In the waiting room, before surgery, Lucas happily played Nintendo Game Cube. He was relaxed and happy right up until needle time.
Pay attention to how narrow his chin and cheeks are so you have a frame of reference for the swelling later.
This is right after he had been moved into his room after surgery. The pink tape on his cheeks was to protect his skin from the medical tape holding the gauze on. The gauze was to absorb the continuous oozing from his nose. There was no actual work done on his lip.
There was an ice pack in a sock-like tube, tied around his head, that was just under his chin. The surgeon warned us that the swelling could be quite severe, and said that the more icing we could do, the better.
Lucas was quite sore, groggy, and generally uncomfortable. He didn't want to move his mouth at all. I gave him water and juice through a syringe for the first day and a half. He slowly took more control over feeding himself on the second day.
This is the first night in the hospital. the new nurse used a different kind of ice pack. Lucas slept well that night, waking for pain meds and drinks, but able to go back to sleep again.
This is the morning after surgery. Lucas was still groggy, and refused to move. He was happy that there was an X-Box that he could use in his room.
This is day four. His nose was no longer continually oozing, so he stopped needing gauze under it. He wasn't ready to peel the orange tape off of his nose though. You can see a great deal of welling, under his eyes and through his cheeks.
This picture is from the same day. Lucas really likes it and wanted it to be included in the blog. He got a 3D book as a prize and loved it. You can see the swelling a bit in the bottom of his jaw (which is usually very sharp and skinny).
Here we are on day five! Lucas took the orange tape off of his cheeks, though it did leave some rough patches. You can see the black eyes and the bruising, but the swelling is starting to come down. He is starting to have his little pointy chin back. Lucas misses his 'cute puffy cheeks' and wants to get them back one day.
Last night was kind of a rough night. Lucas said his hands felt like they had hair on them, and I have no idea what that meant except that maybe it was something to do with his meds. At any rate, it really upset him and kept him awake even though he was desperately tired and grumpy. We finally moved him to the big easy chair, where he was more upright, and he went right to sleep.
We woke him twice for medicine, and he was really upset. He even cursed at me for waking him up in the middle of the night. The second time, he took he antibiotics but flat out refused his pain meds. After ten minutes of trying to convince him, I gave in. He slept OK the rest of the night, but was a major grump in the morning. We finally hid some meds in a chocolate milk shake, and he didn’t notice. We did that three more times during the course of the day.
Steve’s sister came by again. She did some dishes for us, bless her, and visited with Lucas for a while. Lucas actually walked himself the bathroom and back, which we were all so happy to see. He even made a joke about being like a character on the Adam’s Family, with his funny limp. He sat on the living room floor for quite some time and built with Lego. The surgeon said the more upright the better – so even sitting on the floor is better than lying down. So we were happy to see him playing on the floor.
There’s a fair amount of swelling around Lucas’s jaw and cheeks, and he looks like he has two black eyes. The surgeon warned us of this, though, so we aren’t concerned. We also got to move Lucas away from clear fluids today, so he had all sorts of things blended up in the blender – soups, and pasta, and lots of fruit smoothies and milk shakes. There is definitely no problem with his appetite or fluid intake.
At bedtime, Lucas made me promise him I would not wake him up for any kind of medicines. He wants to sleep all night. I’m going try to post some pictures tomorrow.
We are home. We got to come home earlier today, and have been spending the day settling in.
Lucas had a decent night. He was awake several times, asking for drinks, to use the washroom, and to get meds, but he never stayed awake very long. He didn’t seem to be very uncomfortable. There was an order for morphine as needed, but he didn’t need it, for which I am very glad. We managed the night on just Tylenol. He had one big vomit, of all the blood he had swallowed, and then his tummy was fine.
I tried to get Lucas to put weight on his leg this morning. He was completely against it. He had heard from the doctor twice that he needs to bear weight on it, but he said it hurts too much. I did get him up for about 30 seconds. The doctor said that even sitting is better than lying down, so we have him propped almost completely upright on the couch.
Fluids haven’t been an issue. Lucas is taking lots in, and keeping it down. His face has some swelling, and he looks a bit like he has two black eyes, but there doesn’t seem to be any pain associate with the swelling. His mouth and his hip are hurting him, but that is managed with Advil and Tylenol.
We have a very strict cleaning regimen, involving swishing with sale water after everything non-water that he consumes, swishing with an antibacterial mouthwash three times a day, and brushing three times a day. Lucas isn’t really enjoying any of that, but we just remind him that it is vital to the success of the graft, and he complies.
We had some more family visits today – Steve’s sister spent a couple of house with us and came bearing [ails of ice cream. Steve’s aunt and uncle brought us home-cooked dinner, and minigo for Lucas. He enjoyed their visits immensely, especially trying to get his auntie to build Lego.
He is once again resting comfortably, and it seems like the night will go smoothly.
Our surgery time was scheduled for 10:30, so we had to arrive at 9 am. Lucas got up and had a shower, and I helped him wash all over with the antibacterial scrubby sponge they gave us at out pre-admissions clinic. He had a few cries during this process, asking why today had to be surgery day. I was able to help him calm down using the breathing and relaxation techniques his psychologist has been teaching him.
The whole family piled into the car, and Steve dropped Lucas and I by the hospital. He then went to take Coram to grandpas and came back to join us later. Our psychologist met us at the check in counter, and waited with us to get called in to daycare surgery. She helped Lucas practice some of his relaxation techniques., and she made him a really cute ‘certificate of merit’ congratulating him for learning to be a ‘master relaxer’.
When we got called in, Lucas had a few little cries with me as we changed into his gown. He again asked why surgery had to be today, couldn’t it be next week? And of course, he often asked why he was born like this. After the was changed, the psychologist came in and mentioned she might have heard some worried while he was getting changed, and again they did some relaxation.
The lady from Child Life came in with the Game Cube, and she played games with Lucas for the next hour. When Steve showed up, Lucas was calmly sitting on his bed, playing a racing game and having a blast. He wasn’t showing any anxiety at all.
When the anaesthesiologist came in, we talked over the options for going to sleep, which Lucas had already thought through. He wanted to use the needle, not the mask, and he refused the EMLA cream that numbs the skin. He said he was going to use his relaxation techniques when it was time for the needle. Our psychologist had arranged so Lucas could have the saline block put in his private room, before going to the ER. They lay him down, booted the rest of us out, and did ten minutes of relaxation with him. Then it was time for the needle.
And that is when the poop hit the fan, so to speak. All relaxation techniques went out the window. I think we all lost track of time, trying to convince Lucas to use his breathing and his ‘protective glove’ to cope with the needle. After what ended up being an hour, the anaesthesiologist suggested we abort the surgery since there was no way we were going to get the needle in his hand this way.
I immediately objected. First, I didn’t want Lucas getting the message that if he fights hard enough, surgery gets cancelled. Second, I did not think our family was capable of going through the anticipation of surgery for another few weeks. The psychologist did not want them gving Lucas a sedative, or holding him down, as she wa afraid it would just compound ohn his last bad experiece. The anestesiologist was unable to wait longer for a relaxation technique that was not working, so they wanted to abort.
I guess someone caught the look on my face and the desperation in my words, because the oral surgeon came up and stated that the surgery was actually overdue, and it wouldn’t be the best idea to abort for the day. He helped me to insist that they just quickly hold him still to put the needle in.
I opted not to be in the room. I stood outside listening to Lucas panic, which was really hard. But, it was over in less than a minute. Lucas had the stint in his hand, and was saying, ‘Is that all?’
One hurdle over, we now had to get Lucas into the operating room. No meds had been put in him yet. He was absolutely not going to walk to the OR, and stood by the doors screaming. We managed to get him to go into the hall, because he was really upsetting the other kids. They brought a stretcher, and the anaesthesiologist told Lucas she needed to check and see if the thing on his arm was working by putting more saline in. She put kedamine in, followed by saline, and Lucas was instantly relaxed.
So, in the end, he was tricked a bit, again. And, smart guy that he is, the first thing he said to me when he woke up was, ‘She lied, she said it was salt water.’ However, it was less traumatic for him overall than the last go into the OR, so I guess it’s a step in the right direction. I really didn’t see any way around it at the time.
The anaesthesiologist came out to talk to us later, and said that though she appreciates the relaxation work being done with Lucas, and finds it very valid. She said that with a case like Lucas, it probably wasn’t enough. She made some suggestions for sedatives next time, and I have to say, I agree with her. That hour spent trying to convince Lucas to co-operate didn’t help at all.
The surgery too just over two hours, and Lucas recovered for an hour before they called us. It was 3:15 when we got to see him. He was definitely groggy, but didn’t look to be in an pain.
Two different grandparents came for a visit, as did Jam and Coram. Lucas rested comfortable for the evening, and enjoyed watching the cartoons on TV.
I sent off an email to the nurse clinician to the cleft palate clinic, and I am so glad that I did.
She referred us to the Psychology department, and they have seen Lucas a couple of times. They are teaching him strategies for helping him feel better when he is worried.
They are also making a list with him of exactly how he wants the surgery to go … fort example, no bubble blowing while they are giving him the anaesthesia. Then, they are going to be there with us during the wait, and go into the OR, to make sure Lucas’s wishes are met.
I feel this huge burden lifted, because I now longer feel responsible for getting Lucas into the OR. The psychologist can do that. She told me I have enough to do, she’s happy to take this off of my shoulders. I just wanted to hug her.
She also told us not to talk about surgery at home. Anytime Lucas brings it up, we write his questions down and bring them to her, but we don’t talk about it.
The anxiety level in our house has dropped majorly, since we don’t have to talk about it ever, and Lucas feels more in control and respected.
After a horrible rainy weekend, we got a beautiful day of sun yesterday. As Lucas and I were driving home, I wanted to take some pictures of the blossoms on the trees. Lucas was having so much fun in the park, I just had to take some pictures of him, too! Look at that shiny red hair! Lucas is so beautiful :)
I got in touch with the clinician at the cleft palate team to talk about my concerns for Lucas and his apprehension of surgery, and whether he will co-operate when it comes time to go into the operating room. She referred us to the psychologist, so I have a series of appointments there.
I also picked up some booklets in a program called ‘ Taming the Worry Dragon’. It is designed to give kids tools to deal with their worries and anxieties.
So, hoping that with all this intervention, we can help Lucas prepare for that trip into the operating room.
Each day I wake and realize we are one day closer to bone Graft.
The big, huge, ominous surgery that I have been dreading since that wonderful day in April almost nine years ago when Lucas was born.
I have been stockpiling activates … maze books, small model kits, videos, card games … whatever I can get on the cheap from Scholastic or at the local toy store. I know Lucas will have a very hard time if he doesn’t have anything interesting to do, and I know we are looking at an extended period of inactivity. Add to that Lucas doesn’t really care to read, and it makes me worry.
We talk about Bone Graft a lot. Lucas is very scared, but is trying to be brave. Almost everywhere we go someone wants to talk with him about it. We are trying to keep it close in his mind, so that it doesn’t seem like it came out of left field for him. My mom is set to take him for a few days after the worst of the healing is over, and she promised him piles of videos to watch and games to play, so he is happy about that.
The other day, when it was just him and me, I asked him how he was feeling about it and he had a cry. He puts on such a brave face for everyone else, but I know he is scared.
I am doing my best to remain positive in his presence, and not let my nagging anxiety show. He has enough of his own, he doesn’t need mine added to it.
Te wonderful thing is Coram is doing very, very well. I got a call from the teacher recently – and she was just calling to tell me how well has been doing, and how proud of him she is. We are working on a plan to transition him to a mainstream school with an aide. His teacher says he has learned what they have to teach in that class – which is how to appropriately deal with emotions. He is making choices without prompting that are appropriate ways to handle his anger and worry. I am so proud of him. And I am so relieved that things have gotten so much better, it gives me hope.
I am a happily married mother of 2 wonderful boys who are energetic and brilliant and keep me jumping. When they were wee babies I was isolated at home with them and turned to the internet for community. I have spent the last 5 years learning all about the highs and lows of internet marketing, and I know I have much, much more to learn. I am aspiring towards earning a full time living online.
I am also an aspiring speech therapist. I have partially completed my degree and am on parenting/stress leave/hiatus for an indefinite amount of time. I don't feel I have abandoned the goal - just set it aside for a bit.
I can be found on several internet forums with the username 'Payingforschool', which I am doing both financially and psychologically despite the fact that I am not presently attending school.
I am also active on several parenting forums, especially ones associated with cleft lip and palate, as my first son was born with both. My younger son was recently diagnosed as high-functioning Autistic, so I have set myself on a path to learn all I can about this condition.