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)

Unstable levels

Today in clinic, Jilayne (our transplant coordinator) said that we had reached a milestone. This was the first day in clinic that I honestly did not have any pressing concerns about AnnaSophia. Her appointment went well, but when Jilayne called later that morning with her cyclosporine levels, I was shocked. Normally, her levels should fall somewhere between 175 and 225. Her levels this morning were 356. Thankfully, they're not toxic, but should still be lower.

We can't understand why her levels have been bouncing around so much this month. One theory is that the cyclosporine, although given orally, could have been adhering to the NG tube, therefore, causing lower levels. When the NG tube came out, it could have caused her levels to jump higher. As a precaution, AnnaSophia will have her levels checked again tomorrow morning.

I pray for wisdom for the transplant team in balancing her levels, and that AnnaSophia will continue to progress in her healing. Thank you Lord for your loving covering and protection over our little girl.

Mary

Field trip!

Today, AnnaSophia went on her first post-transplant field trip. Grandma and Grandpa came to visit today and thought that all of us could benefit from a morale-boosting adventure. Ethan and Emily always get excited to see where Grandpa's adventures will take us.

Today, we got to see The Brown Palace Hotel and the State Capitol building. The kids were amazed at the opulence and beauty of The Brown Palace. AnnaSophia was entertained by the crystal chandaliers. From there we walked over to the Capitol building. The kids enjoyed seeing the portraits of all of the Presidents, but the main attraction was climbing to the top of the dome. Emily always has concern for everyone and wasn't sure that I should carry AnnaSophia up the stairs, because she read a sign that suggested that anyone with a heart condition should not go to the top. After I explained that the sign was a warning for cardiac patients who would actually be climbing the stairs (not being carried up), she settled down and enjoyed the tour.

The wonderful thing about our adventure is that we were the only ones on the tour. There are definite benefits to outings in the middle of the week rather than on the weekends. I love homeschooling for many reasons, but this is a nice perk when you have a child with health concerns.

AnnaSophia will never remember her little outing, but it was certainly nice to turn a regular day into something special. I hope to be able to enjoy other outings as her health permits, and maybe, special days like today will help the time to pass more quickly for all of us.

God Bless,

Mary

Sleep strike!

AnnaSophia is definitely feeling so much better. Her clinic appointments have become a lot shorter as she whizzes through her tests. We are still playing with her cyclosporine levels, but this could take time to get them just right. She is also continuing to gain weight and is now up to 13 lbs. 8 oz. Chunk on, little AnnaSophia!

Evidence of her feeling better is that she is doing new things each day. Today, she started squealing with delight. She has found her voice, and her precious little squeals are heard throughout the day. We are also working on waving bye-bye. She thinks that this is a really fun game.

The down side to all of this, is that she does not want to sleep. She napped for 15 minutes today, and then finally collapsed at 6:30pm. She then woke up at 8:30pm ready to go again. She fell asleep for a little while, but then mostly she just wants me to hold her. So here we are at 11pm, not sleeping.

I try to remind myself of where we were just a few months ago. Steve and I were uncertain of her future, and when we held her, we held her tight and treasured every moment. I still treasure each moment with her, but I find it ironic that when things are good, I have responsibilities swirling around in my mind of what else I should be doing at that moment. There is always laundry to do, dishes to be washed and bathrooms to be cleaned. I pray that these things will always be less important than the precious children that God has entrusted to me. May they always feel that they are more important than the endless chores that can fill my day. Sometimes it's important for the germophobe mom to put down the rubber gloves and eco-friendly cleaner and just be mom.

AnnaSophia is asleep now, and this mom is going to get some rest.

God Bless,

Mary

Be still and know that I am God.

Psalm 46:10

Beef yuck--it's what's NOT for dinner

AnnaSophia has had a happy, busy weekend with family. All three of the children really look forward to Steve's weekend visits. AnnaSophia is actually really doing well without her NG tube. She still occasionally throws up her meds, but nothing like prior to her tube placement. This is fabulous progress, and we pray that she keeps it up.

One of our goals is to get AnnaSophia to put on weight. Part of the strategy involved meeting with a dietician who works specifically with the transplant team. Some new research has dieticians encouraging the introduction of beef to babies earlier rather than later. It has good amounts of iron and zinc which are needed for growth and development.

The first time I gave AnnaSophia beef in the hospital, she ate it very quickly without any problems. Little did I realize that the steroids, which made her very hungry, were mostly the reason why she ate her beef with vegetable dinner so well. Each time I have tried since then, she did not want to eat it. Honestly, AnnaSophia had so many things going on, I just figured she didn't want to eat because of other issues, like an oral aversion.

Now that AnnaSophia is eating really well, I thought we would try her beef dinner again. We have developed a real honest and trusting relationship with feedings. She now knows that when I feed her, good things come to her. Tonight, she opened her mouth wide, expecting a yummy dinner and received a mouthful of beef yuck. She held her mouth open for awhile, trying not to swallow. When she finally did swallow, a full body shudder quickly followed. After that AnnaSophia clamped her mouth shut so tightly a crowbar could not have opened it. I tried her dinner myself and it was awful. One thing it does not take a rocket scientist to figure out is that if it tastes bad to adults, it will taste bad to children.

We will now try to reestablish our trusting relationship with food. Beef yuck will not be on the menu anymore. I will try other real-food beef options in the future. Maybe our dog Squirt will be interested in the other jars of beef smash in the pantry. For AnnaSophia, its back to cereal, fruits and veggies.

God Bless,

Mary

1...2...3...There's no tubes in me!

Today, AnnaSophia pulled out her NG tube again. She is very thrilled with herself. This time, I was hoping that we might be able to avoid putting it back in. After a call to transplant, we decided to attempt giving her all of her meds orally. After giving her all of her meds tonight, she did not throw up! Yeah, Yeah! This was big success. If she can tolerate all of her meds without lots of vomiting, there is no more need for a feeding tube.

AnnaSophia has continued to put on a little weight with each visit to clinic, and yesterday weighed in at 13 lbs. 6 oz. Her echo still looks good, with no visible sign of a gradient in her left ventricle. Unfortunately, her platelets were a little low, and she is back on aspirin therapy. Right now, her current meds are Neoral and Cellcept (to keep her from rejecting), Verapamil (to thin her ventricle), Prevacid (to protect her little tummy), and aspirin. Hopefully, she will soon be weaned off of all of her medications.

She is definitely making steady progress. She has been very happy lately, and loves interacting with her big brother and sister. Ethan and Emily steal kisses all day long. Yesterday, Grammy and Paw-Paw brought our dog Squirt up for a visit. This was the first time AnnaSophia and I had seen our dog since June.

The dog lived up to her name and squirted all over the pavement when she saw me. AnnaSophia was facinated with her furry friend, and Ethan and Emily got to spend some quality time with Squirt. Thankfully, the weather was mild and we spent most of the day at the park. AnnaSophia LOVES being outside. She smiled and cooed the entire time, not wanting to nap for fear that she would miss something. Overall, the visit was wonderful for all of our morale.

Our target date to come home is November 3rd. This could change a little as we get closer, but for now, it gives us another blessing to look forward to. God has been so good to us through everything. Remembering all of His blessings gives the children and I comfort. Thank you for all continued prayers. They mean the world to us, and God is so very good.

Blessings,

Mary

Rejoice always, pray without ceasing, in everything give thanks: for this is the will of God in Christ Jesus for you.

1Thess. 5:16-18

Small and steady improvements

AnnaSophia had clinic on Tuesday, and the good news is that she gained some weight. She now weighs 13 lbs. 5 oz.! She finally is starting to gain and keep the weight on, despite a weekend full of diarrhea. Because everything was going through her so quickly, her cyclosporine levels were a little low. It is constantly a balancing act trying to keep her levels steady. She will need to remain on her Cellcept until September 17th.

This weekend was a tough weekend for AnnaSophia, due to teething issues. I do have to say that it is such a blessing to see her going through normal developmental baby things, like teething, rather than serious problems with her heart. I have to keep a watchful eye on her and know when to call the transplant team, but it needs to be balanced with enjoying her as a "normal" baby. As Jilayne reminded me, she is a baby who has been through extraordinary circumstances, but now has a normal heart inside of her that is functioning well. It is a delicate balance for me as her mom. This is where I rely on the Lord to help me to not be a crazy, obsessed mom. I want to be smart in protecting her and watching for unusual symptoms, but I want to be able to enjoy her also.

Ethan and Emily are certainly enjoying their baby sister, but they are also incredibly homesick. They miss our home and our dog. We talk often about why we are here in Denver and about what a miracle little AnnaSophia is. They enjoy hearing the stories of the miracles that the Lord has done in their little sister. They also look forward to Steve's visits on the weekends. This helps the time pass a little quicker. I can say with certainty that we will all have a big celebration when we are able to move back home.

Thank you for continued prayers. Also, thank you to the Bowman family for blessing us with groceries today. I cannot possibly express enough how much your kindness means to us.

God Bless,

Mary