Trip to the Big City

Last week we made a trip to KC for G's follow-up MRI six months after surgery. He was such a great sport and worked with everyone without a complaint. We were amazed at how much he has grown up since his MRI last year.

He had an OT appointment before going in for the MRI. The therapist was very happy with his range of motion and strength. She feels like the skin color and scar tissue will continue to improve for up to a year after surgery. We did order a new glove. He requested black with Batman on it. He earned the medal for being so good.

Greyson's MRI followed and took about 2 hours. The interventional radiologist read the scans after and didn't find anything he felt like needed to be taken care of now. He does have some tissue filling up in his bicep area but it isn't bothering him. We sent everything on to Nationwide Children's docs in Columbus, OH and will wait to hear what they have to say. If there will be any follow-up treatments we will let you know.

We finished up our trip with a visit to the bookstore...

and PF Chang's where G learned how to use his chopsticks...

...and he did a little reading on the way home. 

The day was fun for sure.
Brooke

Friday Morning Update (10/19)

Greyson had a pretty good night's sleep. He fell asleep around 7pm and woke for about 30 minutes at 11:30pm, then was awake again from 4am-6am, and finally woke up about 8am. He hasn't complained about much pain. He really doesn't like the splint that Dr. Spaeth made special for him. We told her it might be an issue so she wrapped the splint in blue tape with cars on it. He still isn't much of a fan. We found that if we covered it up along with the IV and other monitor with a blanket he didn't worry much about it as much. He even started covering them up.

Playing Peek-a-boo!

He has been unhooked from all monitors now and seems to be dealing with the splint better since he is now mobile. He just finished up breakfast and is playing here in the room. We are getting ready to head down to the new play room and let him have some fun before we check out.

The plan is to go to RMH by noon today and just hang out for a couple of days. Tralaine and Andy will get here tonight and we will meet up with them tomorrow. The Runners Expo is tomorrow and then the marathon on Sunday. I will make another post sometime after the run Sunday.

If anyone is interested in donating to our team for the marathon I think you still can. We are $225 away from our $1500 goal. Click and drag over this address then copy and paste it into your web browser if you are interested in giving: http://www.nationwidechildrens.org.kintera.org/faf/r.asp?t=4&i=1011247&u=1011247-364784818&e=5979548072  Tralaine, Andy and I raised more than anyone else on the Plastics Department Team and we owe that all to those of you that donated :) Many Thanks!

Take care and thanks for everything,
Brooke, Michael, and Greyson

Surgery Done & In Recovery

We got here bright and early and surgery started about 7:50am. Greyson was given some medicine to relax him and he was quite silly when we left him with the nurses. The surgery went as planned and just finished at 2ish. It took a bit longer then planned due to his growth tissue being wrapped around veins and major nerves but that is what Dr. Spaeth specializes in so he was in good hands. She shared a lot about what she did and even showed us some pictures and is very pleased with the outcome.

We are waiting now to get to go back and see him and then head to his room here at the new hospital for the evening. Dr. Spaeth doesn't think there should be any major problems and he should be able to go back to RMH tomorrow.

Take care and we will share more later.
Brooke

Sclero Done, Surgery Tomorrow

Well, I hope you all followed the rule that "no news is good news" since this message is so late.
Sclero went as expected today with a bit of an extended stay in recovery. Greyson had a bit of pain and was very thirsty after so they gave him some pain meds and some juice. He sucked the juice down and then threw it back up a couple of times. We gave him a couple extra hours to settle down and he was just fine so we were on our way.

We had lunch at the hospital, stopped for a short visit at Ronald McDonald House, and then went to visit Dr. Spaeth to talk about surgery and get paperwork filled out.
After Hospital/Dr. stuff I fit in a run in German Village and Michael and Greyson hung out at RMH to play outside at the "playground". We had dinner here and took care of some laundry (throwing up was not good to Eli, Blue Blanket, or Michael).

Everything is a go for tomorrow. We will get up around 5am (4am for most of you in Central Time) and will be at the hospital by 5:45am. Surgery is going to be less than 6 hours but we should know more specifics in the morning. I will have more time to post tomorrow since we will be in the hospital all day and overnight. Dr. Spaeth expects Greyson to do great and get to check out on Friday.

Thanks for all the loving comments. :) Take care!

Brooke

Friday Appointments and More

Entertained in the waiting room (yes he lined up the "dogs")

So sorry it took me so long to get this posted today. It was a longer day than expected at the hospital and then I thought we were headed to the room for a nap and Greyson decided he didn't need one ;)

Waiting for his turn with the iPad (iGuy) and Daddy.

Sclero went well. Dr. Shields treated a lot of small cysts in his chest, behind his collar bone, and upper are. There is really only one larger cyst left in his elbow that will be taken care of in October when Dr. Spaeth works on his elbow, wrist, and hand. Greyson was a bit upset when he woke up and really wanted something to drink but he got through that fairly quickly.

We saw Dr. Spaeth later this afternoon to talk about progress and future plans. We should have dates for October sclero and surgery soon. Everyone is very pleased with Greyson's progress and how great his scar looks. He was a great patient and had fun picking out 2 stickers.

Chloe and Greyson - Sorry he is blurry...this boy never sits still.

We made friends with a family I had friended on Facebook (there daughter's LM is VERY similar to Greyson's and she is just a year older). We had a nice time visiting with them while the kids played here at RMH and we sat by them at dinner.

one of many wooden animals in the new hospital

Such an amazing place.

After dinner we toured the new hospital lobby which is awesome. Then we headed to get some ice cream and walked around a park in German Village.

Jeni's is the BEST!

We are heading out tomorrow afternoon and should be home tomorrow night. Thanks for all the well wishes.

Brooke, Michael, and Greyson

(I forgot to post this on Friday here - originally posted on Carepages 8/10/11)

Post MRI/Ultrasound

***originally posted on CarePages

Today went well. We got to the hospital at 6am and Greyson was in a great mood. He had the waiting room and the sedation area all to himself including all the nurses, and by the time we left the room for his MRI, they were wrapped.

The MRI was scheduled to take 2 hours and only took a little over an hour and the Ultrasound lasted just over an hour so he was done a bit quicker than we expected. While we were waiting both Dr. Jiang (plastics) and Dr. Rivard (interventional radiologist) stopped in to talk about how great Greyson's chest looked. They each took a quick look at the MRI and agree that there is a some of the cysts growing back in his shoulder area (behind his clavicle) and the area around his elbow has gotten a bit bigger.

We hope to get a full report from Children's Mercy next week. Before leaving the hospital we requested the images be sent to Dr. Spaeth in Columbus and we hope that it gets to them by the middle to end of next week. After they review them they will weigh in as well and we will decide what (if anything) should be done.

Greyson woke up pretty quickly and we headed to the Keck's house so Greyson could play with Leo and Rachel and I could catch up. We went to lunch but Greyson started getting fussy and acted very tired. Within an hour he was burning up and his breathing was a bit labored. We called Dr. Jiang and he suggested we go back to the hospital and get him checked out. The doctor in the ER decided that it was a reaction in his lungs to the anesthesia and that ibuprofen should help with his fever and feeling bad. Within 30 minutes he was happy and eating a Popsicle and ice and saying hi and bye to the doctors and nurses going in and out of his room.

The day was a bit longer than planned and we are tired but all is well and he is sleeping like a log right now. Thanks for all and take care,

Brooke

MRI Tomorrow

Originally posted on CarePages 4/4/12

Finally April 6 is almost here. We will head to KC tonight for an early morning at the hospital for Greyson's MRI and Ultrasound. He has to be there at 6am and we hope he's done by 10 or 11am. He will be sedated since he can't sit still for that long :) (or even for a minute). We probably won't get any results that day but hope to hear back from the doctors soon after. We are sending the imaging to the doctors in Columbus.

It's been 6 months since surgery in Columbus and this will let us know what is happening inside and if anything is regrowing. We know that is the nature of this condition and if it is growing back then we will work with the doctors to figure out the next steps. He is still doing great and can use his right arm completely so even if it is growing it isn't causing any issues and that is a good thing.

 I will make an update when he is done on Friday and then when we get some results.

Thanks to all,
Brooke

Thursday - 2 days after

I know, I know....there should have been an update before now but Greyson is doing so great that it turned back into a two man show. He is keeping us hopping and we are trying to find thing to keep him busy. We went on two walks (in stroller) and also went to the toddler playroom. We took him outside to enjoy the fresh air as well.

We knew he was getting back to himself when he was standing in his bed first thing this morning. He has been going strong since then running around the room, hiding in the curtain, and climbing around and over anything he can. He has already figured out how to work around one arm being tied down. Since the doctor had to detach 2 of his muscles to clean out all of the growth and then sewed them back in place he isn't allowed to raise his right arm. She feels like it should heal in a few weeks and then he will get to use it again. You are going to be amazed when you see what it all looks like.
Dr. Spaeth and her resident came in to change the dressings and make a new sling. She callsthe sling a pretzel and thinks I will be able to recreate it when we go home. I plan to take pictures and video as she does it next time for future reference. I hope to post some pictures tomorrow from the computer lab at RMH.

Dr. Spaeth plans to discharge him tomorrow. She may take drains out tomorrow or maybe next week. We will stay around either way until next week. She doesn't want to send him home too soon and then have there be problems. She also had us bring in the car seat to plan how we well cushion parts so the straps don't hurt him. His incision at his neck is going to be close to the straps as well as the shoulder incision. He doesn't act like anything hurts now. He hasn't had any morphine since Wednesday night at 8pm only Motrin. It's amazing how tuff he is. What we learned is that it is because he has no perceived perception of pain so his brain doesn't tell him he should hurt like we adults tend to do ;)
Michael and I are split again tonight and hopefully will each get a good nights sleep. Michael headed to Ronald McDonald before 10pm and that gave me some time to post this update. Today we each took advantage of Greyson's nap times taking turns on the couch but are still a bit tired. The room is so small that only the coach, crib and tray fit in the room. We even fold up the stroller to have more room. We saw pictures of the new hospital rooms; they are beautiful and big. We will be making sure to schedule future visits here after it opens.

Sleep well...I know we will ;)
Brooke

In A New Room

We are finally in a regular room. Greyson has been doing good all day but we had to wait for a room to open. He has been in some pain but his meds kick in quickly and don't zone him out. He is getting more active and has sat up a handful of times. He really likes to roll onto his stomach to sleep. He fights the sling a bit and wants to mess with the tubes and IV ports. He is finally free of his "tethers" so I am sure he will get more active by the minute.

We are very tired and are heading to bed early. I am going to Ronald McDonald to sleep since there is very little room here. They told us again about how nice the new hospital rooms are going to be when it opens in January. I am sure Michael and Greyson will be great without me.

Take care,
Brooke

Finally Finished

13 hours later but all is well. The doctor said all of the nerves are working and she was able to get out almost all of the growth. It took a long time because the growth was intertwined with nerves, blood vessels, and muscles. He has two drains and a sling holding his arm down.

The incision follows his original surgery scar and goes up around his shoulder plus a small section by his neck. He is breathing on his own so will go to a regular room and will possibly stay until Friday then we will hang around to see Dr. Spaeth in clinic.

Glad to be done with this for sure. It's been a long day and we are anxious to see Greyson. Thanks for everything. We will share more in the morning.

Brooke & Michael

Wednesday Morning

So, we didn't make it to a regular room last night after all :( We finally got back to see Greyson in recovery around 10:30 or 11:00pm and he was having some problems getting enough oxygen, he had a deep and raspy cough, and they were trying to get his pain evened out. He was VERY puffy from all of the fluids they had to give him and they also wanting to keep an eye on that.

Around 1am the Anesthesiologist made the call that he would have to go ahead and move to the PICU for the night so that he could get one on one care. We got him settled in and asleep by 2:30am and then got some sleep ourselves.

All of the doctors came in this morning and decided he is good to go to a regular floor room so now we are just waiting for a room to open. It is a busy place so we may be waiting a while. In the mean time he is drinking lots of juice and has eaten a little. He watched a little TV and has snuggled with us a bit.

Today I have taken advantage of The Blue Jackets Room (like the Ronald McDonald House Room in Children's Mercy in KC). This family hospitality room has a library/computer lab, sitting room with TV, kitchen, laundry, showers, treadmill, and complimentary chair massages. I headed down while Greyson was sleeping this morning and ran a bit, showered, and even signed up for a 15 minute massage (which was heaven). After all that sitting yesterday all three were great. Michael is going to get his massage tomorrow but I doubt he takes advantage of the treadmill ;)

As always thanks to all of you. And to Mrs. Irwin's class...I gave Greyson your message and he is on the mend.
Brooke

Another Update

Still in surgery... It's been 9 1/2 hours since we handed him
over. They have called a couple of times to let us know things are
still going well. Greyson did get a blood transfusion due to low
hemoglobin but they feel like he is doing good. The doctor was
still working on the chest wall and they expect to be done by 7pm.
FYI - it is 5:40pm now.

Brooke

Surgery Update

We have heard from the doctor a couple of times. Greyson is
doing well and all is going as planned. The doctor feels she might
get done earlier than originally estimated. We are patiently
waiting and keeping busy. It has been 6 hours since we handed him
over.

On a sad note my laptop has decided to quite working so I won't
be able to post any pictures :(

More updates to come.

Brooke & Michael

Surgery Has Started

We got here bright and early this morning. Greyson was sleepy but happy especially after they game him something to calm him down. He has started realizing that he may not like being messed with so the nurse that got to check his vitals found some bubbles and they did the trick. The drug kind of made him "drunk" which was pretty funny. At one point he was in the crib looking out at the nurses smiling and licking the bars.

The doctors came in to talk about everything and a nurse practitioner did a once over and said he was all good. She even checked Eli (the elephant) and my ears and he then seemed to be ok with her looking in his. He even showed her his tongue so she could take a look at his throat.

We handed him over at 8:10am and they called us right after 9am to let us know they had started surgery. It took them some time to get him set up for a long surgery (IV's etc) but they said that was normal and all was well.

Adrian is the waiting room hostess and she is that for sure. She knew even before we got here that we are going to be around all day. She made sure she knew where we were and that she had our cell number in case we leave.

We went down and ate breakfast a few minutes ago and are staying busy. We have good cell signals and are checking the CarePage and emails often. Thanks for the messages and so much more...

Brooke

Surgery in Morning

First, everything has gone great since they took out the drains Friday. The original "Buddy" site is quite swollen and red but he doesn't seem to care. We were finally able to give him a bath last night which he loved. The weekend with Adelaide, Jeremy, and Eleanna was wonderful. We went on a hayrack ride, ate, shopped, ran, and played at the park. We got back to Columbus this afternoon, checked into Ronald McDonald House, went geocaching, and had dinner out thanks to Chet & Charlie.

I am sure you all remember that surgery is tomorrow but thought we might give some additional details:
1. Surgery starts at 8am Eastern.
2. We should get updates from the doctor every 1-2 hours.
3. Surgery could last up to 10 hours.
4. Dr. Spaeth is going to be working in his shoulder/neck area, original chest site, and possibly in his arm depending on how things are connected.

We will put up a few posts tomorrow as we get information but will let you know for sure when all is done.

Thanks for all the support.
Brooke, Michael, & Greyson

Getting Out Soon

We are close to being discharged...actually just waiting on Greyson to wake up from his morning nap.
He/We slept through the night and woke up bright and early (6:30am). He ate a great breakfast and has been VERY active. He got his IV out and other monitors off so he is mobile again. We took a trip to the kids play room for a while and wore him out. He loved all of the toys there and activities going on.

The OT department helped to get the velcro on his wrist brace fixed and Dr. Shiels has been in touch to give some guidance on how to tend to his drains (especially the one that won't hold suction which is not that big of a deal may just be messy). The nurse has fixed us up with lots of supplies to change the dressings, we have a script for an antibiotic.... and we think we are good to go.

I hope to have some time to put some pictures up later today or tonight. We may even see about taking Greyson to the zoo/aquarium later today to keep him entertained.

Thanks for everything.
Brooke, Michael, & Greyson

Out of Sclero and All is Well

Again, I have to tell you all how much we love Dr. Shiels....he is so positive about how he can help Greyson and knowledgeable about Lymphatic Malformations (LM). He gave us his pager number and told us to make sure and keep track of it so that we can contact him in the future.

He came out a few minutes ago and told us all about what he did. He drained and treated 6 cysts that were sort of inter-connected so there are only 3 drain tubes. He also drained a few others to help Dr. Spaeth's surgery next week.

We talked a lot about the life cycle of LM and how to respond when they "flare up". He shared his positive outlook about what he can do to help get rid of what is there and how he can work with plastic surgery in the future.

He said that Greyson shouldn't be in any pain but that they want to keep him overnight to make sure he gets 3 doses of antibiotics before we leave. Greyson will be on antibiotics orally after that. We will come back Friday afternoon for the drains to be taken out.

Take care,
Brooke & Michael

Meet & Greet and Prep

First off, we must say thanks to Matt, our cousin that lives in Louisville. He opened his new home to us and cooked us two wonderful meals. With many meals out in our future, home cooking was just what we needed. Also, thanks to Kelly Avise and family...they packed us a "travel bag" stuffed with snacks, drinks, and puzzle books to help with the trip. And of course to Aunt Bobbie and Slick & Sandy, our neighbors, for holding down the fort at home keeping an eye on things.

Greyson met both Dr. Shiels and Dr. Spaeth earlier today for short appointments to prepare for tomorrow's procedure. It was very close to lunch, and he was tired, but he did great. The hospital is huge, but we seemed to find the radiology and plastics departments fairly easily.

  First Dr. Shiels did an ultra sound to check out the area looking for large cysts he will be able to sclerosis to help Dr. Spaeth when she does surgery next week....That is the primary purpose in doing sclero this trip. He thinks that he found at least 6 larger cysts (1cm or bigger) that he can treat.

Treating them will make it easier for Dr. Spaeth to remove the tissue. In the future he will treat the smaller cysts and he thinks he can help take care of the 100's of very small cysts and the 1000's of tiny ones. Treating the smaller stuff will create scar tissue which would make surgery more difficult if he did that now.

We will arrive at 6am tomorrow for an 8am procedure. He will be put out for 1 1/2 hours and will probably have 6 drain tubes. The plan now is to keep him overnight to get antibiotics in him and make sure all is well.

Dr. Spaeth was pleased to meet Greyson and to see/hear that there have been improvements in his ability to use his wrist and hand. She watched Greyson and took some pictures, and we talked about the surgery that will take place next Tuesday. She is predicting that surgery will take up to10 hours but possibly not that long.... It really depends on what she runs into. She is going to work on the new growth in his shoulder (around the nerves) and the original growth site as well as maybe in the top of his arm.

.....there is your anatomy lesson for the day :) please ask if you ever have questions about what is going on. We have learned so much going through all of this with Greyson and learn more with every conversation. We really like these two new doctors and feel like we are in the right place.

Take care and I will update tomorrow after we get settled in his room following sclerosis.
Brooke

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