she starts to vomit, we can ensure her body gets nutrients and the appropriate medicine by using the feeding tube rather than trying to get her to swallow it.
We are open to visitors if you would like to come and meet Afton before she leaves the hospital. Please just call one of our cell phones to arrange a time that works. Again, we ask that you not visit at this time if you have been sick or even around someone who has been sick. Thanks for all your support and prayers.
