Sunday, August 29, 2010

Sorry - We have been off the grid for a week

So we got out on Monday because I think the doctors were sick of us. It was like well the fever was gone for 12 hours and boom out the door. We loved it. Just be difficult I guess and make a lot of demands and they will get you out the door quickly. We didn't get to see a PT and lord knows the boy wasn't walking - he's still not walking a week later - but we were free!!! Isaac did pretty well on the drive home with some big pillows and for the last week he's been sitting in a pile of pillows at Grandma and Grandpa's house in Precious little Procious, WV where there is no internet (sorry blog). I didn't think Eric and I could handle it on our own since Lucy is crawling and all over the place. It was so nice to be near the grandparents (on both sides) to help because the first days home were crazy.

He only stood for seconds at a time - and with great pain for the first couple of days. The last two days he stood for maybe a minute at a time but without the screaming. He didn't want to move his head at all in the beginning. Just now he will move it from side to side. I guess with kids when they feel the slightest pain they stop where with adults you can force them a little more. With us, when he screams we stop. Anyways - he is doing great now in comparison. I have pictures and x-rays to share as soon as I get it together but we just got back home and there is tons to un-pack. The smiley little boy is back and I am amazed how great this is going to be for him. Totally lifechanging.

Sunday, August 22, 2010

Some more pictures . . .

Day five post surgery - Dear lord please get us out of here

So the little boy is still in pain & does not want to sit up. Further he does not want to attempt to walk, and does not want to be touched by anyone anymore. I feel sorry for the cutey and hope and pray we get to take him home soon because maybe it will be a little better there on our own turf. He has eaten and went to the bathroom, but he has had a fever the majority of the time since surgery.

So on our list before we go home is 1) get him to walk (god help us on that one, because I think that may take weeks as big of a change this is for him) and 2) not have a fever for at least 12 hours in a row. Today we switched from the Lortab and Teradol (msp) to Tylenol with Codeine. He was itching pretty badly yesterday & he has been itch free today! We put him in a wheelchair 3 times today and took him to the playroom to look around - he barely holds his head up and kind of slumps in the chair, but we were out and about, so that's something.

Sorry to ramble we've just been couped up in here and are getting a little nutty. Oh and thankfully we will get to talk a PT before going home to give us an idea of the limitations we will be facing. Its looking to us today like its going to be a long road to complete recovery - but from what we've heard everything should be great in 3 or 4 weeks. Its just so hard for the little man right now - poor fella.

Friday, August 20, 2010

A few pictures while he's sleeping . . .

Straight out of recovery to sleep it all off for a day

Pre-surgery with his newest favorite thing a HORSE!

Just before surgery in his little cage looking like Eric's mini-me

Loving his new puppy that Emma and Georgia sent him with some Elmo & Spongebob balloons

Day three post surgery update

So today the boy sat in a chair surrounded by pillows all by himself. :) He read every book we brought, which was around 100 books - and flashcards. He is doing exceptionally well according to our doctor and may be released Saturday or Sunday, which is pretty mindblowing. He still cries when we move him around from place to place or even when we switch positions in bed - but tolerates the position after we get him there. Last night we had a little freak out when he was woken up by a noise and he screamed for around 5 minutes like he was in some medicine induced nightmare - wasn't pretty - poor fella and mommy were crying. He got some pain medicine and calmed down.

He is eating real food today -1st meal: 3 mini pancakes, strawberry yogurt and a banana. They took out the catheter this morning and took him off Oxygen (they figured his baseline breathing was lower anyways because of his sleep apnea - so he normally breathes around 90 which is around where his 02 level was lingering without the oxygen). Really he's only hooked up to an IV. Still had a lingering temperature this morning so we started a new medicine that I can't remember the name of off the top of my head - but he's on it and Lortab. It kind of scares me that they are going to let us take him home already - wowza. But he is feeling much better today and you can see it.

Oh and remind me to post a picture of our before x-ray and after x-ray - it is INSANE the difference. INSANE! Must get to a scanner soon!!!

Thursday, August 19, 2010

We made it through surgery fine - to the healing part now!

So the surgery yesterday was just a little less than 4 hours start to finish. I honestly heard the words "excited" and "lucky" come out of my mouth when talking to the surgeon before he went in. In reality I was pretty terrified - but am so so glad it all turned out so well so fast. When they called us early and said he would be out about half an hour earlier than expected I PANICKED - because I seriously thought something must have gone wrong and that is why it didn't last as long as we thought. How was I to know it was because everything went so well? Its just crazy and an amazing blessing. So many many many answered prayers.

He was in recovery for a few long hours but we finally got to see him in a regular room (not ICU as we expected). I will post pictures of my cute boy later - he looks a little rough at the moment. He did well and the device looks great apparently - he is still in a great deal of pain - and he kind of acts like he's scared to move. I got to hold him for a half an hour today - and he just blinked while i kissed him repeatedly.

I just wanted to throw a quick post out there - I'm just so ecstatic its over - Of course now I have to refrain from buying that $40 dollar elmo in the gift shop for the boy because lord knows he doesn't need another elmo stuffed animal. He already has a giant elmo balloon and a giant blues clues balloon and a horse we bought him yesterday - but when he's so pitiful I would seriously buy that child a Porsche if he asks (or signs please - that one gets me everytime).

Thanks for the prayers!!

Monday, August 9, 2010

OTL: Pau Gasol And The Path Not Taken

I like how Gasol asks what the pulmonary implications for a 2 year old would be if you fused their spine at that age. Um not very good Pau, that's what we were told. :)

Pre-Admission Testing done, the countdown begins . . .

Well after a 5 hour long series of appts Friday we are ready for VEPTR surgery I guess. Poor little boy got stuck 7 times trying to get the blood tests needed done. After awhile I thought they were just digging for veins - it wasn't pretty. He looks like a heroin addict today with all the bruises.

Well Isaac is at my knee asking to watch Elmo videos on the computer right now, so obviously that's enough blogging for now. :)

Babies with iPads: I imitates animal sounds using the iPad

Babies with iPads: I imitates animal sounds using the iPad: "I is making animal sounds when he sees the animals or imitates their sounds after he hears them. "

Thursday, August 5, 2010


So Isaac's tonsil surgery is going to be october 4th - he had to wait 6 to 8 weeks after the first one to recover. They couldn't do it at the same time because there was no ENT surgeon available on the 18th (when his back surgery is scheduled). Anyways it stresses me out either way. I wasn't wanting him to have both at the same time really. I know it really won't be that long - but boy we miss the HgH. Right now I basically let him sleep with me and Eric and stare at him snoring the whole night. Good god, and to think that the HgH can make them grow back again. So crazy.

We leave this evening to go to columbus - Tomorrow he has to have his pre-admission testing done. Tomorrow I turn 30. oh joy. I think the combo of the back surgery and the tonsils - and the last day of my 20's just has me in a tizzy. :) Having a special needs kiddo really aged me like 30 years in 2. :) I have the white hair to prove it. He's cute though so I guess we'll keep him.

Tuesday, August 3, 2010

Tonsils & Adenoids OUT - woohoo!

Ok so we knew it really before we even went to the ENT today - but the boy has to have both out and I think its going to help him SOOOOO much. Hopefully everything will work out and he can have them out soon and get back on that growth hormone!!!
Of course the lady mentioned asking the orthopedic surgeon if we can take them out at the same time he is getting his back surgery and that kind of made me want to puke just thinking about my boy going through all that at once - so hopefully not TOO soon I guess.