Home

Morgan was discharged this morning.  We brought her home and was I was excited to get her settled and bathed (she loves baths and needed one after 5 days in the hospital), get the orange betadine out of her hair which was matted and gross and put some comfy clothes on to relax.  Normally I can fill the tub with her in it but knowing she was still very sensitive to water running and toilet flushing noises I filled it first with the door shut and tried to put her in the bath after it was full- she freaked out and screamed the whole time but I quickly washed her off as best as possible.  I was so bummed- she was such a water baby and I had no idea why she was so scared of something she used to love  (this continued for several days and finally I put a suit on and got in the tub with her one night which she loved and is back to normal).

At this point Morgan is just over a year old adjusted/corrected or 15 months actual.  She doesn't crawl (she has always hated tummy time) but sits up well and pulls her self to stand and walks up and down the drawer or around the coffee table, etc.  I noticed today that her balance is definitely not back to normal after the surgery- she would fall over just sitting up and I had to keep pillows around her so that she wouldn't get injured.  This was quite a step back for her unfortunately and took many months to get back to pre-surgery abilities.

IV

We were extremely frustrated and very tired early this morning since we couldn't put Morgan down and she wouldn't sleep.  Not easy to stay awake in her hospital room when we needed to keep it dark and quiet for her yet she was still frightened, jumpy and very uncomfortable :(  None of the medicines were working and we felt so helpless.

A new nurse came in for the shift change and tried to flush Morgan's IV...she freaked out again and screamed.  She decided it was time to take that IV out of her arm and it was out there was immediate relief on Morgan's face.  Bad IV line was clearly the cause of Morgan's pain and she fell asleep shortly after in peace- thank goodness!

Sensitive

Based on the first shunt revision quick recovery I was hoping to take Morgan home from the hospital today.  We started noticing this morning that Morgan is VERY sensitive to sounds.  The water running in her hospital room, toilet flushing, door shutting, etc. all make her jump.  They moved her up to a different unit (out of intensive care/PICU) and shortly after her sensitivity got much worse.  She was freaking out at loud sounds and especially water running and would clench on to us and cry- it was frightening for us and for most of the day we could not get her to stop crying or get any sleep. 

The neurosurgery doctor came up to see her and explained that it is likely due to the 4th ventricle changes.  CSF build up in her 4th ventricle would put pressure on sensory & hearing area of the brain and when the pressure was released after her surgery it can cause over sensitivity. Typically this goes away with time but just something she will need to deal with. 

This afternoon Morgan was mostly hysterical and we thought maybe she was in pain.  They moved her back down to the PICU and tried just about everything- more Tylenol (which is the only thing she was taking), Hydrocodone, and later tried more morphine and Benadryl so that she could sleep.  Still no luck, she wouldn't sleep and was very scared and we couldn't put her down. 

surgery

Today Morgan had surgery to "link" a tube from her current shunt (placed on the front right side of her head) to her 4th ventricle.  The surgery was a success and everything appears to be working as it should.  This procedure was shorter than her revision and less invasive since they use a scope to complete it and they did not need to make an incision in her stomach since that part of the shunt was untouched. 

Of course they shaved off a good portion of her beautiful blonde hair again- makes me sad to see and obviously the least of our worries but still can't help but think about what if this happens when she is in high school or right before pictures or homecoming/prom or some important event to her- will likely be devastating.  Thankfully her hair grows fast and we find cute headbands!

She slept most of the evening and seemed like she was doing well with little pain.  I hope she has a fast recovery like last surgery so we don't have to spend too many evenings at the hospital. 

Back to Childrens

The morning after Christmas and I was cleaning stuff up, putting gifts away, just finished breakfast with Morgan, etc. when she started vomiting profusely.  I immediately called Pat and asked him to get home (he was working) and called neurosurgery.  They advised us to head into Children's ER to get head scans.  Still her fontanel felt & looked fine but just glossy eyes, tired and vomiting and since the pediatrician couldn't find any illness it is quite possible something is not right with her shunt.

We got her admitted into the ER and brought her down for CT Scan & X ray.  I am almost 14 weeks pregnant so I couldn't go in with her so felt terrible but Pat was able to go and be with her.  Having scans is not fun- she typically cries hysterically through the whole thing and its difficult for them to get the photos they need because she won't be still. 

After her scans were completed the doctor working in the ER came in and told us her 4th ventricle was enlarged.  I didn't want to believe it but the neurosurgical team came in shortly after and confirmed.  They said this is unusual but in some instances the lateral (1st and 2nd) ventricles stop "communicating" with the 3rd and/or 4th ventricles for whatever reason and causes CSF build up there even though her laterals were still draining fine with her current shunt (the shunt has not malfunctioned).  Also why we did not see her fontanel bulging as a symptom. 

They had two options to resolve this- either place a 2nd shunt directly to the 4th ventricle or place a tube from the existing shunt to the 4th ventricle so that it would function for the laterals and the 4th.  They chose to do the latter, admitted Morgan to Children's PICU unit and scheduled surgery for the next day.  Here we go again :(

Christmas

Christmas day and again Morgan is VERY tired and could barely get her to open gifts.  What a bummer since she usually loves to rip paper & pull tissue out of bags and I was looking forward to watching her empty her stocking and opening gifts for the first time :(.  She is eating lightly but keeping her food down, still no fever, no bulging fontanel. 

sleepiness

Extreme sleepiness is one of the symptoms of shunt malfunction and we have noticed for several days now that Morgan is very tired.  She has been taking very long naps, difficult to wake in the mornings and her eyes are glossy and tired when she is awake.  Her grandma called late this morning and said she did vomit just a little bit but at this point we are certain something is not right but her fontanel is not bulging (looks totally normal). 
I debated whether to call her neurosurgeon or pediatrician office and went with pediatrician since her head seemed OK.  We took her in early afternoon and saw her Doctor and they did examine her, she didn't have a fever, etc. but found nothing wrong.  She assured me it did not look like a shunt issue since her head looked fine and we chalked it up to some sort of "bug" that she must have gotten.  She was able to hold her food down the rest of the day so hoped she would feel better in a day or two. 

Of course it is Christmas Eve and unfortunately Morgan was kind of a zombie during dinner & opening her gifts but she just seemed really tired and not feeling well. 

Mexico success

Well she made it down to Mexico and back!  We had the airport security wand her separately and gave her a bottle during take off and landing and the pressure didn't seem to bother her.  Of course sanitized the entire seat and space around us and was nice since we had the whole row on the airplane.  She did fantastic and no issues or hospital visits required!

Traveling with Hydrocephalus

My brothers wedding is coming up in October in Riviera Maya, Mexico.  We have been debating for a while now whether or not to bring Morgan with us to his wedding.  One of my greatest passions is to travel and I love to see and experience new destinations.  I never thought having a child would hinder our travel plans and always planned on just bringing he/she with us wherever we go.  Well having a preemie itself changes this let alone a child with hydrocephalus. 

A shunt can malfunction with little notice and it is very scary to think that we could be in Mexico and what if she had an issue?  I asked the neurosurgery team about traveling with Morgan and they said there is no limitation.  Some patients have said the airplane pressure bothers them and they get headaches, others don't notice.  Because her shunt is magnetic they said if it makes us more comfortable to ask security to wand her the airport versus going through the metal detectors but it wasn't necessary.  They suggested for us to have her medical records printed and her latest scans on a disc so that if there was an issue we have her baseline medical information on hand.

Pat and I struggled but finally made a decision to bring her with us- called the travel agent and had her added to the ticket and hotel to provide crib, etc.  We were nervous about leaving her at home also since there were only a couple of people who cared for Morgan that knew her condition and what her symptoms were if a malfunction occurs and they were going to be on the trip also.  I read some hydrocephalus support groups and blogs and the best advice I read on traveling with hydrocephalus is just to be prepared.  You can't live your life without traveling more than an hour from your neurosurgeon.  So I researched hospitals and neurosurgeons in Cancun, Mexico, called the hospital to ask their procedures if she should have an issue, let them know when we would be down there and explained the situation and retrieved copies of her scans & medical records on disc.  We had a plan and knew exactly where to go and who to call if something happens. 
 

Shunt Revision recovery

Morgan recovered from this shunt revision surgery very quickly with no issues.  She was discharged from the hospital after 2 days and again we were instructed to keep the incision sites clean and dry for two weeks.  She will have follow up scans in a couple of months. 

She seemed much happier than she has been and her fontanel did not fluctuate really at all.  In hindsight I wish I would have questioned their use of the self regulating valve versus a programmable.  I am not sure the success rate with the self regulating but it certainly did not seem to work well for Morgan.  I am also now wondering if this could be the reason she was so colicky.  For about three months she would cry nearly non stop in the evenings and we tried everything (reflux, gas, lactase drops, probiotic, etc.) but it might we quite likely that she was having headaches??

Shunt revision

Since I started reading about shunts and stories of malfunction I have always wondered and feared how we would know if something is wrong in a child that is too young to talk.  Some of the symptoms of shunt malfunction are vomiting, downward deviation of eyes, sleepiness, fussiness, headaches, etc.  Most of which can also be caused by other illness or even teething.  There have been a few times where Morgan's fontanel has been bulging for several days in a row and we never knew at what point do we call or go in to have it checked. 

Today she was very sleepy all morning (would hardly wake up).  Our summer nanny was watching her while I worked from home and after feeding her breakfast & a bottle said she vomited a little bit.  We have also noticed her fontanel has been bulging for 3 days now and have been watching.  So late morning I called her neurosurgeon nurse and she asked us to try feeding her lunch again after she woke up from her nap and if she is unable to hold it down then we should probably bring her in.  I had a gut feeling all morning something was not right (and she wasn't sick).  Sure enough after lunch she vomited A LOT so we called back and headed in for them to take a look. 

By the time we got up to the neurosurgeon she was looking a little better but we were worried about her getting dehydrated from vomiting up all of her milk & food all day so tried to give her another ounce of milk.  She kept that down so we gave her another.  She OK for a little bit but as they were examining her and deciding how to proceed (to get scans, etc.) she started vomiting again.  They tried to tap her head and were unable to get any fluid which meant that the shunt malfunctioned somewhere between her ventricle and the shunt reservoir.  Since she was feeling so terrible they ultimately decided not to wait and admitted to the hospital to prep her for immediate surgery (shunt revision).  Ugh- our worst fears of her shunt not lasting long came true :(

It is worth mentioning also that at some point after her initial shunt surgery I was reading and researching shunt malfunctions and alternative solutions and came across the ETV/CPC procedure Benjamin Warf was doing at Children's in Boston & they were doing at Children's in Seattle.  From what I understand the ETV procedure clears the obstruction and if done with CPC (cauterizing the choroid plexus to reduce the amount of CSF produced) it can be very successful resolution of hydrocephalus and eliminate the need for a shunt.  I had Morgan's medical information and scans sent to Seattle for them to tell me if she was a candidate for this procedure but found out since she never had a full MRI they cannot tell (if MRI reveals a major artery is too close to the 3rd ventricle the person is not a candidate).  I asked our Neurosurgeon about this and if this is an option instead of shunt revision but it was immediately discarded and I was told the risk for further brain damage is too high.  The would try to do ETV during the surgery to replace the shunt.   

Her surgery took place later this evening and all went well (same old drill meeting the anesthesiologist, signing paperwork and prepping in the PICU).  They decided to replace the entire shunt with a programmable valve (versus the self regulating which she did not have success with).  It is programmed magnetically and set to 100 to start with (can adjust accordingly depending on how she does).  They were unable to complete ETV procedure due to a large amount of scar tissue present.  She was brought back up to the PICU after her surgery and at this point it was pretty late so we let her sleep as much as possible. 

fluctuating fontanel

Since Morgan had the OSV (self regulating) shunt placed in December her fontanel (soft spot) has been full, then sunken, full, sunken, etc.  For about 4 days now we have noticed it is quite full and getting hard  which is making us very nervous but she doesn't seem to have any other symptoms of malfunction (she might just seem a little more tired).  I called the neurosurgeon and they had us come in just to check it out - they tapped the shunt without issue just to make sure CSF could easily be extracted and no blockage.  They ordered a pediatric eye exam the following morning for them to check if there was any pressure on her optic nerve.  Of course then we wake up the next day and her fontanel is sunken again and she seems fine.  Relieved and everything was normal with eye exam but annoyed with the fluctuation and we just never know how long we should wait before we get her checked out.