Meghan was discharged last Saturday and we are so happy to be back home!  Meghan was probably happier than we were to be home.  She was out like a rock shortly after we got home and took a 2 hour nap!

Everything is going well at home and we are keeping Meghan as comfortable as possible.  We are working hard at building her strength back up as much as she allows us to.  Right now she tolerates 10-15 minutes of playing/working with her and then she's ready to rest.  She did start to sit unassisted on Tuesday, so that is great to see again!  She still isn't able to crawl or walk.  She knows she can do these things, but her body isn't allowing her to do these quite yet so she gets very frustrated.  She is allowing me to help her walk - we just need to get her legs to cooperate.  It is hard as a parent to see her struggle to do things she was able to do 9 days ago.  I know she'll be able to do these again - I just need to be patient :)  She is getting stronger each day!! When she was discharged, we were sent home with 8 different meds to give her.  However, some of these are only given to her as needed.  She is down to 5 meds that she gets daily.  She should be down to only 1 med by the end of the weekend.

Meghan likes to have Molly by her a lot.  Molly has been good therapy for Meghan!  Luke comes home for a couple hours after school and Meghan lights up when she sees him.  Luke was pretty worried about his sister and it was good for Luke to see his sister and to see that she is doing well!  He doesn't like to see her in pain, or to see her incision, but he always has to check on her as soon as he gets home to see how she's doing.  Meghan is very happy to have a break from doctors but Luke isn't so happy.  He got strept throat while Meghan was in the hospital.  I think this is the 4th time in less than a year so he has been referred to see an ENT tomorrow to see if he needs his tonsils removed.

Jeff and I met with Meghan's therapists this morning regarding her IFSP (Individualized Family Service Plan).  We reviewed Meghan's goals from this past year and wrote new goals to add to her plan for this year.  We are all very pleased with Meghan's progress!  Speech therapy has been added to her plan and she will start that next Wednesday.  We are so lucky to have such amazing therapists working with Meghan!!! 



On my way home!  I was given a couple pain meds before I left the hospital so I could handle the bumpy ride home.

Molly keeping an eye on me



I love Molly!



Look what I can do!!!

Saturday

Dr. Petronio (Meghan's NS) came by to visit last night.  He suggested that Meghan would probably benefit more by being home while building strength versus in the hospital where she isn't happy with all of the unfamiliar people working with her.  Jeff and I agreed - we just need the pediatric doctor to agree with this and if they do, it sounds like we'll be able to go home today!  We also discussed the referral to the Endocrinologist.  Dr. Petronio is confident that Meghan's growth issues will resolve now that she's had the decompression surgery.  He wants to wait 3-6 months and evaluate her growth at that time.  If she's growing, we will cancel the referral but if she still isn't growing we will go ahead with the Endo referral.  When Meghan was weighed at pre-op on Monday she weighed 18.5 pounds and was 28.5 inches long.  You can do it, sweet girl!!

SMO's/X-rays of hips, legs and feet
Because little Meggers hasn't been strong enough to walk since surgery, she hasn't been able to be evaluated by the therapists for possibly needing short-term SMO's, or to see if they agree with Meghan's therapists in New Ulm about needing x-rays to look at bone structure of lower extremities.  So, this is on hold until Meghan is strong enough to walk so she can be evaluated by the therapists.  I was hoping we'd have answers regarding these issues before we were discharged, but I am once again reminded that this all takes time and patience.  We'll get answers as soon as Meghan is ready.

The next step will be to resume therapy in New Ulm once a week.   In 1-2 weeks, we'll see Meghan's primary doctor for an incision check.  Then, in 3 months we'll be back here for a full brain MRI and limited spine MRI.  She will need to be sedated but this MRI should only take a half hour to get the needed images.  They will check her ventricles (this is for her hydrocephalus), look at the back of her brain to make sure the surgery worked and to make sure there is adequate CSF flow and they'll look at her syrinxes on her spine to see if they decreased in size since surgery.

Right now, we are just waiting for the pediatric and neuro doctors to round to see if we are able to take our little girl home today.  We can't wait to get her home and back in a familiar environment.  Thanks again to our friends and family for the support, thoughts and prayers!

Friday

It sounds like we'll be able to break out of here this weekend, but that depends on Meghan's strength!  She is quite weak and we're working hard at getting her strength back.  She doesn't let the therapists do anything with her so they are giving Jeff and I lots of good ideas on how we can work with her to get her strength back.  They also want to see Meghan to be able to sit up unassisted, which she isn't quite strong enough to do alone yet.  She doesn't need to maintain her balance completely while sitting, but she needs to be able to sit by herself for a short amount of time.  We seem to have a pretty good handle on her pain now.  The nurse removed her IV this morning and she's getting all meds orally now!  She is a happy girl to have the IV out of her foot!  She is still not the happiest when we move her around, but she is atleast asking to be picked up, instead of just wanting to lay in bed.   She will be getting her first bath this afternoon - yay!  This will be the first bath since before surgery.  Maybe that will give her some spunk!  The lack of sleep seems to have finally caught up to her.  She slept all night last night and she's been sleeping off and on throughout the day today.  The rest is good for healing!




Playing with my toys



Mmmm...mac n cheese!

Relaxing with my favorite things from home

Thursday

The biggest news....we FINALLY got to hold Meghan Wednesday night!!!  I can't even explain how much that helped me.  Just being able to hold her and comfort her was the best feeling so far this week!  She was out cold while cuddling with mom :)  Meghans head bandage was removed Wednesday morning and we got our first look at her incision Wednesday evening after we held her.  We were moved out of PICU to the regular floor Wednesday afternoon as well.  Meghan did not like all the moving around during the move.  The rooms in PICU were spacious and sound proof so we didn't hear much noise from other patients or nurses.  That is not the case in the new room.  It's taking Meghan (and mom and dad) a while to adjust to the noise.  Right now, the biggest issue is pain management.  Once we were moved out of PICU they started weaning Meghan from the pain meds.  We are still working on pain management trying to figure out what works best for Meghan.  She does not appear to be in pain when she lays in bed but once we move her neck or adjust her position she is not a happy girl!  The physical and occupational therapists were here first thing this morning to work with Meghan.  She will move her face and neck to the right, but not to the left very willingly so we are doing a few things to loosen up those muscles so it's easier for her to look to the left.  We will be getting Meghan up in bed more often today to keep muscles loose as well.  She is eating solids now and has held everything down so that is awesome!  Meghan is a very tired little girl and she looks forward to being able to sleep in peace at home with out interruptions.


I am missing Molly, so I love cuddling with my stuffed puppy.

YAY I can finally sit up in bed! 

 

Wednesday - mid-day

Meghan had a great night last night!  She fell asleep around 9pm and woke up a couple times throughout the night while the nurses gave her meds.  She woke up around 4am and was up until around 11am.  Dr. Petronio (her NS) came to see her last night around 7pm.  He said she looks great!  Dr. Petronio's nurse practitioner checked on her this morning and removed her head bandage.  There is no leakage from the incision sight so that's great news!  We haven't seen her incision yet as she is still on bed rest and can not sit up until atleast 5pm tonight.  We are currently still in PICU.  She is no longer on a liquid diet, but because she is laying at a 45 degree angle, we are feeding her soft foods so she can easily swallow the food.  She had about a cup of apple sauce so far.  Her appetite isn't quite there yet.  She has had good neuro checks but does not let the nurses shine the light in her eyes (I don't blame her!)  The plan is to start weaning her very slowly from the steroid med later today.  This will take about 2 weeks to completely wean her from the steroid.  She is on the steroid to help with swelling and headaches.  There hasn't been any talk of starting to wean her from any of the other meds as of yet, which is okay.  There isn't much else going on but I will update when we know more.


My sweet little Meggers



My head bandage was removed today!

We made it through the first night!  She did really well until around 10pm.  Then we just had a couple minor issues.  She occasionally needed oxygen from 10pm until 7:30 this morning.  She also wasn't handling the pain med the best so they switched her pain meds around 2am.  She is much calmer on the new pain med.  She has been resting well so far this morning.  We had our consult with the physical therapist this morning regarding braces and x-rays of hips, legs and feet to look at bone structure.  Will update when I know more on those.  Going into post op, we were told she could vomit often the first 1-3 days.  So far, she has not vomited, so that is great!  However, she hasn't had any solid food yet so we will see how she does when she's allowed solids.  She is on a liquid diet at this point.  We are not able to hold her until Wednesday evening.  She just wants to be held and that is probably the hardest part as she doesn't understand why she can't be held.  She is on bed rest until around 5pm on Wednesday and they need to recline her bed at a 45 degree angle.

Meghan is resting as comfortably as possible in PICU right now.  Sounds like she will be in PICU for 48 hours (she'll be moved to regular room after PICU), but that depends on Meghan.  It's too early to tell right now as she's still pretty drugged up from anesthesia.  Tomorrow will most likely be a little different story.  But, for now, she's been sleeping okay.  She is on pain meds for the pain and steroids for swelling and headaches.  The hardest part is when she wakes up she holds out her arms to be picked up and we were told she cant be held for 48 hours.  She needs to stay at a 45 degree angle in bed for 48 hours.  The biggest concern is vomiting the first 1-3 days.  So far, she hasn't vomited (knock on wood).  Meghan did require a little oxygen tonight for a short period of time.  She had a little rough patch around 10pm but is sleeping now.  Jeff and I are taking 2 hour shifts for the next few nights so someone is always up with her.  Will update more tomorrow.

We can finally breathe a sigh of relief that Meghan stayed healthy enough for surgery.  We arrived around 7am, had blood taken around 7:30 and went to preop at 8am.  We then waited for what seemed like eternity for Dr. Petronio to arrive.  Meghan was a trooper while we waited and thank goodness Grandma Linda brough her deck of cards...that was a life saver!  Dr. Petronio arrived a little before noon and they took her for surgery around noon.  They will remove a portion of her skull, open the dura and remove a portion of the C1 vertebrae.  At this point, surgery has not officially started.  I will update as we know more.  PLEASE keep her in your prayers!!!



Pre-op playing with the nurses blood pressure cuff



Meghan's puppy has a nametag just like Meghan :)

We have had a very hard worker on our hands these last few weeks!  Meghan has been able to cross off several items on her to-do list (therapy goals)!  She's accomplished feeding herself with silverware (and doesn't always need to use her special utensils), she can stack 2 large objects on top of each other, climb onto her toddler bed, hold a book with both hands and turn pages with her thumb, says hi baba (baby) and hi papa (puppy) AAAAANNND...when I have to leave the house she holds out her arms for a hug instead of crying (woohoo!!!!)!  This all makes for very proud parents!  She has also developed a HUGE love for Molly and puppies.  Molly is the first thing she wants every time she wakes up. 

Meghan has been in therapy for almost a year.  The plan is to meet with the therapists and an official from the school district the week after surgery while we're at home recovering with Meghan.  We'll review Meghan's goals from the past 12 months and write new goals for the next 12 months.  There has been talk of adding speech therapy to her plan.  IF that gets added, she will not start that until the fall.  BUT, there is a possibility that her speech will improve after surgery so I am not too concerned about speech at this point.

Meghan has a hydro friend that is need of prayers!  This little girl is almost 2 years old and has hydrocephalus like Meghan.  She had a couple big seizures on Sunday evening and was flown to a hospital that can handle her needs.  Her seizures stopped, but she spiked high fevers several times and the family still doesn't have answers.  They checked her shunt and everything looked good with no infections present.  She is doing better, but still needs prayers.

"Think positive."  I will admit - for the last 10 months, every time someone told me to think positive, I wanted to scream (okay, I actually wanted to slap them)!  From the day Meghan was born, I watched her go through more than anyone should ever have to go through in their lifetime.  I've been upset at God for chosing her to go through so much.  I've been upset at the world for people not understanding her conditions.  I've had a negative attitude, not because I felt burdened by the extra attention Meghan needs, but because I just couldn't understand why her.  However, my attitude suddenly changed last week.  I was watching the nightly news and they were reporting about a little boy that was taken hostage by a man after he shot the little boy's bus driver.  They reported on the news that this hostage situation was going on day 4.  As I was watching the story, Meghan was sitting right next to me giggling and playing with her toys.  I couldn't help but get teary eyed.  It hit me that my little girl, while she goes through daily struggles and has health conditions that she will have the rest of her life, is physically here with us.  I can see her smile.  Hear her laugh.  Watch her sleep.  Dry her tears.  That poor little boy's family is worried sick about their precious little child who isn't with them.  They haven't been able to hold him, tell him they love him, watch him play, hear him laugh - in many days.  My heart aches for the little boy.  He doesn't have his mommy to wipe his tears, or to hold him and tell him everthing will be okay.  This story put everything into perspective for me.  Meghan's issues suddenly became SO tiny compared to all of the families out there that do not have their child to hold and comfort each day.  Or for the families that know their child has a terminal illness.  We make our own happiness.  If we constantly have negative attitudes, we will live a negative life.  I don't want to live the rest of my life with a negative attitude.  So, my head is held a little higher now and I've stopped wondering why and stopped getting consumed in all of the negative articles about Meghan's conditions.  I starting moving forward and am ready for anything life throws our way.  We are strong and will get through everything.  There might be hills and valleys, but we'll stay positive through it all and enjoy every single second with all of our amazing children and will count our blessings each and every night.