Signs of a Shunt Malfunction

Some of my friends and family have asked me questions about what to watch for when they are around Emma. Mostly, symptoms of shunt malfunctions are things that should be red flags no matter if the child has hydrochephalus or not. Once Emma does have her first malfunction, we will know her personal set of symptoms that she will experience for every subsequent malfunction. I continue to hope that it will be a long time before I find out what Emma's set will be; however, I know it is better to prepare for it then hide from it. I am trying to not only prepare myself, but educate and prepare my friends and family as well.

Emma has been lucky so far as she has not experienced a single issue with her shunt. This is not the norm as more than half of the shunts placed fail within two years. That statistic has been in the back of my mind since Emma was born. Other statistics show about 40,000 shunt-related surgeries are performed each year costing over $1 billion in the United States alone. These numbers are staggering when you take into account the limited knowledge most people have about hydrocephalus. This can make it a little more challenging to learn about the condition without the support of doctors and websites like Hydrocephalus Association (both of which I am grateful for).

As we approach her second birthday, I am doing my best to make sure I am prepared for when (not if) she does have her first shunt malfunction. I know it is coming and I know that time is extremely important when it does happen as mere hours can be there difference between a revision surgery and brain damage or death. Some of the symptoms of a malfunction, for a child that can not verbally communicate how they may feel differently, are very subjective. If you have spent enough time with Emma and know her personality as well as her normal eating and drinking habits, you are more likely to notice a change in them. Decreased appetite or lethargy are symptoms that are difficult to gauge as every child does have a normal change in these habits over time and even day to day. The same goes for a fever - it can be a symptom of a malfunction, but it can also be a sign of so many other things that it is hard to know if the fever should just be treated with Tylenol or a cause for concern.

Shunt malfunctions are most commonly caused by a partial or complete blockage of the shunt. An obstruction can occur in any part of the shunt, but in children it is most common in the part that is in the brain. You also have to consider the possibility that parts of the shunt can become disengaged or broken due to wear and growth. No matter the cause, there are symptoms to watch for. If the child is young enough to still have a soft spot (or in Emma's case, still does due to her increased head size before the shunt was placed), then you can watch that area. If it becomes full and tense, the likelihood is that there is an increase in pressure from fluid that is causing it. Once the soft spots are closed on children, this sign is no longer valid. Other physical signs on the head to watch for are swelling or redness of the skin near the shunt as well as bulging veins. Other symptoms include headaches, vomiting, irritability, and tiredness.

To correct a shunt malfunction, revision surgery will be required (and possibly more than one). After any shunt-related surgery, there are risks for shunt infections. However, they usually happen within six months post-op. Other complications to watch for include the shunt system draining the cerebrospinal fluid (CSF) at the wrong rate. Not draining enough and draining too much are both cause for concern.

In an effort to monitor her shunts' functionality, Emma has rapid MRIs done on a routine basis. Her next one will be on March 7th so we are keeping our fingers crossed for good news. With all of her development, I couldn't be more proud of how far she has come already. So until her birthday, we'll continue to play with her new favorite toy: BALL!

2012

Looking back, this year has been packed full of so many changes for both Emma and me. It's hard to believe that so many changes could happen in one calendar year, but here we are at the end of 2012 looking back at how far we've come.

After all the presents, the birthday girl enjoyed some yummy milk!

I think back to January when Emma was unable to see her surroundings and I am astonished at how much her vision has improved. She was moved into her third and final helmet. At that time, she was seeing her Occupational Therapist (OT) six times a month and her Vision Impairment Therapist (VI) twice a month. At that time, she was working to gain the strength to hold her head upright when held in a supported sitting position. In February, we celebrated her first birthday. The best birthday gift was she began showing signs of sight. March was filled with doctor's appointments and therapy. Emma also had her most recent MRI on 3/14/12 so we are looking forward to the next one to see her progress over this last year. Her cardiologist also stated her ventricular septal defect (VSD) was healing well and he removed her 30 minute time limit for meals.

My little Easter bunny.

April was an important month for both of us - for Emma because she received her feeding chair which made it possible for her to sit unassisted during meal time so that she could start working on learning how to eat like a big girl. It was also the month my divorce finalized in court - something I had been looking forward to ever since Emma's father told me he wanted the divorce on 12/1/10. In May, we went to her first Neonatal Intensive Care Unit (NICU) Reunion which was an incredible experience. Seeing all of those amazing children and their families gave me so much hope and encouragement that Emma and I were doing everything right. June was a normal month of therapy and growth. She began to show signs of tolerance as her therapist and I began working with her on assisted standing. She has always been a good sport about everything we help her with, but Emma did sneak out to see her first movie in theaters as a nice stress reliever.

 

July was busier as she got in the pool for the first time to prepare for the beaches in Hawaii later that month. It was our first vacation together and one I will never forget! The best part was when she laughed for the first time. Emma also really started doing well sitting unassisted for longer periods of time. In August, Emma had her picture taken to be a part of the Gallery of Hope. Visually she showed improvement with a decrease in her nystagmus (tendency for her eyes to shift side-to-side constantly which impeeds her vision). At the end of August, Emma switched VI therapists. She took some time to warm to her new therapist, but she has been doing well with her every since. Orally, she began eating a new brand of baby food with chunks in it that she would tollerate. In September, the best thing that happened in Emma's world was she was phased out of her last helmet! Baby Stig would be but a faint memory only proven by the many pictures that I have of her in them. She had also worked up her endurance for sitting unassisted to over 15 minutes.

October was one of the best months for me for many reasons. Emma began Physical Therapy (PT), which would allow her OT to work primarily on her oral challenges and give her more support on both her motor and oral skills. This meant Emma's schedule went from eight sessions a month to ten - OT four times a month, PT four times a month, and VI twice a month. Emma also began to show some real independence at times by pushing hands away that were trying to feed her something she didn't want as well as grabbing hands and pulling them to her when they were trying to tickle her. And of course, I turned 30. I know the decade ahead will be better than the one I've left behind so I'm anxious to get started! November was another big month for Emma as she began Speech Pathology Therapy (SP). This added two more sessions of therapy a month to Emma's ever growing dance card. To accomodate all her thearapists and my work schedule, we ended up moving all thearapies to Tuesdays. This would make for a very busy day for her, but no more physically demanding than if they were spread out due to the focus of each therapy. We also took our second vacation together - this one was a road trip to Austin for the inaugural Formula 1 race. It was great to see how well she would handle road trips - which she did beautifully other than having a leaky diaper less than ten minutes after we left the house. We also went to see the unveiling of the Gallery of Hope that she was a part of - which ended up on the local news! Everything that happened this year just kept building all the way through December. At this point, Emma can say twenty words and understands and additional eighteen more words/phrases. And then, to top off everything, I had Emma for Christmas. That said, not much else I can say at this point to make this post better.

Looking forward to a wonderful 2013!

Merry Christmas!

Christmas is probably my favorite time of year. I love the spirit of the season and all of the things that come along with it (even the ones that are rare in Texas like snow). I decorate my house with a tree or three (yes, three - the 7.5' one in the living room, the 4' one in Emma's room, and the little one in my room), a garland over the fireplace with stockings, snowflakes on windows, wreath, fire in the fireplace, and usually holiday cookies of some sort ready for Santa. Last year was Emma's first Christmas and I didn't put everything out as I normally would have because I was a little busy and she wasn't able to see at that point yet. This year, I wanted her to have the full experience because she can see. With a little help, I got everything decorated. I wasn't supposed to have her for Christmas this year as it was going to be her father's turn to have her. But to my excitement, he offered to bring her back on Christmas Eve so she could be with me and my family to celebrate! I don't need anything under the tree or in my stocking this year because I have the greatest gift of all - my daughter for Christmas!

Picture in the outfit I bought her to wear Christmas day.

Now that Emma is getting more curious about people, I wanted her to meet Santa for the first time. Lucky for us, he made a stop close by so we went up to say hello. I told him what a wonderful girl she has been and how she deserves anything he might have in his bag of presents. He assured me that she was on the "Nice List" and would be getting something very special this Christmas. When she sat in Santa's lap, she was very curious about who this new person was and why he had hair growing out of his chin. This new phenomena was perplexing to her and I could see her thinking about pulling the hair like she does with my hair, but she thought better of it. Didn't want to be taken off the "Nice List" so close to Christmas...

  

Hi Santa, I'm Emma. I have always been a very good girl. I know that cause my mommy tells me every day.

As for Christmas Day, we started our morning just the two of us talking about how Santa had come and enjoyed the cookies and milk we left out for him. Then we began opening the presents that she had under the tree and in her stocking. She needed help opening everything, so it was a team effort. Once unwrapped, there were bells to play music, crayons to color with, and so much more! Then we got dressed and ready for a fun filled day. Once we were ready, it was time to pack up the gifts in the car and head to my parents' house for breakfast and more Christmas time!

At my parents' house, there was a beautiful tree decorated with crystal and delicious food ready to eat. We enjoyed breakfast and had some family time before we got to the gifts. Emma was a very lucky girl this year as she got some wonderful clothes and toys from her grandparents. Her aunt, uncle, and cousin got her a cupcake piggy bank and some great toys as well. Once we were finished, it was time to go home and take a short break before we packed up and headed to my grandparents' farm to celebrate with the whole family.

During the break, it began to snow. Emma had never seen snow so I was excited her first Christmas that she could see would be a white one. We went out to see the snow and she was a bit unsure about it. She didn't like the wind so it was difficult to see what she thought of just the snow. Then it was time to feed her and pack her up for our next adventure! The drive there was white and slow, but absolutely beautiful. The whole ride to the farm, I was telling Emma stories about my childhood experiences with snow and all the fun things you can do with it.

Once at the farm, we enjoyed family time followed by delicious food again. My family is great about putting on a holiday with amazing food and this Christmas was no different! After stuffing ourselves, it was time for the presents. And what wonderful presents there were - Emma received so many things off her wish list that I'm going to have to go through and see if there's anything left to buy. Her bathroom is getting a facelift with fish everywhere! New towels, shower curtain, bath mat, and much more. She also got some wonderful books and puzzles that I know she'll love. With such an amazing family, what more could a little girl wish for? She smiled and had no complaints... Other than having to wear shoes and socks.

After we got home safely, it was time to unload the loot and get Emma ready for bed. But after she ate and I read her one of her new books, she was so sweet and snuggly that I couldn't put her down. She fell asleep in my arms as we sat in front of the fire and I held her for about 30 minutes before finally laying her down for the night. Can't wait to tell her about this Christmas in the years to come.

Merry Christmas to all, and to all a good night!