To shunt or not to shunt....

The past few days have been a whirlwind to say the least. Liam had his Spina Bifida clinic last Thursday at Duke. He was scheduled to see all of his specialists and have some tests performed. When he met with his neurologists after his MRI we got bad news about his brain. Three of his four ventricles were larger than the previous MRI indicated and would need intervention to prevent damage to the brain.  Liam's brain is not able to fully absorb the cerebrospinal fluid, leading to excess fluid.  Without intervention, the excess fluid would cause increased pressure within his brain, possibly leading to permanent brain damage.  Luckily since he's still a baby, his head is still pliable and able to expand to accommodate the excess pressure.  He hadn't been showing any symptoms that are typically related to hydrocephalus (fluid on the brain) such as pain or vomiting.  However, we did find out last Monday when Liam met with his new PT that Liam is behind developmentally in almost all categories.  This delay is probably attributed to the excess fluid on his brain.  His is now scheduled for more intense therapy to help catch him up developmentally.  He'll also have his left leg casted to help straighten his foot to a more neutral position.  If the casting doesn't work, then he'll need surgery to stretch out his Achilles' tendon and get his foot back to neutral.  Right now his foot and ankle are so tight that he is starting to get a clubbed foot.  We'll going to try the casting first, but his orthopedist thinks that surgery will have a greater chance of success. 

Back to the brain:  We talked with Dr. Muh, our neurologist, in great detail about what needed to be done so permanent damage would not happen. Dr. Muh told us about a newer procedure (ETV, endoscopic third ventriculostomy) that many infants with myelomeningocile (his form of sb) and hydrocephalus have success with. We were hesitant because she said if it fails then he will need a shunt to be placed in anyways. Ian and I have dreaded the shunt since we found out he had SB in the womb. The shunt is the parents' and baby's worst nightmare since it malfunctions, moves, gets clogged, etc. and it requires lots of surgeries throughout his life. We decided on Thursday that we would just do the shunt and get it over with.

Flash forward to Tuesday morning at Duke and we are in the pre-op area. Dr. Muh tells us that she studied Liam's MRI all weekend and feels that he has a strong chance of high success rate with the ETV surgery and would we reconsider not placing the shunt in right now? We were both already a bundle of nerves and were shocked that she brought it up again. She gave us more info and told us that no matter what route we chose Liam is going to need surgeries as many SB kids and adults do and that shouldn't be our reason for not trying out the newer procedure. After talking and praying about it we changed our minds and off to surgery he went. Believe me, we both kissed that boy a thousand times and held on tight to him all morning. In typical Liam form he was in a wonderful mood even though he got up at 4:45 am and hadn't eaten any food since 7:30 the night before. And believe me he loves his food!

The surgery involved putting two small holes in a membrane in the third ventricle of his brain to allow an alternative route for the cerebrospinal fluid to drain and be re-absorbed. Yes, we allowed a doctor to put holes in our babies brain...we must be crazy! She tied his beautiful hair back so he didn't have to get his first haircut in the OR. Dr. Muh said that would just be horrible and I thanked her allowing me to give his first haircut. He was back in surgery for a little less than 2 hours. It was horrible waiting in the waiting room but Allison's parents came down with us and helped keep us company. Liam did great and she feels that this surgery will be successful. There is a chance of the holes closing back up since he is little and his brain is still developing but she is hopeful. Usually if a baby makes it to 6 months of not needing a shunt then the ETV works well. Time will tell.

Liam woke up from surgery and was groggy but overall in a good mood. This kid is a warrior! He got snuggle time with both Ian and myself and then Grammy and Granddaddy got to snuggle as well. We were left in recovery for over 5 hours since they didn't have a room for Liam once his procedure was complete. It was hard for him to sleep with all of the noise but he managed a few catnaps. He took to eating right away and never got sick. The nurses were shocked he didn't get sick because of all the anesthesia but I told them the kid doesn't miss a meal.

Last night was rough at the hospital. He was in a lot of pain and we kept trying to figure out what medicine would work the best. Poor Ian had to sleep on the floor as we only have one chair in the room. At least we have our own room. There was also a tornado warning this morning with sirens and all so that kept us alert and awake.

The resident doctor has already been by and said that as long as Liam continues to keep his food down he should be discharged at some point today. Dr. Muh will be coming by later with instructions and a follow-up appointment date next week. She did the surgery endoscopically so he has no scar, just three stiches on the top of his head. It is rather scary/amazing that they can do brain surgery on a 7 month old and then send him home the next day. We all can't wait to sleep in our own beds tonight.

Please pray that the ETV works and no shunt will be required. Please also pray for his pain to go away and for safe travels. Heavy storms are in our path all the way home today. Remember: God is Good!