There's No Place Like Home

Picture is of Liam after his bath tonight- he weighed in today at 11 lbs, 9 oz and is back to the 50% growth percentile!

We have been home three weeks and its been a whirlwind. My little brother Ryan met me at CHOP and drove home with Liam and I- he was officially on Gloworm duty for the ride..poor Uncle Ryan. Alex and I were definitely overwhelmed the first few days- there were 15 doses of medicine a day plus 2 shots we had to give him. And the medicines couldn't be given together so our first few days we gave medicine from 8am-noon, then 6pm to 2am. Yawn. It sucked for Liam, we had to wake him up in the middle of the night, give him a direutic and then the little guy would be upset with a wet diaper an hour or two later. No one was sleeping well, including Ike our dog, who has become very protective of his little brother.

After we settled in, things became more bearable. We spent most of the first day home at the doctor's office and then the hospital getting bloodwork drawn. Later, we saw our cardiologist locally. The last few weeks have had ups and downs- medicines have been stopped and started again; one ER visit at 2am on a Monday morning almost became a huge setback and ended up being nothing. Mostly, its been a lot of time in a doctor's office (3-4 times a week) or having a home health nurse visiting to listen to his lungs. The biggest concern for his recovery is making sure no fluid comes back to his lungs. So far, he has done great in that area.

On March 19, we went back to Children's Hospital for his follow up with cardiology and a few other specialities which will follow him. We got another all clear and were able to spend some time seeing the friends we made while we were there. Everyone's kids seem to be doing well which was great to hear. One family was hitting a lot of complications and I would ask all reading this to say a quick prayer for Luke. He and Liam shared a pod area when Liam began going through his major set backs, and his parents were supportive shoulders for us to cry on.

It was a great trip, especially because his doctors who saw him were surprised by how good he looked. We were able to visit and meet new family members that weekend at my Mom's house, Sean and Tommy, Julie and the boys, and Aunt Joan, Uncle Harvey, Carol Ann and John and then at Jeanette's baby shower, we met Cara, Aunt Joan, Craig, Jeanette, Rachel and Nani. Great trip to NJ.

While it was great for him to meet everyone, we stll have to be very careful with him. During his drainage issues, his thymus gland was effected. This gland produces specific cells which fights infections- opportunistic infections (rare ones we all fight but because his defense is down, a common cold would become pneumonia in a short amount of time) So, he is now considered a low immune deficient child. Until those levels get higher, he is on a preventive medicine to fight infections. If he happens to have a fever, we need to rush him to the ER so they can make sure that it isn't anything serious. Luckily, he has shown no signs of this so far but we are also still keeping him very much a bubble boy. If we do go out, he stays in his stroller or only held by us or a close family member after using hand sanitizer. Its just the smart thing to do, especially since its still flu season.

We are finally able to breathe a little bit and enjoy the small things- I took him to his first Gymboree class this week and he did great the first 30 minutes, laughing and playing. His therapist has been by a few times and he is doing pretty well despite having laid on his back for 6 weeks and unable to move. Liam is beginning to hold his neck up for longer periods of time and starting to roll a little bit. In fact, he is pretty strong compared to where he should be.

I'm looking forward to a quick and hand sanitizer filled trip to the Easter Bunny in the next week. We will post that picture soon. I am working on a Liam hospital online photo journal and will share that when its done. There were quite a few days where we didn't post, pictures or updates, and that was simply because we thought we were going to lose him. Looking at the pictures, its amazing we didn't. He is resilient and joins a ton of other babies who fought back. And we couldn't be prouder.

Power of Prayer and Faith

I met a number of families over the last two months that have meant the world to me- having someone to talk to and understand what you were doing through was the best support anyone could ask for. A few of those families still have surgeries they are facing and long term care for serious conditions. I would ask any of our friends and family to continue to pray for these amazing kids. Here are a few we keep in our daily thoughts and prayers:

R, 2 1/2, waiting for heart transplant, has only lived at CHOP since birth and is the best spirited little girl I have ever met. I can't wait to go visit her soon.
K, about 6, also waiting for heart transplant and R's "big brother".
M, 1 month, discharged before us but waiting for her heart surgery. Her mom and dad have been awesome to us and I'm so happy we still talk.
J, 10 months, has the best parents in the world and is facing a tough and unknown future after having one of the most rare diagonis. We miss the friendship and constantly think of you guys.
J, 2 months, had her second of third surgeries today and has the most beautiful eyes you've ever seen
W, 3 months, surgery on the 18th and another surgery later this summer, you are going to do great little man!
J, 14 years old, just had a heart transplant and is getting used to his new heart. His mom has an amazing strength.

CCU Stay

Its been some time and I apologize- CCU really allows parents to be parents again. We can take him for walks, do all feeds, diapers. Liam and I went to music class and he stared and cooed at all the older kids. It was adorable! But suffice it to say, it was hard to find time to shower again! We spent a full week in CCU for various reasons but mostly, they wanted to play it safe after the rollercoaster he had had so far. The first few days the focus was on making sure the fluid was completely out and it was up and down every day until about Friday. At one point, we thought we were going to get tubes again and that morning, he woke up with his lungs looking clearer on the xray.

During these first few days, the nurses discovered that his PICC line had become clotted and could only use one access rather than both. Keeping it in meant more of an infection risk but they were hoping they wouldn't need to use much more medicine through the IV and planned to take it out Saturday morning.

On the food front, he had begun eating more and more by mouth and becoming less dependent on the feeding tube. The only time he used it was when he was too tired to wake up to eat, which is normal for him, he tends to get his best sleep overnight versus during the days. He also used it for the medicine, which ended up being quite a bit of meds.

We had a scare on Friday night- he was doing well, excited to see Alex again when he arrived and at 3am, the nurse thought he felt warm. Well, he was. He had spiked up to 103.5. Immediately, our room came to life and they started using the PICC line to begin antibiotics. They also put him in isolation so everyone..but us, was in a mask, robe, slippers, etc. The nurses took blood to test for infections, cultures, etc. It would be 48 hours before we knew about most of the results but the most obvious answer would be the PICC line had been infected. Yes, the same one they were using and had to take out. The biggest fear was it was something viral, especially RSV, which is one of the worst things a kid with heart issues can have and we had been getting him monthly shots against it. However, being in the hospital puts you at such a high risk of getting all of these things.

It was a tense weekend as we waited for results to come back- his fever in the meantime had come down quite a bit and by morning, he was doing much better. Mom and Dad however were exhausted, we never slept. My parents came down for the day and it was just nice to have outside world contact. Liam was looking better- of course the lungs finally looked clear and this fever thing was just another blip on his path. Yay...read sarcasm. On Saturday night, Liam got a roommate and it was one of those, is this a joke moments? The little boy was also a William, about 2 weeks younger than our guy, with the same heart defect who apparently had some type of virus. Nothing like confusing the nurses. His surgery is March 18th and we wish his family the best of luck!

On Sunday, Alex and I took a feeding tube class and a injection class, since one of his meds was a shot we had to draw and give. It was blood thinner too which made it very serious. Later that morning, my Mom came back down and Liam was sleepy because of the antibiotics and being woken up so much. Then my brother Ryan and his friend Zohaib came to visit after spending the weekend at U Del with friends. It was just a nice weekend, I had Alex there, family and things just felt so much more normal. Alex left Sunday night with both of us hoping this would be the week we got to go home.

After Monday morning rounds finished, our nurse came in to give me the update and our wish came pretty quickly- they wanted to discharge him Tuesday! Wow. So I began to pack up things, there was just so much we accumulated during 6 weeks. It was unbelievable. My dad ended up coming down that night and we had dinner, he played with Liam so I could put everything together. It was just moving so quick and I was starting to get a little bit nervous.

By this point, we had gotten another roommate, a little girl. You know when you are at the mall and you see parents just do things that make you want to scoop in and cuddle their child? Try sleeping next to it. It was so hard to hear them and listen to what they would say to their 1 year old, who had so many health problems. And then, here is a little girl with a bad heart who was having a hard time eating, most of these kids do, and they refused to let the nurses give her a feeding tube so she could get nutrition. What do the parents do instead? Put chocolate syrup in her formula and gave her french fries. Really? I was steaming mad that night, I just wanted to take her home with us. I know this is a vent but after going through this and seeing just how precious life can be, especially with kids like Liam, I couldn't feel anything but remorse for that little girl's future. Mom also smokes 2 packs a day but told the doctor she stood away from the little one. The doctors were upset too, and I was impressed by the restraint shown. Its times like that where I wish child services had cameras around. Sigh.

On Tueday, Ryan came down again to drive with me back to DC so Alex didn't need to come up and go right back down. We ended up getting discharged pretty late, around 3pm and hit every traffic known to mankind back home. I kind of wished the helicopter was an option again! It was bittersweet leaving- I found our two favorite doctors to say thank you and goodbye. Dr. Bird was so good to us and Liam lit up when he saw him. It was hard, I had a lump in my throat because I was scared but excited. Its not everyday you almost lose your son, more than once, and you can look into the eyes of the people who literally held his heart in their hands and thank them. If anyone has any ideas of a real thank you present for that, I'm all ears. I'm sitting here trying to figure out how to convey how much their care meant to us.

Will update more on our return to home/normalcy/not normalcy. I know this was a long one, its been a few days since I had time to get online. Love to all!