|Friday, June 25, 2007 was the start
of a terrible nightmare. I had no idea this was the last day I would have
with my 6 month old baby girl as I knew her.
She slept longer than any other morning. When she didn't wake up I went in her room and she was soaked in sweat. I immediately took her temperature and it was 105 degrees. I called her doctor and he wanted me to give her Tylenol and call back in an hour. An hour went by and I checked her temperature again. It was down to 99 degrees. I thought maybe it was a fluke. I had kept an I on her temp through out the day but when it crept up to 102 degrees I called the doctor. He was no longer in the office, and the receptionist directed me to the doctor on call. Her and I were in contact all weekend.
On Saturday Rylan's temperature fluctuated between 102 and 103 degrees. She also started throwing up. This continued through Sunday and the doctor assured me it was just a virus going around and that it would pass in a couple days. As long as she was wetting her diapers she was fine. I followed her instructions the rest of the weekend.
Rylan still wasn't getting better. First thing Monday morning I took her in to see HER doctor. He took one look at her and had me rush her to Hershey Medical center. He told me she had a severe internal infection. I had no time to think or ask questions. I just knew I needed to get her there immediately.
She was seen immediately. By this time her eyes were drifting apart and she was shaking. I could hear the ER doctor talking about possible blindness and seizures. They then told me it appeared to be meningitis. I had no clue what meningitis was. She needed to have a spinal tap done to be sure.
She was sent up to the PICU. They determined she had pneumococcal meningitis. The PICU doctor explained she would need a series of antibiotics. She was on a steroid, and seizure medicines. She had a breathing tube, feeding tube, and wires everywhere. I couldn't believe that was my baby girl.
After about a week or so she was taken off the breathing tube. But she had an 18 minute seizure, which caused her to have a stoke the next day. She was placed back on the breathing tube. And remained in the PICU for another 2 weeks.
Once she was stable enough she was moved to the intermediate unit for another two weeks. During this time she had several hearing tests. Which she seemed to be failing. She had very high muscle tone. Her pupils were to different sizes, and she was having trouble tracking with her eyes. We started to bottle feed her again. She only took 10mls of water the first try. She seemed to have lost the ability so suck.
She was then transferred to inpatient PT and OT. She had each therapy once a day. She also received speech therapy for her suck and swallow. She progressed to 6 oz feedings 4-5 times a day! This was a great accomplishment. We were able to remove her feeding tube. At the end of the second week she started to have seizures again. She cried from 10 am until 2am the next morning (non-stop).
She was sent back up the intermediate floor. They did a brain tap to check her pressure in the brain, but the numbers weren't high enough to suggest brain pressure or swelling. We adjusted some of her medicines and her seizures stopped. In about a week and a half we were being discharged. I felt uneasy about her breathing pattern when she was feeding. They did a swallow study which showed she was silently aspirating. They then put the feeding tube back in. (NG tube). We went home with this. She was hospitalized for 40 days. We went home on August 3rd 2007.
It felt very good to have Rylan home. We had home nurses for a short time to help with the tube feedings. And home therapy was given through Early Intervention for her PT, OT, vision, and hearing. We were at home for one month. She had very little progress. It was one step forward and tree steps back.
On Sept 6th 2007 it seemed to be happening all over again. She was throwing up, cranky, and her urine was an orange/pink color. Just the same as in June. I took her straight to Hershey. She was admitted. They had done another spinal tap. They tested for reoccurring meningitis. It came back negative. They did another brain tap. This showed increased pressure in the brain. They immediately did surgery and placed a permanent shunt. Her seizures came back and we adjusted her meds. They still arenąt gone, but they are better.
After the shunt we went home a week later. Her muscle tone is much better! Her pupils are the same size again. Therapy seems to be making a little progress. However she failed her swallow study. She was scheduled to have a Mic-Key button placed.
One month later we were back in the hospital for surgery. She had the Mic-Key button done. Surgery went well, but Rylan hates it. I donąt like it either. It's messy and doesn't seem to be healing. I had to take her to the doctor to have it cauterized twice. After the second time it healed! Since then its been much easier to deal with.
Well, its now the end of January. Seven months since her first admittance. I though by this time I would have my little girl back, but we have a very long road ahead. Rylan has profound hearing loss, vision impairment, cerebral palsy, seizures, and she still has the feeding tube.
She gets PT 2 times per week, OT, vision, and hearing therapy once a week. We are waiting to hear from CHOP for the Cochlear implant. Also, she may start water therapy soon. We are even looking into Hyperbaric Chamber therapy. We are willing to do anything and everything to help Rylan grow to her greatest potential. You can never provide enough therapy and stimulation.