My Journey with hydrocephalus and Cerebral Palsy

Morgan Grace was born 3 1/2 months early on Aug, 21, 2012 weighing just 1 lb 7 oz and 13 inches long. Morgan was hospitalized at Children's Hospital NICU in Minneapolis, MN for 108 long days. During this time she encountered many medical challenges common to "micro preemies" but most devastating was to hear she had suffered from grade III/IV Intraventricular hemorrhage (IVH / brain bleed). We were told she may never walk or talk and they would not be able to tell the severity of the damage until she is older. The IVH resulted in Hydrocephalus, a condition she will have for life. At two, Morgan was also diagnosed with Cerebral Palsy.

I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.


From Wikipedia, the free encyclopedia:

Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.

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Friday, October 28, 2022

Home


Last night was maybe one of the most difficult hospital nights we’ve had :( 

It’s been challenging to manage Morgan’s pain/discomfort- she had a plethora of meds yesterday afternoon/evening and just nothing else they could give her, they finally tried a narcotic via IV I think about 10:30pm after she couldn’t fall asleep and was in tears, which made her feel like she was going to vomit so took a while for that to pass.  I think she maybe had a couple hours of sleep and of course shortly after she finally dozed off a couple of times a nurse would come in for a blood pressure check or her pulse ox would go off from her tossing etc, I finally had to ask (beg) them to remove the monitors and leave her sleep (which they did reluctantly) and rubbed her back until she fell asleep and she got a couple hour stretch. 

She was getting pretty agitated and told us at one point “I think these meds are fake” and to “Call Dr G because he could give her some real ones”…some humor in a challenging situation! 

Anyway the morning was long and a bit of a fiasco with getting prescriptions filled and discharged (we got home around 2:30) plus trying to find a wheelchair in the right size. They brought one a size bigger than she needs and unfortunately the medical equipment rental place doesn’t have the 14” we need so we have a 16” for now and ordered one which hopefully should be here on Sunday. She did have PT come in this morning and showed her how to transfer, gave us a walker (mostly for stabilization and toileting) and had her do the wheelchair.  If we are late everywhere we go for the next month it’s because she won’t let us push her and has to do it herself! I keep telling myself her stubbornness and determination is a good thing!  

I am usually a planner but for those reading this who may go through this surgery at some point a few things I wish I would have asked pre op or purchased in advance you need for home- over the counter ibuprofen & Tylenol and a pill cutter, cast cover and a bath chair, ask for a walker, ensure they have a wheelchair in correct size or order before, and several pairs of wide leg sweat pants to fit over cast. 

Of course bring sharpies for cast signing! One of the few things that brightened her day. 

She was still in quite a bit of pain this afternoon and evening, they did leave her cast slit up the sides because of swelling and we will go in next week to have it closed/wrapped. Bags of ice over her cast seem to help but I think it’s the Oxycodone now making her stomach upset also so will try to wean her off that tonight/tomorrow. Grandma came over to tonight (to allow us to step out and watch Max’s first hockey scrimmage) but she was definitely in pain, tummy ache, and think slept for a little bit at least.   We have her in our bed, foot elevated and ice over and she finally ate some bread and watching a movie now, hopefully a better night at home




Thursday, October 27, 2022

Post Op

Surgery went great. Her surgeon said they did not have to do the muscle lengthening which is a good thing. This is something they assess during surgery after they rotate the bone depending how the muscle looks and if more length needed but they try not to do it because it weakens the muscle and recovery/getting strength back takes longer.  Hoping with  casting over the next month flexing her foot it will keep it stretched and help prevent further toe walking. 

She has a plate/pins in and casted for about a month. They left slits on the sides of her cast to allow for swelling and depending on how it looks in the morning they will close/ wrap it either here before discharge or come back in a few days.  

She was quite entertaining coming out of anesthesia and the first thing she said to us was “I need to get some pants on and get up to my room, I have visitors coming”. We are just relaxing now, she ate some food and trying to manager her pain.




Surgery

Everything ran smoothly this morning! 

Morgan’s largest concerns were if she got to pick her cast color and she interrupted our discussion of the procedure(s) with her surgeon with a very important question of “what color sharpies work best on pink?”.  We also made sure she got to pick the flavor of smuckers that goes on her mask (went with vanilla, no fruit) and even found a small mask for boogers (her blanky that’s been through many surgeries with her). 

I was able to bring her back to the surgical room and hold her hand while she went to sleep. This is always the scariest/hardest part and there were some tears but she clenched onto bunny and boogers in one hand and mine in the other! 

They called with an update a few minutes ago and said they started about 5 minutes ago and she’s doing great.






Wednesday, October 26, 2022

Tibial Derotational Osteotomy - Round 2

Lets try this again...

Morgan is scheduled to check in at Gillette's at 8:45 am tomorrow morning with surgery at 10:15 am. 

Pre Op exam and labs completed last Monday and she was a rockstar with the blood draws, no tears!  No COVID test required since we are within the 90 day window of her last positive PCR test.  We did her first surgical bath this evening and have to do another one in the morning.

In hindsight, the month and a half delay was probably a good thing.  A bit of a pain to rearrange & redo everything but it allowed her to enjoy a full season of cheer this fall, walk in her aunt's wedding, and enjoy a fun MEA break with friends at a waterpark hotel in Okoboji.  Her expression at the waterpark says it all!  

We appreciate your thoughts and prayers for Morgan and the skilled hands of her surgical team tomorrow!