Wednesday, January 28, 2009
We are on our way home. We are very excited to get home and Lauren is happy to see her brother and sister again. (Wow, Lauren just now decided to open up one of the security doors here in the Long Beach Airport and set off the alarm. That was really loud!!) Anyway, we met with Dr. Roberson this morning to remove the bandages. She kept them on throughout the night and seemed to get used to having them on. Surprisingly, they didn't need to put any new bandages to replace them. We thought they may dress it with a smaller bandage, but they just leave it open. The area they took the skin graft from has a bandage stitched in place, but the ear canal is layered with all kinds of packing. The only thing we have to do is place a small piece of cotton ball in the canal and it stays in place. She has not needed any medication for pain all day and she is very energetic. She had no trouble with pressure changes on the flight from San Jose to Long Beach.
We mentioned to Dr. Roberson that she told us several times that she can hear out of her new ear. He said he wouldn't be surprised by it. Although, he said the surgery was quit tricky and her anatomy made it difficult, he was optimistic with the results. Last night, Lauren asked Becky to listen to her new ear. Becky put her ear up to hers and Lauren asked her is she could hear what she was hearing. We told this to Dr. Roberson and like us, I think he teared up a bit. You can tell he really enjoys working with kids and loves what he does. He is amazing. He gave us instructions on how to proceed with her medication and activities for the next few weeks. Next week we will see an E.N.T. doctor in Draper and he will remove the first layer of packing and also the skin graft bandage. Dr. Roberson says that the skin graft area could heal as quickly as one week. In the meantime, we are just to give her some antibiotics and make sure she keeps the new ear canal clean and dry.
Well we hope there are no troubles on the way home. We had some difficulty with our Standby fight out of San Jose. They seemed to have processed our names incorrectly, but they fixed it and we boarded just in time. I don't anticipate any problems from here on out. Hope to see all of you soon.
Tuesday, January 27, 2009
Lauren slept through the night and didn't take off her new bandage wrap. She is starting to get used to it now but it does slide down over her eyes from time to time. We started her on the antibiotics that was prescribed by the doctor. She doesn't seem like she has been in any pain today so we haven't had to give her any medication. The doctor just recommended normal Tylenol if she needed it. She is in good spirits but just a bit tired. Overall, she is doing better than we both thought she would be doing. She even mentioned to us today that she can hear out of her new ear. We are hopeful that is the case. It would still be limited especially with so many bandages and packing in her new ear canal. Either way, she says she can hear which makes the trip here worth it. Again, we won't know for sure until she has another audio-gram in a couple months.
Monday, January 26, 2009
I was hoping to post something earlier but I haven't been able to until now. At about 12:30, Dr. Roberson came and spoke with us. He said they were finished and told us she did very well. There was no complications during the surgery and he said it went as planned. We asked him specifically about the facial nerve and middle ear bones. The facial nerve, he said, was a non-issue. He said he never encountered the nerve during the surgery and it seemed it was far enough away from what they were doing to not cause a problem.
As for the middle ear bones, he said they were very deformed. As is the case in most Atresia patients. However, he said it was all in one piece and seemed to be very stable in it's connection. He also said it has good movement and he feels it should be able to function normally despite it's deformity. The placement of the ear drum and skin graft for the canal went very smoothly. Although he is unable to tell us for sure if she will be able to have improved hearing, he feels the chances are good that she may have good improvement. We won't know for sure until some time has passed. They won't test her hearing again for two months.
Lauren did so well before, during, and after the surgery. All the staff wanted to stop by and see the pretty red head they had been hearing about. She was pretty groggy coming out of the anesthesia. We had to sit with her for an hour before she was able to gain more consciousness. After that, she was awake enough for the hospital to discharge her. We drove back to the hotel and put her in bed. However, within thirty minutes, she pulled off the dressing and bandages around her head. We were told this had to stay on until Wednesday. Needless to say, we weren't ready to see her wounds just yet. We tried to put the bandages back in place but we were worried it wasn't correct. We called the doctor and told him what happened. He recommended us driving back over and they could wrap the bandages again. They did the re-wrap and we drove back to the hotel.
She is going to be pretty tired for the rest of the day into tomorrow, but she seems like she isn't in much pain. It has been a long day for all of us, so we will probably get to bed early tonight. Tomorrow is another recover day. I don't think we will go anywhere unless Lauren insists. We will be meeting with the Doctors on Wednesday and if everything checks out well, we will head for home in the afternoon. We hope this has helped keep everyone updated on her status and we thank all of you for checking it and to those that left supporting comments. Lauren especially thanks you.
Lauren (40263) is still in the operating room and the update board hasn't changed. We have had the nurse call us twice to give us updates. Both were positive. The latest update they said they should be finishing up in another hour. Everything has gone as planned. The two concerns regarding the facial nerve and the middle ear bones have not been mentioned so we hope there hasn't been any problems there. We are assuming not. After the surgery, we will have to wait maybe another hour before we can see her.
We are sitting here in the waiting room and there is not much to do so I thought I would type a quick post. We arrived early at 6:30 AM and checked in. At 7:30, they moved us into the Pre-Op room. Lauren changed into her gown and they did a quick check of her vitals (i.e. blood pressure, temperature, and heart rate). We met the nurses that will assist with the surgery as well as the anesthesiologist, Dr. Ort, and Dr. Roberson. Lauren was very cooperative and just enjoyed watching cartoons as they came in and out of the room. They gave her some medication to drink and said it would make her drowsy. Within about 10 minutes her eyes started to get heavy and you could tell she was a bit loopy. At this point the operating room was ready and they told us we had to leave back to the waiting room. After really struggling through the first few minutes, we have settled in now and have been waiting for about 1 1/2 hours. They said the surgery should be approximately 3 hours. They have a large flat screen TV in the waiting room that you can watch what stage of the surgery they are currently in. It is really a great way to keep everyone educated with patient statuses and you feel like you don't have to ask every nurse or doctor walking by for an update.
Friday, January 23, 2009
Well we made it to California and we are excited to be here. We arrived yesterday with little trouble. Our standby flight went perfectly and we checked into our hotel room. They were very helpful and gave us everything we requested. We are in Fremont, California. It is about 15 miles from the Stanford Ambulatory Surgical Center. We have to cross the bay into Palo Alto to get to the hospital, but it should not take too much time getting over the bridge.
After our travel yesterday, we spent today mostly relaxing. The only appointment we had today was at the California Ear Institute for a pre-op meeting. Before the meeting, we spent a lot of the day around Stanford University to find out exactly where the surgery will take place. The weather has been bad all day. It has been overcast and drizzling rain. The locals said it has been very dry and warm until this week. I guess we brought the Utah weather with us.
During our appointment an audiologist gave Lauren a hearing test. We have had a few tests done before, but not here. They tested different decibel levels for both ears to graph her scores. Her non-affected ear scored very well and this is where they set the bar for her in regards to her normal hearing range. The other side, as expected was lower, but the doctor was surprised at how well she scored. In terms of numbers, she scored as low as 5-10 decibels on the normal side and 40-50 decibels on the Atresia/Microtia side. They said her scores are considerably good for a child with atresia.
After the testing, a Dr. Ort examined Lauren briefly. He may be one of the doctors assisting Dr. Roberson on Monday. He proceeded to explain the surgery and answered any questions we had. He told us of all the risks associated with the procedure. Foretunately, most of them seemed so rare it really eased a lot of our concerns. The procedure he described was exactly as Dr. Roberson explained to us at the conference in October. In all, the surgery should last about 2 1/2 hours. We were told that we must be at the hospital at 6:30 AM PST on Monday. The surgery is scheduled at 8:30 AM. She is not to eat anything after midnight the day before the surgery.
The doctor said that as soon as she regains consciousness after the surgery, she can be released from the hospital. He also said she should not feel too poorly after the surgery. She will be heavily bandaged for the first couple of days, but on Wednesday, the large bandage will be removed and we will be released to come home. They are not concerned about her flying home and they feel it is actually better for her to fly home this week than to wait. The protective packing and gel foam that they will use to plug the new ear canal will protect her during the trip. She must keep this packing in the new canal for three weeks. Some of the packing will be removed a little each week, but it won't be fully removed until after about a month. We have planned to have an E.N.T. doctor locally removing the packing. He was recommended by another family that had their daughter complete this surgery not too long ago. We will have to give her antibiotic drops into the new ear canal to prevent infection and occasionally change some outer dressing.
It is unknown how soon after the surgery we will know if it improves her hearing. It could be immediate or it could be a couple of months. After the packing has been removed and some healing has taken place, they will retest her hearing again to see what the improvement will be. However, I think we may be able to recognize that ourselves. There are two things that can't be determined until the surgery and that is the location and proximity of the facial nerve and the condition of the middle ear bones. Dr. Roberson, after reviewing the CT scan, doesn't feel like the nerve will be difficult to work around. However, if he does get in there and finds it will be a problem, he will stop immediately and will not continue if there is a danger of damage. The other is the condition of the middle ear. The doctor today said that in all Atresia cases, the middle ear bones are not fully formed. This is one of the main reasons she would never have 100% hearing in that ear. During the surgery they isolate the middle ear and check to see it's condition. If it is in a good working order, they will leave it to work as it should. If it is poor condition they could remove it and replace it with a titanium implant.
The new canal will be formed behind her Microtia ear. They will take a graph from some muscle tissue near this same location to use as the new ear drum. The top layer of skin from the back of the scalp will be used to graph in place for the new canal. It will be about a 3 inch by 3 inch area. The doctor said she won't have to lose too much hair and the rest of her hair should cover the graph area. Since this graph is the top layer of skin, it will not contain hair cells so they can use it for the ear canal. The rest of the pre-op visit we signed forms, completed paperwork, and worked out the financials.
Overall, Lauren is in great spirits. I think she will do fine. We are optimistic that the news will be positive after the surgery. The goal is to improve her hearing under the 30 decibel range. If this is possible, she will not need any hearing device in the future. It will never be as good as the non-affected side, but it would allow her to hear and develop normally. The rest of the weekend we are going to try and do some sightseeing if the weather permits.
We really miss the rest of the family and hope the other kids are doing well. Lauren really misses them. They are not here to play with her so we find we have to fill in and we don't have the same energy that Cameron or Kara have. I plan to try and put updates on here daily. Especially right after the surgery. We thank all of you for your thoughts and prayers.