EEG

Last week we had an appointment with a Neurologist regarding Morgan's "spells" of lethargy/vomiting...we spoke about several possibilities and if she is having absent seizures which apparently are very uncommon in babies and young toddlers (more common in older toddler/children).  Potentially looking for Complex Partial Seizures which may cause these episodes and suggested next step was to have an EEG.

Yesterday morning I grabbed Morgan out of bed bright and early and brought her up to the clinic for an EEG (still in her PJs).  The worst part was the prep and listening to her scream & pinning her hands down while they put the "goo" on in 25 different spots on her head and attached the electrodes.  She did like the gauze "hat" over all of it though and did pretty well sitting on my lap reading books and watching Elmo while they recorded her brain activity for about 45 mins.   Always hard to be the one holding her down while doctors/nurses do uncomfortable things- feels like parents are supposed to be the ones comforting and protecting not aiding the scary people :(. And then trying to wash the "goo" out of her hair, well that was fun...

I just heard back from the neurologist on the results of the EEG though and I think good news.  They saw a little bit of irregular pattern in the back of her brain but it is very borderline and they do not think something that would explain these episodes.  Nothing they are concerned about for now or that would require any further treatment or medication.  So for now we continue to monitor and hopefully we don't see the spells again!

MRI results

Realizing I forgot to post her MRI results but good news is that her ventricle size (both laterals and 4th ventricle) are down and looking much better.  So at least we know the episodes are not related to shunt malfunction at this point! 

Slightly irritated the nurse called late in the evening and the next morning after she came home because they have to reset her shunts after each MRI and she accidently set them backward- ugh.  Front is supposed to be at 80 and back 60 but she did the opposite- apparently they don't think the setting change is that significant so we will leave as is for now and monitor but might have to bring her back up to have them reset at some point again.

Follow up

Had a chance to speak with Morgan's neurosurgery office today and were discussing the "intermittent Shunt Blockage" theory which he said is unlikely for her to be experiencing.  Apparently this is pretty uncommon but when it has happened usually the patient is slower to recover since the CSF build up and release via the shunt isn't a "burst" of fluid but more slow and gradual.  Morgan seems to snap out of it much quicker and feel better suddenly.  He does think the vomiting/lethargy episodes are very likely related to the shunt or other neurological issues though and we are going to do further follow up. 

I also asked him about slit ventricle syndrome (yes, I have been googling) since her symptoms seem very close to the description- intermittent intense headaches, varying degrees of lethargy, with or without nausea, and vomiting that last anywhere from 10 to 90 minutes.  Based on her last scans he doesn't think either because her ventricles are still quite large.

So...next week another MRI to take a look and setting up an appointment to see a neurologist with her neurosurgeon also to check out if she is having any seizures that may cause. 

Intermittent Blockage??

Its after 10pm and we just got the kids to bed and eating dinner...spent another evening in Children's ER but at least we came home!  We ventured out with the kids to a restaurant for dinner with family and Morgan fell a sleep in the car on the way there - not unusual since apparently she had a short nap today.  I thought she was just being slow to wake up after we arrived but shortly after we were settled at the table and ordered Morgan food she started vomiting :(

Of course we debated again is she just sick or do we need to go to head to the ER... a few minutes later more came up so that solidified our decision.  She was whimpering for a bit, glossy eyed and very sleepy and then fell a sleep again on the way up to the hospital.  Were checked in and shortly after she got a room in the ER she perked up, wanted to walk and play - like a new person!  The Doctor saw her and we agreed she didn't need scans, IV, etc. since now she is acting fine and he advised to take her home and monitor her every few hours through the evening.  No fever and she doesn't seem to be sick but we were told it is possible she might be having intermittent blockages of the shunt line.  So maybe she is constipated or stomach full and this causes the shunt line in her abdominal cavity to block temporarily and the vomiting would relieve? Interesting and might explain the two recent episodes of this.  Relieved and hopeful she escaped again without intervention.  Can't wait until she is old enough to tell us what she is feeling! 

on alert

Morgan is over 25 months old (actual) and still not walking but getting quite brave with her abilities...I am sure that most parents probably worry at this stage as their now "toddler" bumps their head on everything but I think we are overly paranoid due to the hydrocephalus.  I always try very hard not to overact to her falls and bumps but tonight I think was maybe a reminder again of how she is extra sensitive. 

On to why I am writing in the blog today...Morgan was playing as usual tonight and clearly I was not quick enough to react but she was cruising between the couch and the rock n play (Max's chair) and fell forward to the ground.  She barely bumped her forehead but it was a tragic fall as usual and in normal fashion I tried to explain to her that she was OK as she lay on the ground crying.  Then I noticed she was really not fine.  Her eyes rolled down, her scream turned to a painful whimper and suddenly her body limp and heavy on my shoulder as I picked her up.  Immediate panic as I assess the situation and wait a long ten minutes for Pat who is on his way home.  She was whimpering/whining, could barely keep her eyes open and gagging as if she was about to vomit (she never did but we sat by the sink for a few minutes).  We watched her and her reaction for about 20 minutes and debated what to do but then just as fast as her fall happened she seemed to recover and resumed right back to her usual self (walking behind her walker and signing something we can't understand).  Whew...another crisis averted- maybe time to buy her a helmet?  

I am curious if other hydrocephalus patients experience situations like this where their demeanor and actions swing drastically?  We are wondering maybe does she get extreme/debilitating headaches (caused by even a minor fall/bump) that might cause this sort of reaction. 

HOME :)

It always takes them a while to get their rounds in and a doctor into the room in the morning to discharge her, the paperwork, etc. but Morgan is looking & feeling good so we were able to take her home late this morning.  We are exhausted and wishing entering our house would be a bit more welcoming & inviting but can’t say it is when you walk in and survey the mess of dishes, laundry, vomit filled car seat, smelly trash can, etc. that you ran out on a couple of days before.  Thinking of another brilliant charity idea when I am a retired, empty nester and bored- offering an emergency housekeeping service!  Also feeling like I have neglected my other child knowing I probably didn’t pump as much as I should have the last few days (he loves to eat) and missing him since I haven’t seen him in a couple of days.  Unfortunately all of this had to wait so that we could get Morgan bathed and over to Grandma’s to focus on work and save the remaining vacation time we have this year just in case it happens again.

Setting this all aside because the most important thing is being thankful that my daughter is healthy and home and didn’t require another brain surgery!  I am not even sure if anybody reads this blog but if you are reading it we thank you once again for your support and prayers.

monitoring

We woke up early to meet with neurosurgery when they were on their rounds.  They reviewed the scans and spoke to us about what their concerns are and put in orders to have stomach ultrasound done to look closer at the suspicious area for cyst/fluid buildup.  Apparently an infection can cause cyst to form near the tubing and cause fluid build up, another uncommon issue with shunts.  Typical symptoms would include bulging of the belly and constipation- neither of which Morgan had.  Even though Morgan usually likes to show her “button” she was not that excited about a stranger rubbing the jelly over her stomach and was a bit traumatic to get through.  Great news we found out shortly after is that there is no fluid buildup and they do not believe any issues with the shunt line.  Bad news is that they do want her to stay overnight again just to monitor.  They are not convinced her vomiting is just a “bug” at this point because she had no fever or other symptoms and very similar to her previous shunt revision behavior.  

 

They let her start eating again so we started with some dry cereal and water which she did fine with and then ordered her breakfast- she held everything down.  The rest of the day Pat and I took shifts going to get work done and keeping Morgan occupied & playing. They finally got us a room on the 6^th floor (out of ER) that afternoon and Morgan was pretty happy playing with toys in the crib, eating well and holding down her food. Overall it was not a bad day for being at the hospital.

Another scare

I picked up Morgan from Grandma’s as usual today and she was acting fine- even stood up on her own for a few seconds.  As we were in the car headed home I heard her whine like she was in pain and noticed she threw up a little bit on her shirt.  We got home and suddenly she was VERY tired, eyes glossy and threw up some more.  Of course its 5:30pm and doctor’s office is closed so I can’t call but called pat to hurry home, my mom to pick up Max and rushed around to throw stuff into a bag for Morgan knowing whenever we head to Children’s Hospital we end up sleeping there.  As we were driving up to Children’s Morgan started vomiting more and was crying like she was in pain and I knew we did the right thing.  The extra 5 miles further away we live from the hospital now suddenly feels like a bad idea! 

Children’s ER was extremely busy (found out later the busiest they have ever been) so we had to wait for a nurse to see her and then wait for a room to open up (I think this was rushed by the fact that she was vomiting all over the front entrance and close to unconsciousness). It was slow moving but we got her in and checked out, down for CT Scans and X rays and hooked her up to IV for fluids.  The ER doctor came back in and said the radiologist and neurosurgeon on call looked at her scans and her ventricles look fine – thank god! They were, however, concerned about a spot in her abdomen that could potentially be a cyst at the end of her shunt tubing so wanted to keep her overnight for monitoring and have her neurosurgeon review in the morning.  They admitted Morgan but didn’t have rooms available in the PICU or elsewhere so we spent the evening in the ER- wasn’t until 2am that they were able to get a crib in her room so most of the evening I held Morgan and slept on the cot – needless to say it was a restless evening.  We also learned our lesson not to give Morgan her blanky when she is throwing up because it was covered of course and then we couldn’t give it back to her. Poor thing missing the one thing that gives her comfort when she is being poked and prodded and sleeping in a strange place so Dad had to go pick up the backup blanky and bring it back up to her.

Morgan is 2!

Today is Morgan's 2nd Birthday! 

I think this day will always be bittersweet for me.  It brings a lump in my throat to recall the events of the day that happened 2 years ago (my water breaking, ambulance ride, scrambling around to rush me down for c section and seeing our tiny, bruised baby girl for the first time and wondering if she will survive) and I can't help but think of things I could have done differently to keep her in longer.  Maybe these painful memories and thoughts will fade with time I am not sure.  I also always think about how all of the nurses and doctors we met that day always started by saying "congratulations" - maybe they are trained to do this but it felt all wrong because quite frankly the day we had Morgan wasn't the happy delivery day that parents anticipate (she wasn't supposed to be here yet). 

On the other hand, I looked at Morgan this morning and can't believe how far our miracle baby has come.  Its crazy that in just 2 years she has had 6 surgeries and spent a hundred and twenty something days in the hospital.  She has defied all odds and is doing better than anyone ever anticipated.

I wanted to give an update on where she is developmentally at 2 because I always had difficulty finding stories and examples of how other 24 weekers, babies with grade III/IV brain bleed, or with hydrocephalus are really doing.  We are told by therapists that they stop "adjusting" her age at 2.  I am not sure where they came up with this magic number but Morgan is not "2", she has 3 1/2 more months to be there :).   Generally speaking, Morgan seems probably like a normal 1 1/2 year old (only she can't walk and prefers the butt scooting method over crawling!). I think up until her Dec 2013 surgery she was developing nearly on track or slightly behind with her adjusted age (grabbing objects, rolling over, sitting up) but has always hated tummy time and refused to crawl.  Surgeries and hospitalization (and probably frequent headaches, soreness from shunt lines & surgery, etc.) I think have held her back more than her inability to learn how to do things.  She pulls herself to standing position and walks around furniture, loves to play in her splash table and swimming pool, is smart, quite vocal and is usually singing in the car, and speaks too many words to count. 

We had a NICU follow up appointment  a few weeks ago and got her results yesterday- her language levels are right on track with 21 month level, cognitive and fine motor she is a few months behind her adjusted age and gross motor is where her major delay is (8 month level).  I will say that I think Morgan doesn't do as much in front of the therapists/doctors evaluating her as she does at home but I am guessing this is probably common.  Per the evaluation, she is "well serviced" and receiving private occupational and physical therapy once a week in addition to therapy provided by the school district (physical & occupational and occasional speech therapy).  The doctor said we must be very pleased with her progress and is amazed on how she is doing given her gestational age and medical history.  "Morgan is making progress, and it is my opinion and expectation that she will make some nice gains if she is able to avoid the need for further surgical intervention on her shunts".  She is quite small for her age (< 3% for height and 8% for weight) but this is common for micro-preemies and overall pretty healthy.  They did ask us to monitor her right eye (questionable, intermittent esotropia) and pronation of her feet (inward rolling) and will evaluate in upcoming weeks if corrective measures need to be taken. 

I feel like parents always say things like "doesn't the time fly", "where did 2 years go" and the famous "the days are long but years are short" but for us I think that last 2 years has felt like an eternity and like Morgan was a baby forever!  She has been through a lot in 2 years and many changes recently (new brother, new house, new school) but handling them all with grace! 

MRI results

Off to Children's Hospital again - arrived by 7:30 am.  Always fun to try to hold food and liquids from your child that isn't old enough to understand why she can't eat/drink for 8 hours prior to MRI.  I have learned to schedule these as early as possible but we had to wait about 45 min and all I heard was requests for "milk", "milk please", "eat" in her adorable little voice and breaks my heart to say no, you can't have it right now.  Instead of fully sedating her they gave her some drug via nasal spray that relaxes so she will stay still during the scan and it seemed to work wonders- she was singing during the entire MRI after it kicked in :)

As a mother I am not sure you will ever get used to watching your small child strapped tightly into this huge machine and see the panic in her eyes as the claustrophobia sets in.  I just try to comfort her by standing close by and every time can't help but think why her and what did she do to deserve this?

The nasal drug they gave her must not last very long because by the time we left Radiology and got to short stay unit for them to re-program the shunts she was done with the singing and did not want to sit still! Took several efforts of us pinning her down and holding her head before they could get both programmed. 

Speaking with the Neurosurgery nurse, he did not feel the ventricle size had gone down as much as they would like to see at this point but also not larger and saw nothing alarming showing on the MRI.  He will review with the surgeon and revert back with more information and also let us know the frequency of which she will be required to come in for follow ups.
Her fontanel is still sunken so he was not comfortable adjusting the setting on the shunt for the lateral ventricles but did increase the flow of the shunt going to the 4th ventricle. Apparently the 4th ventricle can shrink more but they are careful about the lateral ventricles shrinking too fast which can cause damage (pulls away from the brain).  I guess I am not sure what they would even do if her ventricle size had gone up- only that it might indicate the shunts aren't working but would assume they would wait until she is symptomatic anyway to replace...

Feeling relieved we got through the day and hopefully won't be back for a long time!

Follow up scans tomorrow

Morgan has a follow up MRI tomorrow (6 months post surgery).  I am not sure why but I always feel anxious before her follow up scans.  I am not sure how she will do being sedated and it is never fun watching her cry through nurses prodding at her, etc.- each time seems to be a bit different so I am not sure what to expect.  Also after an MRI (which is magnetic) she needs to have her shunts re-programmed which was a difficult task last time because she won't sit still. 

We have never once felt very comfortable after her follow up imaging because she has never had dramatic or even noticeable shrinkage of her ventricles like the neurosurgery team would like to see.  Praying for a good day     

Suture removal and MRI

Brought Morgan in for MRI and suture removal today.  Grandma came with us so that she could be with Morgan during the MRI since I cannot (21 weeks pregnant). Apparently the MRI machine is quite loud and Morgan cried the whole time which is sad to hear- she was not sedated.  There was some confusion on where Neurosurgery would meet us and we ended up going to the short stay unit at Childrens so they could remove her sutures and reprogram her shunts (this has to be done after each MRI since magnetic). 

Was quite a nightmare- us pinning Morgan down to try to get the stitches out of the back of her head and then he had to put a couple more in since it was not fully healed :(
Also not easy for him to reprogram her shunts since she would not sit still and was crying and moving her head. Long morning and took much longer than we expected- glad it is over!

We were planning a family vacation to Florida to leave this weekend and have been debating for a couple of weeks if we should still go.  Since the tickets were already purchased I waited until today to see how her MRI looked, etc. before deciding if we should go.  They are OK with her traveling and everything looks fine but I think just scarier this time since it is right after 2 back to back issues.  Once again, researched neurosurgeons in the Miami, FL area and had a plan if something should happen and asked them to put this MRI on a disc so we can take with us.

back home

Morgan was discharged yesterday and we are back home again.  She is doing well and recovered quickly again with this surgery.  She is still very sensitive to loud sounds (coffee grinder, blender, etc.) and her balance not back to normal but she seems happier.  Back to sponge baths for a couple of weeks until her sutures come out. 

Shunt #2

Well it was a VERY long day keeping Morgan occupied without food or drinking for most of the day to prepare for her late afternoon surgery which was delayed until this evening.  We have been through several books, iphone/ipad games and walking up and down the hallway of the PICU unit with her sitting in the wagon the past couple of days (the temporary drain on wheels follows and Morgan smiles and waves to nurses like she is a princess in a parade :))! 

Finally went down for surgery about 6pm and took a couple of hours.  Surgery went well - they removed the temporary drain from the front left side of her head and placed the second programmable VP shunt on the back of her head on the left side to the lateral ventricles.  This drainage tube runs down her left side and she now has another incision just below her navel on the left side also.  Needless to say she has a pretty edgy hairdo right now...

Hoping for a quick recovery and this time will closely monitor her IV line to make sure it is not causing her pain! 

temporary drain

Morgan is doing great following last nights surgery.  The temporary drain they placed on the other side of her head is not a pleasant site to see (shaved her front left side of her head to place the drain and has only clear bandage over) and very difficult to manage with a toddler since it has to remain at the same level as her head at all times.  Every time she moves or wants to sit up, lay down, be held, etc. they have to adjust and re-level the drain bag.  Her scans better now and there is no infection in her current shunt line from testing the CSF so that is good. 

They determined that her shunt is functioning fine to drain the 4th ventricle but not the lateral ventricles now.  The only resolution at this point is to place a second shunt to her lateral ventricles again.  So separate from 4th ventricle shunt.  This is not the news we hoped to hear but we really have no other options they have given us.  They will monitor and schedule the surgery for Monday evening.   I wish they could do sooner since it will be very difficult to keep Morgan mostly in the same position in her hospital crib with the temporary drain. 

Not again...

Today was one of scariest days of our lives (second only to Morgan's birth day).  Started out as usual then a little after noon I received a phone call from our back up babysitter that Morgan woke up from her nap and was vomiting.  Heart drops - oh no...

I drop everything I am doing, cancel a couple of afternoon meetings I had scheduled, and head to pick her up.  I am hoping and praying that she just caught a stomach bug (which Pat had earlier this week so quite possible) but call the neurosurgeon and leave a message on the way just in case.  She was fine this morning.  When I see her she is looking very tired and like a very sick baby.  Spoke to neurosurgery a little while later and they advised us just to monitor her, likely it is just the stomach flu.  Pat came home to watch her while I ran to my doctor appointment (I am 18 weeks pregnant today) and picked up some food from the grocery store to make her some homemade chicken noodle soup for dinner. 

As I am making dinner and watching her sleep in Pat's arms a couple of hours later and we realize she is becoming more limp and suddenly she is unresponsive.  We can barely wake her and her eyes are rolled into the back of her head.  Pat and I begin to panic and head toward the car but debating whether we should call an ambulance instead.  She is breathing so we decide us driving will be faster and I sat in the back seat next to her on the way up to Children's making sure she continues to breathe.  Longest 30 min drive of my life! By the time we got to Children's emergency room she is completely limp and will not wake- I run her in as fast as possible holding her lifeless body.  The person at admission desk took one look at me & her and pressed a button on the wall- we are immediately surrounded by the trauma team.  I watched as about 6-8 nurses and doctors get her on a bed and start poking & hooking her up and finally she wakes up - thank god.  I have to say this is the first time I have completely lost it since she was born and could barely mutter her name and date of birth to the nurse through my tears.  I had to pull it together quickly and explain to them her situation to get the neurosurgeon over as fast as possible. 

She was brought down for CT scan and X rays which Pat had to take her into (I can't go in because I am pregnant) and I can hear her screaming "mama" through the door :(.  Her scans showed her first and second/lateral ventricles are enlarged again (not the 4th).  Her neurosurgeon is not available this evening and we had a different surgeon who explained she needs immediate surgery to relieve the pressure and they will put in a temporary (external) drain on the other side of her head until they determine the cause of the malfunction and next steps.  She was in surgery within an hour of us arriving to the hospital.