Pick Line

Thatcher's pick line was placed this morning. Everything went fine. He was sedated in order to place the iv into a deeper vein. I'm waiting for him to wake up now. He hasn't gotten to eat since 430 this morning so he'll likely be hungry.

I got to speak with the doctor before the procedure. I asked if Thatcher has cmv and if this was considered a set back. She reassured me that this is actually expected this soon after transplant when the immune suppression is highest. They are treating him as if he has cmv even though there is only a small amount detected. He will have the line for 3 weeks - 2 weeks of the medication and 1 week just in case. They want to get 2 negative readings before removing the line. She even said this would not be something to prevent us from coming home, but I don't want to jinx anything!

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April 14th Clinic Update

We had a great clinic visit this morning. Thatcher gained almost a pound since Monday and is now almost 16 pounds. He had labs drawn, which they got in 1 stick :), and the doctors are very pleased with his progress. Dr. Mazariegos was there today and took out the remainder of Thatcher's staples, commenting that his incision looked very nice.

Like Vandy, we also have access to Thatcher's labs and vitals online so I usually see them before the doctors have a chance to call. I know only enough to know what is "good" or "bad" and normal range. We are of course still learning as we go along. All three of his "liver labs" looked good and his medicine levels were stable. They mentioned going home next month and the possibility that, depending on labs from Monday, we may only have clinic once next week! I was super excited...plus the sun is actually shining here.

While Thatcher is still doing well, the coordinator called a few minutes ago to say that after discussions with the infectious disease doctors, they want to place a pick line in Thatcher in the morning and begin a 2 week round of an anti-viral medication (Gancyclovir). He also had this while he was an inpatient to prevent/treat a virus called CMV.

I try to censor the amount of technical informaton I post, but as I have mentioned in the past, transplant is a balance between rejection and infection. Briefly, CMV (Cytomegalovirus) is a common viral infection most adults have been exposed too. It is not serious to most healthy people, however, it is of concern to people who are immunosuppressed. Thatcher is of course immunosuppressed and is actually more at risk for CMV because he received a CMV positive liver from me and shared my CMV positive blood in utero. (Thatcher's labs show some CMV antibodies although they do not know if he was exposed or if it's from me.) Since we are in that first 3 months post transplant window, they want to run this 2 week course of meds to prevent CMV.

I don't know that this is considered a setback...I would like to think it is not. However, I certainly felt deflated after getting off the phone. We will report to same day surgery at 6:30 in the morning to have the pick line placed in order to administer his meds from home/Ronald McDonald. At least we don't have to be inpatient I guess. They are really on top of things and simply do not want to risk him getting this virus.

This may be par for the course this first year so it is important to stay positive and not get discouraged (I have to tell myself). This is certainly a marathon, not a sprint. So please say a little prayer for Thatcher in the morning. Thatcher has had 1 other pick line, and I know getting it placed is painful.

I leave you with this self-portrait...

Me and My Man

Today was mine and Thatcher's first day without BJ. He flew out early this morning and arrived safely in Nashville around lunch. BJ and I were both a little apprehensive about him leaving, but we survived our first day here in PA, and I know BJ was glad to see Amelia and get a dose of home today! I pray for strength for our family until we're all together again.

A typical day for Thatch involves lots of bottles and diapers, meds at 8am and 8pm, playing on the floor, and several trips in the stroller around the hospital and cafeteria. (It's a little too cool and rainy to go outside right now). Thatcher gets lots of attention as we stroll around...he loves to look out :).

Strolling Around

Playing on the Floor

Thatcher has rested better today than usual and has been pretty happy. He is continuing to eat well including more baby food. He hasn't indicated any need for pain medicine for the first time.

The doctor removed half of Thatcher's staples at Monday's clinic. He gained several ounces as well. They are still working to regulate his medicine, which they check with his lab work, and have adjusted his medication several times already.

Thatcher's Incision - They replaced the staples with steri-strips

We have clinic again in the morning. We get labs drawn at 8am then meet with the doctor afterward. They will take the rest of his staples out, check his weight, and potentially adjust his medicine again based on lab work in order to get his liver levels right where they need to be.

Visitors

We had visitors this weekend! Our good friends, Katie and Toney, drove up from Tennessee. It was a wonderful dose of home and a much needed break from the monotony. I know I had been struggling with being homesick, missing Amelia, and just feeling secluded. Their visit was just what the doctor ordered, thanks guys! It was a real blessing.

We were also blessed with some great Pittsburgh Pirates tickets that were donated to the Ronald McDonald house in honor of organ donor awareness month in April. The seats were fantastic - 10 rows behind home plate, and they even came with dinner! I struggled with the decision to take Thatcher, but it was a great experience and worked out wonderfully. Things just seemed to fall into place.

Dinner before the Game

View of the Park from our Seats

BJ and I are so blessed to have such great friends and support system during this time. This and prayer and truly getting us through.

For me, one of the hardest parts has been being away from my daughter. I miss Amelia terribly, but I know she is happy and having a good time at home. We are blessed to have family that loves her so much taking such good care of her. It is hard not to be involved in her every day life. Since we've been in Pittsburgh, Amelia has flown on a plane, visited Pittsburgh, and Knoxville all for the first time. My parents took her with them to Knoxville to visit my new nephew Caleb who was born Thursday.

My parents and Amelia with Caleb - Congrats Adam & Jannette!!!

Thatcher is continuing to do better each day. He is eating more than he has ever eaten. It is a good sign that he is healing. He isn't napping much but is getting a little better through the night between feedings. He is still likely dealing with some discomfort. We go to clinic tomorrow and are anxious to see his weight and liver labs. I pray for continued good news.

Lunch Outside Today

Discharged

We were discharged from the hospital Tuesday April 5th and are now staying in Ronald McDonald. Even though the two are connected via a walkway, yesterday was the first day we have not been in the hospital in a couple of weeks...it was nice :). While it is not home, it is better being in our own space with a little more freedom. I am already home sick but am trying to focus on all the positives and how well Thatcher is doing.

Discharged!

Cleaning once we Got "Home"

We actually got out and about yesterday to pick up a few supplies and just take a break. It is slightly nerve wracking to be out with Thatcher. We are much more careful, wash and sanitize our hands constantly, and don't get him out of the stroller. I almost feel as if I have a newborn again. We have taken Thatcher home from the hospital more times than we would have liked, but at least we are getting to go home. Like most thing, it is going to take time to get used to as well as to heal.

Out and About

Thatcher is doing really well. He is eating like crazy so hopefully he'll start gaining some weight. He hasn't been sleeping very well. I think he is still sore and uncomfortable some, but he is generally in a better mood than before transplant. We took him to clinic for the first time this morning. He had labs (two sticks today :( unfortunately) where they will continue to monitor his liver labs and Prograf (his anti-rejection/immunosuppression medication) levels. The doctors will adjust his Prograf levels to find a suitable dose that prevents rejection while keeping infection at bay. This is a continuous process that will take time but hopefully get better the further from transplant we get. One day at a time.

Eating Some Cereal in the Hospital

Out with the Old...

We got the opportunity to see Thatcher's old liver today. WOW, it looked even worse than we had imagined. We got to compare it to a healthy liver.

Healthy Liver

Thatcher's Old Liver

Pretty nasty, huh?! Both livers have been cut for different reasons and Thatcher's had a big hole in it from being biopsied for the final diagnosis. The green color is from the bile trapped inside. It was slightly enlarged and much harder than a ahealthy liver should be. The healthy example wasn't exactly the right color as it had been preserved. A healthy liver is usually a little pinker. These are both children livers. We also got to see a larger liver, where we could see the different arteries and gallbladder more closely.

Underside of larger healthy liver - showing the arteries the surgeons had to reconnect

It was kind of sad to see. It made us realize how sick Thatcher really was. He had only had his liver for 7 months. Thank GOD they could fix him and that nasty thing is no longer inside his little body.

Recovering

Thatcher is continuing to heal...praise God. He looks so good and we have come so far from last weekend. He takes everything orally now. He is on pain medicine as needed and continues to eat more and more. We administer his daily meds at 8am and 8pm, which is much simpler than what we were used to. His labs and liver numbers continue to look good. We really could not ask for more. He lost some weight through surgery, but this is normal. I can't wait to fatten him up now!!

Thatcher is almost back to his old self it seems. He is more and more playful and we work on sitting him up several times a day. He is still sore but doing better with this also. The doctors have even talked about releasing us to Ronald McDonald sometime next week!

In preparation for discharge, BJ and I have also been going through daily teaching/lessons on life after transplant. There hasn't been any completely new information. It is overwhelming and can cause me to worry about the future sometimes, but it is just alot of information at once. I still pray and hope for a great future for Thatcher and our family. Thatcher will continue to take medicine, but it should drop to a very small amount sooner than later. It also seems to be something that will get better the further out from transplant we get. It will always have to be managed and we will be more concious of germs than before. I'm sure there will be rejection episodes, but our coordinator, who teaches our class, says it is even less to manage than what many diabetic kids deal with (a disease more people are familiar with I think).

Amelia, mom, and my sister left today. We hated to see them leave, but it is a little less hectic without Amelia running around :). We had a wonderful visit!

Tickle Time!

Amelia dressing up like one of the nurses

Thanks to everyone who have sent us cards and care packages. It is such a nice dose of home. Thanks for everyone still praying, I know it is getting us through one day at a time.