We started off the day with a tad bit of excitement. I had given Jude oral Baclofen at 3am and he had done very well throughout the night. He woke up all smiles and seemed more like himself! He was urinating again and just seemed to be pretty content.
Then all hell broke loose again. Jude had multiple attacks, his oxygen level would not stabilize, and his heart rate was out of control. It's the first time the weekend nurse has really seen what we have been dealing with each night and he actually broke down in tears. He said there is no way we don't need a nurse and that if we have been dealing with this everyday he feels so bad for Jude, us, and Charlotte. He is very upset with the doctors.
It's hard gaging if it's an actual emergency with a child in Jude's condition. I am sure other special needs parents can relate. He is pale but that could be medicine. His urine is very decreased but that could be from the attacks and he eventually ends up urinating. His heart rate and oxygen are all over the place but they eventually stabilize. He is VERY rattled (congestion) but it's mostly mechanical. He is miserable but that could be Baclofen withdrawal. It's my best educated guess and I am just always hoping I am making the right one. We are about 30 minutes out from another oral Baclofen dose and Jude is moaning and very upset. He is getting to the point that he is miserable for hours but maxed out on medications.
I know I am tired of all this so Jude has to be exhausted. I also wish that the hearing officer and doctor that has been assigned to Jude's case would actually come in our home and witness what Jude is going through. I actually believe this should be mandatory for anyone to receive or lose nursing hours. A doctor won't prescribe medication over the phone without seeing you in person so why make such an educated decision without seeing the patient in question?
Jude had a doctor appointment Tuesday. If he gets worse we will definitely take him in. Hoping he gets some relief soon. Ps. I hate Baclofen!! I know it's been great for some people but I personally cannot stand it.