April 20th-22nd.

Jack made it through the surgery just perfectly and is now home sleeping in his bed!!

We arrived at NYU at 5:45 in the morning on Tuesday. Nervous and tired, we did all the pre-op stuff and talked to the nurses and Doctors who were going to be taking care of Jack. His surgery was scheduled for 7:30 in the morning and they took him at about 8. I was nominated to go with Jack into the OR, so I could be there when he went to sleep. They gave him something about 15 minutes before that so he would be calm and wouldn't remember anything. I am not sure how well that worked, but he went with me willingly even with the jumpsuit, booties and cap on. It wasn't until I put the mask on that he got mad and kept pulling it off.

The surgery went really fast. They said it takes about 1-2 hours just to get everything ready, and that the actual surgery would take about 1-2 hours. Dr. Wisoff came out to us at about 10:40, ok it was 10:38 to be exact (why I remember I really don't know). He said that everything went really well and his assistant was putting the last stitch in when he came to talk to us. They did the craniotomy and the fenestration and he said that when he went into the back of his skull that the cyst had shifted and was deteriorating the bone that covers some of his nerves. Mainly the one that controls the whole right side of his face. It was totally exposed which he said is ok, he had just never seen it before, and when they were irrigating it Jack's heart rate started to drop so they had to wait in between. I guess it is a good thing the surgery happened quickly and Jack didn't have any problem with that nerve!

We went up to the PICU on the 9th floor and waited for Jack to get up there and them to come out and get us. We were a bundle of nerves. I think we had to wait 15 minutes but it felt like an hour!! Terry and I went in and saw Jack, which was very scary and emotional for us. He was really upset and had a HUGE turban of gauze on his head. He was really out of it and wasn't opening his eyes. I think it took us a couple of hours just to calm him down when he finally fell asleep on Aunt Ing!!!

His head was VERY heavy and it was tiring trying to hold him even asleep. We were happy to have 3 sets of hands to pass him around. The PICU was crazy with 3 other beds in the room and monitors were beeping all night long. Jack was doing pretty good. In the beginning hours in the PICU he was getting really red and hot, with a rash all over his body, and then suddenly it would go away. It seemed like at the same time he would get really agitated and start thrashing around and then his heart rate would jump to about 220 bpm. We still don't know what this was a reaction from, but one nurse said probably something they gave him in surgery. I slept in the PICU with Jack the first night. Well, I wouldn't call it sleeping. We dozed here and there, but all the noise from the other patients didn't really make it good for sleeping. That and Jack waking up every hour or two.

They moved us on Wednesday into the Pediatric unit and out of PICU. We were thrilled to say the least!! Our nurse was terrible in the PICU and we were sure there had to be someone better in the other side. Right after we were moved they took Jack down for his MRI. Everything looked great on the scan, they said that the fluid was flowing where it should and that the cyst had even gone down a little in size. GREAT NEWS!!

That night I stayed with Jack again and we had NO roomates. Finally some decent sleep. We passed out around 8:30, and had to get up about 10 for more meds. I also had to keep him up til 11 for another dose of a different medication. After you have brain surgery they put you on anti-seizure medication, it makes you very irritable (and Jack got that side affect for sure). He has to take it every 12 hours. He is also on some steroids(for swelling), tylenol with codeine for pain, and pepcid for his tummy. We both felt so much better after getting a little sleep. Jack would have some wakeful periods where he was really alert and watching his favorite show, Mickey Mouse Clubhouse.

This morning we met with the surgeon again and they told us we could go home today!!! YIPPEEEE, the best news!! They took off Jack's turban and he was really happy. He finally could play with his hair, and stop trying to rip it off every 5 minutes. It must have been so itchy and sweaty.

The incision goes from the very top of his ear in a zigzag all the way up to the top of his head on the right side. It really is amazing what a great job they did. They barely cut any hair at all and they did a zigzag so that his hair will lay down right over the incision and you won't be able to notice it. Even in the picture it is hard to see.

We couldn't pack up and get out of there fast enough! He does have swelling that gets better and worse depending on where he is laying and he also has a black eye on the side where they did the surgery. Before we left, the floor pediatrician was doing rounds with some interns and stopped in to ask us some questions about Jack and the cyst. I thought it was good since they said they were just wanting to learn more about these cysts and what types of symptoms he had that led us to get a MRI.

Jack will continue with his therapy starting back again this Monday! For now he has no limitations, although he is a little blurry and not steady on his feet. We will go back in for a few more MRI's but I think we are out of the woods now!

Thank you to everyone for all of your blessings and for thinking of us. All of that positive energy really made this all so successful!

Saying goodnight for now with a smile from my son Jack on our way home from the hospital today!!

Surgery this Tuesday April 20th

Jack and I went to see Dr. Creighton yesterday and he was cleared for surgery. We have to nebulize him 3 times a day for the next 3 days and finish his antibiotics, but he looked better then he has in about a month. As long as he continues to improve, then we will be going through with the surgery! Oy!

Jack made some great progress this week with his therapy also. He is much more responsive and saying WORDS!!!! He said "car" when I put him in the car and "outside" (with pointing) when he wanted to go outside!!! He also said "key" for this toy that Elise plays with him during his speech sessions. All great and very positive things!!! We can't wait to see how he improves after the surgery.

Enjoy the weekend!

New surgery dates!

Sorry for the late update!! We have rescheduled Jack's surgery for Tuesday April 20th, at 7:30 in the morning!! He will be the first surgery of the morning, and we think that is a great thing. He will still have to be in the hospital for 2-3 days and then home to recover.

Terry's surgery has been rescheduled for April 30th. We couldn't possibly have Jack's surgery on the 20th and then Terry's on the 23rd!! That would be CRAZY!!!

I will be sure to keep you posted on everything as it happens, in the mean time enjoy this beautiful weather!!!

Surgery Postponed

Today we went to see Dr. Creighton for all 3 kids. Liam has a cough, pink eyes, and is complaining of ear pain, Caitlin has a little cough and pink eyes, and Jack has a runny nose. We were going to see if Jack would be cleared for his surgery even though we had a feeling he wouldn't be.

Jack has a ear infection, Caitlin has a ear infection and Liam has a cold. No actual pink eye, we are thinking allergy's? Ugh, all 3 kids on antibiotics for the next 10 days.

I tried to call Dr. Wisoff's office to cancel and reschedule the surgery but they were closed today for good friday. I am hoping we can schedule for the following week and all the kids will be healthy!!! Fingers crossed!

Lots of egg coloring will be happening at our house tomorrow! Then we have planned a nice quiet Easter at our house with a BIG giant egg hunt for the kids!

Our Second Opinion.

Last night we drove in to Aunt Ing and Aunt Marilyn's house in that wonderful rain storm!! It wasn't too bad until we got diverted off the Hutch and had to take a very long and scenic route. We had decided that it would be nice since the kids are on break from school to take them with us and go to the Museum of Natural History to see the T-Rex ( and other things too).

Our appointment was at 10 this morning with Dr. Jeffery Wisoff at NYU. We were EARLY!!!! I am never early, so that was pretty cool. We met with Dr. Wisoff while Jack napped the entire time on Terry's lap. We really liked him. He was very nice and informative. In his office he has a computer that faces you as you talk to him. Whatever he is looking at on his computer, you are seeing on yours, very neat. We got a somewhat similar opinion as Dr. Souweidane, but also somewhat different. Now even I'm confused!!

He wants to operate on the cyst by performing a microscopic fenestration, instead of a endoscopic fenestration. Basically, this surgery would be a little more invasive but he feels that he prefers the outcome better and has more control while doing the surgery. He also said that they are unsure of what the long term prognosis is if it is done endoscopically. So instead of just going in and putting holes in the cyst, he will go in the same place, right up by Jack's ear, and remove a piece of Jack's skull the size of a silver dollar. Then he removes the whole front of the cyst and pokes holes in the back of it. After that he also goes down through the middle of the brain to where the fluid flows, or is supposed to flow naturally, and makes sure that it is all working properly. He will replace the piece of skull that was removed and secure it with some plates that his body will naturally absorb within a year. Jack will have to spend 2-3 days at the hospital and we can stay with him the whole time. He will need subsequent MRI's at around 6-8 weeks post-op, at 6 months, 1 year and 18 months, and if all is good then that will be it!!!!

Dr. Wisoff was also a bit more honest about the PDD diagnosis. While he will not guarantee it will improve, he says that when something that big is pushing on your brain, that wasn't always so big and you reduce the pressure, then it should make a positive impact! That was the best news of the whole day!! Oh, and his brain should expand back into the empty space that will be left after the fenestration. He showed us films of other cysts, before and after, it was all VERY promising!! There is a 10% risk that he can develop fluid on his brain that doesn't drain, like it has no where to go and if that happens then he has another 10% chance that he will need that drained as well. Other then that there is about a 1% chance that anything really bad would happen, which we know isn't an option.

We decided to go ahead and schedule the surgery while we were there today. He can take us this Tuesday (after moving one surgery later). Now we just have to hope that Jack's runny nose doesn't go into anything else or we will have to postpone it. It appears that Caitlin has a little something and Liam has a cold as well. Hard to imagine that it is going to happen so fast. We have mixed emotions, but we know that it is all for the best. We need to give Jack the best possible chance at having a normal childhood and living the rest of his life with this arachnoid cyst nothing but a thing of the past.

Once we scheduled the surgery they sent us over to the hospital to have Jack's blood work done. 5 vials of blood, but he was a trooper! We had to send Aunt Ing to the museum without us because it took 2 hours for the pre-op work.

At the end of it all we got to meet Ingrid and the kids at the museum, saw the dinosaurs, the big whale and the butterfly exhibit ( with a few stops in between of course).

All 3 kids had butterfly's land on them which is a sign of good luck. We'll take it!

Thank you to everyone for all your thoughts, prayers and kind words. It is very much appreciated!

Jack started his therapy!

Jack started his ABA therapy this past Monday!!! It is kind of exciting in a way to get it all going. So far he is only getting about half the recommended amount of ABA that he should due to lack of service providers. He is receiving 5 - 90 minute sessions a week, he should have 12- 90 minute sessions a week. His therapist is wonderful and he has really taken to her!! I think that is half the battle! Monday's are going to be the craziest day in our house I think, Jack has one 90 minute ABA session at 1, then a 60 minute speech session at 2:45, then we have parent training at 5 for 60 minutes, and to top it all off Terry has PT Monday mornings also!! And I thought we were busy before!

Other good news to report is Terry has FINALLY been cleared for his rotator cuff surgery and has a surgery date scheduled!!! He will be having his surgery April 23rd, at Hospital For Special Surgery in the city. He has waited a long time for this. It is nice that he finally has a date and he can get on with healing after being in pain for so long.

We are waiting for our next appointment at NYU with Dr. Jeffery Wisoff this coming Wednesday. It really can't come soon enough.

Enjoy the beautiful weather today! I can't believe they are calling for possible snow tomorrow!

Pictures of Jack's MRI

I was fortunate enough to get a chance to see Jack's MRI scan today. It is very disturbing. If you are upset about the images I apologize. I feel that I have committed to this blog, and will post all information as I receive it. These are 3 pictures taken with my iPhone off a computer so they are not the very best images, but you will get the point. The cyst can be seen on the left side of the skull in the photos. It is white in one photo and grey/black in the other two. The doctor says that once they fenestrate the cyst, the empty space will remain in Jack's head. His whole brain is formed and in his head, but the cyst has pushed it out of the way. So, removing it, or draining it, will stop it from growing and hopefully any pressure that it is causing on the brain will be alleviated.