Jimmy's Palate Surgery

Just a warning...this is a long one!

Jimmy's surgery was scheduled for 7:30 am on Monday. We were supposed to arrive at 6:00 am but were running late and didn't get there until about 6:20. I was amazed at how good he was considering he hadn't had a bottle since midnight the night before and had just 3 oz of pedialyte at 4:15 am. He enjoyed playing with all the toys in the waiting room and also the ones in the doctor's office. After arriving and checking in we were called back for Jimmy's exam.

Jimmy weighs about 20 lbs and is 2' 5 1/2". After the nurses checked him out we were led to another waiting room to meet with the plastic surgeon, ENT and anesthesiologist. The ENT said he would look to see if Jimmy had fluid in his ears and if so he'd go ahead and put ear tubes in just before surgery. 96% of kids with a cleft need ear tubes but we still thought maybe he'd beat the odds. He hasn't afterall had any ear infections. The plastic surgeon said the surgery should take about an hour and a half. He said he would do a tongue stitch just in case they needed it. He just puts a simple stitch through the bottom side of the tongue and then tapes it to the side of the cheek. This way if the tongue slips back and blocks the airway sometime during or after surgery they have a way to pull it out. The anesthesiologist said he would put him to sleep with a mask and once he's down he'll put an IV in either his hand or foot and a breathing tube down his throat.

We waited a few more minutes and then followed the anesthesiologist down the long hall to the much dreaded double doors. We said our goodbye's and gave lots of hugs and kisses and handed him over, knowing he was in good hands. I was proud that I fought back the tears. We then went to yet another waiting room. We got in the waiting room around 7:50 am.

(in his hospital pjs, waiting for the doctors to come)

(at least they had cool toys to play with!)

After an hour of waiting I decided to go to the cafeteria to get something to eat. I brought some food back up to Jarom and we were still eating when Dr Warnock (the PS) came out and told us that surgery went perfectly and that Jimmy was in the recovery room and once they had him stabilized they would come and get us. He said it would probably be about 5 minutes. The ENT did end up putting ear tubes in. He said Jimmy's ears were full of junk and that he had most likely been having a hard time hearing and things were probably really muffled. Now he'll be able to hear a lot better. We then hurried and finished our breakfast and anxiously waited to be called back. It had been almost an hour and still nothing. We were getting really worried and I got up and asked the receptionist if she knew what was going on. She said sometimes it just takes the kids a while to wake up from the anesthesia. I sat down, not satisfied with the answer and still worried. Finally about 15 minutes later I was called back. Only one parent can go into the recovery room so I went.

Only a parent who has had a child go through surgery can truly know how difficult the recovery room scene is. It's even a little difficult to recognize your own baby. He was just laying there so helpless and hurting it just broke my heart. Even though I had been through this one time before I still don't think it made it any easier. He was very swollen and pale and crying pretty hard. I couldn't hold back the tears. Dr Warnock came up to me and said after he left us in the waiting room he came back to check on Jimmy and he was bleeding from the left side of his palate. He said this only happens in 1% of the cases. They had to put him back under the anesthesia again and cauterize the palate. He explained that he used a laser to seal the wound and stop the bleeding. Jimmy lost quite a bit of blood and that was why he looked so pale. He said they would keep on eye on him and check his blood count in the morning and give him a blood transfusion if his count was too low. Of course this added to my worry. They would also keep us longer if they had to do a blood transfusion.

(my first look at him in the recovery room...the blue things on his arms are arm restraints to keep him from putting his hands or other things in his mouth...you can faintly see the blue string from the tongue stitch taped to his right cheek)

We finally got into our room and got all settled and pretty much just switched off rocking him for the next 24 hours. He was very groggy and drugged up being on morphine and tylenol with codiene. He was not a happy guy but was still quite the trooper. We had another scare when I was rocking him and he all of a sudden started coughing up a ton of blood (well it sure looked like a ton). It frieked us out, especially since he had been bleeding before and Jarom ran out into the hall and called for the nurses. They ran in and assured us it was quite "normal" and we were very bothered that they didn't care to tell us beforehand that such a scary thing was "normal." Since I didn't bring an extra pair of pants I walked around with blood stains all over me for the next 24 hours. I tried to wash it off my clothes but once it dried each time you could totally still see it. I even had blood in my hair...ew!

(he now had more blood around his mouth after spitting up all the blood...we washed some off but it bothered him so much when anyone just touched him at all that we couldn't bear to keep torturing him)
(this is what he liked best...to be held, rocked and not touched by any nurse)

We weren't able to get Jimmy to eat anything until pretty late Monday night. Every time he would just see the bottle he would start to cry. It was so sad. He finally drank about an ounce and a half of pedialyte. A little later we tried him on some formula and he got so mad when we tried to feed it to him. He wanted to do it himself. We took his arm restraints off and let him have at his bottle. He was very cautious as he ate and would stop and cry in between a few nibbles. He only drank maybe an ounce or two. Good thing he had an IV in him.

(Finally he's eating!!! He of course HAD to do it himself though!)

(Gpa Dennis came to visit...Jimmy was still really groggy...Gpa and Jarom gave Jimmy a blessing)

Tuesday morning he had his blood count tested at 6:00 am (a very pleasant wake up call to a long night). I was surprised at how well he handled the little prick and the prodding of squeezing some blood out. A few hours later we got the results. Dr Warnock came in and said his count was at 21.9. Normal for him would have been 40, so he was very low. He was border-line in needing a transfusion and thus Dr Warnock said he wouldn't do one. He said if he was one point lower he would have done one. I was so relieved. Then he said they'd wait to see how he was eating and if he ate a little bit more and everything else looked okay then we could go home. A few hours later we got the good news that we were okay to go. We were very relieved and excited to go home. I still was very nervous about taking him off the IV and having him get dehydrated since he still was not drinking much at all.

(the toys helped distract him for a few minutes...)

(...but not for very long)

(we were so glad to finally be ready to go home)

We got home around 12:30pm on Tuesday. He's been doing pretty well and I've switched him to half his dosage of tylenol with codeine and the other half to plain tylenol. He seems to be doing pretty good with that. I know he would be in pain without the medication though. I can tell when it is starting to wear off and when he is feeling more pain. I am still really worried about his eating. He is only allowed to have liquids. Today he only drank 11 oz all day. He normally would drink about 24 oz of formula and then also have oatmeal, 2 jars of baby food, and many crackers and other snacks. I am going to call his PS in the morning and see if this is normal post-surgery or if I should be worried. I know it's normal to have less of an appetite and to not want to eat because not only is it sore but it just all feels so different in there too, but it seems like he should be eating more than 11 oz in one day.

The things that got me and Jimmy through today were help from Gma Vickie (without her I don't think I would have been able to shower or eat lunch), two walks around the block and many new toys and books.

Thanks to those of you who have called, sent gifts, written emails and most importantly kept us in your thoughts and prayers. It means so much to us. Sorry I haven't returned many of your phone calls and emails. These past fews days have been so crazy and I rarely have a minute to be on the phone or the computer. I have to be at his side the whole time and holding him much of it too. I do have to say that it has been nice to be able to cuddle with my baby again! I miss him wanting me to rock him and it makes me realize even more just how fast he is growing up. I'll continue to update this blog on how he's doing.

Congratulations to all of you who made it through this post...it's a long one!