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

On The Road to Columbus, OH

We left for Columbus this morning a bit later than planned but the only appointment to keep today is dinner with Matt (cousin in Louisville). He is hosting us this evening and is making a yummy pot roast with potatoes and carrots and Mac-n-Cheese cause he knows G is a big fan. We are so lucky to have such great family to lean on...an friends of course. 

 

We will arrive at Ronald McDonald House tomorrow afternoon with a big bag of shampoos, soaps, etc to share with them. Between all of Michael's travel with work and from my awesome eMINTS family travels we have a lot of toiletries to give. We are lucky to have a "schedule" with G's stuff but so many family's find themselves there unexpectedly with nothing and these items may take away one minor worry while they are there.

Greyson's schedule is as follows:

10/17/12 (Wed.) Sclero with Dr. Shiels - arrive at 6am for 8am-9:30am sclero. He will treat chest and shoulder area. We will take him back with us and then a late afternoon appointment to check in with Dr. Spaeth.

10/18/12 (Thurs.) Surgery with Dr. Spaeth - arrive at 5:45am for 7:30am surgery. Should be 5 or less hours. She will work on his elbow, wrist, and hand. He will stay overnight in the hospital and hopefully get released early Friday to go back to RMH.

10/20/12 (Sat.) Get ready for Marathon with Tralaine and Andy. Go to Runner's Expo and chill.

10/21/12 (Sun.) Marathon and recover!

10/22/12 (Mon.) Follow-up Appt. with Dr. Spaeth and hopefully head home.

We will post updates as time provides (at least one a day) and will hopefully get to put up a picture or two. Thanks for all of your support and love.

Brooke, Michael, and Greyson

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

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

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

Going Home Today

Yes, you read it correctly, we are going home in a little while. We have spent the day seeing that we can manage Greyson's pain, that he can be moved around comfortably, that he can sit up, and that he can eat. All of his vitals have been great since we got here so that isn't an issue at all. Pain medication and anibiotics have been ordered from the pharmacy and Michael is packing the car now.

Nurse Brandy is working on the paperwork and doing all the stuff she is responsible for. Dr. Jiang went through the short list of things to watch for and showed us how to change the dressings and how to take care of the drains. We will come back on Thursday for a check in to see that everything is progressing as planned.

We are excited to get on the road and hope that Greyson can relax and rest during the trip. We'll continue to make updates (although probably one one a day) as he recovers.

Thanks to you all for everything. Love you all,
Brooke, Michael, and Greyson

New Photos in the Gallery

I had a chance to upload a couple of photos to the gallery. We did get to see the incision this morning but took a picture with my other camera and don't have the cord to transfer those to my computer yet. I will share them later for those that are interested.

There is a chance we may go home today but we are waiting to see how it goes getting Greyson up, getting him food, and playing. Update to come after lunch.
Brooke

Saturday 5:30am

Sleep is good :)

After the last update we talked with the Pain Management doctors about getting Greyson onto oral pain medication to see how he would respond since he seemed to need less and less through the pump. They agreed it might be a good time to transition so we were able to get rid of the IV (although both IV ports are still in just in case).

He had a great evening with visitors getting lots of smiles. He was very active acting like he wanted to get up and go and playing with toys. He took a few naps and eventually fell slept after getting some pain medication. We all slept from 10pm until 4am when the nurses came in to do a vitals check. Unfortunately he woke up a bit distressed and in pain but after some more meds he was comfortable enough for me to try and feed him. With the help of the nurse we moved him to my lap and he hung out for a little while and ate and "talked" with us. The best part was when she moved him back and was changing his diaper and he peed all over her and the bed. He is now back in bed relaxing and hopefully falling back to sleep soon.

Dr. Jiang is coming in around 10am to talk about progress and when we might go home. Greyson is doing so well and the drain is putting off very little drainage that it might be earlier than Michael and I had originally thought. Still, he hasn't sat up or eaten any real food and I would like to see him do that before we even think about going home. The thought of getting home and then having to get back in the car and travel up here if there were problems is not idea. So planning on getting him sitting up and maybe get some real food into him in a bit but for now....back to sleep.

We will keep you all posted.
Brooke

Lazy Friday Afternoon

The day has been filled with visits from many doctors and the nurses all helping Greyson to be as comfortable as possible. We have had some family around and more coming late this afternoon giving us breaks as needed.

Greyson has had a fairly good day. His pain is well under control and he is taking milk and juice from a bottle. The pain medication is making him a bit itchy and so he is getting some Benadryl which then makes him very sleepy. He is spending most of the time sleeping with shorter active periods where he likes to try and pull on tubes and anything else he probably shouldn't be touching. He has a mobile above the bed that plays music and he has his elephant blanket (thanks Carmen) that he holds on to most of the time. We have even gotten one little smile through the pacifier.

Dr. Jiang has been in two times and thinks that Greyson is doing well but wants to leave him flat in the bed for now so no holding or breastfeeding until tomorrow. He is a bit swollen, especially his right arm, but both plastic surgeons assure us that this is expected and will hopefully go down in the coming days.
We may get to go home tomorrow but Michael and I are not hanging our hats on that. When we do go home, Greyson will still have his drain tubes in until there is no more drainage. Right now the drainage is not near what it was last night and Dr. Jiang is happy with it.

Looking forward to a calm evening. I will try to put another update up this evening but it may not happen until the morning if there is nothing new to report. Thanks to you all...
Brooke

Out of Surgery #2

Surgery #2 was successful - Dr. Rast repaired a leaking blood vessel and got Greyson in and out of surgery and back to his room within 3 hours. He has lost an ounce or so of blood and his blood count is low but Dr. Rast didn't want to give him a transfusion before giving his body a chance to correct that problem. They will draw blood in the morning so let's all keep our fingers crossed that they send the best lab person available.
All of the doctors and nurses comment on how strong and big he is (and of course how cute that hair is) and how that helps him to recover better. Even though we waited so long (in the short run) for this surgery the chance to grow and get strong has paid off.
Greyson is resting well now and will for hopefully a couple of hours. It's been a very long day and we are going to try and get some rest now as well.
Brooke

Back in Surgery

Unfortunately we are back in the surgery waiting room. Greyson was doing pretty well and got some needed rest this evening but his incision area started swelling and the drain showed that he was bleeding internally so the nurse called one of the plastic surgeons back in. At about 1:45am he decided that it would be best to go back in and take a look so they quickly got Greyson back down to the OR and we are patiently waiting to hear how it went.
Most of you probably won't read this until morning when you are also reading the next update about how he is out of recovery, but I thought some "late-nighter's" might appreciate this plus it gives me something to do.
Sleep well,
Brooke

Sleeping It Off

Greyson is in his room now (Henson Room 2606). He's sleeping well and is on pain medication to keep him comfortable. He was awake when we met up with him after recovery and seemed calm and sleepy. All of the nurses said that he was the sweetest little guy and they just loved his hair.

If anyone needs to get a hold of us they can call the room (816)234-1690. Our cell is getting a signal right now so I think I will be able to get calls and texts.

We are hoping for a quiet night and no pain for our little guy.
Brooke