January 2012
3 posts
School Time
Afton had a great time over the holidays. She was able to spend a lot of time with her cousins, aunts, uncles, and grandparents. Coming out of the holidays she did get a stomach sickness, which isn’t really surprising. Her stomach bug was treated with antibiotics and she is just starting to return back to normal now. Unfortunately, she has suffered from a bad diaper rash for almost 5...
October 2011
2 posts
A Different Kind Of Waiting
As usual, we need to start this blog post with an apology for not keeping things updated. Going into summer, Afton was on the transplant list at a pretty high priority. A couple of her doctors were having a debate about her future care. One had the viewpoint that she should have the transplant now based on all the observations and what she had been through this spring. The other thought that...
April 2011
2 posts
Waiting Once Again
Afton has recovered from her surgery well and overall has had a good week. She is in a great mood and just charming her doctors, therapists, and of course her nanny. Things are pretty low key around here since we have had a few illnesses around the house. So far Afton hasn’t gotten sick but we aren’t in the clear yet.
Afton had to see the doctor today because her stomach where...
March 2011
7 posts
Getting Through, In More Ways then One
Afton finally was able to receive the proper, uninhibited surgical procedure that set off this flurry of hospital stays. In the face of all of the negative hangups that have occurred over the last couple weeks, something finally went right: Afton’s procedure was a success.
The doctors had set the expectation that there was a high probability of the procedure not being a success, but it...
Surgery Part II
Afton was transferred out of the PICU today but is still in the hospital. She is going to have her originally planned surgery tomorrow. They will give her IV fluids and monitor her closely to hopefully avoid any serious issues like during Wed’s procedure.
We will update soon with the results.
Back to the PICU
Afton went in for her surgery early this morning. Part way into the procedure her heart started to beat abnormally. They immediately stopped the procedure and worked on getting her stable. They soon found that once again her potassium was dangerously high. So, the procedure was ended and she was transferred to the PICU for monitoring.
She had a consult with a renal doctor (kidney) today to...
Meeting after Meeting
Afton has been home over the weekend and in a good mood. We are working really hard to keep her hydrated and maintain her bile bag (attached to her hip). As of today we have officially met with all the necessary doctors and it sounds like Afton’s only option at this point is to be re-transplanted. This means that there are no treatments left to help her current liver along.
So, by the...
In the PICU
Afton is a week past her surgery and bile continues to drain outside her body. Her skin continues to get better but is still a little raw and itchy. We have noticed that no matter how many calories we get into Afton she hasn’t gained weight. It was this week that we noticed that she was looking more unhealthy.
Last night she woke up around midnight and couldn’t get comfortable to...
48 Hours
We have had a very active 48 hours and are emotionally and physically recovering. First, we’ll start with some good news. We were able to go on vacation to a beautiful spa in Colorado. Afton’s grandparents all chipped in to help take care of her while we were away. We had a great time but were disappointed to hear that Afton needed a liver biopsy the morning after we got home....
November 2010
2 posts
Keeping On
It’s been a while since we posted, so there’s a bit to catch up on. Afton hits her 6-month post transplant date, 3 days after her second birthday - this month.
After the transplant, and with what we knew about the liver she received, we didn’t think we’d get this far on this liver. However, despite a few infections and a couple sicknesses here and there, Afton’s new...
July 2010
3 posts
Surgeries
Afton has been doing well now that she is on antibiotics again. She is still in the the hospital but hopefully will be coming home tomorrow, July 12th.
Last week they did a minor surgery to remove her port. While they know the infections are coming from her liver they also believed that the bacteria was gathering on her port. This may be the reason why the infection was working it’s way...
July 4th
Afton has been in and out of the hospital since her transplant surgery. Overall, she has been a good sport but is definitely developing a strong preference for mom and dad. Strangers can be stressful to her because she is never quite sure what they are going to do. When we are home a nurse comes every other day. This is usually hard for her to constantly be tampered with.
Afton’s liver...
May 2010
6 posts
Back & Forth
After a brief stay at home, Afton returned to the hospital because of an infection that had given her a high fever. Because her anti-rejection medications compromise her immune system, this isn’t a complete surprise. We brought her in and treatment was started in the form of antibiotics. At the same time they performed a biopsy on her liver and the infection was widespread in her liver.
...
1 tag
Home
Afton is home. All things considered, the length of time we spent at the hospital was less then we expected. Afton healed well and was in good spirits at the end of her stay. She loved the car ride home and enjoys her familiar surroundings.
For us this is really only the beginning, however. The next few days and weeks are crucial to determine the new liver’s ability to thrive. Given that...
Optimism
Afton continues to do well. Her liver function is completely normal. She has had a cold as well as a fever on and off. So, she is being treated with a variety of antibiotics to help clear up any illness or infections that she may have. This will probably be a constant battle because her immune system is very compromised. Believe it or not the hardest part about taking care of Afton right now...
Moving On
Afton has been much better the last few days. Two nights ago she was still struggling to sleep because of these uncontrollable shakes. Most of the drugs that were suspect to be causing this had been stopped over four days before that. So, we asked the doctors to give her a relaxer. We were worried about giving this because we didn’t want her to have an adverse reaction. However, Afton...
April 2010
4 posts
Pros and Cons
Afton has had a rough couple of days adjusting to or coming off of all her medicine. Three days ago when she was extubated she had uncontrolled jerky movements. At that time she was not conscious, so they did an EEG on her head to see if she was having a seizure. She was not. So they stopped all pain meds assuming that she was having an adverse reaction. After 24 hours she had still not...
Waiting
Afton has continued to respond well clinically from the procedure, even though there are problems with the liver that she got. Her lab results have been surprising. Her liver function numbers have trended much better then expected despite the known malfunction (a non-flowing hepatic artery).
This is a double-edged sword, because: [1] It means Afton’s health is currently maximized and the...
The Next Chapter
We have had quite the roller coaster the last few days, and unfortunately I think our ride is just beginning. We were fortunate enough to enjoy our first weekend away and after four days without Afton, we were both pretty excited to get home and squeeze those big cheeks. To our surprise as we were driving away from the Creamery, we got a call that a good liver was available for Afton. This was...
Afton Jane Fruit Photo Library →
Life Changing Decisions
We apologize for not keeping up with our blog. Our lives have just been so hectic. So, this update is meant to tell you everything that has and will be going on with Afton. First, we would like to say THANK YOU to everyone for supporting us. The amount of people who have reached out and tried to make our lives a bit easier is just amazing. We really appreciate everything.
Afton is now 5...
February 2009
2 posts
Happy (sometimes) and Growing
First we would like to apologize for taking so long to post another blog. Life has been so hectic, next thing we knew weeks had past. We have also updated Afton’s photo library so be sure to check it out.
The last month or so has had its ups and downs. The week after the surgery Afton got an infection in her belly button, which is where they did an incision. We brought her into the...
January 2009
2 posts
Post Surgery
We are happy to report that Afton had her surgery this week to insert a feeding tube. It was a long and hard week, but now that we are all home again things are going well. She seems much more happy without the NG tube (nose). She is still a little sore, but nothing that a little Tylenol cannot handle.
Afton is eating all of her food through the bottle, and is starting to have a good...
December 2008
8 posts
Post-Christmas
Afton has now been home two weeks and is doing great. We were able to travel a little for Christmas. Our visiting time was limited, but Afton was happy to meet many family members (especially great grandma L).
She has transitioned almost completely to bottle feeding, but still requires the tube for medicine. In the past she would drink around 1/2 ounce to one ounce per feeding and we would...
Day 25
Three weeks and 3 days later, Afton has come home. We are all doing well. Afton continues to work on her bottle feeding, but we are still giving her food and medicine through her NG tube (feeding tube through the nose). We have decided to do surgery to insert a G tube (feeding tube through the stomach). Since she is currently on a blood thinner for her clot, so we need to wait to have surgery...
Day 19
We just wanted to reiterate our appreciation to everyone for all of your positive thoughts.
Afton is stable and continuing to work on her bottle feeding. She definitely knows how to eat with a bottle but hates doing it. She either pretends like she is sleeping (playing possum) or cries when we try to get her to eat. The doctors believe that she is very uncomfortable when she swallows, so it...
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...
Day 11
Afton has had a number of changes over the last few days. She was extabated (removed from her breathing tube) two days ago. This process went well and she is doing a good job breathing on her own.
Her legs are still very swollen due to the dialysis catheter. This created a blood clot that goes from her knee up into her groin. They will continue to monitor this but her body needs to...
November 2008
3 posts
Day 5
Doctors continue to wean Afton off the breathing support, however this is something you don’t want to rush. They tell us it’s common for newborns on respitory systems to develop lazy tendancies when it comes to breathing. We need to teach Afton to breathe on her own again, but aren’t sure how long this process will take her. Like most newborns, she slept most of the day, but...
On Saturday, November 22nd in the evening hours, Bridget went into labor and was admitted into Methodist Hospital. Labor progressed smoothly through birth, and Afton Jane was born at 12:45pm the following day. She was 7 pounds - 7 ounces, 21 inches, and seemingly healthy and well. The initial exam with the staffed pediatrician went well. Even in the capacity of her limited knowledge of Bridget’s...