14month old with congentile scoliosis

[greggo72]

My biggest concern is what if he says no, don't do the surgery where does that leave me? If only i could get 2 doctors to agree!!!!!!! That is one of the reasons i was so desperate to see Dr Boachie to see which doctor he would agree with. I am not going to lie i already stated in this thread I really want to put this whole thing behind my family... I don't want to risk ari's health but who really knows whats for the best? The doctor at NYU? The doctor at CHOP? The doctor at Minneapolis spine center? The doctor at Shriners? It all boils down to us making a choice... and then living with it. What if Dr Betz tells us not to do the surgery.. Then we are taking two steps back... I wish she was older so she could help us make a decision I feel like we are playing god and making life altering decisions for her without her consent, We will keep you posted I don't lknow what i would do if i didn't have this web site.. I would proberly had a nervous breakdown by now... Cindy

[greggo72]

Tomorrow is the big day

I know we haven't posted anything in a while but our daughters surgery was pushed back from march 28, 2005 to april 1, 2005. she is having anterior/posterior hemivertebrae excision surgery with (arthrodesis or fusion) and autografting and allografting. they will remove the two extra riblets that she has and will use donor bobe and perhaps her own bone to strengthen up her spine. dr errico, dr van bosse and dr nadler (all of NYU) will be performing the surgery. they say she will be in the hospital for 10 to 14 days. my job (the NYPD) has temporarily reassigned me to Employee Relations until April 17. (so that I do not have to take any vacation time and I will still get paid just for being at the hospital with my wife and daughter). we are packing and preparing today. my wife cindy will stay overnights with ariana but if it becomes too much for cindy i will do it too. although, ariana is more easily comforted by her mommy than by me. at least we have last years surgical experience to use as a baseline for this time. we are bringing a sleeping bag because the chair/bed in ICU is very uncomfortable. we are packing her favorite stuffed animals-i am burning CD's with her favorite songs. we are bringing pillows for cindy. this surgery will require ariana to be on the respirator and chest tubes so we have to prepare ourselves to see that. we just have to remain positive and hope that the success rates of this type of surgery will apply to our daughter and pray for successful fusion to eventually occur. at least this time ariana can tell us if she is in pain (she tells us where the boo boo is) as opposed to last time when she barely talked. i will keep everyone posted and if you read this post before tomorrow morning, pray for the doctors hands and pray for ariana to recover and thrive. thank you.
Gregory without Cindy. (she is working)

[Celia]

Gregg,

I've been reading your posts on and off the last couple of months and I sense a bit of fear and apprehension (quite understandably !). I just want to say that I pray everything goes well for Ariana tomorrow. I hope this surgery is exactly what you're hoping for and that she won't need any more.






Celia

[Carmell]

Hi Gregory and Cindy,

Please know our best thoughts and prayers and well wishes will be with your family tomorrow. This is a HUGE surgery (like you don't already know). We'll be thinking of you as you wait to see how she comes through the procedure. Hopefully when she's done, you will see a new beginning. Please keep us posted when you can. We'll be anxious to hear how things go.

[greggo72]

arianas anterior/posterior surgery

well as of now, the surgery went about as well as could be expected. first the doctors went throught the front and scraped away the segmented hemivertebrae-they also removed part of an extra riblet.they used the riblet, the vertebrae bone and cadaver bone to put back into the deformed area-they then put metal bars in between and two screws above and below the affected vertebrae (T13-L2). they stitched her up and went to her back -they left the wire hardware in from the previous surgery because it was hard to take out-they just tightened it so that it is fully functional again-so the doctor stated it's like having a belt with two pairs of suspenders to hold up your pants-they added more cadaver bone from the rear and solidified the structure-they didn't need to use a chest tube as expected and she was taked off the respirator immediately after surgery-she had a slight fever in the PICU bt that was to be expected (a little tylenol)-as of this posting, they are reducing her oxygen levels and slowly weening her off it-she is slightly more comfortable-she still has a catheter, IV, some blood draining thing attached to her back, and a line from her jugular vein ( i am not sure for what)-the doctor said she has no mobility restrictions unlike last surgery when she had to stay on her back-this time though, she has to wait until her brace is put on before she can move-her new brace is also a clam shell brace but it has pink plates on the front and back to make it more pretty and female like. ariana likes it-my wife is going to stay at nights with ariana because ari asks for her mom during times of crisis. hopefully soon she will be placed in the regular pediatric unit-i will return tomorrow morning and i may update everyone interested tomorrow night. greg

[nikyergen]

Gregg & Cindy,
Glad to hear that Ariana's surgery went well. We do understand the insurance problems you faced. I am so glad you found a good doctor that accepted your insurance. These surgeries can be very costly, and even if the insurance covers 80% of it, that can still end up being a lot to pay in the end. That is why we ended up with Shriners Hospital. We also got one of the best surgeon's in the world. However, totally understand the urgency with Ariana, and the fact that you couldn't wait. Crystal had her surgery on 3/15/05, and was off and going quickly. She's 16 and an athlete, so it takes a lot to really slow her down. She is just about off of pain meds. Usually only one prescription med at bedtime and the rest of the time it is regular tylenol.

We will keep you all in our prayers.

'til later,
Nikki

[greggo72]

ariana's spinal surgery

i didn't get to post on saturday night because i spent the night at NYU with my daughter and wife. on saturday, they removed the catheter. ariana was very swollen and bloated because she was retaining fluids. then the resident said it was ok to try to introduce apple juice to her slowly. unfortunately, ariana threw it all back up plus bile. so she had to be downgraded a bit. her fever went up and down the whole day. dr van bosse visited her and said he felt it would be better if she had the catheter put in so they could accurately measure the amount of urine she excretes. her belly was very hard (caused by her belly seizing in response to the anterior part of the surgery). the doctor was hoping for good signs soon like farting and a little poop in her diaper. saturday night, ariana had a little shaking episode and it looked like a seizure-her fever went up suddenly so it may have been a febrile seizure. they took blood and al was ok-she kept breaking out in little rashes or hives-she has a latex allergy so we thought it was someone accidentally used latex gloves on her but that was not the case-then we thought it may be the antibiotic-we still don't know but they gave her benadryl to stop the rashes. she also threw up some more saturday night into sunday-on sunday she started farting and making mucous poopies-her fever was gone and her face was less swollen-her legs were still swollen and her belly was less hard-she started talking more and singing and watching DVD's-she drank 4 ounces of apple juice mixed with water and kept it down so she is looking better-she is still in PICU as of now-we had the whole room to ourselves for a day and a half-3 empty beds-i guess it was slow for the weekend-sunday night we got another patient in our room-we got a lot of individualized attention by residents, doctors and nurses. the nurses have been especially nice and understanding-sometimes it's hard to deal with my wife because she is paranoid about everything-but i admit she does know her daughter better than anyone else-i am spending sunday night at home with my son-he has to go to school tomorrow- will keep anyone interested posted (oh and sunday they re-removed the catheter, and removed another IV line. she keeps asking for apple juice and milk but her belly is not up to par with her brain)

[susannajon]

Hi Greg & Cindy,

Just sending you my thoughts and prayers. I am so glad the surgery went well, and I totally understand how tough these first few days can be. She will get a little better each day, but it will probably go very slowly, a lot of two steps forward, one step back. My heart aches for you, and I can't wait to read how wonderful she's doing in a few weeks!

Hugs and kisses to you guys!

Susanna

[greggo72]

thank you-it certainly feels like 2 steps forward 1 step back

[nikyergen]

It was good to see another post from you. I am so sorry Ariana has had such a rough time of it. I am sure as everyday goes on she will feel better. I know my 16 year old is thinking she can do about anything now, and she not quite 3 weeks post-op.

We will keep your entire family in our prayers. So glad you got to spend the night at the hospital with Ariana and Cindy. I am sure you were greatly appreciated. I know when my husband came back to the hospital to pick up Crystal and I, I cried. He asked why I was crying. I explained exhaustion, not having my own bed, missing my family, and really missing his rock strength support. But, then I cried when he left after Crystal's surgery to come home too. The darn cows needed to be fed and we live 5 hours from the hospital. Little far for a quick trip.

Anyways, chins up, she will get better. We are praying.

'til later,
Nikki

[Carmell]

Gregg and Cindy - please know we are still sending our best wishes your way. Hopefully Ari will have more good days than bad from now on. Keep us posted and let us know how you all are doing.

[nikyergen]

Gregg & Cindy,
We are all continuing to pray for you all. We are all look for updates on Ari. Hope all is going well.

'til later,
Nikki

[greggo72]

ariana post-op

well, it is now april 13th and she had the surgery on april 1st-she returned home on april 6th-she has been doing well-even walking-the doctor said she has to wear the brace as she tolerates it-she hasn't been wearing the brace at all/ we went to see dr van bosse today for xrays-she is doing well-he wants ari to wear the brace all the time except when she sleeps-we saw the thoracic surgeons nurse practitioner and she was worried about ari's anterior scar being swollen-she believes it could be that an internal stitch came out-or worse case-it is a hernia that could effect her bowels-if ari gets a lot of pain or if she stops poopimg, then we have to bring her back-we have to watch her-we are going back next wednesday to see dr nadler himself-other than this-everything has been good-even if ari doesn't like it, we have to force her to wear the brace (as protection from falls and possibly damaging the fusion)-will keep all posted

[nikyergen]

Gregg & Cindy,
Glad to have the update on Ari. We will continue to keep her in our prayers. I am so glad she is up and around. My 16 year old got a brace after surgery for the same reasons. She is a pretty athletic kid and hard to slow down. So, I think the surgeon was hoping the brace would slow her down. Anyhow, the important thing here is Ari is doing well. Keep us posted on how she is doing and improving. It was good to hear from you.

lots of prayers,
'til later,
Nikki

[Celia]

Gregg,

Does Ari have instrumentation ? I'm surprised given the problems of non-fusion with the first operation that they didn't put her in a cast this time around. It's very important that she wears the brace - although if there is a swollen scar, that may be a bit painful. Maybe they could cut out a tummy hole on the brace so that it doesn't rub against the swollen area ? It's great to hear that she is moving around.



Celia