Going Home

I really can't believe I just wrote that. Yesterday was a week in this little room that has become our home away from home. We are ready to get out of here but there is something so reassuring about having so many people around all the time. The past 3 days have been rocky. Leeland had several cyanotic episodes that we just can't seem to get to the root of. They could be a result of reflux/aggravated airway/dis functional vocal cords/vaso vagal response. The Epileptologist does not believe it is seizures. We are in one of the video monitored rooms so she was able to go back and watch all his episodes. He has also been throwing up and having the big D for a few days, just can't keep anything down. They had to start another IV to prevent dehydration and test for C Diff. I won't go into the details but to say that Leeland is hard to stick/get an IV in is an understatement. Poor think looks like a pin cushion. He officially has a reputation with the nurses and it's not a good one.   In terms of his actual surgery, he is doing great. His head is still super swollen but that is to be expected. When we take him home we are going to be able to wash his hair and do with him as much as he allows us to do. We are definitely going to avoid the jumper for a while. We don't want anything jiggling around that's not supposed to jiggle around. We are just going to have to keep a close eye on him and monitor for any unusual activity. We will follow up with surgeon next week.   Thank you all so much for the continued support and prayers!

Recovery

This is such a roller coaster.  All of my days have run together so I really can't keep track of what happened when. Leeland had an allergic reaction to the morphine and antibiotic. They made him itch like crazy and before we figured out what was wrong he basically scratched his face off. The new antibiotic he's on caused some digestive issues if your know what I mean, so we've been dealing with tiny explosions. He is allergic to it too, so he's getting Benadryl every six hours that pretty much knocks him out.   Yesterday was a good day and he was awake for about an hour, wanting to interact and play with toys.  We are clinging to those moments. We've had a couple of scary moments with some abnormal jerking, oxygen drops and he started throwing up this morning, but then opened his eyes and started playing a minute ago. We really don't know what we're going to get from one moment to the next.  The  highs and lows of this whole journey are impossible to explain. We were feeling really discouraged this morning when Leeland began throwing up and had an oxygen drop/ choking episode.  His surgeon came by and removed the head dressings. He thought everything looked good but said that he did have quite a bit of fluid under the skin. He recommended a CT scan to make sure there wasn't any sort of blockage in the drain. Once he got results back, he personally came in to tell us that everything looked great and they would be removing the drain later today. Every time we talk to him, Kyle and I both feel so reassured. He is just so confident that the surgery was a success and he thinks all of these little setbacks are just stumbling blocks but in no way define Leeland's eventual outcome.  We are taking his word for it! Just as I was typing this, one of the dr.s came by to remove the drain. Kyle decided that was a good time for him to step out and get some coffee.  If you are grossed out, probably the best time to quit reading too. He pulled the drain out and I'll just say that thing is A LOT thicker than an epidural and it was about 2 inches onto his skull. There was already a stitch put in during the surgery that they could immediately close when the drain was removed but he was leaking too much fluid so they had to put in another stitch.  Between trhe throw up , yucky diapers and spinal fluid the poor little guy can't have much left in him. Not surprisingly though, he hardly cried. He really is the toughest  baby around. One of these days we're going to show him these pictures of  "that time you had brain surgery" and totally rocked it.

Update

After Leeland was sent to recovery yesterday the neurosurgeon came back to let us know that he was using both arms.  We weren't expecting to hear such good news so quickly. Like I said in my previous post, the dr.'s were hoping that Leeland's right hemisphere had already taken over most of the functions of the left, but there was no way to know for sure. I think they were as excited as we were. Once we got to the PICU it was a pretty eventful night. Lots of crying, pain, nurses and drs in and out, pain meds, blood pressure checks, blood draws, and pretty much no sleep for me and Kyle. Leeland really did as well as could be expected.  He is making little steps toward getting out of the PICU, so we should be on the main floor tonight. His Dr.'s have nothing but good things to say but really want us to focus on one day at a time. One of our struggles, even though it was expected, has been his swelling. Also, he can't wear his glasses because they push on his incision too much.   We can't put his contacts in because his eyes are swollen shut.   I can't imagine waking up in a hospital room in so much pain and not being able to see anything! He is so tough though and we are praising God for all of the small victories.  Thank you for praying with us!

Out of Surgery

Leeland is out of surgery and doing great.  Neurosurgeon said it was a success! Praise God! He will be in recovery for an hour and then be moved to the PICU. Please continue to pray as this will be a long road to recovery.

The Surgery

First I wanted to say that the outpouring of support has been overwhelming, but in a good way.  You know that article that circulated around Facebook a few months ago about the signs that your "secretly an introvert"? Well, that's pretty much me and this is forcing me way outside my comfort zone.  It was easy for me to sit behind my computer screen and sum up what our lives have been like for the past year, but I had no idea how many people would be willing to offer a kind word or helping hand, and it all came at once.  I called my sister, in tears, because so many people are calling and texting and emailing and asking what they can do to help, and I feel completely frozen.  It's forcing me to make plans and I don't do that well.  It's also forcing me to follow up and sadly I don't do that well either.  But I want to.  I want everyone to know how much the support means to us and I am going to do my best to respond to everyone.  Just know that even if I don't respond right away, I read what you wrote, I probably cried, and I know that you are there to help in anyway you can and it means more than I can put into words.

So, the surgery.  Side note: I have no medical training and really have tried to keep the internet researching to a minimum.  I am just going to tell y'all what we were told.  We went in last week after meeting with the Neurosurgeon for the pre op blood work.  They were getting samples of blood for blood bank typing and electrolyte levels.  On Monday night we will bathe him with antibacterial soap to cut down on bacteria.  We will go in on Tuesday morning at 5:30 am.  Once Leeland is taken back to the room, they will begin IV and anesthesia.  That part will take about an hour.  They won't shave his head but just trim and possibly shave an area from his hairline to behind his ear on the left side.  The incision will be like a giant question mark behind his ear.  I'll try not to be too detailed here, but once inside the brain, he will weave through the left hemisphere to the ventricle and then to the corpus callosum (the middle part of your brain that separates the two hemispheres). He will essentially work his way down from the forehead to the top of his neck, disconnecting the left from the right.  They will not remove the left hemisphere.  It's kind of like unplugging an appliance.  It's still sitting there, but it's not running.  The neurosurgeon told us his part would take around 5 to 6 hours.  A drain will be put into place and then he will be stitched up.  We were told that we would probably see him around 2:00 in the afternoon.  The neurosurgery team is amazing and will be constantly walking back and forth from the operating room keeping us informed and updated on the progress of the surgery.  There are risk factors, but the need for the surgery far outweighs those risks, so we are choosing to focus on the positive.  As sad as it is, Children's has become a home away from home and we know so many of the Doctors, nurses and support staff that I know we are going to be well taken care of.  Leeland will spend the first night in the PICU for extra monitoring and then will be moved to the 10th floor/epilepsy monitoring unit.  How long he will stay in the hospital depends on how he is doing and when they will be able to remove the drain.  We were told to expect to head home by the weekend. Isn't that crazy? I thought we'd be there for a month.  Once home, we will manage pain with Tylenol/motrin and then resume activities as Leeland is able.  I asked the Doctor if I he would be confined to home for a while for fear of infection or if we would be going to the grocery store, and he said we'd be going to the grocery store (I'll just have to avoid Senior discount Wednesday at Publix). 

I feel like I didn't do a good job in my last post of explaining what this all means for Leeland.  In the words of the Neurosurgeon.  His life and our lives are going to be remarkably different, in a good way.  A successful surgery to them, means a seizure free child and the doctor is extremely optimistic that this will be a success.  We don't know why Leeland's brain is the way it is.  Whether it was something genetic or something that "just happened" is something that we are still exploring, but that deserves a post on its own.  Leeland's left hemisphere is small and underdeveloped and causing spikes or seizures all day long.  We noticed very early on that he didn't move his right side nearly as much as his left.  If he reaches for a toy, he does it with his left hand.  If he kicks, he kicks with his left leg.  But some of the big motor movements, he uses both sides.  He started clapping a couple of weeks ago.  Major tears.  This hemiparesis that presented in Leeland so early is a blessing.  Hemiparesis of the right side is an outcome of this surgery, but Leeland's is already there.  Another major risk with a left hemispherectomy is loss of language/language processing.  Leeland makes some sounds now and blows raspberries, but no words yet.  Leeland is developmentally delayed, and as a parent it is heartbreaking to watch.  But when these doctors look at him and his charts and what his brain is doing, they are amazed at what he can do.  His epileptologist feels that based on his MRI, EEG, and PET scan, his left brain isn't doing anything now but causing a lot of harm.  All of the movement we're seeing on the right side and all of the language we're hearing is already coming from his right brain.  She feels that the right brain has already taken over and the sooner we can get the confusing left brain turned off, the sooner the right brain can really start taking over these functions.  Isn't that amazing.  We will continue Physical Therapy, Occupational Therapy, and Speech therapy.  Leeland will walk and talk. Period. 

Prayers for Leeland

Thank you for everyone that has followed us on this journey with Leeland.  I realize that I haven't been very consistent with sharing what we are going through, but for this next step we are about to take, I really want to just lay it all out there.  I am asking for our sweet Leeland to be covered in prayer. 
My sister told me at the beginning of this journey to start writing these little "God Moments" down and while I haven't recorded everything, it is impossible for me to even describe the way that I undoubtedly know that God is in control of this situation.  His plan for Leeland all along has been masterful and this testimony he has given me is not one I wanted, but one I am forever changed by. For the sake of not writing a novel, I'll try to just give the specifics on Leeland.
In November, when Leeland's "episodes" changed from blue spells to more typical seizure like activity, we finally got a little more attention from the Dr.'s.  Like I said before, we were finally able to catch the episodes on an EEG and it was determined that these were seizures. He was having at least four big seizure clusters a day.  In addition to those he has myoclonic jerks that look similar to a startle.  He also has head nodding episodes where he sort of "checks out" for a few seconds.  Essentially, he was having hundreds of seizures a day.  We've known since Leeland's CAT scan at three days old that he had cortical (brain) volume loss on his left hemisphere.  The MRI at three months old also confirmed the atrophy in the left hemisphere.
I'd have to dig through my calendar to find dates of stuff and I just don't have time for that, but in January, we went in for another 24 hour EEG.  The epileptologist, diagnosed Leeland with atypical infantile spasms (a type of seizure).  The EEG showed that all of the seizure activity was coming from the left hemisphere.  She told us that Leeland's left hemisphere was doing more harm than good.  She explained it great when she said that the left side is like a lightning bolt constantly going off.  It sometimes starts fires (seizures) and while that is concern enough, the right hemisphere is at risk of being consumed by the fire.  She told us that seizure medication has not proven effective on these types of seizures.  Steroids sometimes work to essentially "reboot" the brain, but she was very confident that even if steroids worked for Leeland, they would not be a permanent solution.  She told us that Leeland's best chance at a quality seizure free life was to get rid of the left hemisphere.  Huh? Her recommendation was a left Hemispherectomy. 
To say we were stunned is an understatement.  We left the hospital with a steroid prescription and an appointment for a PET scan and MRI.  We had a repeat MRI the day of "snowpocolypse" that again showed the smaller left hemisphere and the PET scan confirmed the epileptologists impression that the left hemisphere wasn't doing what it should be doing. 
Leeland started the steroids and it was a life changer.  He was like a different baby.  The seizures stopped.  It was the greatest couple of weeks in my life. Being able to put him in bed for a nap and know that he wasn't going to have a seizure when he woke up was so freeing.  I could take a shower and not be terrified that he was going to have a bad seizure while I was in there. It was amazing, but short lived.
In the meantime, we sought out a second opinion from Vanderbilt. We just got word this week that they are in agreement with Birmingham that Leeland needs a hemispherectomy. In addition, they felt like the neurosurgeon in Birmingham was the best man for the job.
A couple of weeks ago we had a follow up EEG to see the results of the steroid reboot and discuss next steps.  His EEG showed that he was having multiple seizures a day, but they weren't necessarily visible to us.  His case had been presented to the neurosurgery team and they were all in agreement that Leeland was a good candidate for hemispherectomy.  They scheduled a consult with the neurosurgeon on the 20th and the surgery for March 31.  Holy Cow!
Well, the past couple of weeks, Leeland has started having bad seizures again, I know that's not technical, but when I say bad, I mean he turns blue and I have to give him oxygen.  Kyle couldn't stand the waiting, so he reached out to our AMAZING pediatrician, who called the neurosurgeon and pleaded for him to see Leeland sooner. So, a couple of days ago we got a phone call from our pediatrician saying the Neurosurgeon could see us the next day, as in yesterday, and he could do the surgery on Tuesday, March 18.  Side note, I was in Toys R Us with all three kids, finding out that my baby was having brain surgery next week. Picture that. 
So, we met the neurosurgeon yesterday and will have surgery in Birmingham on Tuesday. 
I wanted to get this all out there before people start calling me saying that they heard from "someone" that Leeland was having a hemispherectomy and had no idea.  My life is so crazy and I know I have been a terrible communicator and friend and have essentially become a hermit, but I hope this sheds some light.  This is getting way too long, so I will do another post on what all the surgery entails.  Please pray for Leeland!