Wednesday, March 31, 2010


We have fallen behind on posting recently be we have finally gotten around to giving everyone an update.

We were admitted into the hospital on Wednesday 03/17 because Caeden had a fever. Caeden had gotten the Synegis shot for RSV on Monday when the home care nurse came to change the dressing around the Broviac. Caeden got the fever on Tuesday and we were told that he might get a low grade fever due to the shot. He hadn't gotten any better by Wednesday and we actually had a follow up appointment with Dr. McLoughlin on that day. Our Doctor told us that the Synegis shot shouldn't cause a fever and she immediately admitted us. They did multiple blood tests and blood cultures but nothing showed an infection. Therefore, the doctors never found the cause of the fever and we were discharged on Tuesday 03/23.

Caeden was doing great at home until he contracted another fever on Monday 03/29 at 12:30 am. We called the GI doctor on call and he told us to go straight to the emergency room and that he would notify them that we were on our way. Denae and I packed our bags to prepare for another lengthy stay at the hospital and then left for the hospital. We arrived at the ER around 3:00 am. Thankfully, the ER was not busy at all and we got right in and they started giving Caeden antibiotics. They took a blood culture and did a urine test. We were only in the ER for about two hours and then they moved us up to the sixth floor in the Pediatric Specialty Care Unit. Once again they took multiple blood tests and nothing showed up. The blood cultures aren't growing any bacteria either. Our doctor is frustrated because she does not know what is wrong and why Caeden keeps getting fevers.

Therefore, Dr. McLoughlin scheduled to do a liver biopsy today. She is hoping that by doing this operation it will provide her with some answers. We had to go down to ultrasound around 11 this morning so that they could mark the exact spot where Dr. Mcloughlin needed to insert the needle. This step is crucial so that there won't be any main blood vessels that are in the way that could be punctured which would cause internal bleeding. We took Caeden down to the OR at about 12:30 and they took him in for the liver biopsy. We were able to go back to the recovery room around 1:30. Caeden could not eat for another 4 hours after the biopsy due to the risk of bleeding which made it a hard 4 hours. However, Caeden did really well and was a trooper. When 5:30 came around Caeden sucked down a bottle and was much happier.

We should hear some results tomorrow from the biopsy and find out what the next step is. We will post again once we have more news.

Friday, March 5, 2010


We finally were discharged from the hospital after 3 weeks! Denae, Caeden and I were so excited when we got released at around 10:00 am. We had developed some very good relationships with some of the nurses at the hospital and they all cheered when we walked out. The nurses were sad to say goodbye but also very happy that we were being discharged. They all said they were going to miss Caeden. Denae and I learned that our son is already starting to flirt with the girls!

Caeden was originally admitted into the hospital with a line infection and then this past Monday we found out that he had developed a condition called cholangitis. He is on an antibiotic called Zosyn. We have to administer this three times a day over a period of about 30 minutes each time. After his 14th day of treatment we will discontinue the antibiotic and hopefully he will not have to go back on any antibiotics any time soon.

Thank You all for all of your continued support and prayers through this very difficult time. Everyone has helped us stay positive throughout this and while in the hospital. Caeden only looked sick when he had his fevers and other than that you would never be able to tell that he has this progressive liver disease.

Denae and I were able to see Caeden's personality prosper while in the hospital. He has become very active and loves to lie on his back. He likes to move his legs and arms really fast. When he wakes up in the morning he is always very happy and loves to smile. He has the biggest smile!