March 26, 2008

She Just Had Surgery... Really

I know, I have said it before, but kids are amazing.

Isabella's surgery went over without any issues. They got in there, found exactly what Dr. Grin had been talking about which really made me feel better after the first appointment that we had. Dr. Russell said that they were going to remove it and it shouldn't take too long at all. For over anxious parents, long is a very relative term and for the next hour or so, Misty and I spent our time trying to read, play solitaire or just talk. None of it worked; we were too preoccupied. Dr. Russell came out and told us that everything had gone fine and that Isabella was in first stage recovery and that they were going to let us go back shortly. No too much longer went by when one of the recovery nurses came in and called our name. Misty rushed out the door and down the hall and I tried to keep up carrying everything that was left in the waiting room. As soon as we turned the corner into the recovery area, we could hear Isabella screaming. Misty rushed in and got Isabella and, just like it always has, the screaming stopped.

First stage and second stage recovery went quickly. The doctor came by to tell us that they had only shielded her so she would still be able to see and when we were ready, we could take the shield off and put on her glasses. Not too much longer and they sent us back to the Ronald McDonald House for what we figured was going to be a long day. It wasn't too long after we got in that Isabella started fussing. I wasn't to surprised because it had been 14 hours since she had eaten anything. We got out some snacks and took off her arm splints and let her start eating. She wasn't doing any of it visually, so we decided it was time and took off her shield. At that point, other than looking like she had been in a bar fight, she started acting normally. Crawling around, playing and singing; just like normal. We actually had people ask when her surgery was scheduled for after we had told them she was there for surgery.

This week she has been just like normal. Being herself and doing her therapies. We have to keep telling ourselves, and everyone else, that she just had surgery. Not that I'm complaining that this has been easy, its just odd to have one that is this easy.

March 18, 2008

First Time For Everything

It has been a really long day. We were up early to get on the road to get to Iowa City for Isabella's first appointment at 3:00. We had left in time that I expected we would hit town at 2:00, but I have a bit of a lead foot and we actually rolled in at about 1:30. Managed to miss getting a ticket, but I did have a trooper wave at me once. I figured that was a good enough warning to shave about 5mph off of my speed.

Since we had some time, our first stop was Iowa Eye Prosthetics to see if Vaugn could work her magic on Isabella's eye. She took it out, put it under a magnifying glass and then looked at us like we were nuts. She said that Isabella probably would have been more comfortable with a rock in her eye and then went back and polished all the tooth marks and scuffs off of it. She put it back in and then we discussed our options for a new eye. Isabella has had this one for about seven months and she is starting to grow out of it a bit. Based on that, and the fact that they are going to be dropping our insurance at the end of June, we decided that we should make an appointment pretty soon to get a new eye made. We'll be back up here for another two day fitting and painting session in the middle of June.

After we were done there, we went over to the hospital for our next set of appointments. The first thing they had us do was to go through the standard pre-op procedures... height, weight, etc... After that, we went back to see Tom, the ocular stenographer. Isabella was very good and let him get all the pictures that he needed to take of her retina, ocular nerve, shunt and bleb. We could see that her retina was attached and sitting pretty at the back of her eye. At this point, we went to the retina clinic to meet with the doctor that was going to be handling all the pre-op work on that side. The important thing here is that this is not the same doctor that will be doing the surgery tomorrow. This was one of his colleagues.

This is where the first came in... This was the first time that I have been less than impressed with how things have been handled with Isabella's case at the University of Iowa. The doctor that came in was not familiar with her case, so I can understand that it would take a few minutes to get up to speed. I also know that they were understaffed and he was rushed to get through his caseload today.

The doctor came in, looked through Isabella's chart and began to dictate to a med student that was with him at the time. During all of his dictation, I heard him say that Isabella had a detached retina. Now, I'm not expert, but I'm pretty sure that we saw the ultrasound and saw that her retina was exactly where it was expected to be. In fact, Tom even gave us a print out of her retina and pointed out where it all was. At this point, the doctor did a binocular indirect exam (the one where the doctor puts on the mining helmet thing and looks through a very big lens to see the back of your eye). He dictated to the student what he was seeing and told him that he saw a possible shallow detachment. At this point, I confronted the doctor to ask what he was talking about. He told me that Isabella had a detached retina, but he could not see where she had any choroidal swelling. It was at this point that I figured out he was looking at the report from back in October and told him that. At that point, he said, "Oh, you are right" and changed his notes to say that there was no detachment. From there on out, it went downhill. He told us that he really didn't see any reason for them to do anything more than the exam under anesthesia tomorrow and that they wouldn't do anything else. I asked him about the membrane that we know is there and he said that there wasn't anything there and that was pretty much the end of the conversation.

We left the hospital and my first reaction was to call Dr. Grin's office and let her know what was going on. She was out of the office, but they called her to let her know what was going on and very shortly thereafter she called me. I gave her the whole story about what was going on and she said that she needed to call and talk to them. About 15 minutes later, I got a call back and she said that she had spoken to the doctor to find out what the story was. She explained to me that she had previously spoken to the doctor that was going to be doing the procedure and that he was fully aware of the situation and that this doctor wasn't looking for what she was looking for. I got the distinct impression that she may have given this doctor a piece of her mind and I can honestly say if that is what happened, I don't envy him at all. Dr. Grin gave me some advice on how to handle things tomorrow and then told me that if anything at all comes up tomorrow that we need her assistance on, to call her and she will do what needs to be done.

So, we are approaching tomorrow with some additional trepidation... That's nothing completely new, there is always something. I'll be sending out text messages tomorrow to keep everyone posted and will make sure to post a complete writeup of what goes on during surgery tomorrow.

March 17, 2008

I'm tired...

It has been a very long time since I have posted anything out here. I know this... In fact, I am frequently reminded by grandparents, aunts, uncles, friends, colleagues and a great-aunt that, once a week, reminds Misty that she really likes the way I write. So, here I am. Hopefully to stay longer than the last time I said that I was back.

Lets start with Noah. Fourteen months ago, he was just getting rolling in kindergarten. He sprinted through kindergarten and is almost done with the first grade. He really enjoys school and, for the most part, continues to stay out of trouble. He is seven, so "out of trouble" is a relative concept, but we haven't been pulled aside by the teacher or principle too many times. Despite the general insanity that occurs in our house, he has turned out to be a pretty typical seven year old. He loves Spongebob and Guitar Hero and tries to get out of his homework as much as possible. He has definitely taken on a lot of curiosity from me, which I dearly love to watch. He experiments with new things all the time. Last summer, he was convinced he wanted to be a biologist when he grew up, so we spent a good chunk of time wading through puddles and turning over rocks looking for anything creepy and crawly. He still maintains a healthy collection of toads in his room as well as a skink and a hermit crab. If it were up to him, he would have thousands of critters in his room and I would probably let him do it. Misty has set him to a maximum limit of cages in his room, so we are stuck for now. Recently, he has gotten interested in electronics. We have built a few projects and he is constantly on the lookout of bigger and better things to try out. The only minor mishap was when he decided to find out how hot a soldering iron really was after I told him it was too hot to touch... one small burn and blister later, he now knows that its not something to touch. Natural consequences.

Isabella... Now, she has turned out to be a handful. When we last left the saga, she had slightly elevated ocular pressure, but everything was on a pretty smooth course. By now, I should realize that any time I feel like things have smoothed out, its time to start looking for the next shoe to drop. Isabella's ocular pressure continued to creep up to the point that she was in the glaucoma range. We started drops for that and everything levelled off for a while. Then, her pressures started back up again. At that point, we were on for another trip to Iowa to have a shunt installed in her eye to help alleviate the pressure. It worked well and it seemed we were back on the smooth course. Then, the shunt started to work to well, which dropped the pressures way too low and allowed the internal structures of her eye to swell up and completely block off her sight. Another trip to Iowa, some change in her medication and after a few weeks, things mellowed out and her sight came back. That was back around Thanksgiving. Since then, things were improving... We were down to one drop a day and it seemed like we were charging forward. That was until about two weeks ago. During a routine eye appointment, Dr. Grin told me that there appeared to be a membrane that had grown across her visual axis and that it was restricting her vision. The impact on her vision would be similar to driving down the interstate a few days after a snowstorm without and washer fluid. You can see, but it isn't that great and it gets really annoying. Isabella has been very annoyed recently... She tells us by taking her glasses off and handing them to us as if to tell us that they aren't working the way she wants them to. So, tomorrow morning, we are going to be back on the road to Iowa for yet another surgery. We have been told that this should be a pretty simple surgery and we should expect her to recover pretty quickly.

Aside from all of the eye things, the changes in Isabella have been amazing. She is very close to walking right now and was put into orthotics last week to help straighten out her ankles. That has helped her take a few independent steps. She gets so excited that she is walking that she falls down, but its a start. She isn't really talking yet. Well, not English anyway. She speaks Isabella and Misty and I are her translators. She loves to sing and probably spends more time singing than she does talking.

Misty and I spend our time directing traffic, making sure everyone gets where they need to be when they need to be with the right clothing and full bellies and in general trying to organize chaos. Misty and I get a lot of comments about how strong we are in dealing with all of the stress that has been dumped upon us... I don't think either of us feel particularly strong, we are just doing what we need to do to make sure that both of our kids get what they need... They don't see what happens when we finally get a chance to slow down and consider what all is going on; there is usually at least one of us losing it at the time. Misty is amazing... She keeps everything held together while we deal with the insanity. All while working, going back to school and making sure that we all have clean underware. She hasn't changed much in the last 14 months; she is still the same amazingly strong woman.

As for me, I'm getting older and greyer. Eventually, we will reach a truly smooth path, but until then we'll keep running at full speed regardless of how we feel.

Me, I'm tired...