Stuff

Well, the Mini was not the answer we were looking for. It was IMPOSSIBLE to use and the leakage was as bad (maybe worse). We went back to the Mic-key a few days after trying the Mini. I am waiting to hear back from the surgeon's office to see what they want us to try next. I was really hoping it was going to fix things. Oh well :(

Casey had just gotten over the fussy phase of recovery from her surgery when we switched her to the Mini. As soon as we switched she got all upset again. Nothing seemed to help. I think the way the Mini fit may have actually been uncomfortable for her. After we switched back she has been much happier.

So far we are waiting/watching for Botox results. Her hands are much looser, and less sweaty. We have not seen much in her legs at all. It is hard to say if the salivary glands have been changed or not. She has been so fussy off and on since we got home. When she is upset it makes them really bad. When she has been happy I think they are a little drier. Her nurse said her chest sounds drier too. The doctor did say she may have to go through a few rounds before the dose is enough to really see. Ugh!!! Medicine is supposed to be black and white. I hate the trial and error approach. It is better than doing nothing at all, but still.

Casey had her 2 week post-op with ENT this morning. The right ear looks great. He did clean out her left. We have to go back in 2 months to have it cleaned out again. She HATES to have them cleaned out. They use a little vacuum device to do it. I am sure I would hate it too. After 2 months we will decide if 2 months is enough/too much time between visits. Depending on how much he has to clean out on the next visit will determine if she will have to come in more frequently or not. We are doing everything we can to help keep it clean and dry. As much as she hates to get them vacuumed out, and as much as I hate taking her in for that, it does beat having to have a big reconstructive surgery. The longer we can put that off the better.

Casey's boyfriend is coming over tomorrow morning. We have not seen them since we left California. I am sure she is going to be excited. I will get some pics and try to post them over the weekend. As always, we hope everyone is doing well.

GTube Updates

A few days before surgery Casey met with a surgeon to discuss her G Tube. It had been leaking so much and the site didn't want to heal. The surgeon does not want to rush to have the G Tube redone. That's a major surgery for anyone. Then when you add Casey's pulmonary issues it is a really huge surgery. We did not want to rush into it either. There are a few other low profile tubes that fit different. Casey was using a Mic-key from the beginning. The surgeon suggested we try a Mini. The way the balloon fits inside the stomach is supposed to help reduce leaking. If the Mini doesn't work then there is another one, but I don't remember it's name.

The Mini is new and not many people carry it yet. We found a place local that could special order it for us. It came in yesterday. The surgeon suggested that the night before we switch it out to take out her Mic-Key and leave it out over night. This would help the site tighten up a little. Then in the morning put in the Mini. That sounded easy enough.

Casey finished up her food for the day around 11:30 last night. About 1:30 I took out the Mic-Key. I wanted to give her food time to digest so it didn't just spill out everywhere when I pulled it out. Around 7 this morning I got her all cleaned up and put in the Mini. The water balloon port was really hard to get the syringe into. I thought I had it, pushed the water, and ended up just pushing the water onto the bed. I had to really cram it in there and hold it tight to get the balloon to fill. The Mic-key I could do in my sleep. The tips and ports fit so easy and perfectly. After we finally got the Mini on and the balloon filled Tim took Casey to start her breakfast. The extension (a plug that we put into the GTube that allows us to connect feeds, medicine, etc) was impossible to get into place. We had to really cram it in as well and hold it while we twisted it to lock in place. I really hope after a day or so of use that the port connection get easier to use.

Once we finally did get everything in it does seem to work okay. Casey had some leaking this morning. We will have to just watch closely over the next few days to determine if it does what we need it to or not.

Recovering & More

The first few days after surgery Casey was pretty sore. We had to keep her well medicated (switching between Tylenol & Motrin around the clock). After the 3rd day we were able to start backing off on how often we gave her the pain medicine. Yesterday was the first day she was able to go all day with out needing any. I hate to see her in pain. It just breaks my heart. She did really good though. I am sure if I had been poked that many times for all of her Botox sites, and then a tube in one ear and a mess in the other I would be pretty sore too.

The left ear that had the problems looked pretty bad. We have a little otoscope that we use and the right ear looked so pretty and the tube is placed so nicely. The left ear was swollen and bloody; it just looked awful. We had drops to use in both of her ears. Each day we could see big improvements. Her left ear is still a little pink and swollen. It looks SOOO much better though.

Casey had an EEG on Monday morning. The test came back very well. Each year she has improved on this test. She had a few slow points, but no spikes or anything to cause alarm. Her doctor called and said that it looked really good. Since Casey has been doing fine on her current seizure medication we are not going to rush to get her off of it. For now we will keep her on it on her same dose. As she has gotten bigger the dose has stayed the same. She used to have a fair to large dose for her size, but now the dose is considered pretty small. With everything else that she has had going on I am not in a rush to change things either. So for now we will just stay the course.

Since Casey was so fussy we ended up canceling her water therapy this week. She needed a few extra days at home to just rest. She has a not from her doctor saying she can get back in the pool. The only catch is that she MUST wear a plug in her left ear. We got her some plugs that she seems okay with. She can get back to her therapies next week. I am sure she will be happy to see Margaret.

This week has been nice. Monday Ken (Tim's brother) was in town for work and was able to come by to visit a little bit. Wednesday my uncle from New Hampshire came into town to stay with my grandparents. He flies into Austin so he was able to visit a bit yesterday before heading to Temple. My grandparents and uncle will be back for lunch tomorrow. Then Friday evening Molly (my baby sister) and her family (Scott & Riley) will be coming over. They are staying and heading back Saturday afternoon. Then Sunday my mom, John, grandparents, uncle and Megan (my other sister) will all come over for a Father's Day lunch - and of course to see how Casey is doing after her surgery. It is a family filled week for us. Tim has been on vacation this week too, so it has been great that he was able to spend some time with everyone.

Next week some of our friends (Casey's boyfriend) from California are in town. I am not sure which day yet, but one day next week we will get together with them. I can not wait to see what Casey does when she sees Patricio. She loved when he would come to play in Santa Monica. He has a baby sister now too. I think Casey will be so happy to see them. Tim and I will too, and his parents of course.

We go back on Thursday for Casey's 2 week follow up with ENT. We will be seeing a lot of them over the next few months. It sounds like we are going to have to go in every month or two to have her left ear checked and cleaned. She SCREAMED last time they cleaned her ear. He said it doesn't hurt it is just an awkward feeling and loud sound so kids don't like it. I am going to have to find something she loves to reward her with after those visits.

More Details (As Promised)

So the surgery overall went VERY well. Everyone involved was fantastic. We did not have to argue or even push the issue of intubation. Every agreed upfront that it was not the way to go.

Casey and I got up around 5 to get her medications and stuff going. We got Tim up shortly after. We got to the hospital right on time. They were ready for us. They got us back right away so that we would not drain the battery on Casey's suction. We got there at 8:30 and she was scheduled to have her procedures at 10. The doctors where both running a little late. They ended up getting there within a few minutes of each other. Casey ended up going back right around 11.

ENT went first to put in the tubes, then neuro followed with Botox. Ent came out to go over his findings while neuro finished up. Before he finished going over everything they were calling for me to go to recover for Casey.I was so happy that they got me back there so quickly. I actually got to the room before she did. It was about 11:30 when we were in the post-op area.

Casey of course was sound asleep. It took a little bit for the gas to wear off. All of the anesthesiologist came by to tell us how well she did. The nurses were ready for her too. The entire ordeal was just very well done. Other than starting a little late (which all surgeries do) everything ran like a well oiled machine.

There was a complication with Casey's left ear. The right ear was no trouble. The doctor said it was retracted, and there was a lot of fluid, but he was able to get the tube in place. However, the left was not so good. The left had retracted too much and advanced into some bigger problems. The left retracted so much that it caused a hole in her ear drum. If that was all then no big deal. Instead in addition to the hole she had some dead skin getting into the hole complicating things a bit. Casey's left ear has what is called a Cholesteatoma. For right now he wants to watch and see what happens. As Tim said "Play it by EAR". He told us that Casey is not in pain. As long as the hold does not start to eat away the ear bones she is fine. He cleaned out what he could. He was NOT able to put in a tube. We will have to go in a little more frequently for a while for him to check on it, and probably clean it out. If things get worse we can discuss having to do the bigger surgery later.

No rush on major surgeries. The minor procedures done today were stressful enough. As long as she is not in pain and there it is not causing other problems we are good just waiting. We will have to research this new condition and learn as much as we can. For now we will just keep it dry (lots of ear plugs in her future).

We should see the Botox kick in over the weekend. We are anxious to see how she does with it. The doctor said she can give her more next time if we need to. We will keep everyone posted on how she progresses.

Thank you to everyone for all of your kind words and warm thoughts. It really means a lot to us to know so many people care. We hope everyone is doing well.

Pic from recovery

Casey out of surgery

Casey is in recovery and doing very well - there is a problem with her
left ear so a small change of plans during surgery - more on that
later...

Everyone here has been great, and since intubation wasn't needed, we
should get to come home this afternoon.

Almost Ready...

We had a full morning/afternoon today. Casey had a 10:AM appointment with general pediatric surgery.

The surgery appointment went really well. We just went in to meet the surgeon and establish a relationship.

Casey's GTube has still been really leaky. The surgeon suggested we try another type of tube to see if it helps. As far as needing to have surgery to have the tube redone, not right now. She said she may need it next year or the year after, but not right now. We have enough on our plate right now with Friday's surgery. I was really glad it doesn't need to be rushed.

After we left that appointment we went over to the main hospital. We grabbed lunch and took Casey to walk around the park areas outside. Then at 1:PM we met with anesthesia to prepare for Friday.

The anesthesia appointment was a little more stressful. Having to go over all the airway concerns, history, etc is always a mess. It started out with the doctor wanting to go a much different direction, but once he heard all of the facts he came over to our point.

Now we just have to wait. Casey has water therapy in the morning then the rest of the day to rest and get ready. Friday we will be up super early to get all of her medications and stuff done before we head to the hospital. Casey has to stop fluids pretty early since she is going to be put under. We are still very stressed about the first procedure in Austin, but I do feel a little better now that I know anesthesia gets it and knows what to expect.

I doubt I will post again before her surgery. I will try post Friday after we are back home. If we are too tired we may just go to bed and post in the morning. As always we hope everyone is well. We will post more details soon.

-The pictures are Casey at the butterfly wall. In the waiting area in surgery they have a projected image of butterflies. It's kind of cool, there is a sensor that picks up on stationary objects/shadows on the wall. So while Casey sat there and cast her shadow the butterflies would land on her outline. She really seemed to like. She yelled at us a bit after Maritza and I took her back to see the doctor.

One down....

This is such a crazy week. Casey had an appointment with pulmonary this morning. She had her regular follow up as well as she had to get cleared for Friday's surgery. Everything went well at her appointment. She was mad and did not want to be there. We were in and out pretty quick. She got the sign off she needed so on to the next appointment.

We have a full week of appointments this week, then surgery is Friday. I will keep everyone posted as we get ready for her procedures.