Nothing New to Report

Greyson had another great day today so nothing new to report...he is still in a great mood with lots of smiles and laughing, he is only needing pain meds at night and we are lowering the dose starting tonight, his drains are still putting out about the same amount (they won't take them out until all drainage stops), and his follow up appointment is set for 10:45am on Thursday (hope all the snow we are supposed to get is cleaned up quickly).
Stay warm and safe.
Brooke

Home and Doing GREAT!

We got home yesterday about 6:30pm. Greyson slept the entire way home and had a nice evening at the house playing with his toys and entertaining a set of Grandparents. We continued to give him his scheduled pain killers to keep him happy and put him down around 9pm. He slept great and only woke one time around 4am. He seemed a little uncomfortable so I gave him more pain medicine and fed him and then he slept until 8am. Was VERY nice to get some sleep in our own beds.
Since Greyson woke up happy we decided to wait on meds until he seemed like he needed it and so far we haven't had to give him any (and it's 3:20pm now). He is so amazing...he is sitting on his own and playing with toys, wanting to stand all the time, and is full of smiles and laughs. He has eaten well today (sitting in the highchair) and has taken his two normal naps.
Greyson was happy to let us change the dressings on his incision which took some time and 3 people to figure out. Wish the wrapping looked as nice as when Dr. Jiang did it (on his own). There is quite a lot of swelling in the front of his shoulder area where they brought a bunch of skin together when taking Buddy off and his right arm is still a bit swollen depending on how we have everything else wrapped. He has two drains in as well and they will stay in until there is nothing draining out of them. We clean those out once a day and measure the output to make sure it is decreasing. He is also taking an antibiotic to keep infection at bay and LOVES it. So nice that he doesn't fight us on any of that.
Michael and I will be here with him this week and will venture back to KC on Thursday (weather permitting) for a check up. We hope to learn what the next steps will be knowing that he will probably have drainage issues for life. We know they will do another surgery to continue working to get his chest a little more "normal" looking and we also need to figure out how they can address the cysts in his arm.
I am going to post more pictures (including one of the incision) in a few minutes. It looks pretty gruesome but know that Greyson doesn't seem to even be bothered by it. Remember, he has had no pain medication since 4am and is being very active. Wow....Kids are so resilient.
Thanks for all the wonderful comments. We will keep in touch throughout his recovery.
Brooke, Michael, and Greyson

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

Out of Surgery

Everything went as planned and Greyson is now in recovery. The doctors were able to remove 80% of the tissue and lots of the skin including most of the red discoloration. For those of you wondering he came into surgery weighing 20 pounds and now weighs 19 pounds :) He lost very little blood so didn't need to have a transfusion. We will see him in a bit less than an hour when they take him to a regular hospital room (ya no ICU).
Our concerns now are how well we can manage his pain. The doctors said that with this large of resection to expect pain but we know they deal with this here all the time and will know what to do for him.
Another surgery will be required at a later date and other procedures to take care of the spots in his arm. We hope to only have to stay here a couple of nights but it all depends on how things progress. So far it's looking pretty good.
I hope to put another update up later today but we will see how things go. Thanks for all the thoughts, prayers, and well wishes.
Brooke

In Surgery

Michael and I just left a happy Greyson with the surgery nurses with the plan that surgery will take around 3 hours followed by an hour in recovery. We will get hourly updates and when the doctors are done they will come down and let us know how things went. We will put up updates as we hear things.

Heading to the Hospital

In a few minutes we are going to the hospital. Everything went well last night except for a melt down in the car bed on the way and then they had to take blood from his head. They tried both arms but they couldn't find a vein in either. Traumatic at the time but he was fine when it was over. Glad they will give him gas before putting in his IV today.

Greyson (and Michael) slept great last night and he has been in a great mood this morning. Just waking up form a nap now to have some apple juice and then nothing more until after surgery.

More updates to come.
Brooke

Surgery Tomorrow

Tomorrow is the big day and to say we aren't getting a little anxious or nervous would probably be a lie but we know that we have a ton of friends and family to support Greyson through this and an EXCELLENT team working with us at the hospital.

We got the call from Surgery today letting us know that we need to check in at 11:45am and surgery is scheduled for 1:15pm and will last somewhere between 2 and 3 hours. My plan is to post an update after he goes into surgery and then one when the doctors come and tell us that everything went great ;) After that we hope to make updates a couple of times a day until we go home and continue to let you know how he is recovering after that.

Michael and I decided to head to KC this afternoon to keep it as low stress tomorrow as possible. Greyson is going to get his lab work done this evening and tomorrow we will go to the Plastics Clinic for a check-in with all the docs before surgery. We are hoping he will be able to sleep tonight and get his fill of milk before 7am. After that let's hope his great disposition gets him through until he gets put under.

We are looking forward to all the supportive comments we can count on all of you to make. Thanks so much.

Brooke, Michael, & Greyson