tag:blogger.com,1999:blog-447392662850613354.post4957090990438009109..comments2024-02-25T10:24:30.868-05:00Comments on Special needs disability parenting BLOOM: He made itBLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-447392662850613354.post-52191130876644241962010-04-19T18:02:18.234-04:002010-04-19T18:02:18.234-04:00Thanks for writing Lisa. You will have to do a gue...Thanks for writing Lisa. You will have to do a guest blog for us sometime!BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-87085281358726814592010-04-17T21:01:00.236-04:002010-04-17T21:01:00.236-04:00Louise I was so glad to read that the surgery is o...Louise I was so glad to read that the surgery is over, but am so sorry things have not been going well since.<br /><br />I have similar issues with Julia being stressed when people are rushed. It is so hard on the family, I wish they would do better. <br /><br />LisaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-6140967286946901182010-04-15T21:54:42.987-04:002010-04-15T21:54:42.987-04:00Thanks everyone for your support. Unfortunately, B...Thanks everyone for your support. Unfortunately, Ben had a very rough 24 hours. His epidural line fell out during the night, but they didn't realize it, so he went from massive, continual pain meds to nothing. He was inconsolable and given morphine, but it didn't help. When the pain team finally came at 10 this morning he was switched to a narcotic, which worked. His catheter was taken out this morning but he was unable to pee 10 hours later, so they had to put it back in. They had problems getting it in and D'Arcy had to hold Ben down on the bed while he screamed and cried until they finally gave up after 20 minutes. We were wrecks! They sent the urologist up and he put freezing gel in and this time it went in okay. I asked why they didn't always use the freezing gel and the nurse said only 2 of every 10 patients have a problem.<br /><br />He was finally comfortable again tonight.<br /><br />He won't be coming home tomorrow and things are going to be more involved than imagined. His body cast makes it really hard to carry him -- he needs 2 people to be moved. And he also has to be repositioned frequently -- he began to get a pressure sore on his heel.<br /><br />I think yesterday was too good to be true.<br /><br />Thanks for all of your kind wishes and encouragement. They mean so much!! Hopefully tomorrow will be a better day.BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-14166135852275942022010-04-15T19:22:55.974-04:002010-04-15T19:22:55.974-04:00Wow. I agree. There should be a safe room for chil...Wow. I agree. There should be a safe room for children and parents to transition from!<br /><br />I admire Ben's strength. Children are amazing, aren't they? I think Ben may need his own laptop! LOL!<br /><br />I am very happy to read your update and to "see" Ben "on the other side", too!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-70863607594602649592010-04-15T13:09:33.497-04:002010-04-15T13:09:33.497-04:00It is disappointing that a hospital dedicated to t...It is disappointing that a hospital dedicated to the care of children and children only, would not have the step of making the child comfortable mastered! This seems like an obvious priority. When my daughter had dental surgery in a dentists office, they took more time to show her the equipment and make her aware and comfortable with what was going to happen. It sounds like Ben will handle things in stride. It is you that I am concerned about. Seeing your child in pain or discomfort is absolutely one of the hardest things to deal with. It is great that you have the support of your blog followers to give you a virtual hand to hold.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-47610282904528074142010-04-14T22:19:29.630-04:002010-04-14T22:19:29.630-04:00Thank you Ellen -- and thank you for all your tips...Thank you Ellen -- and thank you for all your tips on the spica casts. Does that mean that your daughter has her IV and is asleep before she goes into the OR? Or is she given the IV in the OR? (e.g. does she see the OR)<br /><br />Unfortunately, Ben has an aversion to IVs. However, after yesterday I think the IV would have to be preferable! It makes me think of the more than dozen times when I haven't been in the OR with him and I wonder what happened?! <br /><br />Thanks so much for your support!BLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-28552086497555483402010-04-14T21:24:46.449-04:002010-04-14T21:24:46.449-04:00I'm glad Ben came through the surgery well and...I'm glad Ben came through the surgery well and is in good spirits. The OR does sound traumatic. Our daughter always gets a choice of getting the initial anesthetic via IV or mask and she always chooses IV b/c the mask is frightening and smelly. It does sound like the OR staff was not as accommodating as they could have been. I'm sorry it was so traumatic for him and you. Best wishes to you and your son!Ellen Painter Dollarhttps://www.blogger.com/profile/04249909035254149073noreply@blogger.com