Update on TJ's surgery

[Guest guest]

Hi all! Sorry it has taken me until today to update you, but things have been

nuts here.

TJ had his decompression / C1 laminectomy on Monday, may 3rd at children's

hospital in Boston with Dr. Goumnerova. Surgery was set for 7:30am but of

course the nsg didn't come in until 7:30. The anesthesiologist started with

the drugs in pre-op at 7:15, which we didn't think TJ would drink it but

surprisingly he gulped it down. That made him really relax. Then it was time

for me to put on my scrubs and hat, (TJ thought it was so funny to see mommy

dress up like that) then at 7:35 it was time to go to the OR. My heart was

beating so fast, but I tried to remain calm for TJ's sake. As the OR nurse

and I got closer to the OR she put up my mask, and again TJ looked at me and

laughed. As I laid him on the OR table I kept thinking to myself how could I

do this to my 2 yr. old baby boy. I sat on the stool next to him just hugging

him and the doc said OK TJ here is your mask to put on just breath nice and

deep. Within seconds he was asleep, and the OR nurse said to me " mom take

down your mask for a sec and give TJ a big kiss and hug good-bye. Well,

needless to say I lost it. Out came all those tears I have held back for

three weeks. Just seeing his helpless little body on that big table broke my

heart.

The surgery was supposed to last 5 hrs, but it was over after 3. When Dr.

Goumnerova came out to talk to us, she said that she couldn't believe how

much worse it was compared to looking at the MRI's we had done. She said that

when she cut out the bone his brain just expanded, it was so stuffed in

there.

She did say that he does have the hydrocephalus that was seen on the MRI 10

months ago, but he doesn't need a shunt now, she wants to do another MRI in 6

months unless he gets worse. The nsg also said that he didn't need to go to

ICU b/c he held his own during the surgery, and his lungs sound great. We

went into the recovery room to see him, and he wasn't as bad as I expected.

TJ was a little swollen on the left side of his face but that went down in a

few days.

On Tuesday he was moving his head and neck pretty well, which surprised all

of us, and he only took 3 doses of morphine, and one dose of codeine. The

only problem we ran into was, when they took out his foley catheter on Tues.

he couldn't pee. The nurse straight cathed him, and they gave him more time

to pee but he couldn't, so they put another foley back in. I felt so bad b/c

it hurt him sooo much. On Thursday they took that one out and again after 8

hrs he still couldn't pee. So again they straight cathed him twice then put

another foley back in. That one came out Friday and still couldn't pee after

12 hrs. The docs finally called a consult with urology who then put in

another foley and said to me, since its Friday we can't teach you how to

staight cath him until Monday so you will have to stay here until Monday or

Tuesday. I then called my pediatrician here in NY and asked him if he could

set it up for us to be transfered to Albany Medical Center since TJ was

cleared from the nsg its just that he can't pee. Well, the hospital sent us

home Saturday with the foley in and to have it taken out by the ped on Monday

morning. We went this morning at 8:00 and he took out the foley and said if

TJ cant go by 4pm we will have a visiting nurse come to your house to cath

him. Well, I prayed all weekend that he would just go, and by 9:30 this

morning he pee'd. I can't believe I would get such a thrill out of him going

to the bathroom, but I did. At least that's taken care of.

Last night while TJ was sleeping I noticed that his pillow was wet and so was

his shirt collar, but it hasn't happened again so I will just keep an eye on

it. TJ's balance is way off and he walks like he is drunk, but that should

get better in time. The ped noticed that his eyes are a lot more crossed then

before, so now we have to go back to the ped optimologist to have his eyes

checked again. Other then all of that, I am so glad its over. So this is so

long, and I do want to thank every one of you for all your prayers and words

of encouragement.

I also got to meet Suzanne and Danny in Boston. She managed to track me down,

since I forgot to tell her my last name. Thanks again Suzanne, I was so glad

you came to see us.

Take care,

Barbara mommy to 2yr old TJ decompression w/ C1 laminectomy 5/3 children's

hosp Boston

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