July 27th with a 6:30am departure to Baltimore. We dropped her off and headed to the Baltimore Zoo. Overall we had a great time at the zoo and I was very impressed by the exhibits there. The penguins were amazing and we were able to get very close to a lot of the large animals.
About 30 minutes after we got there, though, Cole started complaining of head aches. He ended up falling asleep on my shoulder and woke up feeling better. We walk around a little longer and then started getting another head ache so we headed for the car. Unfortunately, we've been tracking these symptoms since January 9th when this all started. He had 4 episodes in February, one in June and now 4 in July. All symptoms include complaints of a head ache, crying, asking for water and trying to pop his ears (trying to release the pressure). Of those 10 episodes four also included vomiting.I was on the phone with the neurosurgeon after the second episode on Monday and when the third started I decided to head to the ER. Unfortunately just as we pulled up he threw up all over my back seat. I ran in and was immediately brought to a room. After retelling his entire NICU journey FOUR TIMES and the history of these episodes from January FOUR TIMES they ordered an x-ray and MRI to see if there was a shunt malfunction. Cole did GREAT for both tests. He is highly sensitive to noise so I was very worried they were going to have to anesthetize him for the MRI. But they let me lay over his legs and go into the machine with him. He also had a head set and ear plugs which helped a lot.
Long story short, the shunt series (x-ray) confirmed there were no cracks or occlusions in the catheter leading into the shunt valve or from the valve into the brain. The MRI showed that his ventricles were not enlarged. And although they don't have anything to compare this scan too (since those records are at Children's National) the vents were super small. This leads us to believe that the issue is not the shunt hardware. With that said, the x-ray did show that Cole has a severely compacted colon and backed up intestines. Apparently so constipated that the theory is that the bowel is pushing against the abdomen and preventing the shunt from draining correctly. So when the shunt can't drain properly it puts pressure on the brain causing a head ache. If the head ache is severe, he then vomits which releases the pressure and makes the head ache go away.
Cole was definitely a trooper. It is so hard to see him go from his normal, happy self to being unable to lift his head from my shoulder and moaning in pain from the head ache. But luckily all these episodes generally resolve in about an hour. The longest one was Monday which started at about 4pm when he woke up from a nap with a head ache until about 9pm that night. Given he is feeling well between episodes (and we haven't had another one since Monday night) he had fun visiting with Chloe, the therapy dog. He also visited with two clowns, Dr. Boots and his assistant. They were absolutely hysterical and Cole had fun popping their bubbles and joking with them. The hospital also had a great Child Life specialist who brought him toys in the ER and once we were admitted they had a great playroom on the floor where he could find new toys to entertain him.
Ultimately they decided to give Cole and enima and send us home Tuesday afternoon with a regimen of strict Mirilax for the next 6 months. We will follow-up with his neurosurgeon and determine if further testing is necessary. After speaking with the pediatrician today, however, she doesn't think the Mirilax is aggressive enough and has recommended magnesium citrate. I asked the Pediatrician in the hospital about that but he said it wasn't necessary since our situation wasn't really an emergency. After reviewing the X-rays, however, our pediatrician said it really isn't a good idea to wait a week for the Mirilax to kick in. She is of ht opinion that vomiting because his shunt isn't draining definitely constitutes a more aggressive plan. So tomorrow we will start a cleansing process. Unfortunately we have an appointment at the National Federation of the Blind at 9:30am and Cole has therapy at 2:30pm so it should be interesting to see how we can make all that work. I truly have no idea what to expect.Only time will tell how this will resolve. Hopefully the steps we are taking will help and we won't continue to see the symptoms. I can't thank everyone enough for all their prayers and offers to help. We definitely have the best support system and it truly makes all the difference in the world. Let's hope the rest of our week is less eventful!
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