AnnaSophia's trip to the E.R.

Today, AnnaSophia made an unscheduled trip back to Children's Hospital. She was playing with her big brother and sister, and got a mysterious cut under her nose. I heard all three of the children screaming at the top of their lungs. When I came running, I saw that AnnaSophia's face was bleeding. After looking at her closely, I decided to have her checked at the E.R. to make sure that she did not need stitches. I have to say that the kids are great during emergencies, and we were out the door in a matter of seconds. Ethan and Emily just might have a future as firefighters, as they could be in their boots and on their way to a fire in the shortest time ever.

When we arrived at Children's, it was so nice to see a familiar and friendly face. Cassandra, a family friend and E.R. tech, saw that we came into the E.R. and readily scooped us up to take care of us. Ethan and Emily had not eaten snack or lunch, and once AnnaSophia was settled, she treated the big kids to lunch. Thank you Cassandra for making even and unplanned trip to the hospital a good experience for Ethan and Emily.

After numbing AnnaSophia's injury and washing it thoroughly, the doctors realized that the cut was not deep enough for sutures. Originally, they were thinking that maybe they might glue her injury together, but there was concern that because it was so close to her nostrils, she might sniff the glue straight into her nose--not good. I was really glad that we were able to avoid stitches, because that would have required sedation. As you know, she does not have a good track record with sedation, so praise God that it was a superficial wound!

After we got back to the apartment, we realized that the culprit responsible for AnnaSophia's injury was actually a cast of a Phytosaur tooth that the kids got at the Denver Museum of Nature and Science yesterday. Nobody knows how the baby got the tooth, but it was on the floor broken next to where AnnaSophia was sitting. Because she is so mobile, today has been a lesson for all of us on watching AnnaSophia closely, and definitely making sure she does not play with dinosaur fossils. Who knows? Maybe she will be an archeologist one day. Needless to say, I have a headache, and I'm sure, another gray hair.

Mary

Countdown to home

AnnaSophia was so charming in clinic on Monday. She watched and "tried to help" with her blood draw from her picc line. We got her blood pressure the first time, which is unusual, and she smiled and charmed her way through the rest of her intake. After throwing up her meds and an EKG, she fell asleep and allowed her echo tech to get perfect ultrasound pictures of her new heart. After examining AnnaSophia, Jilayne removed her picc line. Praise God for success in even the little things! Every thing looked really good, including her. She is just so active, and I told Steve that he needed to make sure the house was sufficiently child-proofed before we came home, because she is feeling so well that she will be into everything.

Our target date to come home was November 3rd, but Jilayne told us Monday that we could go home after Thursday's clinic. Steve is coming up Friday, and we officially move home Saturday, November 1st. God is so good! It seemed like at times I would never see this day. I often tried not to think about when we would go home. I just lived in the moment, not thinking about more than one day ahead. AnnaSophia's health often changed dramatically from one week to the next, and I have made it through five long months purely by the strength that the Lord has given me. This journey has been a rollercoaster of emotions, but through it all, I have seen the Lord do mighty and amazing things. I am so thankful for all that the Lord has done, and I do not take one thing for granted. Life is but a vapor, and I try to live celebrating each moment. It is hard being the parent of a heart transplant child to not constantly feel like you are waiting for the other shoe to drop, but the one sure thing that gets me through is the fact that the Lord has walked each step of this journey with our family.

I also would like to extend a very humble thank you to the countless people who have prayed for our little angel and helped our family with financial gifts. Steve and I have felt so blessed and touched by the outpouring of support for our family. Your prayers have been more precious than gold. Words completely fail me regarding the amazing fundraisers and generosity of our community. If anyone knows me, this is really something, as I have a tendency to talk and talk and...well, you get the picture if you've read the blog. I have been completely humbled by this experience, and cannot possibly express adequately the thanks that is in my heart. May God bless you all and keep you in His holy care.

Mary

Look out world, here I come!

Thursday night, AnnaSophia started crawling! At first, she just scooted her little bottom up to her arms, but now she is actually crawling. She is such a little miracle, and it is such a joy to see her doing normal baby things. She has been a little behind, due to her cardiac issues, but is catching up quickly.

Her health continues to progress, and her CMV PCR numbers are coming down. They are at 1000, from 171,000, and she seems to be responding to the oral ganciclovir now. We had hoped that her picc line could come out on Friday, but Jilayne is being cautious and waiting till Monday. If she gets her line out on Monday, we will celebrate by giving her a little bubble bath. I know that she can't wait to splash in the bubbly water.

On Friday, Ethan graduated from his Neuropsych day program at Children's. We are so proud of him! In addition to learning new coping skills, he will continue with Occupational Therapy. He is doing so much better and is clearly a happier little guy. We definitely have our work cut out for us as far as scheduling, therapies and school for Ethan, but God continues to give us the strength needed for the challenges and changes ahead. Steve and I are so thankful for the help he received, and we all look forward to the brightest future possible for our boy.

Thank you for continued prayers.

Mary

A weekend furlough

Thursday's clinic was busy with an EKG and exam. AnnaSophia was fitted with a 24 hour holter monitor, and we should have the results by Tuesday. Her cyclosporine levels have still been running high (in the 300's). Jilayne surprised us by offering for us to go home for the weekend.

This was the first time that AnnaSophia and I had been home in 5 months. After a busy Friday, we finally made it home at 7:45pm. It was a very surreal experience. It was like seeing my home for the first time. I had memories of what home looked like, but I was amazed at how much I actually forgot about home. It seemed like a lifetime ago that I had lived there.

AnnaSophia actually seemed a little scared, because she did not know where we were. By Saturday though, she was happy as a little clam. She really enjoyed having the entire family together, and she especially liked the dog, Squirt.

Our time together passed much too quickly, and before we knew it, we were on our way back up to Denver. The sad thing was that going back to the apartment felt more comfortable that going back to our "real" home. I know that if I am feeling this way, it must be really hard for the kids.

We have fifteen days left in Denver, then we will be home for good, hopefully. Each day, the kids and I count the days left. Even though we will be coming to Denver once a week for the next year, I am praying that we will feel more settled after we go home. I think that it will be good for things to be back to the old kind of normal.

Blessings,

Mary

For everything there is a season, a time for every activity under heaven. A time to cry and a time to laugh. A time to grieve and a time to dance.

Ecclesiastes 3:1,4

And I thought I was busy before...

This week has been an exhausting whirlwind. I was able to nap for a little while before dinner, which gave me a little more energy to get through tonight. AnnaSophia is still continuing with her clinic schedule on Mondays and Thursdays, and Ethan is currently going to his Neuropsychiatric Day Program for Autism.

AnnaSophia is still getting her infusions twice a day for the CMV. So far she is a little champ and tolerating it well. She has bad days where she is quite nauseous, and then has good days, like today. We are concerned that she may be having some SVT (supraventricular tachycardia). The other night, I noticed that she was breathing very quickly as she slept. When I put my hand on her chest, her little heart was beating faster than normal. I listened with my stethoscope and as best I could count, her heart rate was around 180. The theory is that maybe the picc line is irritating her AV node in her right atrium. Tomorrow, in addition to the echo and EKG, she will also be put on a 24 hour Holter monitor. I pray that her new little heart is fine, and that it was just a fluke. We will also be checking her CMV PCR to see if her levels have come down since her IV Ganciclovir.

In addition to taking care of AnnaSophia, I have been at Ethan's day program a lot. I have parent meetings with the staff everyday, except when AnnaSophia and I are at the Cardiac Clinic. I have scheduled observation times and team meetings. Steve has been teleconferencing in on the meetings. I cannot even begin to tell how much I love my boy. He really struggles in some areas, but is so gifted in other areas. I see progress being made, and I am so thankful to have such a wonderful resource so close. God certainly knew what we needed and provided graciously.

Just like with AnnaSophia, God has a plan for Ethan and Emily too. I am so thankful that we are getting our family the help that we need. God is so good.

Mary
http://en.wikipedia.org/wiki/Supraventricular_tachycardia

Tonight's update

Mary is pooped, so she asked me to take over the blog for a while. She's obviously deserving of the rest as she manages AnnaSophia's needs and Ethan's daily clinic appointments. Just one of those challenges seem daunting to me, so I can't imagine managing both of them. Mary is doing a great job!

So far, AnnaSophia is handling the infusions for CMV pretty well. There is hope she could be done by Thursday! Please pray that the Gancyclovir infusions wipe out the CMV this week. The Gancyclovir can have side effects, so the sooner she can get off of it the better.

As noted by Mary a post ago, AnnaSophia's cyclosporine levels have been very high. We were hoping to get some new results today, but there was a logistical error at the hospital and we did not receive the results as expected. Hopefully, we can get some updated results soon.

Ethan seems to be doing well in his NeuroPsych Program for Asperger's Syndrome. Please continue to pray for Ethan, and that this program helps him. The staff seems very capable, but the program requires a lot of Mary. She has to visit with staff twice tomorrow, and there's another meeting on Wednesday. I'll conference in for that one.

As Mary's husband, I ask for prayers that she gets the rest she needs and strength to meet each day's challenges.

Blessings,
Steve

Balancing act

Today was a balancing act between two different clinics for two different children. AnnaSophia had her cardiac clinic today, and Ethan had his first day in the NeuroPsych Day Program for Asperger's Syndrome. I didn't realize what a miracle it was for Ethan to get into this program until the secretary told me today that it is normally a six month wait to be seen. She said that the Lord is definitely with us. Ethan will be seen Monday through Friday from 8:30-2:30 until things improve. He is very excited to be getting the help that he has wanted for a long time, as are Steve and I.

AnnaSophia's clinic appointment was first. Just when I thought that I had her asleep for her echo, she woke up screaming. I really don't want to have to sedate her for an echo. Today we got her to cooperate by letting her sit up during the exam. Her echo looked good, but her red blood cell count was down, most likely due to the IV Gancyclovir. We may need to do some special injections to help her count. If that does not work, she may be looking at a blood transfusion. Her cyclosporine levels also came back very high again. No one really seems to know why, but there is concern that this could be hard on her kidneys.

I feel like my head is swimming at times, attempting to take everything in and make some order out of it all. I don't even have time for my emotions to fully play out. It seems like I quickly move from one crisis to another. The one thing I am sure of is that the Lord is walking with me every step of the way.

Mary

But joyful are those who have the God of Israel as their helper, whose hope is in the Lord their God.

Psalm 146:5

Growing up

AnnaSophia cut her first tooth today! It is the cutest--and sharpest--little thing you ever saw. It seemed to come quietly overnight, and I noticed it later today. It is so neat to see normal little things, like cutting a tooth, happening with her. We celebrate the normal developmental milestones!

She also has learned how to wave bye-bye. She says bye-bye and waves all day. She has just captured our hearts so much. She enjoys her brother and sister as much as they enjoy her. Emily was dancing for AnnaSophia today, and she was just laughing and bobbing her little head.

It's amazing to me how she seems so happy in the midst of big medical things. We started her infusions of Gancyclovir yesterday. I was told that the infusions could cause nausea, vomiting, aching, flu-like symptoms, and just generally feeling crummy. Last night, the only symptom that made me think that she was not feeling normal was that she was up for a few hours in the middle of the night. That is really not her, because she normally sleeps well. Earlier this afternoon, I also noticed that she was swelling. After speaking with Jilayne (transplant), she said that we will look for extra fluid on her echo tomorrow. If she needs it, we will start Lasix to help draw it off. Giving her a little tylenol also seemed to help her feel better.

The medication that she is being infused with is a little scary. The home health nurse came yesterday to do some teaching with me. Even though it's not a chemotherapy drug, it comes labeled in a "chemotherapy" bag, because it is so caustic. I have to use special precautions to protect all of us while infusing, and there is a special protocol to dispose of the waste. I just hope that this medication helps to bring her numbers down, so that she can beat this virus.

Tonight, I pray that all of us will get rest. I have been really dragging all day, and I just hope that we can feel rejuvenated to face a really busy day tomorrow.

God bless,

Mary

Success!!!

AnnaSophia finally got her picc line placed today. Praise God for success! These kinds of things are never easy for her. Her left arm proved to be a problem today, and one of the techs was wondering if she had some type of vessel abnormality. After a half hour he came out to tell me that they were still working on things, and had accidentally gone into an artery. About 20 minutes later the radiologist told me that they were successful in her other arm. I think that I will now refer to her right arm as her official "picc line arm".

She unfortunately has had some issues with vomiting today. CMV has attacked her little digestive system giving her some bad belly aches. She doesn't want to eat anything other than breastmilk, but thankfully, it's the best food for her, and she is still continuing to gain weight on just mother's milk.

Tomorrow morning, she will get her next dose of IV Gangciclovir. I pray that this will bring her CMV levels down. I also found out today that her Cyclosporine levels were really high on Thursday (405). Her therapeutic levels are supposed to be between 175 and 225. Obviously, this has me concerned. I pray that her levels will stabalize, and that she will start to feel better soon. Thank you for all you who have been faithful to pray for our little girl. We appreciate it more than you can know.

Blessings,

Mary

AnnaSophia and special thanks

Special thanks

I've been remiss in not mentioning this sooner, but we want to extend our sincere gratitude and thanks to our church, Grace Community Church, The State Bank of Falcon, and the generous people of Falcon/Peyton. All have gone above and beyond to bless our family with donations and fundraisers. We are humbled and forever grateful for the generous outpouring of support they've given us.

We could not have made it this far if it were not for the generosities of others. We will never, ever forget that! We are equally grateful to the wonderful employees of Colorado Springs Utilities who continue to help us with rent, and the amazing folks at Sport Clips on Powers Boulevard and Smoothie King in Briargate.

AnnaSophia has had a pretty good weekend, all things considered. She still smiles, but it takes a little more effort to get her to give us a smile or a laugh. She has been through a lot, but continues to fight with the Lord's help. Please pray for her as the doctors attempt another pic line tomorrow.

Meanwhile, we bought her a new activity center, which she got to try out today. I'm still figuring out our digital camera, so the out-of-focus picture above doesn't do its capabilities justice. Still, we wanted to share. I've also included another picture of AnnaSophia taken a week or so ago. Isn't she beautiful? I've recently told a couple of friends that when I look into her eyes it's like reading the greatest novel ever written.

Blessings,
Steve

No go on pic line--The Sequel

After preparing for another attempt at a pic line for AnnaSophia, there was no success today. Actually, it was a blessing, as they did not even get so far as sedating her. I was really praying that the Lord would preside over her procedure and give us clear direction with the sedation. The nurse who was going to administer the Ketamine did not feel comfortable with doing so on a baby with her history. After the radiology team conferred, the consensus was that she needed cardiac anesthesia, not Ketamine.

The plan is to attempt the insertion of the pic line again on Monday. In the mean time, she received an IV infusion of Gangcyclovir on Friday. Saturday and Sunday, she will take the oral Valgancyclovir until the pic line is in.

Poor little AnnaSophia is just done with hospitals and hospital people right now. She has been fussy because she doesn't feel well. Two days of hours of no food before procedures has also not helped her mood. To Steve's dismay, she doesn't even want to go to her daddy. I am hoping we can have a mellow weekend with lots of hugs and snuggles to help her feel better, and I pray that all goes well on Monday.

Mary

No go on pic line

The pic line nurse was not able to get AnnaSophia's line in today. The problem was not her veins, but rather that they could not get her properly sedated. The nurse attempted to thread the catheter up her arm several times, but the two drugs used on AnnaSophia did not work.

Friday, the attempt will be made again in Interventional Radiology. A radiologist will place the line, while a nurse will administer a different drug for sedation called Ketamine. I am a little nervous about tomorrow's procedure, because the drug they are choosing to use is not a drug usually used on transplant patients. Dr. Pietra said that AnnaSophia's physiology is such that she should do well with Ketamine. I know that he is the expert, but something just doesn't sit right with me with this one.

I am praying for the Lord's wisdom to be upon the doctors. I am praying that the Lord will cover AnnaSophia with His holy and mighty protection, and that His angels will be present in that room. I pray that she will not have to be tortured through her procedure, but that she will be comfortable as they make this next attempt.

Mary

CMV IVIG finished

Our morning started out early as Ethan, AnnaSophia and I arrived at the hospital for AnnaSophia's infusion. She really was not feeling well today. She was very cranky and did not smile the entire time we were at the hospital. This is unusual for our smiley little girl. It is an indicator that she is not doing well. She also has been pinching me, especially when she is nursing, which she has not done since she was on the steroids. Clearly, she just feels yucky.

She tolerated the infusion well. Other than being a little hypotensive, she did great. I think that she also started feeling better later in the day. Our hope is that within a couple of days, the IVIG will work its magic and make her feel lots better.

The nurses left her IV in from her infusion to help with the pic line tomorrow. If they need it, it's there. If not, they can remove it then. Tomorrow, our day will start early with clinic, and then we will head over to the pre/post unit for her pic line placement. I pray that the Lord will guide their hands, and that the pic line will be perfect.

We do not know how long she will have the line in. The doctor said that AnnaSophia will let them know when it's ready to come out. When her levels come down, the pic line comes out. I did hear today that an older transplant patient who had CMV reported that even after his levels were zero, he still just did not feel right. AnnaSophia really does not feel well right now, but I am hopeful that the Lord will restore her health, and that she will be our bubbly, smiley little angel again soon.

Mary