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

Waiting

So we finally made it to the room around 4:15. Everyone in the ER were so helpful but we basically were simply waiting on a room to open. Greyson finally napped a bit and even slept through the ride up to the room in the wagon (picture to follow).... It was tooooooo cute. Of course all the nurses love him and he gives the tons of smiles.

He is all settled with an IV, toys, and a Big Bird movie. Now we wait again for his MRI. They tell us it will be tonight (late) but who really knows. We are keeping our fingers crossed that this will give us some answers.

More later,
Brooke

Getting Admitted

The doctor called us this morning to let us know that there were no openings for outpatient MRI this week and he wants it done this week. Sooooo we are at Children's Mercy Emergency Room waiting to get admitted so they can do the test this evening.

Looks like another night in the hospital for the three of us. Greyson seems happy for all the new thing to look at and play with. Besides not being able to use his right arm he is as happy as ever. He is running around the gurney now holding Michael's finger and yelling.

We will stay in touch.
Brooke

The Unexpected

Not sure what else to call this....it seems that Greyson is having some sort of "flare up". His growth area seems to be swelling a bit and for some unknown reason he is not able to use his right hand. He seems to be a bit tender in his armpit area. He has some blood vessels in his shoulder area and on his back and under the incision area showing through his skin as well.

We took him to KC to see Dr. Jiang at 1pm today (after texting him at bedtime Monday night). He ordered an ultrasound today to rule out artery/vein issues and we are in the process of scheduling an MRI for later this week.

Hopefully we will figure this problem out soon. We will keep you all posted. On a happy note...he is walking. :)
Brooke and Michael

June 2011 Follow-Up Appointment

We met with the plastic surgeon and radiologist at Children's Mercy today for a follow-up appointment for Greyson. They are very pleased with his progress and how the compression garment is working. Our main goal for the appointment was to talk about when his next surgery would be and Dr. Jiang said he felt like December would be good. His plan is to keep working on contouring the part of "Buddy" they left and possibly see if the can fix the spot in Greyson's middle finger.

Dr. Rivard suggested we go ahead and take Greyson down for ultrasound so that we wouldn't need to come back for that in the near future. They were able to fit him in and found that there were no large cysts. This means Greyson won't need any additional sclerosis (which was what we were hoping for).
While we were there we stopped by the OT/PT clinic and picked up another Under Armour. This one is fitting much better than the green tie-dyed one. The fingers on the green one are way too long. They are going to get that fixed and hopefully get that to us soon.

Greyson is doing so great. He has mastered crawling and found a new independence and perspective. He now seems to know what he wants and gets frustrated quickly when he realizes he can't get it. He really wants to walk but it is still a bit off. He hasn't quite figured out balancing yet.

I believe I have found a blog option to change Greyson's stuff over to and will only be posting "medical" updates here after I get that set up. There should be a way that you can subscribe by email (much like CarePages) if you want. I will make a post to give you all the details soon.

Take care,
Brooke, Michael & Greyson