Tuesday, June 29, 2010

Too Many Titles

Today as I attempted to begin my newest update to The Journey to 26.2 blog I got stuck on the title realizing that there are just too many things to write about. Don't really think an entire post is necessary. Check out these titles and you be the judge.....

Back On The Road: or so I thought
Running With Baby: The First Installment
3 Runs 1 mile Jogs = Sideline
Never Had Knee Pain Before Pregnancy
Exhaustion Claims Another Runner
Thinking the CRC Might Kick Me Out
I AM A RUNNER: I just don't look like one now
Missing the Road and My Friends :'(
Not Even Getting The Chance to Enjoy the Journey
And I Think I Am Running an Adventure Race and 1/2 Marathon in the Fall?
"Well a C-Section is Really an 8 Week Recovery" says the Dr.

..... Discouraged, Frustrated, Annoyed, Sad, Lonely, Mad, Tired!!!

Run On! (still without me)
Brooke

My Own Vintage Pearl

No new hobby updates but I did finally get my own necklace from The Vintage Pearl which I absolutely LOVE. Thanks so much to my wonderful friends who gave me a gift certificate at one of the baby showers for Greyson - I am going to have to remember that for the next friend celebrating.

As soon as we got home from the hospitals in KC I spend a day or two picking out exactly what I wanted, ordered it, and got it just 3 weeks later. The hardest part was deciding which necklace to get and what to personalize it with. I decided to go with The Circle of Love necklace and stamped it with "Greyson Shane Higgins - May 7, 2010".

I love it and wear it almost every day. It is also a favorite of Greyson's I think since he is pulling on it so often ;)

Friday, June 18, 2010

Going Home Today

Greyson got through his appointments this morning and is ready to go home. We are cleaning up our room at RMH while he sleeps the morning away. He had a GREAT night last night, at least by the time he fell asleep at midnight. He slept through until 6AM - boy he was tired for sure and we were quite surprised and pleased to get that much sleep.
The lab visit wasn't too bad since he only had to have a heal stick and didn't cry too much. His blood work came back pretty well although he is going to have to have blood drawn each week in Joplin to keep an eye on his anemia (hemoglobin) until we come back up for his next Vascular Anomalies clinic visit at the end of July.
Greyson then visited Dr. Rivard, the radiologist that did the procedure on Wednesday, and got the drain tubes taken out with no pain. It was a little gross for me to watch but not too bad. He only has two little incisions that should close up in a day or so and we can take the dressings off tomorrow. Dr. Rivard seems to think the results (shrinking) will be coming soon but full results from the first sclero-therapy session won't be seen until 8-10 weeks. We scheduled the next procedure for August 18 (Dr. Rivard's Birthday - Greyson will have to remember that:). Hopefully Greyson won't be anemic and need to stay in the hospital then.
Hoping you are all well and that we see you sometime soon. Greyson sends his love to you. Thanks so much for keeping him in your thoughts. We made it through this first part of the journey and are looking forward to the next steps.
Brooke, Michael, & Greyson

Thursday, June 17, 2010

Getting Discharged

Finally...I think we have seen every doctor or nurse possible
today but they are finally saying we can get out of here. Greyson
has had blood work done (very traumatic) and has hung out all day
long. We have an appointment in the morning to get drain tubes out
and have more blood work and then hopefully we can head back to
Carthage. Thanks again for all the support and wonderful
messages.

Brooke

Some Stats From the Day

Having a hard time sleeping so thought I might share some stats from the day....
12 pounds
23 inches
Hemaglobin 8
198 Heart Rate - highest it got when he got mad
100% O2 level most of the day
4 - # of people it took to finally find a vein for his IV
4 - how many cysts they were able to inject today (2 large, 2 small)
18 - # of doctors and nurses that Greyson came in contact with today
10 - # of things attached to him now
Heart Rate lead (chest)
Respiration lead (chest)
another lead (chest) *not sure what it is for
Blood O2 (big toe)
IV taped to splint(left foot)
IV taped to splint (left upper arm)
2 Drains with 12 in. of tubing and bulb at end (buddy)
hospital bracelet (right ankle)
blood type and cross bracelet (left ankle)

As I sit here watching Greyson try to sleep I am amazed at how many things are attached to him, all to keep an eye on everything during his 24 hours of "observation". No wonder he is annoyed and keeps waking himself up. I think he might be most mad about not being able to suck on his fingers, his newest finding.

Going to try and sleep now.
Brooke

Wednesday, June 16, 2010

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)

Tuesday, June 15, 2010

1st Procedure Tomorrow

We are back in KC staying at the Ronald McDonald House again but with Greyson this time. Tomorrow is the first Sclerosis procedure for Greyson. He has been doing great (almost up to 12 pounds we think) and we hope that this doesn't slow him down a bit.
The doctors have told us they don't think this will cause him much pain since he will be out when they do the treatment but we really won't know until it is all over. Michael, Greyson, and I will stay here at RMH until Friday we hope when the doctors will give us the go-ahead to go home. I plan to post an update sometime tomorrow afternoon when we get back to our room. Hoping for the best for our little guy.

Saturday, June 5, 2010

A Week of Firsts

Michael and I can't believe that we have been parents for 4 whole weeks. Wow, it has been an experience for sure and we keep learning more every day. Greyson is such a great baby and we are having lots of fun getting to know him. This week has brought about more 1sts that we thought you might be entertained to hear about....
1st Month Down - Greyson is exactly one month old today!
1st Night in His Own Room - Sunday night Greyson started sleeping in his own room!
1st Real Smile - really, I promise...Allison even saw it - check out the gallery pic ;)
1st Laugh - not a real one but while he was sleeping. We wonder what a month old really has to laugh about???
1st Night Alone w/Mom - and we did great.
1st Spit Up/Poop Combo - all within 2 minutes I was covered (exaggeration of course) in both.
I'm sure there are more 1sts but who can remember them all with so little brain cells awake. I better get to bed. ;)
We are counting down the days until our trip back to KC and will fill you in more then.
Brooke