So last I left you was after we originally saw the Pediatric Neurologist we were waiting for tests to be approved and scheduled back in March. Well there have been even more issues.
We waited for the tests to be approved and they were. We had the MRI scheduled at the hospital for the end of April the same day my younger sister would be having her surgery at the same hospital. The EEG was scheduled for the 2nd week in May. This meant 2 more months of no answers. Two days before his test we got a call that something else was wrong with insurance. It took those two days to get is figured out and we went to the hospital.
The MRI was sleep deprived so I had to stay up with Monkey man all night until they gave him the medication to fall asleep.
When we arrived at the hospital we were taken upstairs to a room on the pediatric floor. Monkey man was quiet upset that he had to change into a hospital gown and pants. He really wanted to stay in his batman PJ’s and I didn’t blame him. We changed him and began coloring in the coloring book I brought him.
The nurse came in and took his vitals and explained what was going to happen. They were going to take him for an IV and then come back to the room he would then wait till the MRI machine was ready. Once they got the call that it was ready they would give him the first dose of medication and wait 20 minutes to see if he fell asleep if not they would give him the second and final dose and wait till he hopefully fell asleep.
My husband took monkey man to the special room to get his IV in. I heard him scream for 30 min until they finally got the IV in after poking him 3 different times. My poor baby came back in the room crying and cuddled up into me. I put on frozen and he cuddled into me and was almost asleep. We switched to play-doh to keep him awake.
At 12:00pm the nurse came in to take his vitals again and give him his first dose of medicine. When she walked in monkey man looked right at her and yelled “Go away you Meany you hurt me really bad!” and began crying again. We did our best to calm him down and he finally agreed to take the medicine. He complained that is tasted horrible and I felt bad we couldn’t give him any water to wash it down with. We laid down and cuddled quietly for 20 minutes and she came back in with the second dose. Monkey man took it and laid back down. He began to act very loopy and we had hopes that he would fall asleep. However, we ended up not being so lucky and after 2 and a half hours of rocking, being quiet, movie watching, and using all of our strength to keep him from getting out of bed they discharged us. No tests, no results, no answers. I was devastated.
The next day I called his pediatric neurologist and explained what happened. We were informed that the next step would be to do the test under anesthesia and that we would need to go through the hassle with insurance again. So we submitted the forms to have him put under anesthesia and get both the MRI and EEG done at the same time. I started calling both insurance and the doctor’s office every day trying to get answers sooner. Three weeks later we finally got approved and were able to get him in the end of May for the tests.
The hospital called to inform me that I would need to go to a pre-op appointment with monkey man a few days before the procedure and that they would also need him to have a physical with his pediatrician the day before. I called and made those appointments and took monkey man to both.
The pre-op ended up just being a lot of paperwork that I had to fill out. They explained that we would be admitted to the pediatric floor at 8 am. When it came time for his tests we would go down to the surgical floor. He would be taken into an OR and be given the anesthesia and then they would put in the IV and the tube to breathe for him. HE would then go to the MRI machine and have his MRI without contrast then his MRI with contrast. Once the MRI was done he would be moved to the neurology floor to have his EEG done and once the EEG was done he would go back to surgery to have the anesthesia shut off and the tube removed then go into post op where I would be able to see him. They told me it would be about 2 ½ hours.
The next day we went to his pediatrician’s office and he was given a physical and it revealed he had an ear infection starting so they gave him some antibiotics. I was told it would be safe for him to still have the procedure done. When we were done we waited for the paperwork giving him the all clear and then we left the office and prepared for the next day.
We arrived at the hospital at 8 am and were admitted to the pediatric floor and monkey man was made to change from his Batman PJ’s into the tiger gown and pants and was again not happy about it. Once we got him changed the nurse came in and took his vitals and we were told it would be awhile before we were called down to the surgery floor. Monkey man was then told about the play area and was very happy to go play. Monkey man and I made our way to the playroom and we played for 2 hours. We went back to the room to visit daddy and the nurse came back in to let us know that we would be going down to the surgical floor within a half hour and she took his vitals for a final time.
At 11:00am Monkey man, bunny the bear, my husband, and I went down to the surgical floor. The pre-op room was full and we were place out in the hallway. At first I was a little annoyed because we were out there but it ended up being the best place for monkey man. Many hospital staff came by bringing him presents, making him laugh and putting us at ease about the whole procedure.
At 12:15pm Monkey man was wheeled into the OR with Bunny the bear and screaming for mommy. It broke my heart. I wanted nothing more than to scoop him up and take him out of there. We proceeded to the waiting room with the nurse and were told that his ID number may or may not appear of the board to tell us where he was at. We were told we would see him in 2 ½ hours and to go eat some lunch and come back.
We went to the cafeteria and picked at our food for about an hour and then headed back to the waiting room. Monkey man’s ID number never appeared on the board. 3hours passed and I started getting worried. My husband did his best to calm me down and we ended up getting in a little fight when I wouldn’t listen. At 3:30pm I flagged down the nurse that originally brought us into this waiting room as she was bringing in another mother. I explained to her that we still hadn’t heard anything and so she went to check for us. When she came back she explained that he was just getting the sensors pulled off in neurology from his EEG and we would see him in about 20 minutes. She explained that they had to get out of the MRI machine mid test for an emergency and that is why it took so long. At 3:50pm I was taken into the post-op room and was told that he should be waking up soon and to just keep talking to him and wiping his face with a cool cloth until he does. At 4:15pm monkey man was awake and we were taken back up to the pediatric floor. Daddy met us up there and we wanted to call and tell everyone that it was over and he was ok but both our phones were dead. The nurse was awesome and brought us her iPhone charger to charge our phones. I am so grateful to how amazing she was this whole day.
After we called everyone she came back in to take monkey man’s vitals and bring him a Popsicle. Monkey man loved his Popsicle. We laid down and cuddled and watched a movie for a few hours until he was finally released at 6:30pm.
Two weeks later we went to our appointment at the Pediatric Neurologist office and were told that the EEG was clear and that the MRI showed that the mastoids were swollen. I was told that we would need the pediatrician to refer him to a ENT to get those looked at but most likely he was suffering from migraines and would need to be put on a nightly medication. We waited until the beginning of July for him to be seen by the ENT and were told everything was clear and most likely it was because he had an ear infection at the time of the MRI. We returned to the Pediatric Neurologist at the end of July and were finally given some medication for Monkey Man’s migraines.
It is now the end of august and monkey man has been on his medication for a month. His migraines have went for 3-7 times a week to 1-2 times a week and continue to get better. We are so very grateful that this was nothing more serious and that he will be able to eventually be migraine free with the help of medication and will be able to be a normal child.