Surgery

Well yesterday was a very long day for all of us.

We found out early afternoon on Monday that Caleb was going to be the first case on the OR schedule. Which was great news for us as: 1. this was the first surgery that we had to deal with Caleb possibly getting hungry during the wait as he now eat some by mouth and 2. that hopefully we would get home early as we live about a little over an hour away from CHP.

So we got up at 4:00 a.m. yesterday morning so we could get on the road by 5 as we had to be at CHP by 6:30. This surgery was at the new Children's too, so we also had to realize that we would not be used to the flow of operations, waiting areas, etc. We got there and checked in and of course we got the normal stares, as our child is in a stroller covered by a rain cover to protect him from respiratory droplets. It is very hard to put a pediatric mask on Caleb now as he is older and rips it off almost right after I put it on.

So we got him back into pre-op about 7:00. (*The subject of the reverse isolation precautions did not go as well as I had hoped. I think it was probably easier to enforce when he was inpatient as when he was inpatient they had a HUGE note on his chart about the precautions and when the nurses would take him to pre-op when he was an inpatient they would make it very clear about the precautions and thus others continued the information trail when they moved him throughout the hospital. So it could have been better as far as the isolation precautions for Caleb*) The surgery was supposed to entail: a look at his ears and new tubes as children with cleft-lip and palate will always need tubes, circumcision, blood draw for Duke for Immune bloodwork, and to pin down a undescended testicle (testicle is sitting a little high. They pin them down so the normal testicle exams can be performed accurately). About 7:30 we had signed all the consents. I felt bad as Caleb started to sign 'eat' obviously he was hungry. As bad as it was that he was hungry, it was exciting at the same time that he was signing that he was hungry as this is the first surgery that we had to deal with the fact that Caleb may be hungry as he has started to eat by mouth since his last surgeries. Around 7:45 they asked us (so they could limit the exposure to Caleb) to administer some Tylenol and Verset (spelling?-a medicine to help him relax) into his G-Tube/feeding tube. The pre-op Verset was new to us as in the past Caleb was in-patient, had an IV, so they would administer the relaxation meds when he got down to the OR. So it took about 10 minutes and Caleb was RELAXED. It was sad yet cute at the same time. He seemed drunk. So 8:30 they took Caleb to the OR. We got to walk with him to the OR as we have done in the past. Caleb has been through so many surgeries I can't even count: open heart, gall bladder removal, multiple sets of tubes, multiple line placements, Thymus transplant, two separate Nissan wraps (stomach surgeries), two separate shunts on his brain placed, just to name a few. This surgery wasn't any easier when I had to leave him. Even though he was relaxed he kept looking back at me and Brian when they were pushing his crib down the hall. It broke my heart. So once we checked into the waiting room, Brian ran down to the cafeteria to get us some breakfast. While Brian was gone our wonderful friend, Dr. Otteson, came out to let us know he was done with Caleb's tubes. I was shocked at how quick he got the tubes done. He said that Caleb did great with his part and his ear canals actually were bigger this time so Caleb didn't make Dr. Otteson work so hard to get this set in. Dr. Otteson has put the other sets in and Caleb has been known to have very narrow ear canals and we weren't sure if this was CHARGE related or typical age-related canal size. So this was a good sign that the canals seemed bigger. He then said that they were trying to find a vein to draw his blood for Duke. He said 'boy that is a lot of blood they want' and it was. I heard the order and that was probably the most blood to date that they needed for Duke. I used to draw the blood, when he had his central line at home, and then I would draw about 4 tubes. (*I later found out this order was double the amount and they stuck him about 18 times to try to get all the blood) So I had assumed the next part of the surgery had started. About 5 minutes later I heard the gentleman ask another set of parents if they were the Hlebiczki family and I let him know I was. He then told me that the OR was on the phone and needed to talk to one of the parents. My stomach dropped. They got the Urologist on the phone and he said that everything was find but now that he had been able to a more thorough exam he noticed that both testicles were a little higher up than he liked and he would like to pin them both down while he had Caleb under GA (general anesthesia) now rather than waiting to do it in a separate surgery. So I consented over the phone and they proceeded. Brian came back shortly after that happened and I told him the updates. About a hour and half later the surgeon came out and let us know that he was done and that Caleb did well and they decided to do a block (numbs the area where they operated) to help with the pain after the surgery) as they did more than planned. We waited about 45 minutes longer and we were able to go back to be with Caleb in recovery! The new hospital is so much nicer. In this hospital they have isolation rooms so we were able to be with Caleb during recovery as before they had to recover him in the OR (as their recovery room was one big room and that doesn't work with the isolation precautions)with an OR nurse and we couldn't see him during then as we can't be in an OR. He was still asleep and we got the normal run down of what they did. We got to look at what they did and I cringed. He looked like a pin cushion and sore. Thank goodness for that block as he was really numb. We then moved to stage two recovery and we had to feed him 4 ounces via his g-tube before we could leave. He was very cranky at first, but we think that was the anesthesia as he was numb due to the block. We finally were given the OK to go home. We couldn't believe it! WE GOT TO GO HOME! We never had done that!
We got home and Caleb acted like nothing had happened in that regard. We had assumed by then that the block had worn off. Well, not so much. I found out this morning that the block must had lasted longer than what we though because the poor guys is very uncomfortable this morning. I have cancelled all his therapy for this week and I am letting him chill and recover!

So I will update as much as I can! I want to thank you all for the prayers! I got so many emails and texts yesterday regarding Caleb! We love you all!!

Thank you all so much!

God Bless you all!!

God Bless Caleb!!