Monday, December 19, 2005

Merry Christmas

Emma is starting to feel better with all of the antibiotics. She turned 5 months old on Friday and is very active right now. She is constantly looking around the room and cannot sit still. On Friday evening she had her latest operation. This time they put in her feeding tube in her tummy and put a new broviac IV line in her leg. The feeding tube is on the left side of her tummy and goes directly into her stomach. The broviac allows the nurses to give her antibiotics and draw blood without having to stick her with a needle every day. She started to feed through the G tube yesterday and it is working well. While we are disappointed that Emma needed another incision and hole in her body, it should help her feed better. They are also doing a swallow study right now to make sure that everything goes where it is supposed to. Emma has been on antibiotics for a week now and needs to remain on them for a total of 35 days. After that, we may be able to bring her home. They are also talking about the possibility of sending her to a step down facility before sending her home. She would be in a home like environment, but would have 24 hour care. It would also allow us to bring her home on the weekends. We hopefully won’t need this, but Alissa is meeting with a representative today to learn more about it. Have a wonderful Christmas.

Wednesday, December 14, 2005

Another Setback

We had a meeting with the head doctor in the PICU yesterday to get an update on Emma’s condition. She has an infection in her blood, eye, and trach. Due to this, she will need to be on antibiotics for another 5 or 6 weeks. In all likelihood, she will need to remain in the hospital during this time. The occupational therapist has been working with Emma every day on trying to get her to feed. Because she is 5 months old and never learned to suck, it is very difficult to teach her how to feed. He compared it to teaching a child with cerebral palsy how to walk. He also explained that the G tube in her stomach would be more beneficial to Emma than the NG tube in her nose because the NG tube can cause irritation. It will be at least a week before we do anything with this though. With being sick, Emma has lost some weight as well. She is down to just over 6 pounds. Her fever is gone and is a little more comfortable than this weekend. It looks like we will be spending Christmas at CHOC this year. Thank you all for your continued support.

Two Steps Forward, One Step Back

Emma has been back at Mission for a week and it has been up and down. The nurses helped us take family Christmas photos on Thursday. It was a lot of fun to take Emma out into the hall by the Christmas tree. We transferred back to Mission so that Emma could learn how to feed. Today they will finally do a swallow study to make sure that when she swallows that it goes to all the right places. Since it has taken a week to get to this point, it is looking doubtful that she will be home for Christmas. In addition, on Saturday morning Emma came down with a 102 fever. They ran all sorts of blood tests and she has a few infections. She has an infection in her trach and in her blood. As a precaution they removed her central IV line last night. They will most likely put a new central IV line in later this week. It has been nice being back at Mission. All of our old nurses have stopped by and visited. None of them can believe how big she has gotten. Please pray that Emma recovers quickly from her infections and that she can learn to feed soon.

Tuesday, December 06, 2005

Back At Mission

Yesterday Emma was transferred back to CHOC at Mission. Since she spent time in the PICU at CHOC, she could not be transferred back to the NICU at Mission. She needs to be quarantined for 72 hours as they run tests to make sure she didn’t get anything at CHOC. She is in a nice room in the PICU. When we arrived yesterday she was the only patient. We had the whole ward to ourselves. It was nice to be back at Mission. We had many of our old nurses and staff visit throughout the day. Over the next week or two Emma will be working with an occupational therapist on feeding. The hope is that she can feed completely on her own, but it is more likely that she will need the G tube placed in her belly to feed her. We want to at least give her a chance to learn to feed before having another hole put in her. Even if she has the G tube put in she will be able to feed orally as well. We will just be able to give her what she doesn’t take by bottle through the tube. If everything goes well, Emma could be home in a couple weeks. It is very likely that she will be home for Christmas. We cannot wait to have her home.

Thank you,

Mark, Alissa, and Emma

Thursday, December 01, 2005

Emma News 12-01-05

Good Morning,

Emma is doing well and making good progress. She has been working with an occupational therapist for the past week on feeding by bottle. She does well sometimes, but is uninterested at other times. She has also been spending more time off of the ventilator. Yesterday she was off the ventilator all day until midnight and then she was only on the vent while she slept through the night. She has been throwing up a bit this past week and we are not sure why. Overall, we are very pleased with her progress. She has lost some weight, but it was mostly fluids. She is around 6 pounds 10 ounces right now. We have spoken with some of the nurses at Mission and we are not so anxious to get back there now. They have plenty of beds, but not enough nurses. I have a feeling we will just stay at CHOC in Orange until she comes home. They still don’t have a time frame for Emma going home, but I suspect it will be in January sometime. We were able to spend a lot of quality time with Emma and the nurses over the Thanksgiving holiday. We helped decorate the PICU for Christmas. We spent about 15 – 20 hours cutting out decorations. It was nice to be able to give back a little bit.