ICU - 9:30 pm

Our little baby boy has had a rough night so far! We hope it gets better for him from now on. When we finally got into the ICU around 4:15, you could tell he was in pain because he would cry as soon as he woke up. They are giving him morphine to help with the pain management or tylenol with codeine. I just feel so bad for him and wish we could fast forward time. It is just horrible to watch your baby endure something so traumatic.

Then on top of the pain, he began having lots of seizures after 6 pm. They stopped all his seizure medications this morning so he would have plenty of seizures for them to collect data. Well he has! They are the spasms, which are like startles, but they were so close together I thought he was going into a convulsion. They were constant. So I asked for the EEG doctor to see if they were still making rounds. The Doctor actually stayed late to check on Jackson and I was SO glad to see him. He has gathered enough seizures, to where they can put him back on meds. Thank goodness! They gave him a valium type med to stop the constant seizures...and then started him on an IV drug called Depakote, because his usual meds are taken orally and he hasn't had food or drink yet.

Since they have given him the medicine things have slowed down. Jack is asleep now and I hope he sleeps for a long while!

He is also starting to swell. They said Day 2 would be the worse and it would be better by Day 4 or 7. His eyes and forehead are really puffy.

Tony just went to take a nap and I am covering until 1 am. Please continue to pray for Jackson's seizures to diminish now that they have enough seizure data until the resection and also for his pain to subside...AND for a speedy recovery! Lots of prayer requests!

I have attached a few pictures of him in the ICU tonight. Thanks for checking on him!

Update on Recovery - 3:30 pm

It has been a longer afternoon than morning. He was supposed to go to ICU around 1pm, but they didn't have his room ready. So they let Tony and I go into recovery to see him. Jackson was resting and looked really pale. His eyes were a little bruised and he was grayish white. Even his red strawberry birthmark above his lip was white. He had 3 IV lines on him...one on each foot and his left hand. They also had a drain from his head and he was losing a good amount of blood, but not too big of an amount. They were going to watch it and he might need to receive some blood, but hopefully not. It was hard to see him like that...the nurse tried to wake him and he started crying a weak cry. There were so many lines coming out of him! It was good to give him kisses and hopefully he could hear our voices.

Now they just brought him up to ICU at 3:30 and those 2 and half hours made a big difference. He has much more color and he actually looked much better. Still sleeping peacefully...his Grammy and Grandma got to see him quickly and they thought he looked good too.

The nurses are getting him set up now in his room and then we will be able to be with him finally!

Update on 1st Surgery - 12:10 pm

The surgeon, Dr. Sood, just came and said Jackson is finished and will be in recovery for the next hour. They just finished closing him up. They placed 100 grids on the right side of the lining of his brain and a few exterior electrodes on the left side to record the data. He said Jackson did fine...No complications! He will be transported to ICU in the next hour and we can go up with him.

We met with the head facilitating nurse and the facilitating Pediatric Neurologist, Dr. Chugani while Jackson was in surgery. Dr. Chugani is the main doctor that we see in Detroit. Good news for us is that Dr. Chugani starts his two week service rounds on the floors tomorrow. He will be the one checking on Jackson daily and through this weekend after his second surgery and probably up until we leave on the 15th. Otherwise, we would not see him as much.

We really appreciate all your emails, prayers and thoughts for Jackson. He is a lucky little boy to have so many people care.

love, meghan and tony

1st Surgery - Grids

Jackson just went in at 8:30 eastern time. We got to the hospital at 6:45 am and checked in to admitting. Met with anesthesia, surgeons, nurses, residents, etc. Jackson was in a great mood this morning. Very playful and enjoyed all the attention. It was very hard to let him go, but they assured us he would be in good hands.

The first incision will be in an hour. The nurse will phone us every hour to let us know his progress.

Also, The MRI from yesterday came back normal as we expected.

Thanks for all your continued prayers!

Meeting with Surgeon and MRI

We had a great night sleep at the hotel. We went to the Detroit airport at 11 am to pick up Tony. He was so glad to see Jackson...it had been a week since he saw him last.

At 1:45 pm we met with the Surgeon. He was very thorough on all aspects of the surgery. He reiterated from all the testing he felt confident the majority of Jackson’s seizures were coming from the right side and he would be able to remove the focus. He didn’t think we would have any surprises.

Jack’s case is a little trickier, because he does have some seizure activity involving the left side of the brain too. (a small focus) Usually surgical patients are candidates when all activity is on one side of the brain. However, they feel when the major focus is removed the other will either go away or will be able to be controlled. It is small and they do not see many seizures from that side…they think it is just the effects of the right side. So please continue to pray that after surgery both sides will be healed!

He also had a High – resolution MRI today. It is the last of his tests for the surgical work up. He had an MRI in the very beginning when he was first diagnosed with Infantile Spasms and they didn’t find anything. This one has a different software that is more intense on capturing anything that might help detect a cause, such as a lesion, tumor, etc. Nothing has ever shown up before….it came back normal. We will have the results tomorrow.

Jack has been so good today. He wasn’t allowed to eat after 10 am and his MRI was at 4 pm. He did not seem to mind not eating...which is surprising! ;-) They sedated him for the MRI. It is so hard to watch him get sedated for all these tests. He is always so brave and just let’s everyone do their thing.

We have an early start tomorrow – 7am. He will be in his first surgery by 9 am. It lasts 4 -6 hours. He will be in ICU overnight. Tony and I will take turns staying with him. Only 1 person is allowed at a time.

We hope and pray for a smooth first surgery and will keep you all posted.

Thank you for checking in and your continued prayers! love, meghan

Last Leg of the Road Trip to Detroit

My Mom, Cindy (Tony's Mom), Jackson and I made it! Today was a long drive from Lake St. Louis to Detroit, but we had a nice break at Molly and Dave’s house over the weekend. Grandpa and Grandma Valadez also came from Kansas City for the visit.  We really enjoyed our stay! Jack went to the Pumpkin Patch and we took some pictures and enjoyed the nice Fall weather. We left for Detroit about 9:45 am today and made it 12 hours later…with 2 long eating stops. It was quite the adventure when we arrived in the dark. This is my 3rd trip to Detroit…and I know my way well. However, for our entire trip we have been using the GPS to get us where we are going.  So the GPS told me to go a different way than I normally go. Well, the ramp was closed to get us to downtown and we had to DETOUR! If you haven’t been to Detroit…you have to be careful on your detours. We ended up in the worst neighborhood I have been in yet. We were completely lost, a million red lights, and to top it off we had to make another detour further into the "neighborhood" because of a HUGE toxic fire of a hardware store right off our road. It was quite the scary drama…but we finally made it safe and sound to the Marriott.  Never again will I listen to the GPS over what I know best!