About a month ago I got an unexpected call from Miles’ pediatrician, Dr. Wiley. He called because he wanted to have a sit down meeting with Randy and I to discuss all the questions that we have about Miles. He told me that he wanted to “hear my heart” about all the things going on with Miles. He said that it would be great for us to have an unlimited time to talk together and make a plan for Miles. I thought that was a great idea. Dr. Wiley is an amazing man. I’m so thankful for how great he has been to our family. He’s been our only pediatrician for all of our children. He is a wise man of God.
Well, today was the big meeting. I had my huge list of things to talk about. I had my “Top 3” written down and a few other concerns so I thought I would share them with you.
Meeting with Dr. Wiley questions and concerns:
My Top 3 Concerns
1. His body tone
*Is Artane what he would suggest to control Miles’ tone?
*Can we possibly keep his body from being twisted?
*Should we request Botox from Dr. Marks (neurologist) in January?
Answers: I should ask Dr. Marks for the Botox for Miles. Also I should talk to Dr. Marks about increasing medication.
*Should we even try to stop them?
*He varies from not having any visible seizures to having 15-20 a day.
* Strange things seem to trigger the seizures-change of environment, temperature, too sleepy
We need to talk to Dr. Marks on next visit about how many seizures a day or week would be a realistic expectation for Miles to have. Dr. Wiley does not expect that Miles will be able to be seizure free. He thinks that we need to have realistic expectations on what is the norm for Miles to have. For example if Dr. Marks says that for Miles to have 1-3 a day or 1-3 a week then we will know if he has that many everything is still fine. Of course having seizures is not fine, but with the damage to his brain…nothing is fine. He also said that there are so many medications that could control seizures. He said that we would have to decide how deep into medicine changes we would like to go. Miles is taking one medication twice a day right now to control seizures. Dr. Wiley said that he could be taking three medicines a day to try to control them and not have any better luck than we are now. His take was the less the better, but ultimately it was up to us. I agree with him on less is better.
He talked about how change of environment and temperatures were normal for causing seizures. The thing is that we are a very busy family, and trying to avoid going places so he won’t have a seizure is pretty ridiculous. We can’t seem to do anything to prevent the seizures so we’re just going to move on with life and deal with them when they come on. Miles had one in the office today with Dr. Wiley. We paused and then continued with the appointment. I hate them, but right now I don’t see that there is anything we can do.
Randy asked if the seizures are further damaging Miles. Dr. Wiley said that Miles’ brain is damaged. There are parts of his brain that are missing. As far as the injured part of his brain it can’t get more injured. The parts that are left can be taken away by seizures. The seizures could delay what development that could occur if the seizures are as out of control as the 15-20 seizures a day.
Anyway, a lot of that seizure and body tone stuff we will talk to Miles’ neurologist in Ft. Worth next month.
3.Avoiding the Feeding Tube and Nutrition
*Right now the spitting up is little to none. It varies from little to almost all his food.
*He eats fantastic by mouth. He eats solid foods about 4 times a day. It takes him awhile to eat, but he gets it down.
*Fluids is a little tricky, and this is what he seems to have more trouble with. The Thick It is helping.
*Is it possible or probable that he will be able to avoid getting a feeding tube? I guess I need some encouragement that it can be done or I need to be told that it’s the best thing for Miles.
*How long before I can’t give him a bottle for liquids? And then what?
He needs more liquid that he’s getting right now. He needs 24-32 ounces a day. (This might be difficult!) Is it possible for Miles to go without a feeding tube? Yes, as long as he continues eating well like he does. Also, as long as he does not start aspirating. If this happens then we will have to do something. Dr. Wiley said that it’s easy to tell that Miles is not malnutritioned. He looks good. He’s small, but that’s normal for the other kids like Miles. Dr. Wiley wants us to see a doctor in Ft. Worth in the next few months…no rush, but he wants us to see a gastro doctor so we can begin to build that relationship in case Miles ever does need to get a feeding tube. He thought it would be a good idea to get all the information that we can so that if that time ever comes that we will be informed and not overwhelmed. I think that this is a good idea.
Dr. Wiley said that he didn’t think Miles needed a feeding tube at this time, and he would tell us if he thought he did. This was encouraging to me! He respects that Randy and I want to do everything we can to avoid this procedure. Dr. Wiley also said that he doesn’t care how long Miles is on the bottle for liquids. He said, “The bottle is better than the G-Button.”
So, those were my 3 main concerns. I had a few minor things to talk about.
He’s been having nose bleeds, but Dr. Wiley said that was normal for this time of year. I got the humidifier/nose drops answer.
Also, he’s been having lots of ear infections, but Dr. Wiley wasn’t too concerned about that.
He did talk to Randy and I about discussing a DNR status for Miles. (How far we want to go in a medical emergency if he’s not breathing on his own.) That’s a rough summary I’m sure.
Then, the thing Randy wanted to talk about was what is Miles’ diagnoses. It’s been two years and we’ve seen a million things on charts describing Miles’ condition. Dr. Wiley said that Miles has Hypoxemic ischemic encephalopathy. Try to say that five times fast! Hey, try to say that one time fast! Well, that’s a mouth full. Randy asked if Miles had cerebral palsy. Dr. Wiley agreed that he did have cerebral palsy, but that diagnoses is a vast range of problems, with Miles’ cast the worse end of that that. Randy said that he didn’t care much for titles, but some people want to have an answer to what is wrong with Miles and he didn’t know what to say. Dr. Wiley told us that for the average person on the streets cerebral palsy would be just fine, and if they asked what else is wrong with him that we could say, “That’s enough.”
Since you’re not the average person I guess I can tell you that Miles is diagnosed as having Hypoxemic ischemic encephalopathy. Whatever.
One other thing we talked about today was the fact that he wanted me, not Christy to call the office when Miles is having new problems, old problems, or just a cold. It has nothing to do with Christy. They have a long relationship. He’s doing this with all his home health patients. He wants to stay close to the parents instead of home health becoming the main ones that he talks to. He thinks it’s important for him and parents to stay on the same page. I agree with this. I talked to Christy about this today and she took it really well.
So, that was the appointment. I left there feeling pretty good about everything. It was nice to get on the same page with Dr. Wiley. I didn’t leave there with any new revelation, but that’s okay. Randy and I were able to express that we are believing the best for Miles. We know that apart from God performing a miracle that things are not going to get better. We told him that we are believing that God is going to heal Miles, and until then we want to take the best care possible of him. Dr. Wiley totally agreed.
Before I go I thought you might get a kick out of a letter that Miles’ physical therapist sent with me to give to Dr. Wiley about her concerns for Miles. JoBeth is an awesome woman. I got a kick out of her medical letter that she hand wrote in my journal today. See if you can follow it all.
My main concern with Miles is the prevention of deformity. His spine position is worsening, he demonstrates axial rotation to the right, slight curvature, and I am worried about the position of the sacrum, his pelvis is really anteriorly tilted.
He also holds his head to the right a majority of the time when (word I can’t read)! He has calluses at the T-L joint and sacrum. He is being seen by me two per week for 30 minutes, he is tolerating prone positioning on wedge, and he has a Lecky Advance Seat, wheelchair, and standing frame (but is not allowed to use it at this time). He wears braces on his feet the majority of the day and of course his hip abduction brace all day except 6 hours.
Miles loves working on the Swiss ball.
Progress is slow, but he is tolerating everything we do.
Feel free to call me for anything.
Anyway, there is my medical moment for the day. Please don’t forget to encourage me in some way. I was glad about the whole thing, but I came home and crashed on my bed after such a long and serious appointment. Our appointment was at 11:00 and we got home at 2:00. Just say things like…It’s going to be worth it, and this is the reality but it’s not the truth, and I’m a good Mom, and stuff like that. I don’t mind spoon feeding you responses! :)