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

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)

Sclero Tomorrow

We are finally here after some delays, diversions, and circling all thanks to Mother Nature. We plan to head from the Columbus airport to RMD house and settle in.

Greyson's sclero is at 10:30am tomorrow and should only take an hour. He has an appointment with Dr. Spaeth at 1pm. We will update everyone then. Hope getting off this plane goes quickly. ;)

Brooke

(I forgot to post this on Thursday here - originally posted on Carepages 8/9/11)

August 10th is Around the Corner

The date is set, the room is reserved (Ronald McDonald House), and the flights have been booked (thanks Papa Charlie). We will be heading back to Columbus, OH in just about a month for Greyson's next round of Sclero. We are expecting a very short procedure (1 hour) with no drains (yipeeee) and no need to stay the night in the hospital. Dr. Spaeth and Dr. Shiels have a plan for Sclero now and then in mid to late October followed by a much shorter surgery a week later. I love a good plan and this one seems to be making the most sense right now.

Greyson has been doing GREAT and we are excited that no issues have popped up with his Lymphatic Malformation since last October. His chest/shoulder look AMAZING and no where close to what it looked like when he was born. Many people have asked why we are doing more procedures since he looks so good so I thought I would explain it here if more of you are wondering the same thing.

First off, the tissue in his chest (and there is still more even though we can't see it) that is malformed is very unpredictable and no two LM act alike. It can sit and do nothing or grow at any time "unprovoked" and there is a good chance it will get bigger if he gets sick (like an upper respiratory infection) which wouldn't be good because the tissue in there could get infected. The LM doesn't cause him to have a weakened immune system but if he were to get sick it can cause his LM to get angry and react. :)

The doctors we are working with believe that the more of the tissue you treat, and/or get out, the less of the possibility of it filling up or growing...especially if it is connected. So our goal is to treat/get out what we can in hopes that it deters future flare ups or growth. Dr. Spaeth thinks that these two round of Sclero and surgery this fall may contain it enough so that Greyson won't have to continue having MRI's, sclero, etc. possibly until he hits puberty. Some LM are affected by hormonal changes. And getting it done this early means he probably won't remember it :)

I have said it before and I will say it again...Greyson is doing great and is having no problems with his LM and we are very grateful for that. We have learned a lot throughout this journey and continue to learn more each day. We hope that being proactive now will make the future a more enjoyable time when we can spend our future vacation time on actual vacations and not traveling to hospitals :)
Thanks again to everyone for all of the support and love. I wish you all could spend some time with Greyson these days. He is such a sweet, loving, energetic, happy, funny little guy and he keeps us hopping minute to minute.

Brooke (Michael and Greyson)

Doctor Report on 4/6/12 MRI

We heard from Dr. Spaeth (who has consulted with Dr. Shiels) both in Columbus, OH. They were very pleased to find that the growth in Greyson's chest cavity has shrunk since Dr. Spaeth did surgery. We are excited to hear this news and hope that is stays that way. They confirmed that there is a small amount of regrowth in his shoulder (behind his clavicle) and the larger cyst in his elbow area has gotten a bit larger. Dr. Spaeth said that is expected since his lymphatic system "above" it has been removed since it was part of the growth. She also noted that there is some micro-cyst regrowth in his lower chest area by the incision.

They feel like treating the larger cysts with sclero in the next couple of months will discourage it from regrowing. She also feels like a follow up surgery, possibly in the fall, to remove the tissue in his elbow and wrist could take care of things for a while. What we have learned is that lymphatic malformations have a mind of their own and doing everything that we can to discourage regrowth is a good idea but will never have a guarantee. We don't want regrowth to cause issues like it did last August so staying on top of things is important.

For now we are figuring out when a trip to Columbus this summer will make the most sense and when Dr. Shiels can treat him. We will keep you posted when decisions have been made.

Have a great week,
Brooke

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

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

2nd Sclerosis Procedure

At the end of another full day here in KC at Children's Mercy. Lucky for all three of us, we are ending it at Ronald McDonald House instead of a room at the hospital. They sent us on our way after 4pm this afternoon to be in charge of the drain tubes and to hang out until Friday when they take them out.
The day started off with blood work taken at the Children's Mercy lab that all turned out good. Man, those ladies that draw blood there are good. One stick, some tears, and 3 tubes later and we were out of there. This was very un-like his experience at St. John's this week - ahhhhh. Greyson's hemoglobin has finally decided to even out and it was a non-issue today and hopefully we won't have blood work again until before the January surgery.
Then up to radiology we went and the waiting started...30 minutes in the radiology main waiting room before the sedation nurse came to get G. Then 2 hours in the sedation room (think small hospital room) where all the doctors came to check out Greyson and have us sign consent forms. The MRI was supposed to start at 11am but they didn't even make us hand him over until 11:30am. What was scheduled for an hour MRI was really a 2 hour MRI since they were scanning both the buddy and G's right arm. After that they took him on to the room where they do the sclero-therapy for a 45 minute procedure all while we waited in the MRI waiting room (much nicer and quieter than the main waiting room). Greyson was completely out and intibated (sp?) for both procedures which seemed to add a bit of anxiety to all the waiting. The good thing was anesthesia gave him some gas to fall asleep before putting in the IV so he skipped out on that pain.
Even though we were without him for so long it was worth it. Dr. Rivard said that this will most definitely be his last sclero-therapy treatment since he has now taken care of all of the large cysts. This type of treatment isn't for the 100's of small cysts that remain. The surgery will take care of those. Dr. Rivard also read the MRI of Greyson's arm and let us know that the lumps and bumps that we can see, and some that we can't, are more cysts much like the ones in his chest. So the plan is to wait until after the large growth is taken off to see how the ones in his are react and then decide what to do about them.
Again, we had excellent nurses and doctors taking care of our little one. We are so lucky to have these experts to help Greyson through this detour in his journey.
We must thank our friends Don and Jackie for having us over for dinner tonight. They made quite a spread and entertained us for the evening keeping Michael and I from going stir crazy in our RMH room all night. The fajitas and fixen's were great but the time hanging out, relaxing, and visiting with good friends was even better. And thanks Jacks for putting the little guy to sleep even after the drain bulb incident ;) you handled it all like a pro!!! Your a natural.
Greyson went through a lot today but started with smiles and ended the day the same way. What a great little guy we have....all the nurses today agreed.
Thank you all,
The Higgins

Recovering Now

Greyson did great this morning. Michael and I thought he would be very fussy due to not being able to eat from 4am on, but he didn't fuss that much at all, even when they poked him 4 times trying to put in an IV. I will tell you though, he did love his pacifier and sugar water for sure.

The procedure took around an hour. The radiologist was happy with the outcome. He was able to inject 2 large cysts and 2 small cysts after draining them. The antibiotic they injected will shrink the cysts by "attacking" the tissue. At the end they inserted drain tubes in the larger cysts and hopefully those will come out on Friday as long as things go well.

Unfortunately Greyson did have to get another blood transfusion. His blood work before the procedure showed that his hemoglobin was low (like when he was born they thing due to the growth). This along with a high heart-rate after the procedure made the doctors decided it would be best to give him some blood to off-set it. Because of the transfusion/low hemoglobin, they also thought it would be best if he stayed overnight in the hospital for observation and another check of blood in the morning. This will give us some help taking care of his drain tubes and pain management as well.

We are still staying at the Ronald McDonald House (Longfellow Building) in room 41 until Friday and will be here at CM in the Henson tower on floor 3 - Room 3 until sometime tomorrow. If you would like to call we can be reached on our cell phones or here a the hospital at (816) 460-1044+3403.

Thanks to all for the wonderful messages. I hope to post more later and maybe some pictures as well.
Brooke (Michael & Greyson)