Nerve Clinic Appt. & Second Opinions Successes

We can’t believe it has been almost a month since our last visit to Children’s Mercy. Greyson is getting better with walking and has learned how to show us what is in his mouth, point to his teeth and tongue, and can follow directions such as taking things to his room. He has perfected throwing food and his sippy cup off his high chair tray and is becoming a bit pickier with his food.
To remind you (or catch you up)…last we learned Greyson developed a new growth in his shoulder behind his collarbone, which is unfortunate because now it is inside his chest cavity where it might (and has) interfere with other things. His right arm had stopped working and after an MRI, the doctors decided that it must be pushing on his Brachial Plexus (set of nerves that come off the neck and go down in the arm controlling all movement in the arm). They decided to drain the largest of the cysts thinking it was the main issue and then we waited for results.
Within the first week he had regained most use of his shoulder and elbow and within two weeks he was partially able to extend his pointer finger but since then his progress has seemed to plateau. He cannot extend his fingers or use his wrist.
We requested second (and third and forth) opinions from doctors at Children’s Hospitals in Boston, Cincinnati, and Columbus and another specialist in New York. Did I say we have been waiting and waiting and waiting….calling and calling and calling…. Trying to be nice and appreciative to any help they can give and see what options there are to help Greyson.

Finally last night, Dr. Spaeth, a doctor with Nationwide Children’s Hospital in Columbus, OH (specializes in Brachial Plexus injury and Lymphatic Malformations – what G has). When we were first contacted by her nurse it seemed like the perfect fit. She has a very positive outlook and we will talk with her in the near future and see what she might be able to do for Greyson. We met with Dr. Jiang, Greyson’s plastic surgeon in KC, and talked about Dr. Spaeth’s ideas as well as some from Dr. Adam’s in Cincinnati, OH Children’s Hospital. She is running a trial with a cancer medication that seems to be working for some with his condition. She is going to get back with Dr. Jiang to let him know if Greyson would be a match for her trial. We found a direct number to a doctor at Boston Children’s and will continue to “bug” them for their opinions.

We took Greyson to the Brachial Plexus Clinic today and met with a Rehab doctor and Occupational Therapist. They did a test to see if his nerves are sending messages to his muscles and determined that they are, but he needs more time to heal. We learned that when nerves get damaged they have to “re-grow” their connections and that rate is 1mm a day. They said for a child his age it could take between 3-6 months for that to happen. Unfortunately the test uses needles and you have to be awake so that your muscles will respond. They told us the sedative should hopefully keep him from remembering what happened.

The Occupational therapist evaluated him and they are giving us strategies to help him regain use of his hand. He has a wrist brace to keep his wrist in a neutral position so that muscles are not damage because his wrist lies limp and so that he doesn’t injure it worse falling on it.

We look forward to hearing from more doctors in the near future and will let you all know what we decide is the best plan for Greyson.

Brooke, Michael, & Greyson

Still Waiting for Second Opinions - Update

It seems that second opinions don't come quickly and we are practicing our patients. We have in requests to the Vascular Anomalies clinic at Boston Children's Hospital and Waner Children's Vascular Anomalies Foundation in New York. We also hope to get a request into a group of doctors at Nationwide Children's Hospital in Columbus, Ohio. With all of these doctors looking at Greyson's case we hope that someone will have a plan that is best for him.

In the mean time, Greyson's arm is improving little by little. He can now push off with his right arm and tries to use it most of the time. His wrist is still not working for him and his fingers don't have much strength but he can grab onto things and it doesn't slow him now much.

We are waiting for an appointment for Greyson with the Brachial Plexis Clinic (a group of doctors that work with kids who have nerve damage in their arm) in KC on Sept. 1. We took him to the lake today and he loved it. Next week Greyson and I will be going on his first plane ride to New Mexico to spend some time with Grandparents.

Take care. We will share more when we have more information. Thanks for the support.
Brooke (Michael & Greyson)

Monday Appointment

We just met with Dr. Jiang and have decided that sclerosis isn't going to be the plan of action today. Because Greyson hasn't had considerable improvement in his ability to use his arm/hand it isn't a great idea to cause more inflammation to the area and possibly cause more problems. Dr. Jiang feels that getting the second opinions from Boston and New York will help decide the plan of action. He is going to have the drain tube taken out in a few minutes and then we will go home. Now we wait and hope he is able to use his hand more each day. Greyson has an appointment with a nerve clinic on September 1. We hope to learn more soon.

Greyson doesn't seem to be in any pain. If you saw his smiling face you wouldn't think anything was wrong. His arm and chest area are a little swollen but not too bad. He is as happy as ever (has been the whole time) and has figured out how to work around his arm issue. He can use his shoulder but he can't lift his wrist or extend his fingers. He can grip with his whole hand but cannot touch his fingers and thumb together. His arm seems weak in general. What we have been told is that when nerves get damaged it takes time for them to fix themselves. We hope that will be less than more.

We will post as we learn more. While this is a surprise it is not unexpected for Greyson's condition. There is no way to fix what he has but we will deal with things as he grows. We do look forward to the day when he can tell us what is going on.

Thanks for everything.
Brooke, Michael, & Greyson

Home for the Weekend

The doctors have all been in for rounds this morning and here is where we sit...

We are breaking Greyson out sometime this afternoon. Dr. Jiang and the radiologist are good with us going home for the weekend since we have experience with drain tubes. We will monitor his use of his arm/hand and come back Monday for sclerosis if all is good. If not then we will come up with plan B.

In the meantime, Dr. Jiang is looking to get a second opinion from the Boston group and we are trying to get a third opinion from a doctor in New York. With the new growth inside the shoulder/collarbone area being so close to other things like nerves then they need to see what other interventions might be available.

We are waiting on one last consult from neuro and tons of paperwork so might me out of town before rush hour traffic. Greyson is in a great mood and ate like a horse this morning and is napping now. We will update as things happen but hopefully that means when his mobility is back and after sclera on Monday.

Take care of yourselves. Thanks again.
Brooke & Michael

Time for Sleep

Greyson just fell asleep after a fun night with food and a set of grandparents to entertain. This gave Michael and I some time to go pick up some clothes and have a good meal. The cafeteria wasn't cutting it today.

Greyson had the procedure this afternoon and the radiologist was very happy with the results. They put Greyson under and then, using ultrasound, found the large cyst under/behind his collarbone and drained it. They put in a drain tube and now we wait. They feel like due to the position of the cyst the likelyhood that it was compressing nerves is pretty good. It could take between 24-48 hours for his hand to start working again if that was the problem.

We will see all the doctors again in the morning and will hear what they think. If this works then the plan now is to sclerosis it on Monday but we know how best laid plans go :) and we will continue to be flexible.

Good night to you all.
Brooke & Michael
PS- pictures coming tonight.

The Plan

We have seen all the doctors today, including the close to 10 med students this morning, and we now have a short term plan. They all showed up when i was hanging out holding a napping Greyson in his bed/crib. Pretty funny - ;) pictures to come I promise.

Sooooooo.......Dr. Jiang and the radiologist have identified what the think is the problem. They believe based on the MRI results that there is new growth to Greyson's Lymphatic Malformation since the last MRI in October. They think that the new growth is putting pressure on nerves and that that might be the reason his arm/hand is not working like it should (it is limp and weak from the elbow down).

The good news is that it is largely macro-cystic, meaning it has many large cysts, which could possibly be treated with sclerosing (what he had done twice before his January surgery). Both of those treatments were successful in shrinking buddy so this could be good.

The unfortunate news is that the new growth is inside his chest wall intermingling with nerves and touching stuff like part of his lung. Dr Jiang says that that means this new growth area can't be operated on. It has also grown fairly quickly.

The plan today is to go in and put a drain in the new large cysts and drain them to see if his arm/hand control comes back. This could take between 24-48 hours since nerves don't just bounce back. If it works the will go back in the drains and do sclerosis to make it more "permanent". If it doesn't have any affect then there will be a plan B.

In the mean time dr. Jiang is trying to get a second opinion from the Vascular Anomalies group in Boston and we are trying to get a second opinion from a group in New York.

Thanks for all your support. We appreciate it all. I will send out another update after this afternoon's procedure. Take care.

Brooke & Michael

Calling it a Night

Greyson came out of the MRI around 10 pm with no problems. He was wide awake and happy of course.

We got back to the room and got him some cheese, apple sauce, crackers, and pudding. The nurses all thought I was crazy when I got into bed with him to help him relax but I think he likes it. One nurse even laughed as she said she had never seen a mom do that before.

After much coaxing he is finally resting (although I don't think he is actually asleep yet) and Michael is snoring. Dr Jiang and the other doctors are supposed to have some results for us in the morning. I better see about getting some sleep. More updates and hopefully some pictures in the morning.

Brooke