Hydrocephalus and hospitalization (Part 1 of 2)

The ambulance bay at Southern Regional
Hospital.

Today I decided to broach a subject that I don't have much experience with since I am not shunted and that is hospitalization and hydrocephalus. I went to Hydrocephalus Association (HA) website and downloaded their fact sheet on the subject. As I was reading the information and deciding what information to include, I was struck by a profound statement made by fellow hydrocephalus patient Amy Herrington: "shunts are not capable of paying attention to a family's social calendar, or a child's school calendar". I sat here for a couple of minutes letting that soak in and was again reminded how blessed I am that my dad opted to not have me shunted. Make no mistake, shunts are a good thing because they can prevent an enlarged head such as mine, but with a BIG price including the risk of infection and the need for periodic revisions.

Amy hit it squarely on the head when she said "no matter whether you're a parent, child, or adult dealing with hydrocephalus and the possible need for shunt revisions, the common threat of hospitalization looms in the midst". Although I have never experienced it, I can only imagine what a family goes through when they face the possibility of a loved one having to endure yet another surgery and the range of emotions they will face. I have always heard that "growing old isn't for sissy's" well, I have news for you, hydrocephalus isn't either. Here are some tips that Amy offers for dealing with those hospitalizations:

General suggestions for all patients and families

• You have the right to review your own medical records (or those of your minor child) as well as to know what procedures you (or your child) will receive while in the hospital. (Health Insurance Portability and Accountability Act (HIPAA)

• Bring familiar items from home to make your hospital room look more inviting.

• Keep a written or tape-recorded journal while you hospitalized. Concentrate specifically on your hopes, dream, fears, or anxieties. Doing so is an important part of the emotional healing process.

For parents of infant children

• Remember that you are the advocate for your infant child. You have the right to ask questions (and receive proper answers) regarding your baby’s health. Become educated on what YOU can do to help your baby.

• If possible, hold your baby. Touch is crucial to their development. If it is not possible to hold your baby, talk quietly to him or her. Your voice is literally music to their ears.

For parents of a young child (ages 2 - 6)

• As with an infant, you are still the advocate for your young child. Inquire about your child’s health and learn what their needs are.

• Draw a map with your child that depicts the distance between the hospital and home. This will help your child understand where he/she is.

• Some children feel they have to be brave in the hospital -- especially around parents who care about them. Remind them that it is perfectly acceptable to express feelings of anger, sadness, or frustration in the hospital. Have them draw pictures of how they feel both physically and emotionally while they are hospitalized. This serves as an outlet to relieve tension.

For additional information: Hydrocephalus and hospitalization