Two Sundays ago Nathaniel had another seizure and landed in PICU again. This time he stopped breathing all together and had to be put on a ventilator for about 4 hours. Luckily, it was while we were in the triage room. Once the sedation wore off he was extubated and stayed in PICU for 2.5 days. The nurses had difficulty finding a vein and required an IO-drilled a hole into his shin to give meds through his bone marrow. Not once but twice. All of his meds had been given via IV and therefore were very concentrated. It wasn’t till Tuesday night that all of his meds were given orally and actually woke up. Here we are almost 2 weeks later, and he is just now getting back to himself. He’s finally smiling and playing, where he had been really limp and fidgity. The last time he was hospitalized he acted the same way when released, but just a little…….and his neurologist said that it was possible he was going through withdrawls from all the sedatives and I’m 100 percent positive that is the case this time. On the upside, when he finally woke up that following Tuesday night, he was hungry! He didn’t want his bottle, he wanted FOOD! We’ve been trying to get him off of the bottle since he started feeding therapy and now, he absolutely refuses it. I’m sure it’s mostly psychological and traumatic issues from his many intubations. My poor baby 🙁 but, HE WANTS AND LOVES FOOD! I’m glad, but kinda sad because he’s becoming a big boy 🙁 He went to the pediatrician’s office today for his f/u from the hospital and the doctor asked what his prognosis was? I knew what she was asking, but she had to actually say, “What is the life expectancy of WHS children?” I know she asked that question because of his many hospitalizations, but the only answer I had was that it is uncertain and that it usually depends on other health issues. His ASD, VSD, and pulmonary stenosis seems to be improving and when he goes back in another 6 months, if things are better or the same he will be released from the cardiologist. I’ve been reading updates and I haven’t worried as much as I do now about what the future holds for him. He’s just so very small(14.1lbs), his legs are so thin, hardly have any muscle on them, and he doesn’t seem to want to use them. I know that everything he requires is being done, but I still worry that he may never be able to walk with out assistance. I feel really bad for having these thoughts and I know that if that’s what the future holds for him, we’ll do what ever it takes to meet his needs. I just want him to be able to run and jump and play with other kids……it’s sad not knowing 🙁 I know that I am not the only parent, sibling, aunt, uncle, grandmother, or grandfather that wonders or feels the same way or has the same questions. This last seizure was a huge setback for Nathaniel. I know he’ll bounce back, but I just hate that my poor baby has to go through so much. Here’s to our strong and brave little ones.
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It is sad that our little ones have so much to go through. Our DD, Mandy, who will be 18yrs. this Oct. has had setbacks throughout her life because of the seizures or other illnesses that kicked her butt. But she always came back to us and caught back up with her therapy. She is a fighter and when she entered puberty, she went 4 yrs without a seizure! When she started having them again, they were much shorter and we have even come home after an hour in the ER. Sweet Nathaniel has some tough times, but it sounds like he has a very concerned & loving parent. Concerned & loving falls short of the description of our love for these special ones. I still say I am in love with Mandy and I love our “Mandy & Mom world.”
Thank you. Is DD pretty independant or does she require assistance? I’m slowly making my way down the the many stories and haven’t really read any stories of older children with WHS. I’m just curious and kind of would like to know what to expect. I know that no two kids are the same, but at least I can prepare somewhat.
Like so many children with WHS, Nathaniel has been through a lot in his short life. We need to be thankful for a health care system that supports them through the tough times. It is easy to understand why individuals did not do as well in the past.
The life expectancy trap is a difficult to be in, and get out of. I was told Rochelle would not live to age 6, 10, teens, twenties. I learned to live in fear because I was told she’d just get an infection and die. I do not want to live in fear. I am thankful for each day of her life.
Living with WHS means living with unknowns, things we can’t control, and pleasant surprises. Rochelle didn’t walk independently until she was 10 years old. I had given up hope. I was ecstatic when she did.