Monthly Archives: July 2011
|July 14, 2011||Posted by Laura under E, Early Intervention, Siblings|
It’s been almost two months since I last wrote about Our Story and I realized I’ve been putting it off. Writing is very therapeutic for me but this next part involves pretty much the worst experience of my entire life and it is very difficult to relive it.
E was assessed in early December. Due to the holidays, we didn’t hear back from Early Intervention until the middle of January. E qualified for two hours of speech therapy each week. They also wanted us to make an appointment to have her evaluated by an O.T. that specialized in feeding issues. I dutifully called the number of the speech clinic we were referred to. E was 19 months old at the time. The only time they had available was 1:00 in the afternoon. Are you kidding me, I told them. That’s her nap time. I was told that they could put us on a waiting list until something else opened up. We went on the waiting list. (If something like this happens to you, call and ask to be referred to another provider. I wish I had done that but I didn’t want to rock the boat.) After a week, they called and had something available at 1:30. Frustrated, I told myself I could get her to take her nap at 11:30 and she’d be okay so I agreed. The day before her first session, the receptionist called because they’d made a mistake and that spot wouldn’t be available until the end of the month. We were now talking the end of February. We had plans to go on a ten day family vacation earlier in the month so I figured we’d be gone anyway. We were set to begin therapy went we got home from our trip.
We headed with my parents to a house that had originally been owned by my grandparents. Right before we left, I took both girls to the pediatrician. Both of them had ear infections which was par for the course back then. We left for our two day car trip with both girls on Amoxicillan. Two days into our trip and after four days on her medication, E did not seem to be getting any better. We visited the local urgent care and E was switched to something stronger – Augmentin. Pretty much immediately, E started having diarrhea which can be a side effect of that medication. She didn’t seem to be in too bad of shape and were able to continue on and have a good time. The day before we were to leave, E started vomiting. I was worried about her becoming dehydrated so we took her to the local hospital. To be honest, I’ve blocked out so much of this that I don’t remember if they gave her an IV or not but the doctor just thought she had a bug, even though she was taking the Augmentin. He told us to finish the medication and that we were okay to make the two day drive home.
We took a picture the morning that we left. E was passed out in my arms. In retrospect, we should have immediately taken her back to the emergency room but we started on our trip. The vomiting had stopped and she seemed to be doing better – just tired. We drove about seven hours that day. E slept most of the time which was actually extremely convenient on the road. We stopped for dinner at a McDonald’s off the freeway in the middle of nowhere. We couldn’t wake her up to eat. She felt extremely hot. We drove to a Walmart on the other side of the freeway and bought an ear thermometer. When I got back out to the car, I took her temperature and it was over 104. Frantic, I ran back into the store and asked where the nearest hospital was located. The nearest big hospital was an hour away but there was a small local hospital that was on the other side of the freeway. Right then we made the fateful decision to got to the nearest hospital and not drive to the big city.
We had both kids and two dogs with us. My parents were about an hour ahead of us with their dog. We called them, told them what was going on, and they turned around and headed back to us. Once in the Emergency Room, we found E was the only patient. There was one doctor on call. The nurses called in a paramedic to put in an IV for her because they didn’t have enough experience to try doing it to a child. We were admitted but the hospital did not have a pediatrician on staff. There was one pediatrician who worked at several hospitals and she would be in on Monday. It was Friday night.
My parents rented a motel room nearby and took all three dogs with them. S stayed with them. My husband stayed with us in the hospital and slept in the motel room at night. I didn’t leave E’s side for three days. They brought in a crib but I slept with her in bed with me. She had the IV but would not eat or drink anything. She would nurse, however, and so I nursed her whenever she wanted. One twelve hour period over the weekend we had a male nurse who thought she would be drinking water rather than nursing. He kept checking on us every hour to make sure I was giving her water, which she wouldn’t take, rather than nursing her. He was an idiot.
We were there all weekend and still had not seen a pediatrician. She had blood draws twice a day and was not dehydrated because of the IV. I was an absolute mess and missed S like crazy. They let her come visit in the hospital but there wasn’t anything for her to do and so she didn’t want to be there. I was torn between my two children. This whole experience was literally the worst of my life.
Monday morning the pediatrician finally came in and saw E. She said that she wanted E to eat and we could try anything, french fries, ice cream, whatever it took. Unfortunately, these people did not truly understand how limited E’s diet was at that point – remember the referral for a feeding evaluation? We got E to eat a little and she seemed to have turned the corner. The pediatrician saw us again in the afternoon and we were hopeful to maybe be released on Tuesday morning.
Tuesday morning came and the male nurse was working again. E had her morning blood draw (hopefully the last one) and we were starting to pack up when the nurse came back in. How were the blood test results we asked. They were checking her potassium levels. He sat down and told us that he wasn’t supposed to tell us this but that E’s potassium levels were dangerously, dangerously low. This hospital was not equipped to deal with this and if she was his child he would request a MedEvac flight to the nearest Children’s Hospital which was two hours away by car. I was pretty nearly hysterical. My husband, thinking clearly, told him to make the arrangements for the flight. He called his parents, my in-laws, and told them to get on the first flight they could find to come help us. We needed to board the dogs somewhere. We needed to find a motel near the new hospital. I was going to go on the helicopter with her and he would follow with S in our car . . . .
As we were packing, the Chief of Staff of the hospital came into our room. We were in panic mode and he was mortified. The male nurse had interrupted him while he was taking a shower to have him sign of on the MedEvac flight. The doctor looked at the paperwork and had a fit. The nurse (who should not have been discussing medical test results with us in the first place) had compared E’s potassium levels to those of an adult. Her levels in an adult could be fatal. In a child, they were simply low. E was going to be fine.
My husband called his parents and told them to stay where they were but to arrange a flight for later that afternoon for myself, S, and E. We didn’t want to make the nine hour drive home. The pediatrician came back in, terribly embarrassed and apologetic about the nurse’s actions, and released E from the hospital.
We made the hour drive to the airport and the girls and I got on a plane headed home. The hour flight, my first with both kids in tow, involved changing a diarrhea diaper in one of the little bathrooms and S throwing up in a bag because of nerves. But after only one more hour we were home. My in-laws picked us up from the airport and drove us home. The next day we took E to our own pediatrician and had her checked out. Within a few more days she was back to her old self but about five pounds lighter.
I still have the message my husband left for me on my cell phone as we were taking off in the plane. The joy in his voice is so palpable. To go from absolute agony to complete joy in the matter of an hour is something that I don’t wish on anyone. However, his message, his joy, is something I don’t ever want to forget.
Needless to say, once home, speech therapy was the last thing on our minds.
|July 14, 2011||Posted by Laura under Apraxia Awareness, Diagnosis, E, Early Intervention, Treatment|
It’s a verb. It’s a noun. It’s you if you have a child with a speech disorder. I just read a post on another parent’s blog that literally brought me to tears. Her child is suspected of having CAS but is too young to be diagnosed yet. Due to this mom’s persistence, he is going to be treated is speech therapy like he has CAS! Her words spoke to me because I know exactly how she feels. Moreover, I am so impressed with her. I wish I had been able to get a speech therapist to treat E as though she had CAS even before she was diagnosed with it. Way to go Mommy!