Little Turtle

Here are some pictures from Halloween and our turtle! He was not too happy about his costume, but was a good sport for awhile. The costume was a little too warm for our Texas weather.

We had Uncle Adam over for dinner and we went trick-or-treating around the neighborhood! We had a good time. Jackson was a little fussy this afternoon and evening...don't know if it is his molars or what?!? He is putting everything in his mouth...so that seems to be the case. Our little Jack-o-lantern is off to bed now. Happy Halloween...and have a good weekend!

Home Sweet Home...

Well, we made it home Tuesday afternoon after a long, but good road trip. I am sorry it has taken me awhile to post, but so much to catch up on after being gone for so long. We were in Detroit for a little over 4 weeks, but Jackson and I have actually been out of our house since the beginning of July. Before Detroit, we were doing treatment therapies in Austin and staying with my parents. So we are truly happy to be at home after 4 months away! We also got hit with IKE, but Tony did a great job getting our house ready for us with all the remodeling repairs and cleaning.

Tony was so happy to see Jackson! It was so hard for him to leave Jackson 2 days after surgery and wait 4 weeks to see him. He just cannot believe how "different" Jack is now. We are really enjoying our time together and watching our son with new amazement!

Yesterday, we had a first Occupational therapy appointment at a private facility that deals in Pediatric Neurodevelopmental Therapy. The therapist was so awesome with Jackson and has over 20 years of experience...I am so glad we found her! We will start going to Occ. Therapy 3 times a week beginning next week. We still have to get evaluations for PT, Speech and Vision therapy. (Vision since Jackson lost left sided peripheral vision from the surgery...but will get better again over time.)

Today, we took Jackson to see his Epileptologist here in Houston. He too could see great changes in Jackson and commented that we could not be in a better place post-surgery. We agree! We will follow up with him in 3 months for an EEG and evaluation.

Jackson is sleeping through the night in his OWN bed in his room, he is all over the place, moving, grabbing everything in sight, trying to get our dogs, talking so much more...even mimicking us. We are just so blessed and ecstatic to see all these changes on a daily basis. We continue to thank God everyday for our little thriving miracle.

I will post pictures tomorrow of our road trip home and Jackson! Thanks for checking in and the continued prayers for Jackson's recovery!

Jackson's last hug and "goodbye" to his favorite therapist...

Our last night here!

First of all, I am happy to say that my new beautiful, baby niece, Emma Claire Wyss, arrived all safe and healthy today! She was born at 4:00 am and weighed 7 lbs. 3 oz., 20 inches long. We are so happy for Molly and Dave in welcoming their first baby! I know they are going to be incredible parents! We can't wait to see lil' Emma on Saturday in St. Louis.

Jackson and I are so excited to be heading home! We are all packed and ready to go tomorrow after therapy. My sister, Maggie arrives about 1:45 and then will come to the hospital. We will probably get on the road by 4 pm and travel for a few hours.

Jack has been great since my last post. We have not had any more crazy events. I really pray that was a one time occurrence. We had the same nurse last night that was there when it happened, and she said she will never forget Jackson! ;-) All the nurses, therapists, doctors, residents...are so good to him and are all sad to see him leaving. (even though it's a good thing.)

Dr. Chugani came in for his last visit yesterday to say goodbye, because he was heading out of town. He thinks Jackson looks great and is so pleased with his progress to date. We will return for a follow up visit in 6 months, but will keep in touch between now and then. We are so appreciative to Michigan Children's hospital and Chugani's team for the huge role that have played in the healing of our son. Our entire stay has been top notch...(well except for the food.) The staff is caring, professional, and their attentiveness is unmatched.

What a long road it has been for Jackson. Definitely a roller coaster of events and emotions, but we are so thankful for the end results. We do have a long road ahead with recovery and catching up, but I believe that Jackson will achieve greatness! He already has! I have never been one to listen to statistics, even though I have been told time and time again by some doctors. I am a huge believer in "With God all things are possible." To me it is so important to stay positive...and never lose HOPE! (even though we have had our moments.)

Also, "thank you" simply does not convey the amount of gratitude we feel to all of our family, friends, and complete strangers who have supported and prayed for Jackson. It has been overwhelming to see so many people be so generous, kind and encouraging to us this past year. Not just during the surgery, but from the beginning when Jackson was diagnosed...there were so many wonderful people that prayed for Jackson and even placed him on their church prayer lists and kept them updated throughout his journey. We can never thank you enough! Prayer and support is what has carried us through this past year! We could not have done it without the help of others. If you have prayed, sent a message, emailed, called or checked in on us, I just want to know how much it has meant to both Tony and I. From the bottom of our hearts, we will never forget the love and support that you have given us and our son. Also, I am so not a natural "blogger," but I do appreciate you visiting Jackson's journey through surgery and recovery. I decided to do this blog last minute from my friend, Tera's, suggestion. I was scared to death to really post anything about what was going to happen, because nothing was for sure. However, I knew a lot people were concerned and that if I could keep everyone updated then it would be that many more prayers going out for Jackson...so I took a "leap of faith" and am glad I did! So thank you....

I will try to post some pictures of Jackson tomorrow before we leave. I didn't get a chance to take any today. We thank God and each one of you for your prayers. We feel so blessed as we leave Detroit seizure free!

An Unexpected Phenomenon????

Weren't we just smooth sailing through rehab?!?!? Well, Jackson decided to pull a huge SCARE on me this morning. The past couple of nights he has been waking up in the middle of the night and playing in his bed for hours. I noticed he did it again last night about 3:15 am and the last time I remember seeing him awake was at 4:35 am. Well, at 6 am he gets a dose of medicine. His nurse came in to give it, and I noticed she was in the room, but was still slightly sleeping. Jackson usually takes anything down, sleep or awake, when you put it to his mouth...no problem. So the RN...started saying "Jackson...Jackson...," then asked me if he was sometimes hard to wake. This alarmed me and I told her...Never! She said, "He won't wake up." I jumped up and ran to see if he was breathing. His levels were fine. We sat him up...shook his body...everything...NOTHING! She called Rapid Response Team. I couldn't believe it...NOT AGAIN!!!! I saw the same team come in that were there the horrible night he had the Dilaudid reaction. Then I look over and Chaplin Damian is in Jackson's room again too! It was another heart wrenching moment. A nightmare!!!

They all tried waking Jackson up...still no response. The checked his pupils...they were tiny, tiny little pen dots...barely retracting. He seemed comatose. I was freaking out...he was just up playing...what happened?!?!?

They did say it was a good sign he was breathing on his own and maintaining good levels. They tried response with pain on his sternum...he moved a little but no eyes opened. Then they did a blood gas on him and all levels were perfect.

Next step...was to get a CAT scan to make sure there was no bleeding or a clot. On the way down, we went to ICU to have a Doctor look him over there to make sure. Again, no response...so he took his stethoscope and ran it as hard as he could over his sternum...Poor Baby! He opened his eyes and looked and then was back out. So still only responding to pain.

We went down to the CAT scan...had it done very fast...in a matter of 10 minutes we knew the CAT scan was normal. Thank goodness there was no bleeding or swelling.

Still did not know...everyone kept saying, "Maybe he had a seizure, and he is postictal now." Which postictal means the period following a seizure or convulsion...a state of drowsiness. (which he has never had) Even though they said during this time right after surgery, he could experience "unusual" seizures...I still didn't buy it this time! It just didn't add up, plus his pupils were teeny, tiny instead of dilated.

Then we get back to the room...it was now 7:15 am (1 hour and 15 minutes later)...we were situating him in the bed...when Jackson did this BIG stretch...and opened his Big Blue eyes with big pupils, SMILED, LAUGHED and blew BUBBLES at the nurses and doctors. It wasn't funny...even though he thought so! No one could believe it! He was his normal self.

After Neuro, Neuro Surgery and several different Doctors evaluated...they ordered medication levels (which we hadn't had in almost 2 weeks). Those came back within range. Then an EEG. I was scared to death to see what the brain reading would show, but I just knew that he didn't have a seizure. They did an hour reading....and the results came back that there were NO ACTIVE SEIZURES! Thank God! There was still some abnormal spiking in areas, but they said that is completely normal considering he just had surgery and his history. There could not be better news!!!

Now the difficult part is...whatever happened is an unexplained "phenomenon" of sorts. Dr. Chugani was supposed to be out of town until Wednesday, but happened to get an earlier flight back today. He just came up to check on Jackson and another patient without knowing anything. (Such a good Doctor) He and the other Doctors are not too concerned with this incident. Dr. Chugani has seen "100s" of different kinds of these occurrences following surgeries and they usually never happen again. There is a lot of trauma to the brain after these surgeries and the reorganization could play a role. Another Dr. and therapist said they have seen this a couple of times before too! I don't know if this "unexplained" is good or bad, but I do know I don't like what I saw and not knowing. However, all necessary tests were done and nothing came back abnormal. We pray this doesn't happen again! I have never been so happy to still be at the Detroit hospital and not at home. Having the machines with the vitals helped so much! The staff was again amazing with their response.

Of course, this happens when I am by myself! I am sure it was harder on Tony with my 5 am wake up call that Jackson wouldn't wake up and not knowing everything that was going on. Thank God that it wasn't anything more serious! I am again today counting our blessings that Jackson is still seizure free and everything is okay! What a day!!!!!!

Please pray that we have a peaceful last week in the hospital and continued recovery for Jackson!

Just me and Jack...

My Mom and Dad left for the airport at 5 am this morning, and we were sad to see them go. It was so nice having them here! We can never thank them enough for their support and spending so many days in the hospital helping us through this time in our lives.

I felt a little lonesome this morning, however, Jackson cheered me up fast with his happy self. In fact, he has kept me pretty busy all day. I am just now able to sit down and post. It has been hectic, but only 4 days and 4 more nights until we head home! We can do it!

We had a great weekend. Yesterday we went shopping at this huge mall. Since my husband, Tony, complained that Jackson was in the same shirt 2 blogs apart...I decided to cease the opportunity! It was good therapy for me! ;-)

Then we went to the Detroit Zoo to an event called "Zoo Boo." It was really festive and a lot of the kids dressed up in costumes. There were elaborate Halloween decorations, treat stops and fun activities throughout. I felt bad for Jackson, because all the kids had their costumes on...and his new turtle costume is in Texas. It was also FREEZING...but well worth it.

Today was back to usual with therapy. During his Occupational therapy, the therapist also brought in the musical therapist. Jackson had a good time with the singing, music instruments and her guitar playing. His favorite song was "When the Ants go Marching One by One...," and this girl was all into it! He was laughing up a storm and playing with the bells. At the same time, the clinical manager had a photographer taking pics of Jackson during his therapy for an exhibit for the Michigan Children's Rehabilitation unit. She is going to send me the pictures in the mail. He had quite the stimulation with everything.

He did great in all of his classes today...stronger and stronger each day! It is amazing to watch. Attached is a picture of him at the Zoo and standing behind a bench in Physical Therapy...with very little assistance!

Still going strong...

Even though he looks innocent enough in the picture...his PJs say it all! (Not that we are complaining)

Two weeks now of seizure freedom!! We could not be more thankful. Jack is still making new small connections every day, and we enjoy and appreciate watching each one of them. What a blessing to see the healing God has done for our little boy who suffered from more than 100 seizures a day!

We are ready for the weekend, which means another outing! We live for those breaks now.

Mr. Social

Jackson has a new found love for people and faces. He is interacting with everyone in therapy. He really likes watching the other kids (all in their business) and even "flirts" with his therapists. His reward at the end of each session is that he can "snuggle" with them. That is his favorite part!

Jack is even showing new emotions with his face and gestures. He pouted for the 1st time. (i know that is weird to most, but if he was unhappy before he would just cry). This time...the PT was making him do a side sitting position for a really long time and he stuck his bottom lip way out and he had the BIGGEST puppy dog eyes. He just kept getting sadder and sadder with his chin down, until she gave in. It was pretty funny!

All this work seems to be helping him sleep through the night so much better....I am sure no seizures has much to do with it too! The last time he slept through the night was December 2007. It has been awhile, but we are almost there!

Staying longer...

Jackson is still doing great. He was able to get his incision sutures removed yesterday. He did not even cry out once the whole time...and there were so many to cut and pull! His incision is healing nicely.

He has had another 2 full days of therapy and seems to be adjusting to the long schedule. In therapy he is already doing some things that he hasn't done before, and some things we are still working to get back. It all has to do with his temporary left sided weakness from the surgery, but he is picking up more and more each day.

Dr. Chugani and the doctor over the rehabilitation unit would like Jackson to stay longer in inpatient therapy. They feel this is a crucial time for Jackson and that if he could get intense therapy longer, then he would benefit even more. If we were to go home now, he would not be able to get as much therapy in a day or week in Houston. So, we will be staying until Friday, October 24th! It is longer than we anticipated!!!...but we will do whatever is best for Jackson.

This new date means my Mom and Dad will leave me on Monday. My Mom will go to St. Louis to be with my younger sister, Molly who is due next week! She is having her first baby...and we can't wait for Emma to arrive. My Dad will fly back to Austin. Originally, he was going to drive back with me, but since we are staying longer he must get back to work. So my older sister, Maggie, is flying up on the 24th and will drive back to Texas with Jack and I. Should be a road trip to remember with the two of us! We will stop again in St. Louis to see our new baby niece and Jack's new cousin on the way. ;-)

Yesterday, we had the pleasure of meeting another family here in Detroit for testing to see if their daughter is a surgical candidate. They actually live in the St. Louis area...not too far from Molly and Dave. Sophie is 3 years old and is a precious little girl. She has been able to develop really well and do so much despite having Infantile Spasms, but she still has many seizures a day! Please keep this little one and her family in your prayers too. Please pray that they receive the answers they hope from the testing for surgical candidacy.

We continue to hope and pray for Jackson's complete recovery. Thank you for checking in on his progress!

Jack's 1st Outing

My mom, dad, Jack and I left the hospital for Jack's first outing post surgery. Since being here, we have heard all the nurses talk about the Cider Mills....and how we need to go. So we decided to go to the town of Franklin. The Cider Mills are a tradition in Michigan this time of year. Fresh apple everything, fall festival booths, lots of kid activities, etc. Everyone brags about the cider and doughnuts...which we had never heard of this combination before. However, it was really good! Detroit gets a bad rap, but the suburb areas are absolutely beautiful. Franklin was the most picturesque town. The leaves were turning bright colors, great weather...we could not ask for a better day.

Jackson loved being outdoors...he always has. He really had fun on the carriage ride through the town. The driver went pretty fast...so he was bouncing all over. Then we drove through Bloomfield Hills to Birmingham for a late lunch...which is another great area.

After a full day, Jackson still had so much energy last night. In fact, he was a little WILD. Not that I am complaining, but he far exceeded our expectations of his 1st day out of the hospital. I thought for sure he would go to sleep early when we got home, but he was up until 10:30 last night bright eyed and ready to do more. We continue to enjoy our little resilient miracle!

More Pictures from the Cider Mill

and a few more...

Jack's Papoo carrying him...he was a little tired as you can see when we made it back to the car, but it didn't last long!

New Spark

Today is even better than yesterday! Still all smiles. Jack smiles so much more than he used to and there is this new "light" behind his eyes. It's just different..in a good way. A new sense of awareness...a new perspective. It is so amazing to see already. We have been seeing small differences in him everyday, and the doctors say the "big" changes will hopefully come in a couple of months. It is just so gratifying to see these small changes (which are HUGE to us) so far!

We can really tell he is feeling so much better. His head doesn't seem to bother him anymore. He did great in therapy. We are so glad he is doing this inpatient rehab, because I know that if it was just me I would not push him like they do at this point.

Today is also a special day because it is our 5th Wedding Anniversary...and even though Tony and I are apart, we still have reason to celebrate. We could not ask for a better gift.

Here are a few pictures of Jackson at breakfast, lunch and therapy today. (sorry- my pics are a little blurry) Thank you for keeping Jackson in your prayers!

7 Days Seizure Free!

A week ago today was Jackson's 2nd Surgery...so that means he has been a whole week without seizures! It feels like this 2nd week has gone by fast! Such a blessing!

We made it through the day! Poor Jackson wasn't happy about moving around too much with his head yet. He was a trooper though. He had 2 - 45 minute PT sessions where they work on Gross motor skills, 1 - 45 minute - OT session which is more fine motor skills, and the Recreational Therapy for 45 minutes which sort of combined them all. Speech was off today.

He was a sport about it until the last session and then he had a little meltdown. Although, considering he is only a week out of surgery he did really well. He is just used to taking his naps, and didn't get one until 3:30 today.

He will have some therapy tomorrow on Saturday and Sunday he will be off. We were able to get a day pass to take Jackson outside the hospital. It should be nice this weekend, so it will be good to get some fresh air and do something fun outdoors.

Jack should sleep well tonight, which means me too! Thanks to all for continued prayers for Jack's healing! Hopefully we will be heading home this time next week!

In Rehab

Jack is in the rehabilitation wing now. He didn't have any therapy work today, but he definitely was all smiles and laughs this afternoon. He was able to get his IV taken out too!

Not too much report today. Pretty much a day of rest, before he starts his 9 am - 4 pm therapy! Seems a little much for a 1 1/2 old out of surgery, but they obviously tailor the program to his needs and ability...with a few naps in between.

He gets to wear his own clothes tomorrow and has a little more independence to leave the room.

We continue to count our blessings! Thanks for checking in on Jack's progress!

Moving on Up

Jackson continues to do great post surgery! He had a full day. Neurosurgery removed his EVD tube, which was placed in the ventricle of the brain. It was a drainage system to keep the fluid balanced, pressure low and even reduce possible fever post surgery. He had to get 1 stitch when it was removed, but he didn't fuss too much.

He is now going to be on all oral meds, so the IV will be out tomorrow!

He is also checking out of the 5th floor and moving to Rehab in the morning. The therapists came to work with him today, and they are impressed by how strong his left side is post surgery. He pretty much has equal movements on both sides.

Jackson does get exhausted easily. If he eats, then he needs to sleep. So you can imagine a workout with the therapists really puts him out.

It has just been amazing to see Jackson wake up and not have a seizure! Usually, his spasms (seizures) would occur in clusters after waking from sleep or naps. I would always have to go slowly with him...letting him relax and wake up. (not that my method ever worked!) These therapists just woke him from his deep sleep, immediately made him get on the mat and do exercises. I was just watching him and thinking about how we have dreamed and wished for this day for so long, and now it is becoming a reality. He was doing simple things without hitting his head on the floor from a strong spasm, or on the table or one of his toys. As some parents know all to well, it is emotionally and physically exhausting to watch your child do this every single day. When you go through something like this, you learn to appreciate the little things in life and every small development. This past year has not been easy, but we have learned to never take one little thing for granted! I know he is lucky! I know our prayers were answered!

We continue to be so thankful to God and look forward to each new development in Jackson's life!

Resolved

Jackson's tongue is working again! ;-) The cause was due to the max swelling of the brain. He is able to eat. The Neuro and Surgeon were not worried, since he was able to drink a bottle. They both said his muscles were working. Speech Therapist thought he did fine this afternoon. All is well!

Jackson will get his drainage tube out first thing in the morning. He will check out of this floor on Thursday and then will move to the Rehabilitation for a week to work on Physical Therapy, Occupational Therapy and Speech. If we have to be in Detroit an additional 7 -10 days at least he will receive lots of therapy to jump start his road to recovery.

They will do PT, OT and ST - each twice a day for 45 minutes each. Poor little guy won't get much of a break, but we will have to think of something fun to celebrate soon!

Tongue Issues?

We are so grateful to have another day and night with no seizures! What a miracle for our son!

Jackson is still a little uncomfortable and uneasy when he is awake. Still to be expected after a major brain surgery. We didn't get a lot of sleep last night, because his latest IV was causing the alarms to go off constantly. I think they finally corrected it this morning!

He is having some issues with his tongue now. He gets a bottle down fine, but the eating is more difficult. He has never had problems eating before. I started him with some oatmeal and baby food, so he would not choke. He just kept it on his tongue and had difficulty shifting it to the back. He did finally swallow, but it was not natural. Also, as you can see in almost every picture....he loves his pacifier! He won't take it anymore!!!!

His Neuro was in and said it could be caused from the swelling of the brain. Also, the MST procedure on his right motor strip could also cause this effect around his mouth temporarily.

They ordered a Speech Therapist in for an evaluation this morning to evaluate. A baby's brain has so much elasticity that when a part of the one side is removed, then the other side will take over. It can take time, but no one seems to be alarmed by this. He wants to give it a few days.

Also, he is going to take Jackson off 1 of the 4 meds because he is so sleepy. Topamax will be gone!

Thank you all for keeping him in your continued prayers for a smooth recovery and seizure freedom!

Jackson and Dr. Asano

One more key member of the team, is Dr. Asano who oversaw the mapping of Jackson's brain. He detected where the seizures were coming from and where the healthy tissue/function was to remain. He really led the surgeon in the resection of Jack's brain while the grids were in place.

All Cleaned Up...

and back to sleep. I'll get some "awake" pictures today!

Feeling Better!

The dressing came off yesterday afternoon. The catheter came out too! I know Jackson was happy about that. His exterior swelling looks quite good. Usually, there is a lot more swelling around the face with the eyes being swollen shut. His incision was not too bad either. (I guess...but it's still hard to see what he went through) It goes all the way from the front...down the middle to the back and around by the right ear. They took out his back quad, so it is a little larger than what I anticipated...but it should heal really well.

He is much more alert today. He is eating and drinking good. I was able to hold him in the rocking chair. Also, he had a sponge bath in the bed...which made him feel better too. He looks so much cleaner without all the Betadine everywhere.

I can tell his eyes are really starting to open up! It is so good to see little bits of him shining through. He is still moving his left hand and arm too. Today should be the worst for swelling around the brain, but again he is beating the odds. We are so proud of him.

Tony left back to Houston yesterday, and Jack's Grandma (tony's mom) left this morning! I know Jack was sad to see them both go! He will see his Daddy hopefully in a couple of weeks, and we really appreciate all the support from his Grandma. We could not have gotten through this week without her help!

Jackson with Dr. Chugani

Dr. Chugani is head of Jack's entire surgery process and was responsible for all the testing to find Jackson's focus and candidacy for surgery. He actually is the Doctor who first pioneered using PET scans in detection for Infantile Spasms surgery. He has been wonderful to work with...so caring, prays for all his patients before surgery, and even gives his home number! And this Dr. is busy! They do at least 1 of these surgeries a week. He does so much for all these kids.

He thinks Jackson is doing really well. Right now is when he is most vulnerable for seizure activity, because of the trauma from the surgery itself and the stress. Additionally, there is a period after surgery called "winding down." Epilepsy is a "learned" behavior throughout the brain, so after removing the area, the brain has to learn to quiet down. However, it is a good sign we haven't seen anything yet and we continue to pray that we don't. He just doesn't want us to be alarmed in the next few weeks. Although he did say Jackson is a Texan so he should do great!

Sunday - 48 hours after

So far so WONDERFUL! Jackson was diagnosed with Infantile Spasms on December 1, 2007. He has had countless seizures everyday of his life for the past 11 months. Well, today we can say the past 2 days have been SEIZURE FREE! We don't know what tomorrow may bring, but we are not even going to look for it. We are going to look for all things positive and continue our road to complete recovery!!!! We feel so grateful and blessed, and look forward to what God has in store for our little man.

There are so many children that are affected by this catastrophic form of epilepsy. Like most, we never heard of Infantile Spasms until our baby was diagnosed, but after researching and learning, it is incredible how many kids have IS. We pray the same wish for all the IS children, as we do for our son and that is to find their answer to be Seizure Free and overcome this neurological disorder!

Jackson is still sleeping a lot, but waking some to eat and watch TV. I will be glad when he is able to have the drain removed from his head and the the catheter out. I think he will be a lot more comfortable. We will continue to keep you updated! Thanks to all!

Pictures from Morning after Surgery on Saturday

Comments

I had many people email they could not post a comment or were having technical difficulties. It was my fault. I just realized that I had the blog set up privately, so it should now set up if you want to comment without an account. Sorry!

Morning after Final Surgery

Well we could not have asked for a better night! He did so good. Slept the whole time and did not have to take any pain medications from 7 pm until 8 am this morning! Jackson was very comfortable even though his face was pretty flushed last night and started to swell, but this morning he has very minimal swelling.

He is moving his left hand, squeezing our hands, left arm, everything! We are so happy! Dr. Chugani did say the swelling around the brain is the worst after 72 hours, so tomorrow his hand may be more limp and might sleep a lot on Sunday.

Jackson just had some Pedialyte. We have started his oral meds as well. They are hitting him hard with anti-seizure meds to be aggressive on anything leftover that might be trying to trigger. Sometimes when you remove a large abnormal seizure focus, the brain wants to react. He will be on Depakote, Phenobarbital (very temporary), Topamax and Vigabatrin. So many medications, but it is better to be aggressive and proactive now.

The surgeon and Dr. Chugani have all been in. They think Jackson is doing beautifully and he has won himself a spot on the 6th floor out of ICU! We pray for continued smooth sailing through recovery!

Thanks to all for checking in on him after surgery!

In ICU

Jackson left recovery to ICU around 4:30. We were able to meet him at the elevators and go up with him. He looked so good! No more wires! Just a little head cap and a few drainage lines. They also have him off the ventilator. He is doing really well! The surgeon did say he would have a temporary weakness on his left side, but he is already moving his left hand.

Jack will be in ICU until tomorrow and then should be back in a regular room. We will be in the hospital another week, and then in Detroit another 7 - 10 days after that. We now hope for a speedy recovery!

Jackson is heading to Recovery

The surgeon came to tell us Jackson is closed up and everything went smoothly. He is going to recovery. We thank God for keeping our baby safe during this long surgery and for guiding Dr. Sood's team (and his hand) in the resection of the abnormal areas. We are so thrilled to have this surgery behind us. Now we have to get him feeling better!

They are going to extubate Jack and see how he does. If he has breathing difficulty, they will put him back on the ventilator for 24 -48 hours. Something tells me that he will be okay!

Again, thank you, thank you, thank you for getting us through this difficult time. We continue to pray for the miracle of a successful surgery.

Surgery Completed! - 2:30 pm

They have completed the MST and things look really good. The left over spikes were reduced dramatically. Dr. Sood is closing Jack now and he will be in recovery at 4 pm and back up to ICU by 6:00.

We are so grateful for all your continued prayers through this entire week. We feel so blessed. Please keep Jackson lifted in thought and prayer until he is in complete recovery. We hold faith that Infantile Spasms is a thing of the past for this special little boy!

Final Surgery Update - 1:45 pm

The team just came to consult with us. They have now removed the entire parietal and temporal cortex. The readings on the EEG look good. However, there is still some large spiking coming from the motor sensory cortex involving his left hand.

They discussed proceeding with a procedure called Multiple subpial transection. MST is a treatment for epilepsy that may be an option when seizures begin in an area of the brain that cannot be removed; for example, areas associated with vital brain functions such as movement, sensation, language and memory. MST stops the seizure impulses by cutting horizontal nerve fibers in the outer layers of the brain, sparing the vital functions concentrated in the deeper layers of brain tissue. The surgeon will not be removing the motor cortex, but plucking the fibers that run horizontally and stopping the seizure activity. Jack will have a temporary weakness in his left hand up to 6 weeks, but will return to normal.

We have decided to go forward with this recommended procedure, because of the large spiking in this area. It should take 45 minutes.

They seemed to be really pleased with things! Please continue to pray that any left over spikes will not produce seizures and Jackson will be seizure free!

Update Final Surgery - 11:15 am

Dr. Chugani came earlier and said the first incision occurred approximately 10 am. Jackson was doing good. He was getting his blood transfused and would keep us posted.

Then the nurse called at 11:15 and said Jack was stable. Dr. Sood was still removing the Temporal/Parietal Cortex. Not much more to report until the next update.

Pictures from Today before Surgery

These are from this morning before surgery. Included are some pictures of the head wrapping with all the wires that have been connected to measure his brain activity, so you can see how involved the process is. Following those are pictures of Anesthesia taking him down to the OR.

Pictures of Jackson

Here are a few pictures of Jackson from the beginning of the week. These are from Tuesday just before his first surgery getting his yellow scrubs on to ICU with his favorite "stuffed" support group.