Hector, Santiago and I all had a really good night last night. Santi did a lot of sleeping so so did we! We woke up for Santiago's scheduled blood pressure and temp checks and then at 5 am for his blood draw. We had the same tech that was successful for drawing blood so she did a good job again with Santi's little veins. I also woke up once with Dr. B standing over the bed looking at sleeping Santiago. That kinda surprised me to have him stop by in the middle of the night and he didn't say much. He just said that he was looking good and he was swollen.
We woke up and ordered Santiago some breakfast and while we were waiting for it to be delivered, Hector decided to run downstairs and get us our breakfast too. It was about 8:30 and Dr. T came by to visit us. I just knew Hec was going to miss him but luckily I sent him a text message and he replied that he was in the elevator so he made it back in time to hear what Dr. T had to say. He is happy with Santi's progress and said that it looked like his head and face was softening. The swelling has made him skin look and feel really tight. His brusing is changing from a bright purple to a lighter purplely pink color. Looking better! While we were all talking, Santi was sitting in my lap and he seemed to be seeing a little. Dr. T said that he thought his eyes or at least one would be open today or tomorrow. Sure enough we saw a little peep in his left eye and he was seeing until he took a long nap until 2ish. By the way he had his last dose of scheduled tylenol with codine at 6 am this morning so this means he went 8 hours instead of 6 without pain meds. He woke up with both eyes swollen shut again but this is normal. We tried to feed him some lunch at this time but he was not interested in his food at all. We gave him his meds and then took Santi on a walk in a wagon and he loved riding around in it. Hector got the wagon from the Child Life center her at the hospital. They have a neat playroom for the kids also.
My parents came today and pulled Santiago around in the wagon and loved on him some more. They ate lunch with us and left when Santiago fell back asleep. A Child Life worker later knocked on our door and told us that they were making snocones in the "park" and invited us to come outside. I asked how long they expected to be out there because Santi was sleeping but as soon as she shut our door, Santi sat up in the bed and said "bop bop." I tell you, he dreams of popsicles and snocones!! So we took him out there to get him a grape snocone and walk around. Hector's parents showed up around this time and we noticed that Santi's right eye this time was beginning to open. It has a whole slit open instead of the little peep hole we saw earlier in the other eye. Now that he can see a bit, he didn't want to touch the trees he loved touching before. He wanted to see everything! He tilts his head back so he can see upward or opens his mouth wide so he can see. I think its like us women opening our mouth when we put mascara on - it really opens your eyes wider and he figured that out!
He wanted to walk now that he can see so we asked the nurse if we could tape up the IVs in his feet so he wouldn't trip on them. I was scared he was going to pull them out since he is moving around alot more with his sight coming back. Instead of tape, she brought us some socks that had grippers on them so he wouldn't slip as easily and they also held the IV in place. We took him to the sunroom/playroom down the hall and let him walk by holding our hands. He was so excited and so mobile! It was a little scary because he still can't see real well but he wanted to do everything including climbing the little steps and going down a slide. He also is laughing and mimicking our sounds more and his little personality is coming back. It is absolutely amazing to see his resilience and strength! God is good!
I forgot to mention - we were able to dress him in a onesie today, well two different ones because he dirtied the first one with a well waited bowel movement! haha Hector and I stretched the neck opening as big as we possibly could so we could put the shirt over his head without it touching. It was nice to see him in clothes rather than a hospital gown or just his diaper that he has been hanging out in.
Right now it is almost 10 pm and he hasn't had any pain meds since 2 today. He is running a low grade fever still and I think he feels warmer than he did a few hours ago. Our new night nurse came on duty at 7 pm and asked if she could test his IVs, both had gone bad and since we are taking all meds by mouth now we don't really need them. She took them out! It's nice to not have any cords hooked up to my little man anymore. We took the monitors off earlier today as well.
THANKS again for all your prayers and support. I can't express how much it means to me that all of you are praying for my Santiago. The power of prayer is amazing and it is definitely working. Thanks so much!
We may be sent home tomorrow so say a prayer for that!