Aubrey Judith

Today was a pretty good day we went to the hospital to find that they clamped off her left chest tube to see if the fluid builds up… if not they can remove it. The tube on the right side is still draining but it has slowed down. Aubrey’s vent was set at 32 when we left last night and today when we went in it was 28 and now it’s down to 26. Her bowel sounds were better today they went from an A with a down arrow to just an A and that is where she needs to be. The tube in her belly has been putting out clear liquid for a few days now and the dark green color that is was is now coming out of her stoma so that is moving in the right direction now. They also took her off her antibiotics today because none of the cultures have grown anything. They had given Aubrey lasix to make her pee more to try and get the bloating down on both the inside and outside and she is look much better her tummy actually look almost normal. The doctors said they are waiting on the go ahead to start tube feeding her so hopefully that isn’t far off. Matt had asked how long they wait to reconnect the bowel and they said they like to wait at least 3 weeks. I asked how they knew it was okay to reconnect and they said they do a contrast dye and look at it on x-rays to make sure it makes it all the way through… we aren’t there yet but at least we are starting to head that way.

Not much going on the past few days. Yesterday 2/27/08, we spoke with another one of the pulmonologist who said a good time line for Aubrey to go home is 6-8 weeks (April 23rd). Three out of the four pulmonologist are U of M graduates, so we know Aubrey is in good hands.  The docs also decided to change out her PICC line from a single to a double. A PICC line is a central line, catheter, that delivers meds close the heart. Well Aubrey was in rare form and she fought them the entire time. After about an hour and a half they gave up and said they would retry in the morning. Well after this event she didn’t want to settle down all night. She continued to fuss and squirm until 2am, when she decided to sleep. Today 2/28/8, we arrived at the hospital and found Aubrey on her tummy, butt in the air, sleepy peacefully. She was later placed back on her back and just laid there looking at her mother and me. The nurses decided to retry the PICC line around 4pm, they finished around 630pm. For a baby that can’t poop she really is a turd.

On Friday 02/22/08, we did receive news from the state newborn screening. Aubrey is positive for Cystic Fibrosis (CF). They were able to tell us the exact mutation, but I can not remember what the combination of letters and numbers were. They are not able to tell how Aubrey will be affected by CF at this time, we have to wait till her other issues are fixed. CF is an inherited chronic disease that affects the lungs and digestive systems b/c of unusually thick and sticky mucus that clogs the lungs and stops natural enzymes from breaking down food. Children diagnosed with CF at one point were not expected to make it to elementary school, but now 40% of the CF population is over 18 years of age. For more information you can visit www.cff.org or www.esiason.org . Be careful, some of the information on the web is designed to scare you, but the two sites I mentioned have been recommended by the docs.

Today was a nice day, nothing big happened, but the amount of fluid that is draining out of her left and right sides is going down. The section of bowel that was brought to the surface (stoma) is nice and pink, just what the doctors wanted to see. Aubrey spent a good 45 minutes today with her eyes open and staring at her mother and I. She would also look at the vent tube in her mouth and follow the tubes as if trying to think of a way to pull it out of her mouth.

2/23/08, Today started out with a phone call from the hospital, waking me up, not a good thing. I spoke with Dr. N, who said the stitches had come loose and they needed to take her back to surgery to replace the stitches under the skin and the ones on top, they would also flush the area. Figures they would come loose with all the wiggling she does. She was only in surgery for about 15-20 minutes, and they had no problems. She is now resting peacefully on a bed of gel (wish I had one). The left chest tube has slowed down on the amount of fluid coming out. The right tube has had little fluid output. The Doc’s are still saying it just the body’s reaction to everything going on with her belly. The fluid is made up of mostly protein and electrolytes, which are being replaced as they come out. Her white blood count is also lower than it has been in a few days, so the anti-biotics and anti fungal seem to be working. On a good note, Aubrey was visited by Aunt Lindsay and Uncle Carl. They brought a valentine from Cousin Charlie (1 year old) and a bunch of kisses.

Well today, 2/21/08, was better than yesterday when we showed up Aubrey wasn’t purple. After complaining about the staff not doing things they were supposed to do, it seems they don’t want me touching the hoses anymore, instead I am to find one of them so they can do it. The nurse today didn’t seem friendly at first but she did know what she was doing, so that’s a good thing. The swelling has gone down a lot so she looks almost normal if it wasn’t for the tubes sticking out of her. Aubrey was in pain today so she spent most of it drugged up, so not a lot happened. She did get a new accessory belt and yes I had to add my little touch.

Today (02/20/08) started out bad. When Carrie and Grandma Hansen walked into the room (1130am) little Aubrey was turning a not so good shade of purple. After some quick action by the Respiratory Therapist, they were able to get her back to being pinkish. They had to install a chest tube to her left side. Some sort of fluid, unknown origin or consistency, had built up in her chest cavity and was collapsing her left lung. The tube relieved the pressure and aloud her lung to fill with air. As of 11pm EST she had 100cc’s of fluid drained out and Aubrey appears to be doing much better. Aubrey also had to have the IV in her left arm removed for some reason, not clear on the why, and the only place left was her head . I’ll be emailing Lindsay pictures, b/c I don’t know how to post them or what size to make them. Some of the Nurses have stated she turned blue b/c she didn’t like the UM apparel she was wearing, the pictures will explain. ‘Til next time……Matt

ETA Pictures:

I don’t know much to update everyone with but I know that AJ is having  some issues with fluid collecting in her chest area and because of it they are keeping her on the ventilator still as a precaution. They are doing some tests to see where the fluid is coming from. She is doing ok but they are keeping a close eye on her.

From Matt:

Quick update. Today the surgeons decided that Aubrey needed another surgery to see what was making her belly so big. They located a piece of the bowel that was infected, perforated and just about dead. They had to remove the section and bring the upper end out and giver her a calostomy bag and tie off the other end. The two ends could not be pieced together at this time for some reason I cant remember. She is back on the ventilator but they said they will be working to get her off of it by morning so we are crossing our fingers. I have attached some post op photos.

Aubrey is out of surgery and doing ok. She is on a ventilator but is breathing mostly on her own this time around. They did have to do the bag thing so they will need to do another surgery to close her up once everything has healed and the swelling has gone down. But the bag is good since they will be able to keep a closer eye on her and be able to see how it is or isn’t healing. They did find it was infected and removed the infected part so hopefully that will help the healing process. I think that is the just of it all. We’ll let you know of any other news we hear.