Another Post Op Update

Hi everyone! Caleb seems to be doing better! That first night after surgery was definitely rough. Poor guy! We have found out that sometimes if you have two types of anesthesia, like he did, it can make you sick. He definitely had a hard time recovering.

His g-tube site is still trying to heal. I wish that hole would close on it's own. The last thing all of us wants is ANOTHER surgery. So please keep praying that it heals on its own.

Great news, Caleb has started to hold his sippy cup and take drinks! We have been working on this for awhile now and two nights ago he decided to do it! So proud of him. He has also been trying to take more steps on his own. Praying this is a sign that we may have a walker soon! He also has been trying to mimic Bri and I now when we say not only words but FULL SENTENCES. He is growing up! So proud of my baby! Caleb and I also went to the grocery store on our own the other day. We are really trying to carefully ease up on the isolation restrictions. The past times we have gone grocery shopping with Bri, but Caleb and I did it on our own! Who knew grocery shopping would be so much fun!

Thanks for checking in! Please pray that g-tube hole closes on its own.

God Bless you all!!

God Bless Caleb!!

Surgery Update

Well Caleb had his surgery yesterday. We got up at 5 and were out of the house at 6. We arrived at Children's Hospital right at 7:30. A couple minutes before we reached Children's Caleb was asking for milk. This is the first time we have had to deal with a child that drinks and eats pre-op. So it was very difficult for him to understand why he couldn't have any milk. But we and he dealt with it well. Once we got back in the pre-op area, poor Caleb knew all too well where we were. He got very upset. My heart broke, as I realize that now that he is older he knows what is to come. We got him calmed down in the pre-op area and watched some cartoons while we waited. I am not sure if the wait wasn't long or if my nerves were so bad that I didn't notice how fast time was passing. But soon they were ready to take him to the OR. I had such a hard time also in the pre-op area. I know some would think that the amount of surgeries Caleb has had up to this point, which would be probably in the 30's, that one would get 'more used' to the routine. But it is quite the opposite. They do give you the option of going into the OR with your child as they put them under the General Anesthesia, but I did that two times before and it is very hard to see. So I carried Caleb the whole way from the pre-op room, down the hall, until the docs said that was as far as we could go with him. As I went to put Caleb back in the crib, it broke my heart as he cried and said 'nana' and reached out for me and Brian. That is the first time he also 'verbalized' how upset he was. It doesn't get easier. His surgery was finally done and soon we were able to see him. We went back and he was curled up in a ball in his crib. The nurse asked Bri and I if he was a cuddler and we said yes, and she said she could tell by how he was sleeping in the ball in the side of the crib. I immediately picked my lil man up. Once again, trying to figure out where all the tubes and wires were to make sure I didn't pull anything. I can't believe he had tubes and wires on him constantly and how moving him around with all these things attached to him at one time for so long was second nature. Nevertheless, I scooped up my lil man and held him. Then, I handed him off to Bri so he could hold him also. Once he began to wake up he was very groggy. It took him about an hour and a half to come out of the anesthesia and drink enough to come home. On the ride home, he didn't seem as 'unaffected' by the surgery as he has with some of his previous surgeries. Once we got him home, he curled right up on the couch and passed out. He slept for about 2 hours and then woke up and was very cranky and obviously in some pain. We gave him some pain meds and he then passed back out. We also realized this was about the time that the epidural they gave him for pain was probably wearing off. He then slept for about two more hours, waking up in between crying. At about 8 o'clock he tried drinking some watered down milk and it went well, but an hour later he started gagging like he was going to be sick. This is also a new thing for us and him as he always had the g-tube and if he was sick we just vented that to prevent the vomiting. So he cuddled with his daddy while he was sick to his tummy and the nausea seemed to subside (as he can't actually tell us, but we could tell from his demeanor) as he started to move around a little more. After sharing some jello with his dad we got Caleb into bed. He slept through the night and seem to be doing better this morning.
I cannot thank everyone enough for all the messages on facebook and texts regarding Caleb and all the prayers for him and our family. You all have been so supportive to all of us throughout this and we cannot thank you enough. You all are amazing people and friends. Thank you for being such a wonderful support system for our family!

God Bless you all!!

God Bless Caleb!!

Therapy Evaluations and G-tube update

So we got to take Caleb to two out of three of his therapy evaluations at the new clinic the other day. It was nice that Brian was off and was able to go with us. We were so very impressed with the facility and the therapists, they were amazing. Brian and I felt so good after we left there. It would have been nice if we could have done it sooner, but Caleb's immune system at that time wouldn't have allowed it! WE are so excited! They have amazing equipment that I hope and pray will help Caleb with his delays.

One of the biggest goals is to get Caleb walking. Some other goals: communication (i.e. letting us know what he would like to eat, letting us know if he doesn't feels well by signing or saying something like 'my tummy hurts', letting us know what he would like to do, etc) brushing his teeth and spitting it out when he's done, dressing himself, going up and down stairs, these are just a few but some of the bigger goals. He can do it!

Also, his g-tube site, continues to leak. We are changing the dressing constantly along with outfits. It has been nice that the weather has been so warm because due to all the leaking, I let him go around the house in his diaper and sometimes a shirt. He loves it, he hates wearing clothes. I have called the docs again regarding trying to get it surgically closed next week when they fix his hernia and unfortunately they put me through to a nurse who has no idea of how many surgeries Caleb has been through already and how if we could group these too surgeries together it would be better for him. So frustrating! But I am praying that it will close on its own before then and he won't need it to be surgically closed.

Well that is all the updates for now. Gonna color some eggs today. Still trying to figure out how to approach the Easter egg hunt with Caleb as I am not sure he will understand. We will see!

Happy Easter Everyone!

God Bless you all!!

God Bless Caleb!!