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August 22, 2002
[[Since it appears I am writing the intro that never ends, I am combining two entries so we can get to this year. Finally!]]
October 2001
We made it to our appointment with the preschool program director on the last Friday in September. I bundled Jaida up and off we went. I was prepared to sit thru at least an hour of testing. *Sherry came down the hall and sat next to us. She had Jaida’s file in her hand. She said she had made a mistake and that further testing was not necessary. She handed me a bunch of forms to sign to schedule the IEP (Individual Education Plan) meeting and we were free to go. I took Jaida home and I went back to work.
October was full of appointments. Jaida saw Dr. Corbier again as well as Dr. Ogunbi and Jarod had his 6 month checkup all in the first week. Again, Dr. Michelle was not there but I was comfortable seeing Jill, the CRNP instead. The next week we took Jarod back to Birmingham for his upper GI. He would not drink the barium so they put a tube in his nose and filled his stomach with it that way. We saw Dr. Cavendar and he agreed it was time to try and wean Jarod off his meds. The following week was Jaida’s MRI. She had to be sedated and that was the worst part of the whole test. She fought the sedative and it took her over an hour to fall asleep. The test itself took about 15 minutes. We were still battling ear infections with her and we went back to see Dr. Michelle. I had gotten some paperwork from her in the mail with a different address and phone number. It seemed redundant and I was a little confused, but I filled it out and took it with us to the office. The receptionist looked puzzled when I gave it to her and we sat down to wait.
The CEO of the practice came out and called me back to his office. He explained that Dr. Michelle had left to start her own practice. Apparently, she had been mailing chart forms to old patients without any explanation. I guess she hoped we would all just show up at her new office. He said we were welcome to stay and he hoped we would but we were free to go to her if we wanted. I told him I was leaning towards staying after he said they were getting a new pediatrician to take over for her. He said we could see one of the nurse practitioners and keep our scheduled appointment for the day. We saw Stacey this time and she looked in Jaida’s ears. They were both infected and we got our prescription for Augmentin since it usually did the trick. Stacey said we might need to consider seeing an ear, nose and throat doctor to discuss tubes. Either way, we had to wait until her ears were clear to make the appointment. We scheduled a follow up to have her ears rechecked in two weeks. I took Jarod to see his dermatologist a few days later and looked forward to November and the holidays.
November 2001
We celebrated Steve’s 31st birthday and just enjoyed being a family of four. When we went back to have Jaida’s ears rechecked, they were still not clear. We did another round of antibiotics. It looked as though November would be a quiet month. Then one morning Jarod woke up with this strange cough. He sounded like a seal choking on something. I gave him a few breathing treatments but as time went by he sounded worse. I decided to take him to the ER. I wanted him to go the same hospital where Jaida had been, and I hoped to get Nurse Diane again.
When the ER doctor listened to his chest, he immediately called for respiratory therapy. I guessed by his posture, tone of voice and the way he gave orders that he had served in the military at some point. After four treatments with all sorts of adult medications he was only slightly better. The doctor said he was afraid to send us home so we prepared to go upstairs to the pediatric unit. I called Steve to let him know we would not be coming home. They came in and started an IV. I cried right along with Jarod while I helped hold him down. A nurse came to escort us to our room. It was two doors down from Jaida’s old room. I was settling into bed with Jarod while he fell asleep and in walked Nurse Diane! I was so happy to see her. She stopped in her tracks, put her hands on her hips and pursed her lips. Her eyes wrinkled into a smile as she recognized me. She asked our escort if this was “my baby from the ER” while she examined Jarod’s IV apparatus. She shook her head and clucked her tongue as she tried to tape up the line properly. “All they did was get this in,” she moaned. She went off to find a board to secure his arm and our escort wished us luck as she left. I felt better instantly.
Diane came back with the board and got to work. She had always made me feel so safe. We chatted and she said, “So, how long were you out before you had to turn around and come back?” I said about two months. She chuckled and asked when Jarod had been there last. I reminded her that it was Jaida she had taken care of last time. “That’s right,” she said with a nod. We went thru all the questions the hospital required her to ask. I laughed again about the, “do you have running water and indoor plumbing” question. She said some people still answer no to that one every now and then. That killed my humor quickly. She said she would try to get me some food since it was now 2:30 and we had been there since 7:00 AM. She also told me to get Jarod into the oxygen tent that was sputtering away in the corner. He was out cold so he barely noticed when I put him and zipped up the side. I tried to sleep while Jarod napped and I dropped off before I had time to think about it.
I awoke to a nurse bringing me a lunch tray. I looked at the clock and realized I had only slept for 30 minutes. I ate quietly although the oxygen tent basically drowned out all other noise in the room. I called Steve and gave him our room number and an update on Jarod. We couldn’t believe we were about to go through this again. I admit it was slightly easier this time since I was with Jarod and Steve could take care of Jaida with my mom’s help. I still felt really lonely. I was sure someone from our pediatric practice would come by or call. Imagine my shock when we were turned over to the attending doctor on call. I wondered why Dr. Ogunbi was not coming. I made the best of the situation and prayed that Jarod would recover quickly. I got into the tent with him a lot to keep him happy and the highlight of my stay was meal time. This hospital had the best food I had ever tasted in a medical institution. I always made a happy plate!
To say that I did not care for the doctor we were assigned to was an understatement. I found him to be arrogant and patronizing. He offended me the first time we met by asking if large heads ran in our family. I also felt he was a little distracted. He told me we could get rid of the oxygen tent but the nurse (not Diane) said he didn’t put it in his orders. Jarod was teething but they said he couldn’t have Tylenol without an order for it. I had Steve bring me some from home. Finally, on Tuesday night the respiratory lady came to take the tent down. It took 10 minutes to adjust to the deafening silence after hearing the tent noise for so long. The night shift nurse, Cheryl, came in and checked his vitals. She made a comment about his IV looking infiltrated. I told her that the doctor had ordered an RSV smear but we didn’t have any results yet. She finished up her work and left to find the lab results and call the doctor. Imagine my surprise when she came back and asked if we wanted to go home. Are you kidding!? I packed like the place was on fire. She was nice enough to sit with Jarod while I went to load the car and pull up to the front entrance. We made it home by 9:45 PM and I was grateful beyond words to be out of that place. Thanksgiving was a week away and our family would spend it together.
December 2001
We seemed to be having a stroke of luck in December. We enjoyed the holidays and a good time. Nobody was seriously ill or hospitalized. Jaida’s ears continued to give her trouble and we had two more rounds of antibiotics. The nurse practitioners and I agreed that it was time for an ENT referral. We saw Dr. Evans on the 28th and scheduled her tube surgery for January 3rd. Jarod had his 9 month checkup and all was well. His weight was still lower than they liked but he had no interest in anything other than nursing.
We saw Dr. Corbier and had the EEG done on the 26th. When it was over, Martha, the EEG nurse asked us to wait while she got Dr. Corbier. They looked at the brainwave pattern together and he thanked her for calling him in. I almost fell off my chair when Dr. Corbier said he felt that Jaida needed medicine to control the seizure activity in her brain. I asked lots of questions and he answered them all in his patient manner. He assured me that regualar blood work for monitoring was not necessary on this type of medication. I left in a dazed state with a prescription for a drug called Topamax. We were instructed to start with one capsule sprinkled over some soft food before bedtime. After a week, we were to go up to morning and evening. I was nervous but I trusted Dr. Corbier. We all had two weeks off for the holidays so I figured it was the perfect time to let her adjust to the medication.
January 2002
Jaida’s tube surgery was very scary. That morning, we got snow for the first time since 1993. It was still hard to explain things to Jaida, so we told her we were going to the doctor. The nurses and techs at the surgical center were very nice. After Jaida changed into a gown they gave her all sorts of stickers and goodies. She was very happy about that. They gave her an oral dose of something called Vercet and she was loopy in fifteen minutes. When they came to get her with the gurney, she only got upset when she had to leave her beloved stickers behind. Steve and I went to the waiting room and found his mom and dad. Soon Steve’s grandmother showed up as well. We only talked for 20 minutes and then Dr. Evans came out to give us the report. He said they had drained the “iced tea” colored fluid from both ears, inserted the tubes and she was in recovery. When we went back, she was lying on the gurney looking sleepy with bloody cotton in both ears. The nurse was explaining that the sedative made most kids fussy and she thought Jaida would be okay since she wasn’t crying yet. She spoke too soon. Jaida opened her mouth and let out a wail. We dressed her quickly and she wailed off and on all the way home. By early afternoon she was pretty much back to normal.
At first, the only side effect of Jaida’s seizure medicine was sleepiness. Then after we went up to twice a day, the problems began. Jaida was always wired for the first part of the morning and her teachers came to relish nap time. She would take her pants down in public places. Once, in Wal-mart I turned around and saw her naked butt. She was staring off into space and absentmindedly scratching herself. I called Dr. Corbier’s nurse the next day. Her teachers and I had put up with enough already. He said we could go back to once a day on her medicine. All of us were much better after that.
Jarod saw a pulmonologist that travels from Children’s Hospital in Birmingham to our city twice a month. Dr. Grad changed his medicine and prescribed a nose spray for his allergies. Because Jarod was so underweight and still had reflux he ordered a sweat test for Cystic Fibrosis. It’s rare in black people but there is always a chance. A week later, I got a letter saying the sweat test was scheduled in Birmingham for March 18th.
February 2002
After a lot of thought I switched pediatricians again. Truthfully we really didn’t have a pediatrician. The new doctor that was supposed to take over for Dr. Michelle never came. Another broken promise. We saw the nurse practitioners for everything. While I trusted Jill and Stacey and thought the world of them, we needed somebody on call. I had spent too many weekends waiting for their backup practice to call. I was nervous about what would happen if one of the kids had to be hospitalized again. In the end, I decided on Dr. Jeffrey Simon and his three partners. I found him in the knick of time.
Jaida brought home every viral illness known to man this month. I jokingly referred to her as "Typhoid Mary". There was a fever virus that sapped her strength and caused fevers in upwards of 104o and severe aches. She passed it on to Jarod and he was sick for a week. Then there was another virus that caused vomiting that racked them both. I thought Jarod had missed it until one Saturday at my niece’s birthday party. We were at a place called Fun Zone. The party guests were playing in the ball pit while Jarod and I watched. Without warning, he threw up and soiled his entire outfit. I called Jaida from the balls and we went home. I thought he was okay and we went to a 74th birthday party for Steve’s grandmother the next day.
As the week wore on, he grew weaker and sicker. I took him to the doctor and they gave him a shot for the vomiting. Dr. Simon said it would make him sleepy and that maybe the rest would help him bounce back. The only troubling thing was Jarod’s refusal to nurse. I was worried about dehydration but they said he was wetting enough diapers and his eyes and mouth were still moist. The weekend was worse and he stopped babbling. He threw up a lot and nursed very little. On Monday I took him back to Dr. Simon. They drew blood and looked him over. Dr. Simon said he didn’t look sick enough to be in the hospital and he felt home would be a better place for him to get well. His white cell count was high enough to suggest a virus. I took Jarod home and cleaned up puke for the next 8 hours until he started to vomit bile. I paged the doctor on call for our practice and he said to give Jarod Pedialyte and watch him closely. By Wednesday, he was no better. He barely slept and had stopped nursing cold turkey. I offered him the Pedialyte when I thought he was thirsty. I made an appointment and I was determined to get an answer.
Dr. Simon listened to Jarod’s chest and had the nurse come in and start a breathing treatment. He asked what medicine we had been using at home. When the treatment was done he listened to Jarod’s chest again. He had the nurse start a second treatment. While it was nebulizing, we talked about the past days events. Dr. Simon said he felt that Jarod needed to be admitted. I was so relieved, but Dr. Simon was crushed. He really hated to put children in the hospital. I didn't care. I was just gald they were taking this burden off me and doctors and nurses could treat him in a controlled setting. We finished the second treatment and went straight to the hospital. I called my mom and she cried when I told her where we were heading. She had been caring for Jarod while I was at work those two weeks and she was very worried about him.
We were at a different hospital this time and I was not happy about it. Dr. Simon usually sent all his patients to BS and I hadn’t made a request for my favorite one. The nurses at BS were not as well trained as the ones we had encountered at J. They took Jarod to do his IV and when they came back, I could see the pump alarm would be going off frequently. Jarod is allergic to silk tape so they had to use a less adhesive variety and they had not secured the board properly. Instead of using a longer board, they had stopped at his elbow. Almost every time he moved his arm, the IV pump alarm would go off. Respiratory came every hour to do treatments and Jarod was too weak to care. He still would not nurse. I was about to call Steve when the nurse came in and said his RSV smear was positive. She said they would have to quarantine us until we left. They put a sign on the door and I started to feel like we had the plague. The dietetic staff would not bring my food into the room. They would leave it on a cart outside and knock on the door. I can't say I blame them. The sign didn't say what Jarod had. I am sure they thought it was AIDS. The nursing staff had to wear gloves when they came in. They put a stethoscope just for Jarod in the room so they wouldn’t contaminate anybody else. I took the opportunity to see what they heard and I taught myself to use it when there was nothing else to do.
I asked for a breast pump kit from maternity. When it came, I expressed about five ounces from each side. I hadn't nursed in almost two days and my supply was steadily drying up. I was lucky and we got a room right across the hall from the snack bar. I took the labeled bottles of milk to the refrigerator. That first night was very lonely. Once Jarod had a good nap he would not sleep in the oxygen tent anymore. This crib was not made to hold parents, so I had to stand beside the bed and comfort him. The nursing strike continued. I fed Jarod expressed milk from a bottle and he seemed to be perking up by Thursday night. It hurt me deep into my soul when my baby boy wouldn't even smile. On Friday, Jarod turned 11 months and that morning we were released. Since there is no cure for RSV, Dr. Simon said we could continue the treatments at home every four hours. They had done all they could do for him. I packed up our stuff and off we went. I was hoping we would get a break for a while and everybody would stay well. Lord knows we were due for one.
Kim, Jaida & Jarod
---------------Talk To Me------------------
Does your child's condition suppress their immune system?
How do you handle it when a sibling is sick?
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