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.