We had a very long almost sleepless night in PICU. Santi slept a lot but Hector and I did not. Hec got a room in the Ronald McDonald House and was planning on sleeping in there for a portion of the night but I ended up calling him at 3:30 am because the nigt time nurse needed to draw blood for some tests. They had to run a blood chemistry test and look at the hemoglobin levels. They are looking for sodium levels which are signs of dehydration if low and the hemoglobin has to do with red blood cells I think It took 3 nurses and a full hour to draw just a small tube of blood. They tried in both handsand one foot before getting what they needed. I was glad I got Hector to come back because it was not fun at all to see Santi crying from all the poking. After they left and Santi fell back asleep the day nurse who was now on duty informed us that they were going to have to try again because the blood sample they took clotted and would not work. We couldn't believe it! I was feeling mad and tired and everything in between and I just prayed that they would be successful on the first try this time and it would be over quickly. And they were and it was!
Dr. T came in and loosened Santi's head bandage a bit and told us that he looked good. Later Dr. B also came in and loosened the bandage more and told us that it helps keep the swelling down. He also said Santi was doing well. Santi has been pulling on the bandage when he is awake and Dr. T said its ok if it comes off.
Later in the morning they told us that they were going to be moving us out of PICU onto the pediatric floor as soonas they had a room available. We were glad about that because we would have more room for our families to stay and visit and less interruptions. In PICU, you can only have 2 visitors at a time. Our day nurse would let us bend that rule a little and have 3 but the night nurse would not.
They moved us to our new room around lunch time. Santi is still not eating much but he will drink a little apple juice and gatorade. His pain is being controlled by morphine, tylenol with codine and they are giving him antibiotics and pepcid as well. He wants me to hold him all the time so I have laid in the bed with him in my arms or on top of me. Going to the restroom is hard because he knows when I am gone. His eyes are swollen shut and turning purple but he still knows when I am not there.
This afternoon we had a pretty scary episode where Santiago was very upset and would not calm down. Hector's parents and sister were here and Hector had them leave the room for awhile because we werent real sure what was going on and I was getting scared and upset. I was standing up holding Santi and he was hitting me in the face and on my shoulders and chest. His body was stiff and he would not let me comfort him. We had the nurse come in and she gave him some morphine and after about 30 minutes he was relaxed and asleep again. I also fell asleep with him and the Ornelas' left while we were sleeping.
Later in the afternoon or early evening my parents and brother came by. Santiago was in much better spirits and even let me mom hold him. They fed him a popsicle too. Santi continued to pull on his head bandage and it seemed to be really bothering him. I was holding him in the bed and I kept telling him to hold my hands and to leave his fancy hat alone but after awhile he managed to get it pushed up and turned sideways on his head. The ear covering part had moved to in front of his forehead and one behind the head. I was really nervous about the head covering coming off. Its hard enough seeing my baby's face not looking a think like he normally looks. His face and eyes are really swollen and his eyelids above and below the eye are bright purple. I kept saying I wasn't ready to see his incision and what he head looked like. Eventually he pushed it even farther up on his head and I think my dad pulled it off. I immediately began to cry. I wasn't mad that the head bandage was off but the emotions hit me like a brick wall. He has a beautifully stiched zigzag incision on his head from ear to ear and they shaved a strip of his hair. He has all his other hair. It really is amazing to see how they stiched his little head back up. It's like artwork. He looks nothing like himself but I know he will soon. He will always have this battle wound scar to show for his courageous cranio journey. I hope that we can make him comfortable with it and that he will always be proud of himself and never embarassed by it. He has been through so much already and he isn't even a year and half yet. He is such a strong boy!
PS - I decided not to post any pictures of him for awhile because it is really hard to see. If you would like to see him, I can send you a picture through email. There may be other cranio families out there reading this and I know I wanted to see what other babies looked like to prepare myself. Feel free to email me if you are in that situation. We need all the support we can get on this journey.
Thanks again to everyone out there praying for my little man.