Preparing for Discharge
Barring any unexpected setbacks, we are preparing to take Sofia home tomorrow (Sunday). She is still drowsy from her medications, but through the afternoon more of her typical disposition has gradually returned. She's even had a few smiles to spread around, although she has not quite made it back to her happy go lucky self yet. We should expect that she may be a little grumpy for a while, as she gets used to the feeling of lower pressure in her head - it may feel a little bit like vertigo until she gets accustomed to it. Her appetite hasn't really come back, either, but she is drinking small amounts of formula. The doctors are not concerned about her appetite, as long as she is able to tolerate some formula. Her pain meds might make her nauseous, and the IV fluids may also be affecting her desire to drink.
Once we are home, we will need to avoid submerging her incisions in standing water (like a bath or a pool) for a month, but we do not need to keep them dry. Bathing is ok, as long as the water is below her incision on her stomach. We are free to wash her with her normal soaps and shampoo, and the soapy water will not hurt her surgical sites, but we shouldn't "scrub" the wounds directly. Her stitches will dissolve and fall out on their own in about 10 days.
Looking forward, we don't expect that her head will be especially more fragile or sensitive than a typical baby. We will need to watch for signs of infection until the incisions are healed, and possibly for a while afterwards, but that is obviously unlikely. Through her life, we will need to maintain some awareness of what it might look like if her shunt malfunctions; most children with SB and a shunt will need at least one shunt revision in their lifetime, but revision is a much less invasive procedure than the initial insertion. Sofia is also very fortunate, because she is not very "shunt-dependent." The neurosurgeon who rounded on her this morning explained that, for some children, their internal systems are completely non-functional, meaning that when the shunt malfunctions, they need to be treated within hours or days or risk damage to the brain. Sofia's internal systems work at, he said, about 80%. Her CSF (cerebral spinal fluid) DOES drain from her ventricles like it is supposed to, but not quite as quickly as it needs to in order to prevent build up. It took 9 months for the pressure to build to a point that it needed intervention, because her ventricles are mostly functional. If her shunt were to malfunction, we would become aware of that malfunction with a relatively long window for action before risking neurological damage. Symptoms of shunt malfunction are much like the symptoms we were watching for before insertion: lethargy or a behavioral change, vomiting, change in the way her eyes focus or track movement. In addition, her neurosurgeon will keep an eye on her shunt when we visit him for SB clinics every few months, so he will potentially notice an issue before it even becomes symptomatic.
All in all, this has been and will be a very positive experience. It feels pretty odd to say that this was a "routine" brain surgery, but that is exactly how the surgeons feel about it, and the benefits to Sofia are priceless. How fortunate are we, to live in an area where terrifying sounding, advanced medical procedures are not only possible, but ROUTINE?
Once we are home, we will need to avoid submerging her incisions in standing water (like a bath or a pool) for a month, but we do not need to keep them dry. Bathing is ok, as long as the water is below her incision on her stomach. We are free to wash her with her normal soaps and shampoo, and the soapy water will not hurt her surgical sites, but we shouldn't "scrub" the wounds directly. Her stitches will dissolve and fall out on their own in about 10 days.
Looking forward, we don't expect that her head will be especially more fragile or sensitive than a typical baby. We will need to watch for signs of infection until the incisions are healed, and possibly for a while afterwards, but that is obviously unlikely. Through her life, we will need to maintain some awareness of what it might look like if her shunt malfunctions; most children with SB and a shunt will need at least one shunt revision in their lifetime, but revision is a much less invasive procedure than the initial insertion. Sofia is also very fortunate, because she is not very "shunt-dependent." The neurosurgeon who rounded on her this morning explained that, for some children, their internal systems are completely non-functional, meaning that when the shunt malfunctions, they need to be treated within hours or days or risk damage to the brain. Sofia's internal systems work at, he said, about 80%. Her CSF (cerebral spinal fluid) DOES drain from her ventricles like it is supposed to, but not quite as quickly as it needs to in order to prevent build up. It took 9 months for the pressure to build to a point that it needed intervention, because her ventricles are mostly functional. If her shunt were to malfunction, we would become aware of that malfunction with a relatively long window for action before risking neurological damage. Symptoms of shunt malfunction are much like the symptoms we were watching for before insertion: lethargy or a behavioral change, vomiting, change in the way her eyes focus or track movement. In addition, her neurosurgeon will keep an eye on her shunt when we visit him for SB clinics every few months, so he will potentially notice an issue before it even becomes symptomatic.
All in all, this has been and will be a very positive experience. It feels pretty odd to say that this was a "routine" brain surgery, but that is exactly how the surgeons feel about it, and the benefits to Sofia are priceless. How fortunate are we, to live in an area where terrifying sounding, advanced medical procedures are not only possible, but ROUTINE?