View Full Version : Surgery in 3 days!
05-30-2009, 10:55 PM
Hi everyone! I have been reading all the posts and getting very teary. My baby boy Jack was born 1/20/09 and diagnosed with sagittal cranio on day 2. We met with the neurosurgeon and craniofacial surgeon when Jack was 2 weeks old. I have been waiting and waiting for the surgery, and now that it is 3 days away (june 3rd), I am getting so scared!
It helps to read all the great encouraging stories on this site though.
Mother of boys
05-31-2009, 12:24 AM
Welcome to CK! That is great that he was diagnosed so early. Many wait months and years to get a proper diagnosis. Waiting for surgery day was torture sometimes. It is completely normal to be scared right now. When you think of what they have to go through, it is scary. Thankfully cranio is fixable and the kids do fantastic. It is amazing how well they do and how quickly they bounce back. My son was sagittal also and had surgery back in October shortly before he turned 5 months old. Do you have any questions? I've added his name to my calendar so that I remember to pray for you guys on that day. Let us know if there is any way we can help. Hang in there. You are almost there.
05-31-2009, 01:54 AM
Hugs to you Momma! Your little one will do just great. It's really scary and most of us have had some intense mix of "I just want this over with" and "I'm utterly terrified". He'll do great. You are so lucky you had a diagnosis so early. Most of us had to fight to get anyone to listen.
What type of surgery will they do (CVR/FOA, strip, or???). Where will the surgery be done? I'm not sure we have any MN parents here right now. Please keep us posted how things are going for you and feel free to ask lots of questions! Read the stickies in the testing forum on what to ask, what to pack, what do while you are there. It all really helps. There are also a number of posts/threads on breastfeeding before and after surgery if that is a concern for you.
Ask away and thanks for posting. We will all be sending prayers and thoughts your way in 3 days! (Tuesday?)
06-02-2009, 03:50 PM
I will be praying for Jack tomorrow. Let us know how everything goes :)
06-02-2009, 03:58 PM
Lots of prayers for you tomorrow. Hang in there, you've almost made it!!! (((HUGS)))
06-02-2009, 04:01 PM
Hi and welcome to CK. I'm sorry I missed this post and didn't see it until today. Good luck tomorrow! I'll be praying for you and Jack. I know it's scary, but Jack will do great and he'll bounce back to himself so quickly. Keep us posted tomorrow if you can.
06-02-2009, 04:14 PM
Welcome to CK & good luck for Jacks surgery tomorrow. He will simply amaze you im sure of that, it's so much harder on us parents. Hang in there sweetie & please let us know how he gets on x
06-02-2009, 04:38 PM
:prayHang in there Momma! Tomorrow you will be on the other side!!!!:yipee Keep us posted when you get a chance!!! Best wishes Jack!:hugg
06-02-2009, 05:44 PM
Hey just to let you know i'll be thinking of you tomorrow i hope all goes as well as can be expected xxx
06-02-2009, 10:40 PM
Lots of huggs for you and your little one tomorrow. Keep us posted! He will amaze you after this is all over.
06-03-2009, 05:10 AM
Hi and welcome to ck.
Im thinking and praying for you both today,:pray hope everything goes great, you are nearly there and through to the otherside, please let us know when you can how Jack is.:hugg:hugg
06-03-2009, 10:59 AM
I hope things go well for you today...I will be thinking about you and your family!
06-03-2009, 11:43 AM
Lots of prayers coming your way today. Can't wait to hear you've made it to the other side and things went very well. Keep us posted!!!!
06-03-2009, 11:51 AM
hi and welcome. I'm def praying for you and Jack today. HUGS! My son just had surgery for metopic on the 15th and while it was both a physically and emotionally draining time, it passed quickly. You will be amazed how fast they recover...much faster than we do, lol. Best of luck today and I can't wait to hear the good news :)
Mother of boys
06-03-2009, 02:20 PM
Thinking about Jack and your family. Praying that the surgery went well. Update us when you can.
06-03-2009, 04:01 PM
Just saw this post today, and sending up some prayers for you, jack and your whole family!!!
06-03-2009, 04:48 PM
Just wanted to add my welcome and prayers for your surgery today. Be sure to let us know how baby Jack did when you have a chance.
06-08-2009, 03:19 PM
thank you all for your words of support and thank you for thinking of us and praying for Jack.
Surgery went well. (he had the cranial vault type) They said his sagittal suture was pretty severely closed, almost reaching into the dura of the brain. The stay in the ICU was the hardest. His blood pressure was low when he got transfered up from PACU, but got better quickly. Still, I was so scared and shocked by everything, that I cried my eyes out for most of the day. Once we got to the floor things improved quickly. His swelling was at its peak on the second day, and by the third day was significantly better. The doctors and nurses were quite impressed! When we left the hospital, both eyes looked wide open and pretty much back to normal. I was amazed.
The first day back at home went very smoothly. (we were discharged on saturday). He seemed very relaxed, even more relaxed than "normal" for him before surgery!
Now I am getting a bit more worried, though. I am not sure if it's because he is getting less pain meds than in the hospital, but he seems more uncomfortable and having a hard time sleeping. It really makes me scared when he cries so hard, because it seems like that only makes the pain worse. So, I just gave him another dose of his oxycodone, and he finally fell asleep for a nap. Does anyone remember how long they continued with the narcotics for pain? We are also giving him ibuprofen and tylenol alternating so he gets either one every 3 hours. And I am also worried that his bowel movements haven't really got back to normal either. He had one the day after surgery on 6/4, then we had to give him a suppository on 6/6 (which worked), and still no BM on his own since then. I am just so worried about my little baby !!
06-08-2009, 03:25 PM
First of all, YAY FOR JACK!!!!:yipee Congrats for being on the otherside!!! I can't offer much advice about post op stuff (we have a week to go), but I will be thinking of and praying for Jack! I am sure the post op moms will chime in soon! Can't wait to see pics of that new noggin!!!
It is normal for their sleep pattern to get really out of whack post-op. It is like having a newborn all over again. Some things that may help is keeping him in an inclined position. It seems to alleviate some of the pressure on their heads if they can sleep inclined on pillows or in a swing or bouncy seat.
Different babies have different pain, so don't feel bad for giving him the pain medicine, that's what it is there for. If you keep tylenol in him every 4 hours, that can build up and help with the pain also.
Also having you close for comfort when he sleeps can help too. I slept in our spare bedroom with our son in the same bed with me for about 4 weeks post op. Then I was right there to comfort him when he would wake.
Hang in there and I hope the sleeping and pain management get better. As always if you are really concerened, give his surgeon a call.
06-08-2009, 03:57 PM
Welcome to the other side, I'm sure you are so happy to be at home and have Jack doing so well. He's had a pretty tramatic event lately so it may take him some time to get back on track with eating, sleeping, and pooping. I know that the pain meds can mess with his BM's too. Hang in there, it sounds like you are doing everything that you should. Do you have a follow-up appt. coming up soon? You can always call your surgeons if you have any concerns.
06-08-2009, 05:22 PM
Congrats and welcome to the other side... Sam never had any narcotics except for one dose after his surgery. hey tried to give him Tylenol with Codeine later but it made him have an upset stomach... Therefore we stictly used motrin every 6 hours for a week or so and it seemed to do the job. My son was 10 months old when he had his surgery so we were able to use Motrin.... I cannot remember if you can on a child under 6 months. We also cosleep and he has never been a good sleeper so I dont have any advice there... Sorry... It will get better soon.
06-08-2009, 05:32 PM
Welcome to the other side! so glad to hear things went well xx
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