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!