| Amanda Update |
| (Last Updated: January 19th, 2002) |
| Uh Oh, here we go again! Over the last few days, Amanda has developed what appears to be some sort of infection. Given her small size and development, infections really knock her out. What makes the situation even more frustrating is that the cause of this infection remains unclear. Many of her symptoms are different than what is usually seen in a typical infection. In laymens terms - they're stumped. To date, none of the MANY cultures they have taken from all over her body have grown anything. As a result, they continue to treat her with a broad spectrum of antibiotics and antifungal medications. They're trying to cover all the bases. This time, the doctors have also consulted with specialists in hematology and infectious disease. They suggested that she be infused regularly with immunigloblins to help boost her underdeveloped immune system. This is a relatively new practice and not much clinical research is available on what to expect. As an additional precaution, they also suggested that Amanda be screened for a couple of rare disorders, but they don't expect to find anything there. Her digestive systems remains a suspicious area. She is nearly two months old and still has a hard time tolerating feeds. During these flare ups, they routinely take an X-Ray picture, called a K.U.B, of her abdomen. Some days the K.U.B. looks fine, other days it shows areas of concern. Amanda's doctor indicates that once she's over the infection, he would like to begin a more intense study of her digestive tract. Digestion remains as one of her biggest challenges. Last time Amanda had an infection her medical team thought that it might have been caused by her central intravenous line and, after a few days, they decided to pull out the line and culture it. That culture never grew anything, but Mandy did start to feel better soon after it was removed. Coincidence? Whether or not her central line was actually the problem remains a mystery. This time, they began looking at her central line immediately and choose to pull it out and have it cultured. This may prove, or disprove, their previous theory. If her central lines are the cause of these mysterious infections, the poor kid is not going to enjoy her stay at the NICU. She can't eat enough to get the necessary nutrition, so her medical team has to rely on intravenous lines. If she reacts like this to central lines, there only other alternative is to use short-term peripheral I.V. lines. This type of line generally last less than a day,so they take out one line and put in another somewhere else. They also will have to draw blood (for her frequent blood tests) from heel sticks. Ouch! The poor kids a pin cushion. Unfortunately, when Amanda get's sick, she loses most of her strength. As a result, she's be taken off of C-PAP and re-intubated onto a conventional respirator. She hates having the tracheal tube down her throat and has already pulled it out three times in two days. What a little pip! I think she gets her attitude from her mother. :-) We will keep you posted on her progress over the next couple of days. Kim and I have spent a lot of time at her bedside and are happy to report that she is looking better. She's regained a little of her strength and color. We're hoping she is turning the corner and heading back towards solid ground. Thanks for your prayers and support. We plan to update this site regularly so save it in your "favorite places" and come back often. Also, feel free to leave a message in Amanda's guest book on the main page. Kim and John |