New update….So much has happened since my last post. For one, Nathaniel got a temporary standing chair and he looks soooo cute! He can tolerate 30 minutes max at a time and had an evaluation with a new speech therapist. She was awesome! She introduced him to bubbles and had him playing with toys in ways that I never imagined he could. She even got him to anticipate the bubbles, and to choose the toy he wanted. I’ve had the “he can’t do this, he can’t do that” mentality because I tried once or twice and never tried again. So, now I’m giving him options. Secondly, he has begun to roll onto his stomach and wants to stay there…he actually likes it now. On the 16th he had eye surgery (both eyes) to correct his Strabismus and he did great. His eyes were red, but that was expected. Then this past weekend, we went to Port Arthur, Tx to celebrate our friends graduation (with the doctors permission of course). We left Friday afternoon and woke up early for the ceremony Saturday morning. Afterwards, we went and ate lunch and headed back to our friends house for a little R & R. It was about 6:30pm when I noticed that Nathaniel was kind of off in a trans. He was looking up at the ceiling with his mouth wide open and wouldn’t focus on anything. I was having a conversation with my friend and at the same time trying to get his attention and I could not break his stare. After about 2 minutes of this, I laid him on the table and onto his side and drool began coming out of his mouth. That’s when I realized it was a seizure. We waited 10 minutes before dialing 911. The good thing was that the hospital was right behind their house, the bad thing was that they didn’t have a clue as to what to do. First of all, they knew he was on his way and didn’t have a room ready for him-and there were plenty of rooms available. Secondly, he lay there in the hall way seizing for about 5 minutes. On top of that, the EMT was the one asking all the questions…when it should have been the nurse assigned to him. AND when they finally did put him in a room our ONE nurse was dilly-dallying, taking her sweet time in and out of the room. When the doctor did come into the room, our nurse had once again stepped out. The doctor literally said, “Where’s my nurse?” Even though she just took one step out of the room, she still had to go and look for the nurse. The doctor had to look in her had held PDR to see what to give and to check the dosages and frequency. I spoke up and told them what they usually give him and told her that the last time he had a seizure he had to be intubated. His seizure lasted about an hour and 15-20 minutes. Needless to say he did have to be intubated. Then on top of that I told them that he was a hard stick and that he usually requires a pic-line and he was poked over and over and over….even after they started an IV! On top of that, he had to be cath’d….or so they thought and they didn’t have what they needed so they used a feeding tube! I know sometimes you have to improvise, but the feeding tube was HUGE! I called his Neurologist here in Corpus and told him what was going on and that I was worried that they didn’t seem to know what to do and for him and to anticipate a call from the attending physician. They finally got the seizure to stop (after being intubated) for about 10 minutes when he started seizing again. LUCKILY, they weren’t equipped for pediatrics and said he would have to be transported to a children’s hospital and gave me the options of Houston or back here(Corpus Christi). My prefrence was here of course because all of his doctors are here. Thank God, he was able to be transported home and I got to come with him. We left the hospital and it was about 4:00am when we landed and 5:ish am when he was finally settled in his usual spot in PICU at Driscoll Children’s Hospital. He stayed in PICU till Monday morning and was moved up to the regular floor and was released this past Tuesday. When his neurologist came to see him, I apologized for calling him on a Saturday and after hours and wanting to speak to him directly. He said he spoke to the attending physician here at DCH and his story of his conversation was just as horrible and that he was glad that I called him. I told him about our experience and he was happy he was home. What had happened was that he outgrew his Depakane dosage and it needed to be adjusted….so that was done and Kepra was added. Eventually, the Kepra will be increased and the Depakane will be decreased. The plan will be to wean him off the Depakane. If anything, after he came to, he had been really fussy, which is out of the ordinary. He NEVER cries or fusses and that was all he did while he was in the hospital and was inconsolable. His neuro. doc. said it was possible that he was going through withdrawls from the sedataves. That was scary but since he’s been home, he’s been better. He fusses a little but now I’m able to soothe him. I am going to file a complaint just so that if this ever happens to any other child, they know to be on their toes. I understand that the hospital there in Port Arthur doesn’t admit children, but they should have medical equipment and supplies for children on hand, just in case. I mean, the closest children’s hospital is 45 minutes away, and no other parent should have to sit back and watch their child suffer like I did. The bad thing is that I knew what they should have been doing, and they didn’t do it AND they didn’t even have a clue as to what to do. I am really scared to take a trip anywhere now. My family and I had plans to go camping this weekend, and I am terrified. What if this happens again? I know the closest hospital to our campsite is 15 minutes away….but do they admit children? Do they have medical supplies for children on hand? If not, will he suffer again like he did? If I decide not to go, my other children suffer and miss out….it’s not fair either way. I know we all have to make sacrifices, but making the decision is the hardest. I know my other children understand, but it’s still not fair.
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How scarey for you, I don’t think I would have handeled it as calmly as it sounds like you did. I am glad that he is at home and doing better. My son, Peyton, is almost the same age and I have an appointment next week to evaluate him for speech therapy so I would interested in what they are doing with your son if you wouldn’t mind sharing details. My email address is jmdevriend@hotmail.com.
What an absolutely terrifying story, but unfortunately many hospitals don’t handle children anymore. When Rochelle was young, we rarely went a month without a trip to the ER. Now we do everything in our power to avoid hospitalization. It is interesting that this happened when travelling. I use to travel with Rochelle. It usually ended with illness. I quit travelling with her. I learned it wasn’t worth it. I wanted to believe that Rochelle could do everything others her age did. After she was diagnosed with WHS and we identified immune impairment was the cause of her frequent infections, I made an effort to protect her from sources of infection. I also learned from experience that stress brought on asthma and seizures. Children with developmental and physical disabilities do not need to have limited lifestyles, but medically fragile children do. When I started to accept that Rochelle was medically fragile, I made some changes to protect her health. It has helped. You have three other children to think of. I thought you only had two. You only mentioned two others in your first post. I don’t know how you do it. You are a super hero mom.