September 8, 2009

Hospice called with the results of his pulse ox from over the weekend. He didn't do well. His sat levels were really low. I know we will probably have to put him on a canula or mask. He just hates anything on his face. We will get with his pulmonologist to see what she thinks. Devin had a great day at school. I asked what he learned. He said Bible. I asked what and he said that they closed their eyes and that God said let there be light. And there was. He said that only God can make darkness. That God said let there be the seas, the skies, flowers and it was done. He made people and children. He even made push pops! I just love him to pieces.

Quiet weekend

It's Labor Day weekend. It has been a relaxing weekend so far. We went over to our friends house for a bar-b-que. It was really nice. Devin had a great time swimming. He is so sweet. We have been monitoring Caleb's oxygen with a pulse ox that Hospice brought over. We need to make sure that the blow by we are giving him is adequate enough to keep his sat levels up. During the day when he is awake his sat levels are great. But when he is sleeping they dip down way too low. We will keep monitoring him for a couple more nights.

A Father's Love

I put this video together for Steven. So many times we forget that our husbands are hurting just like we are. I see how much Steven loves his children. Caleb has really stole his heart. He walks by him and says he is the most precious baby I've ever seen. They spend time just staring at each other sharing a special moment of love. After showing Steven the video, he asked to add something at the end. He is a wonderful father. I just wanted him to know how much he is loved.

September 2, 2009

Caleb woke up this morning like usual at about 6:30 am. He is like clockwork. He starts flailing around because he wants out of his bassinet and wants to lay in our bed. Tell me he's not like any other baby :) Daddy & I layed there with him. It was a nice morning. Then he wanted to be held. This is something new. He usually wants to be left alone. Now he cries because he wants to be held. And don't you dare try to lay him down when he finally falls asleep...he knows...then he's REALLY mad. I love watching him sleep in my arms. His eyes roll to the back of his head, he gets this silly Mr. McGoo grin and sometimes I get a little laugh. What must he be dreaming about? Must be the angels playing with him.


Had his GI appt. Caleb is 10lbs 4 oz and is 22 1/2 inches long. Way to go son! Daddy & I love you so much. You continue to amaze us.

September 1, 2009

I am finally getting Caleb's blog set up. It has only taken me 5 months to do! It was a pretty quiet day other than the arguing with different agencies trying to get respite care. It looks like it just isn't going to happen. It is hard when you don't have any help or just relief sometimes. But then I look at my little mouse's face and it all seems better. Caleb loves to get kissed on the forhead. He just laughs. I sat here thinking about all the things I'd love for Caleb to experience. Will he ever get to see a sunset, play in the sand, get to see Shamu or be able to hold his head up so he can rest on my shoulder. I would love for him to wrap his arms around me and I'd hold him so tight. I love him so much that whatever he does is such a miracle...I'll take it and cherish each and every moment.

Brotherly Love

Devin loves his little brother. He is always wanting to do something for him. He was so excited to sing for him....he got his room ready with all the animals. They are such a blessing.

Seizures

We had gone in for Caleb's Cardiology appt. Caleb just got done having his routine EKG and we were waiting to get his echocardiogram done. Daddy was holding him and I noticed he was trying to get Caleb comfortable. I went over to them and knew something wasn't right. Steven said that he just starting pushing out & getting rigid. Caleb had a blank stare on his face and he wasn't responsive. I couldn't bend his arms or legs. I opened the door and told them that I thought Caleb was having a seizure. All of a sudden everyone came running in. It just happens that Caleb's Cardiologist comes to Ocala and holds appts at Dr. Kern's office (Pediatrician). All of a sudden Dr. Kern's comes running into the office too. By this time Caleb was in the postictal period. It took him a couple of hours to finally calm down. They all agreed that we needed to get Caleb to the Shand's to be evaluated. After a great ordeal and many hours later we were at Shand's. We met with the anesthesiologist because Caleb was scheduled to have an MRI in the morning. I asked why we weren't meeting with the cardiac anesth. We were told that he would absolutely...always need to be under the care of a cardiac anesth. I fought with the dr's for hours. Dr.Ivsik (Caleb's cardiologist) came to the hospital and took care of things, he is wonderful. But it took the hospital 20 hrs to get things arranged. I was so angry because Caleb had only had IV fluids.

Caleb didn't do well under sedation and after the MRI he was sent up to PICU to recover. He just wouldn't come out of it. At about midnight he started to go down hill quickly. I watched the monitors and his respirations went flatline then his sats dropped. He would gasp when he came out of what we think were seizures and apnea. It was horrible. I could tell when he was going to crash. It got more and more frequent. I just layed there on him and cried. The nurses & dr's worked so hard to try and stabilize him. They asked me what our wishes were. My stomach just sank...my heart hurt so bad. I didn't know what was best...no I did know I just didn't want to think about it. I prayed that God would guide me in these hard choices. I called Steven about 2 am and told him that I thought it was time and for him to come to the hospital quickly. Extra caffeine didn't work. They put him on a cpap. He finally was able to stay stable and rest. Caleb was also put into isolation because he had a fever and they weren't sure what all was going on. The next day he had an EEG done. Both the MRI and the EEG showed that he was having seizures. He was also diagnosed with Dandy Walker Malformation. Caleb hadn't cooed or smiled or acknowledged us for days. I was so sad. I kept thinking what did I do?? I was so afraid I wouldn't get my little mouse back. But we did. After we got home he really started to get back to his old self. Thank you Lord for continuing to keep Caleb safely in Your arms. You are our strength...You are with us always....