Surgery Complete

We are home after a very long day yesterday at the hospital. And seemed for the most part to be one confusing situation after another.

At our last plastic surgeon appointment we were told to call as soon as we woke up yesterday to let them know if she still had the infection. I called the office at 7 am and left them a message. I waited until just after nine and called them again as they had not called me back. The receptionist told me that I should have called before nine as the surgeon was now in the OR and could not be reached. I stated that I did call much earlier and left her a message, and she replied by saying she did not check her messages yet for the day. She then proceeded to tell me that she would try to leave him a message and get back to be around noon. As I had arranged for a babysitter to come for 10 am, I quickly called and asked her to come for noon instead.

At 11 am the surgeon's office called back with instructions for me to get to the hospital by noon as they would be fitting us in before 3 pm. I called the babysitter back and she graciously jumped in her car and came over. We arrived at the hospital right at noon, but when we arrived at the admitting desk they had no record that we were supposed to be there and would not admit us. They asked us to sit in the main lobby area while they tried to contact the surgeon (who was in the OR). After an hour of waiting I called the surgeon's office myself and they were shocked that we were not yet admitted and told me that they had faxed the request to the hospital earlier in the day. I relayed that info to the 'friendly' admitting staff and they again told me that they had no such request. After three calls on my cell phone to the surgeon's office a fax finally surfaced at the admitting desk but on it the surgeon's request that we be moved to wait in ambulatory care wing until this mess was resolved was misunderstood in that now they thought Miah was being admitted as an ambulatory care patient and not as a surgical patient. The reason for the request to move us to a different waiting area was that Miah was fasting and the main general lobby is home to a small cafe and everyone was coming to eat their lunch in the seats beside her. Needless to say we did not get permission to move and sat in the lobby for 3 hours!!! Not fun with a child who is tired and hungry and now really grouchy! There was a vending machine and she kept asking me if she could just go over to it and look at the food!

Finally at 3 pm there was a shift change at the admitting desk and the 'friendly' staff went home and a very nice young girl arrived asking why we were waiting. I tried to explain as best I could without bursting into tears and she states "I have your fax over here. It has been here for while now." So at that point she got us registered and sent us to the surgical waiting area.

Much better in this waiting room as there was a TV and no one is allowed to eat in this area. Again there was a little confusion as to who we were and why we were there. The nurse didn't know about putting emla cream on her hand for the IV and looked at me like I was speaking another language when I asked. She also did not give her Tylenol as in our other experiences, but I didn't even question that one. I changed Miah into her hospital jammies and we waited some more. Finally at 5:45 the anesthetist came in to get her. Of course the way the day was going, I was thinking our luck would be to get the only guy in town that does not let the parents escort their child in and guess what...we did! So, I had to explain to Miah that I could not come with her this time and she started crying, clinging to my leg. The surgeon arrived at that time to get me to sign some papers and I was able to convince her that she could walk in with him. She was OK with that....so off they went.

Surgery lasted 45 minutes and Dr. W was able to remove the nasty undissolved stitch that was giving her trouble, clean out the wound and stitch it back up again. He did say he left a bit of a hole so that this time it can drain if it needs to. I was sent to the pediatric ward to wait for her to be brought from recovery. When I arrived, I told them that my daughter was being sent up from the OR. Again I got blank stares and they said they had no idea that they were receiving a patient. OK, I should have seen that one coming. Miah was finally brought to me around 7:15 and we spent the next 2 hours eating ice cream and Popsicles...that's why you go to the hospital right?

She is doing well. She didn't sleep great last night, lots of bad dreams I think, but she doesn't seem to be in much pain. She ate a big breakfast and is currently enjoying snack two of the morning. I think she is making up for yesterday! Thank you all for your prayers! We're praying for no more infections!

Back to the Operating Room?

For the last couple of weeks Miah has been struggling with an infection in her incision line. The surgeon says he is pretty sure it is the knot where he tied off the stitch during the lip revision four weeks ago. We have tried a course of antibiotics, but it still seems to flare up and then ooze. Some days it looks pretty good as we are hopeful that things are on the mend, but then it seems to just flare up again over night. We have gone back twice now to the surgeon and he thinks that the undissolved knot needs to be removed.

So, tomorrow, with no booked OR time we are supposed to show up at the hospital and wait to see the surgeon. He will then assess the situation and make a decision regarding surgery. He predicts that she could get into the OR sometime late afternoon or around dinner time. Not fun to wait with a toddler who is fasting....and did I mention that I can't find the power charger for the DVD player? Hopefully they will at least give her a bed to wait in and not just have her hanging out in the waiting room. That could be painful!

I would appreciate your prayers as Drew is out of town on a business trip and the big girls are going to be with a babysitter for the day. Hopefully all will go well and we will not have to spend the night. (the photo is her goofy look from our photo shoot last month)

2 Weeks Post Op

It has been two weeks since Miah's surgery. She is back to her energetic self and it is getting harder to make sure she does not bump her nose. Over the past few days it has appeared to us that she has more and more scar tissue building up at the top of her incision line close to her nostril. This morning it was even more prominent and now we are leaning on the side that perhaps she has an infection in that area. I called the plastic surgeon and we will be able to see him tomorrow afternoon. Hopefully it is something that we can treat with oral antibiotics and not something that has to be opened up. She has also been saying more often that her nose hurts, so perhaps there is something going on.

6 Days Post Surgery

It will be one week tomorrow that Miah had her lip/nose revision surgery done. I can't believe how fast this week has flown by and how well she is doing. Yesterday she had the packing taken out of her left nostril. She was very happy to be able to breathe easier. She was very brave while they removed it and only jumped a bit as the surgeon pulled it out. He rewarded her by giving her a Yo-Yo. He's on her list of people she likes again :)

Today her incision line is less red than yesterday. It is amazing what even 24 hours can do to the healing process. The only struggle that we are having is that this experience seems to have brought back to the surface her obsession with food. We were finally at a point where food did not seem to be an issue anymore. She ate happily at meal time and stopped when she was full. Maybe it was the pureed food for the first few days that has set her back into this obsession to know when every meal time and snack time will be. She has been asking to eat every 1/2 hour and gets upset when I tell her it is not time. Hopefully this will pass soon enough.

She is sleeping great though! Last time after surgery she would wake up many times in the night crying and I was worried about that happening this time too. So far so good!!!

Surgery Update

This past Wednesday Miah had a nose/lip revision done. Initially they were also going to close a fistula that she has, but since then a lovely adult tooth has come down right into the fistula. Good news, is that it is blocking the hole, but bad news is that they will have to repair it at a later date (yet another surgery). The thought being that the tooth will stimulate more bone growth in that area. Kids born with clefts do not have a lot of bone in the affected area and many require bone grafting. The doctors like to encourage as much bone growth as possible in order to minimize the need for a large bone graft. This is a surgery Miah will have in a few years. They will take bone from her hip at this time to build up her gumline.

I was so happy that I was allowed to accompany Miah into the OR at 9:00 am. She was so brave, although I could tell that she was really nervous. We laid her on the table and she only whimpered a bit when they put the IV in. I was able to talk and pray with her while she went to sleep. The surgery took just over 2 1/2 hours. This was a bit longer than they anticipated so Mommy was getting a little worried around the 2 hour mark.

At noon we were able to meet Miah in her room and cuddle her. She was a trooper. She did not cry the whole time we were there, just the occasional moan. She kept pointing to her nose and asking me to "take it off." Her one reconstructed nostril has packing in it and it is sutured in place with a bolster stitch (you can see the gauze on the bridge of her nose.) It must feel like something is on her face. That has been most bothersome for her. The Doctor will remove that gauze next week. The surgeon also said he got a really good repair of her muscles in her upper lip area. Hopefully this will help her with her speech.

She was in good spirits while we were in hospital. She enjoyed been fed bits of broken Popsicles and ice cream. If we were playing she would say to me "I can't smile or laugh. If I am happy I will say Hee Hee and you will know I am happy." She is so darn cute.

I am little disappointed with how her nostril is currently looking. To me it looks like it will end up being larger than her left. When I asked the surgeon about this he said that there was not a lot of cartilage left to work with and it will require another surgery at some point to add cartilage from another area on her body. I almost cried when he pointed out yet another surgery in her future. I sure hope they can start to piggyback some of them.

Day One
Day Two