CMV worse

I recently received a call today from Jilayne, our transplant coordinator, regarding AnnaSophia's CMV levels, which were run early this morning. The bottom line was that she was worse--much worse. Last week her levels were 62,835. Today, her levels were 171,375. She has gone from high to severe in one week. The plan is to act immediately in battling this CMV infection. Tomorrow morning, AnnaSophia will go into the infusion clinic on the oncology floor for a 6 hour infusion of CMV IVIG. She has had IVIG before for rejection, but the one for CMV is apparently tougher on children and more likely to cause reactions.

In addition to the IVIG, AnnaSophia will go to the pre/post unit of the cath lab Thursday morning after clinic for a pic line placement. This will enable us to give her the Valgancyclovir (antiviral) intravenously. She will receive Valgancyclovir 2 or 3 times a day. At this time, we do not know how long she will have the pic line for. The doctors want her levels to drop substantially before removing the line, but as of today, no one really is talking numbers.

I pray that the Lord will go before us and guide the hands of the nurses placing the IV tomorrow. I pray that the Lord will help AnnaSophia to tolerate the IVIG without serious complications. I pray also that the Lord will guide the pic line team on Thursday, and that they would be able to get the pic line in without trouble. Lord, protect little AnnaSophia from the serious complications of CMV. May your wisdom be upon the doctors and nurses and your comforting presence felt by us all.

Mary

My soul finds rest in God alone;
my salvation comes from him.
He alone is my rock and my salvation;
he is my fortress, I will never be shaken.

Psalm 62: 1-2

The cries heard 'round the hospital

Today in clinic, AnnaSophia had decided that she was not in the mood for an echo. She protested and screamed so loudly that she was heard throughout clinic. She worked herself into such a tizzy that she even threw up. No matter how much I explain to her that this is an important test, she wants no part of it. Cartoons and silly adults are of no interest to her as a distraction either. The doctor needs good pictures of her heart, so the recommendation today was to start sedating her for echos. Because I don't want her sedated any more than neccessary, I was able to convince them to try doing her echos when she falls asleep after 9am. After she finishes her morning meds, she gets really tuckered out and takes a little nap. This morning, like clock work, she fell asleep after 9am, and we were able to get really good echo pictures. The doctor was happy with the results, and the team decided to work with us in scheduling her echos after she falls asleep.

After a tough morning in clinic, we had to head back down to the lab to have another CMV level drawn. The plan is to check her levels to see if the antiviral (Valgancyclovir) is helping. If there has been no change or if the levels are higher, she will need a course of CMV IVIG to help her battle this viral infection. The petechiae is getting worse by the day and is now covering her entire body. Her little face looks sunburned from all of the little broken capillaries. She spent the weekend enduring diarrhea and vomiting. Maybe part of the reason she had such a hard time in clinic is that she just didn't feel well.

Ethan, AnnaSophia and I were all worn out by the time we got home today. Just walking away from her set her off yelling and screaming, so we decided to just spend the rest of the day resting and cuddling. By dinner time she was a different baby, and we all felt better after getting some much needed rest. Tomorrow, we will receive the results of the CMV levels. My prayer is that she will have shown some improvement so that she can avoid an IV, but the Lord knows what is best. I pray that He will give His divine wisdom to our transplant coordinator in how to proceed with her care. I pray for rest and peace for all of us and continued healing for little AnnaSophia.

God Bless,

Mary

CMV Positive

AnnaSophia had clinic on Monday, and as I suspected, had not gained weight in a week. Her echo and EKG looked good, all of her vitals looked good, but the petechiae had continued to spread. She also has continued to have loose stools and occasionally vomit. Today, I received the results of her CMV and she is positive for the viral infection. Starting tomorrow, she will restart the antiviral drug Valgancyclovir. She will be on this drug for at least six weeks, but could be on it for as long as a year depending on how the viral infection responds to the treatment. If the oral medication does not seem to bring her numbers down (her copies were 62,ooo--a significant number), then the plan would be to start IV medication. I pray that the CMV will not cause major damage to her little body or her new heart. Complications as a result of this are not unusual.

In addition to this news, Ethan has been sick all day with a stomach virus. Thankfully, he is feeling better tonight, but I pray that AnnaSophia does not get what he had in addition to the CMV. I have kept him isolated from the rest of us all day and have disinfected everything as well as I can possibly can. Once he started feeling a little better, he actually liked having the day off from school to read and watch movies.

There is one thing I do know, and that is that God is in control. I have felt as if God has been nudging me that something was wrong. I know that transplant does not want me to stress about her health, but when something with AnnaSophia is not right, her symptoms are very subtle. Even when she doesn't feel well, she still plays and smiles and is really sweet. It takes a lot for her to not be her sweet little self. Even the petechiae is very subtle and one really has to look hard to see it. I just thank the Lord that He helped me to be very intune to her and her health. I pray that this viral infection will resolve quickly and without complications, and that the rest of us can stay healthy.

Mary

http://www.viropharma.com/Pipeline/Camvia/CMV%20Disease%20Overview.aspx

Sunday update

Thank you friends and family who have graciously kept us in your prayers. Although AnnaSophia's cyclosporine levels were stable as of last clinic day, it has been a hard week. She was doing really well until I noticed that she was developing petechiae on her face. I thought that it might have been due to her crying earlier in the day, but by the next day, she had it very lightly on her legs too. I called transplant and they have ordered another CMV test for tomorrow. Sometimes a CMV infection can cause petechiae in transplant children. She also has not been wanting to eat very well the last couple of days. She did not gain any weight as of Thursday, and I would be surprised if she has gained anything from Thursday to Monday.

I have struggled with becoming very weary. I have had a hard week with Ethan also. We have had him seen by a neurologist at Children's, and have been working to get him into the Child Development Unit and NeuroPsych. Ethan is in the process of being diagnosed with Asperger's Syndrome. All of the turmoil with AnnaSophia's health challenges have rocked his little world. He has meltdowns several times a day, and I have been working diligently to help him through these and keep our home predictable and stable. Anyone who knows our family well, knows that he has many food allergies. Out of desperation, I have recently taken him off of gluten in hopes that it will help with the tantrums. This is not an easy feat, but if we can see some calmness as a result, it will be worth it.

All of my children are precious little gifts from the Lord. Each one is unique according to God's design. I just pray that the Lord will give me the knowledge and patience to meet each of their individual needs according to His will.

Mary

Let us not become weary of doing good, for at the proper time we will reap a harvest if we do not give up.

Galatians 6:9

http://en.wikipedia.org/wiki/Petechia

My wife

For those of you faithfully following this blog and AnnaSophia's amazing story of strength, I have been remiss in not recognizing where she draws this strength from: our Lord and the mom He has blessed AnnaSophia with.

Mary has been through a lot, more than I could handle, but she has remained strong through everything. It was Mary who was strong when our little girl almost died after transplant surgery, while I was nearly passed out in her arms.

Mary is not only caring for AnnaSophia, but she's also looking after and teaching our other two children. Ethan, our 10 year old, is a very special boy. As his father, I will never forget how strong he was as a baby as he went through hospital stay after hospital stay, and ultimately went through surgery to correct severe reflux at 7 months of age. His smile lit up rooms, no matter what he was going through. We love him SO much, but he's incredibly demanding for reasons I will not go into here. I only ask that you pray for Ethan; that he would rediscover peace and the joy of being a boy with a Savior who loves him. Ethan is a sweet boy and I love him more than words can say.

I humbly ask that you would continue to rally around Mary and that you would pray for her as she cares for our children. I pray that she would receive much-needed rest, a moment or two for herself, and that her and the children stay healthy and safe while in Denver.

I was recently reading about another special boy who recently had a second heart transplant and who lives near us. It reminded me of the long road we have ahead of us as a family and made me realize how I've fallen short through this journey. I am a broken man and often weak, but Mary is strong. Mary's strength reminds me that only through Jesus can we stand up and fight another day, for through Him, all things are possible and only He can fix a broken man such as myself. I cannot imagine how lost I'd be without faith in Him and without the family He has blessed me with.

Last weekend, I passed by AnnaSophia as she was sleeping and I said to myself, "I'm so in love with her." The Lord gave me this amazing little girl -- this gift -- to open my eyes to His unending grace and the strength of a wife like mine.

Steve

Monday's clinic

AnnaSophia had a tough Sunday. She was tired and fussy and threw up before her evening meds. I was hoping that Monday, she would be a whole new baby. Unfortunately, she cried through her labs, intake, echo and EKG. She was just out of sorts. The good news is that her echo is still improving. The goal is to keep her on her Verapamil (for the thickness of the ventricle) until she outgrows her dosage. This could be a year or so away. She will also be kept on her Cellcept until right before she goes home.

Her cyclosporine levels were still high today, running in the 300's again. The thought is that when her NG tube came out, it affected her levels. The cyclosporine is absorbed through the mouth and mucousal membranes. It also adheres to plastic, which is why I don't give her a plastic toy or pacifier for a half hour after she is dosed. The theory is that when she had her tube in, some of the cyclosporine was adhering to her tube. Now that the tube is gone, all of the cyclo is being absorbed, thus requiring that we adjust her dosage now.

I really hope that this post makes sense, because I am so tired that the computer screen keeps blurring. I also hope that there are no typos. If there are, I apologize and hope that my next post makes more sense. Now that the brood is asleep, my pillow is calling.

Goodnight and God Bless,

Mary

Our first Cardiac Kids Conference

Saturday, AnnaSophia, Steve and I went to our first Cardiac Kids Conference. There was a geneticist, a parent advocate, and two of AnnaSophia's doctors speaking. There was a lot of helpful information for us, including how we can be the most prepared and organized with all of our little angel's medical information. Dr. Shelley Myamoto, the heart failure specialist, also spoke about when to re-transplant. This was a really important talk to us, as we know that AnnaSophia's heart will not last forever.

On the one hand, the conference was very sobering as we realize how critical all of these children are or have been at some point in their lives. On the other hand, we are so grateful to all of the doctors and nurses who have made it possible for us to be able to have every extra minute we have with our daughter. They are truly performing miracles daily just so parents can love on their children a little longer. There are a lot of children with congenital heart defects that do very well, but there are a lot, like AnnaSophia, that are not cured.

This is an issue near and dear to my heart, as her insurance will not last forever. She will be meeting her lifetime cap sooner rather than later. Medicare and Medicaid consider children who have received heart transplants to be cured--regardless of the lifetime of meds they have to take, the rejections, the possible cancers related to transplants and possible death. Through the Cardiac Kids group, I was told about an insurance option for uninsurable people in Colorado called Cover Colorado. It is a separate insurance that we could buy for just AnnaSophia. I will continue to look into this, and hopefully, it will solve our future coverage issues for our dear girl.

Just a quick update for our faithful prayer warriors. I saw Christian Sorenson and his mom Deanna on Friday. He is tolerating the chemo well, and was full of smiles. The staff is amazed that he doesn't feel sicker. In four weeks, the doctors will do further tests to see if the tumors are responding to the treatments. This brave little six year old doesn't seem worried at all, and has told people that Jesus is taking care of him. No wonder Jesus said to come to Him with the faith of a child. Kids are so great.

Then Jesus called for the children and said to the disciples, “Let the children come to me. Don’t stop them! For the Kingdom of God belongs to those who are like these children. I tell you the truth, anyone who doesn’t receive the Kingdom of God like a child will never enter it.”

Luke 18:16-17 (NLT)