Back at Home!

Here is a long overdue update for everyone.  We finally made it home after being gone for almost 7 weeks!!!  We were discharged from the hospital on Thursday the 21st and we flew back home to California on Monday the 25th.  We were all very excited to get home and sleep in our own bed.

There has been a lot of issues trying to get everything in order so it hasn't been all relaxing and stress free.  We were supposed to have some home nursing and therapy set up before we even left the hospital and it was to be in place when we got home.  But things aren't really working as planned.  It's kind of like the twilight zone.  Going back and forth between so many different people, companies, insurance, getting different stories and spending hours a day on the phone (thats Marcela's job, I have no patience or understanding of the health insurance business, thank God for her).  We hope to get things sorted out this week.

Mila is doing pretty well.  She is eating better and actually has quite an appetite.  Her drinking is slowly improving, we just have to really regulate how much she takes in and tell her to take breaks to prevent choking.  We're trying different straws, cups and techniques to help her out.   Meal time is always an adventure with her.  Usually takes a very long time and is pretty messy.  A lot of it has to do with her cheek and teeth issues.      

The hardest part is keeping her entertained.  She watched so much tv in the hospital because thats all she could do.  Really didn't watch too much before that.  I've seen Wizard of Oz, Mary Poppins and Frozen literally hundreds of times over the past 2 months.  Whatever works though, if it helps calm her and keeps her attention.  Plus I've got some really good jams in my head throughout the day.  

Mila still needs lots of rest and time to heal and recover.  The surgeon said it could take a year or so.  She seems really bored and agitated at times.  I think she realizes that she can't do some of the things she used to.  Mila was able to walk along furniture and tables (with us behind her) before surgery and use both hands to play.  Now she can't put weight on her right leg and her right arm is mostly limp.  Who knows what kind of feeling or sensations she has in them at times.  Hopefully the physical therapy will start very soon and get her going again.  

Much love and thanks again to the #MightyMila tribe out there.  You've helped us get through this part of our journey and it continues on.

Checking the vitals on Pluto & Pooh Bear

Playing at the Ronald McDonald House

Napping on the flight home

Happy girl at home

Look who turned the corner!

Amazing what a little rest and pain management can do.  Mila was finally able to turn that corner in her recovery over the weekend. 

She started slowly eating on her own on Saturday and is making more progress at each feeding. We got our first smiles on Sunday since before surgery.  She got the stitches on her head taken out Tuesday morning and by Tuesday night she was sitting up on her own and being playful.  Such a good sight to see our little girl back. 

We are cleared from neurosurgery for discharge but have a lot of other things that need taken care of first.  Marcela and I need to learn how to put in the NG tube for feeding and medicines... Not looking forward to that. Hopefully only for a few days until Mila is getting enough nutrition and hydration on her own.  

We also have to figure out and have in place all of her therapy needs back in California.  We found out that through my insurance that we are able to get in-home therapy for Mila.  Such a blessing.  We can get her home to get proper rest and out of a hospital setting to do things on our schedule.  We hope to get the therapists she already has and loves to work with which will make things even easier. 

Things are finally looking up and we should be back home in the near future.

Thank you to all of the #MightyMila supporters out there. 

Wish everyday was like the weekend around here

Weekdays are like a zoo. Weekends are like a ghost town.  No constant interruptions and people coming into our room every 10 mins.  And guess what?  Mila is sleeping, taking a nap during the day, like a 2 year old should be able to do. Especially one who just had her skull cut open and part of her brain removed.   The pain meds we just gave her are helping her sleep because she was miserable before that. But at least she can rest now. We don't have to worry about her being woken up by someone who wants her to do a little dance or bring a food tray we've been trying to refuse to get for a week. 

Don't get me wrong, I still feel confident in most of the team of doctors we have and there have been some great nurses and doctors who have actually listened to our concerns. But a lot of them just don't "get it", whether they are desensitized to this thing, or it's just another day of work and following orders, or they're not exactly familiar with the extent of a hemispherectomy. 

The saddest part of all of this, and I'm pretty sure you can apply this to most hospitals because this is our third one and it's all been the same, is that I have yet to have anyone mention the importance of rest in this recovery.  I feel like when we mention it they look at us like we're crazy or just completely pretend they didn't hear it. 

Mila seems to be a rare case in that she is taking a long time to come around. But it happens, they've told us that it occasionally does. Some kids are up and moving in a couple of days.  Each case is different. 

Mila's in a bad cycle of not sleeping at night, due to pain or getting interrupted every hour or two and not being able to catch up on that sleep during the day.  Also when she's awake, Marcela and I are awake.  They want her to start moving around and be more alert during the day, to be more active in physical therapy and start progressing more being able to eat on her own.  There is no one in the world that would like that more than Marcela and I.  But I'm pretty sure most people when they don't get decent sleep or are in severe pain are probably cranky, miserable, exhausted and don't really perform their best. 

To me rest is more important than therapy.  Especially right now. I understand how much physical therapy is needed. I didn't come to the decision of removing part of my child's brain, partially paralyze one side of her body and cut part of her vision in both eyes just to have her lay around all day.

We're blessed that there is a surgery that could help our daughter and surgeons and doctors that are capable of doing it.  Thankful for modern medicines and procedures that cure and help health conditions when nothing else can. But one of the problems with the medical system we have is that too many are looking for the quick fix and routine process of potions and pills and not listening to our bodies. Which are always trying to tell us something.  Mila's is saying let me get some sleep damn it. 

Rant over, thank you for listening. 

Still waiting for Mila to start improving

 Things are still pretty rough around here so the days are long, busy and we are stretched thin. We aren't getting much sleep so keeping everyone updated is sometimes a challenge. We are ok and will get through this. 

Mila's test results came back with no infection. I think doctors don't really know what's going on they just said it must be all the inflammation. She is ok just very miserable, uncomfortable and over it all. She keeps getting slight fevers and throws up about every other day (we think it's due to all the meds) but still in the clear for hydrocephalus. However they are watching carefully. 

She still has the NG tube and hates it but needs it because she still isn't eating or drinking anything. She just can't figure it out. I feel like today she might be slightly better but it could be wishful thinking. I'm hoping she is and we will be able to see a difference in the morning. 

There is a lot going on but I need to go to sleep so will update later. Just wanted to let everyone know Mila is trying her best and is very slowly coming along. Let's just pray no more set backs and her body can start healing.

They expect us to be in the hospital until around wed and if she is better transfer us to inpatient therapy in another hospital for about a month. We aren't so sure about that plan but that's a long story for another day.

Thanks to those who check in, sends messages and gifts! It helps us keep strong!! Love all of Mila's tribe and feel Blessed you shower us with so much love.

Hope we get some answers today

Since my last post on Monday not much has changed. Mila is not making any progress.  If anything things are going downhill. Her pain is increasing and she's to the point where she doesn't want us to touch her or even hold her hand. I know along with the doctors she needs time to heal however it's obvious something isn't right.

Her surgeon talked with us yesterday (tues) and decided to do another CT scan. Even though it was clear just the other day, things like hydrocephalus don't always show on these scans and things can change pretty quick. He also decided to do a spinal tap. As much as I hate to put Mila through any more, I knew this was coming based on Mila's condition and actually thought it would take some convincing to get the doctors to press more and do these test but I didn't have to. All of Mila's doctors, nurses, team of surgeons and epilepsy team agree that this needs to be looked into and it's time that we get some answers. 

The Surgeon is doing the spinal tap to check for infections, mainly aseptic meningitis. She doesn't have all the symptoms of this but I'm relieved to get the test done even if just to rule some things out. The surgeon thinks Mila has some blood and fluid build up and hoping this will also relieve a little bit of pressure. 

Another doctor that's been keeping a close eye listened to my concerns and agreed that she needed better pain management. They've tried different pain meds and some work a tiny bit or for a short period of time but Mila moans in pain most of the day. It was getting pretty bad yesterday and luckily he came in during a time she couldn't take it anymore. He decided to start giving her small amounts of Valium to relax her muscles and settle her down a bit. I felt like that's exactly what she needed. She doesn't want her neck to be touched at all and doesn't want to move her head plus she's in agony and irritable. It has worked so far and we all finally got a little bit of sleep. Rick and I are trying to convince them to give us some everytime she gets some. ;) 

In addition to all of this poor Mila has been poked for blood work and ivs so many times we've lost count. The last time being at midnight last night. It's never fun but it's always that much worse when we have to do it in the middle of the night. The time before that it took 3 times (again) before they could get it. It's torture, my heart breaks everytime. Please pray we find answers soon because Rick and I know Mila can't take much more.

We will update you with results when we can. Once again thank you #teammightymila, I just can't say it enough!!! 

Waiting

So we got the CT scan results back and everything looked good. It showed no hydrocephalus.  Still at risk of developing it though.  They decided to hook Mila back up to an EEG to see if they could capture any of those episodes or seizures.  So far nothing yet.  She just seems really uncomfortable a lot of the time. 

Just sitting here waiting for her to turn that corner!!!  Come on Mila, you can do it!!!  Time to start getting better.  Mama misses you. 

On a side note, we got a nurse today that we had a few days ago! Thank God because Mila is finally resting peacefully again because of her. She helped us and Mila so much on Saturday and kept searching for answers and didn't stop until she figured out how to help. Unfortunately it's when her shift ended and directions weren't followed that things began to fall apart that night. (Not saying all the suspicious activity was the night nurses fault.) So just a few hours into her shift and my baby is feeling better. Special prayers for nurse Molly for going way above and beyond!!!

Sometimes This is How Our Nights Go

3am and up for the long haul. Marcela has just laid down. I made her. Been a rough night. Mila's having some activity we believe are seizures since around 9pm. She can't sleep. On a medicine cocktail. Rescue dose of Ativan for seizures at 1220am.  Still having activity over 2 hours later. Falls asleep for a minute then eyes open and blank stares. Drifting to the right. Just like her seizures before surgery. They want a level of her Phenobarbital medication. Three pokes and three veins later they finally get it. Having breathing issues. Sounds congested. Respiratory lady came in. Just add it to our tab. They say lungs are clear, probably mucous in back of throat. They suction her mouth & nose, almost until she gags. Its still there when they leave. Sounds like a mucous, phlegmy thing. Maybe its just saliva. I don't know. Falls asleep, small cough & wakes up.  She's exhausted, beat up & bloody. Laid out. Dried blood on head still from surgery.  Massive incision & stitches on head. Mad Max style. Make that questionable activity over 3 hours after seizure rescue med. This girl's a fighter but she's been in a lot of rounds. My legs are getting wobbly. I should probably sit down. Not long before I'm back up though comforting my girl. Poor kid just can't get rest. 445am episodes still haven't stopped. Heart rate goes up. Forgot to pay attention to that. Blood levels come back. Phenobarb low. Going to give some more. Breathing issues have subsided. One good thing. Extra dose of Phenobarb in at 515am. Coffee time for me. Episodes continue. 545am Mila finally sleeping, peacefully I think, hopefully. Marcela's awake now from the beeping and alarms.  605am another episode. Neuosurgery doctor comes in. We explain the situation. Needs to talk with epileptologists. I go to sleep for an hour? Now up from the morning routine. Morning meds given. Find out Mila had no pain meds for 11 hours. Should be given every 4. Definitely part of the problem. Someone dropped the ball.  Time to OCD over everything now. CT scan ordered. Mama bear is always in affect, now papa grizzly bear is out of hibernation.  Time for more coffee. 

Post Surgery Update #4

Too tired to do a long blog post right now. So just a quick update. Mila got out of picu yesterday but it was a very hard day on her and she moaned most of the day. She didn't sleep good Thurs night, couldn't sleep yesterday but they upped her pain meds and she finally got some rest this afternoon. She was a little playful a few days ago for a short period of time but the last 2 days she is just kind of out of it. Please keep lifting her up in prayer as there is also some questionable seizure activity going on and it's increased tonight. We will update with more detail when we get caught up on rest. 

Post Surgery Update #3

Mila opened her eyes up for the first time yesterday.  We were very happy to see them.  She also had some physical therapists come by. I thought it was a little too soon and that Mila wouldn't do anything for them, especially since she is on a lot of medication and pretty out of it.  Amazingly, she grabbed some toys and put them in our hands.  It was a great thing to see. They also sat her up and tried to move her head a little bit but Mila didn't really like it or respond well to it. 

A speech therapist came by to try to get her to sip through a straw and eat some pudding but couldn't really get her to.  She's not really opening her mouth much or swallowing.  So right now she's being fed through an NG tube. 

They also felt comfortable and were able to remove one of the tubes coming out of her head.  This one was under the skin draining blood from the surgery.  This is good considering how much blood she lost.  We knew she lost a lot but didn't realize it was about 3 times the amount of her body's volume.  They had to do 3 to 4 transfusions during surgery. Scary stuff. 

There is one more tube in her head they hope to remove tomorrow. This one is draining fluid from the brain.  When that is out we should be able to move out of the PICU and onto the epilepsy floor. 

Mila's still resting most of the day and on a lot of pain medication. She hasn't moved her eyes to the right or really moved her right arm or leg.  That is expected with the surgery though.  Something we hope to regain most of in the future with therapy. 

We also wanted to say that we have had some great nurses taking care of us.  The good ones truly make your days easier and we greatly appreciate them.  So happy nurses week to all the hardworking nurses out there. 

Post Surgery Update #2

It's 7pm and things are looking up! Mila's heart rate and breathing have improved greatly. Breathing is pretty stable, her heart rate is all over the place but doesn't get nearly as high as it was yesterday.
She hasn't opened her eyes yet but we know it will just take time.

The PICU told us their main concern for today was her blood loss. It slowed down a lot since around 4am this morning but as of this 11am she was still losing more then expected and they said they might have to give her more blood. However this afternoon it's better so they haven't done that yet. I feel so much better now that it's slowing down.

The surgeon came in not too long ago and we got to ask him the biggest question we've had... When we had our original consult with him he said he would be doing a modified anatomical hemispherectomy on Mila's left side of her brain and leaving in as much as he could, which included the frontal lobe section. However, right after surgery we were told he removed more than he planned incuding the frontal lobe.  So we were wondering what he saw that made him change?  I think this took us back for a second.  However, the surgeon let us know that Mila's frontal lobe looked pretty bad so it needed to be removed. This is important because the goal is seizure freedom so you want anything causing havoc to be removed.

Saving the best news for last... Mila was crying a very weak and soft little cry and in that cry she said Dada!!! (Dada was Mila's first word and mainly the only thing she normally says besides Hi.)  A few hours later she was crying the same way to let us know she was in need of more pain meds and the nurse looked up at me and said " Did she just say Mama" I replied with a big smile, Yes she did!!! Mila has said this in the past but she hasn't said it in a long time.  We hope this means her speech was already transferred to the right side of her brain (speech normally comes from the left) and maybe she will be able to start talking one day soon!!! Also it's a little something to let me know my girl will come around slowly but surely!!!

Yesterday was extremely hard on us and I just can't thank you all enough for all the support! I know I say thank you a lot but it's because I'm just so touched and appreciate it so much. Please keep the prayers coming. Also we thought the word was being spread around that she was stable but didn't realize until early this evening that we only told a few people and never posted it anywhere. Every time I tried to update this blog I would get interrupted or more importantly Mila needed me to hold her hand and comfort her. I started this out saying it's 7 well it's now actually 11:43 pm. Ya, that's the life in the hospital sometimes.

Post Surgery Update #1

Mila has been out of surgery since around 2:00 east coast time. She's had some issues. First of all they said she lost a lot of blood during surgery, over 800ml. They had to give a few blood transfusions but said she did good.  Shortly after when we got to finally see her she had a pretty long seizure.  We weren't sure at first because we thought she was just trying to come out of the anesthesia.  She went into status and I believe she was having a seizure for 30 mins to an hour. They had to give her large doses of her anti-seizure meds but when that didn't work they had to give her a rescue med. This calmed things down a bit but her breathing was worrisome and her heart rate shot up to 220 and kept going up.  They gave her some fluids through IV and were able to get her heart rate back down. This was extremely difficult to stand by and watch and once again not be able to help my daughter. After they calmed things down Mila finally seemed to be getting the rest she needs.

Mila has two drainage tubes coming out of her head.  She is losing a little more blood than they would like, so it's now midnight and they just had to give her more.  This is making me uneasy. She also isn't responding much and hasn't opened her eyes. The doctors from the neurology team keep checking on her and are trying to get her to open those beautiful eyes and to move her right side, but not much yet.  

Going to try to get some sleep.

The day is here

Mila is in surgery right now.  So far things are going well.  Just wanted to share this again to everyone. We really can't say thank you enough....

To all of our families, friends, strangers and those who have given anonymously and have donated, said a prayer or a positive thought, we want to give a sincere thank you.  You have all made this process a lot easier on us.  The outpouring of love and support is something we couldn't have ever imagined.