Thursday, August 21, 2014

GOOD NEWS and the bad news

The good news...........we are NOT being checked into the hospital!!!

The bad news ............. all the doctors finally consulted and they believe Jude had Autonomic Dysreflexia (yep I had a friend that was right just via the blog).

Now granted Jude has a high heart rate vs a slow one. However the doctor explained that Jude has neurological conditions that can respond differently. We also haven't noticed a blood pressure spike, but I bet we would if we monitored the pressure DURING an attack, which we have not done. So they are putting him on a new medication. If the medication does NOT work then we will be admitted. Obviously, we will want Jude monitored very closely as this condition can be serious.

To think I still have to fight for his nurses next Wednesday and prove medical necessity. Picture me rolling me eyes like a teenager.

Trying to find the Rainbow

Jude had another hard night. He was so toned out that I had to give him Valium again, but it took a long time to kick in . He was just miserable. He vomited and it just wasn't a pleasant scene.

Mike and I finally went to sleep about midnight and I heard Jude gasping about 3am. I ran in there thinking he vomited but he was just toned out again. He was so hyperextended that his head was leaned all the way back into his pillow. So I adjusted him and went to lay back down. Only to have him vomit and I ran in there to clean him up. This was a repetitive process throughout the morning. So when my alarm went off I literally just laid there and cried. I felt sorry for Jude and I was just exhausted.

I know I have complained that we are all tired before but I have always said I would be perfectly honest in my blog. This is finally really taking a toll on us. It's affecting our work, it's affecting our marriage, and it's affecting our health. I cannot imagine what parents go through who have children in the hospital for years at a time.

So today as I finally got out the door all be it late, but I got out. I just felt down and discouraged. So I went to turn on the radio and I am not even kidding that the Muppets "Rainbow Connection" was playing. I literally burst out crying and laughing at the same time. So to whichever deceased family member decided to play that childhood song, thanks for the smiles. Since I was singnig at the top of my lungs I am sure I entertained my fellow drivers on the road.

Jude and I check in through ER tonight. It was take a few hours for them to get us to a room. I will post tomorrow after we see the neurologist.

Wednesday, August 20, 2014


Jude will be checked back into the hospital on Thursday night after we get off work. They are going to run a battery of tests to try to figure out what's going on. I will post more this weekend once we get him admitted.

Ps. Amber you have been a big worries :)

Tuesday, August 19, 2014

Jude's tone, the great doctor, and the ultimate check in

Jude had a good day with his nurse but a not so great night with mom. He was asleep in his wheelchair when I got home and he woke up about 7pm. By 7:15pm Jude was in a full toned out attack. I gave him Valium and then took a video for the doctors. This is how miserable he is. Imagine your whole body locked into place.

Jude really didn't seem to fully recover this time. His heart rate was good, his oxygen was decent, but his tone never truly recovered. That can be difficult to explain to a medical professional. " Hey I know your fancy equipment shows Jude is normal, but I am pretty sure his perfect ballet pointe of his toe would suggest otherwise". Our adorable neighbor said Jude had "great form".

Around 9pm Jude went into a full toned out mode again.......but with the help of our neighbor we could get him to laugh. So we gave him his Clauzepam (klonnopin) a bit early. After all that medication I was worried about giving another dose of oral Baclofen. I will check with the doctor if the mixture of medication so close together is okay.

Sometimes people question the purpose of my blog. I do this for therapy, to let others know about our journey who may be embarking down the same path, and so I can learn. Sometimes I get advice I shouldn't, but sometimes I get great advice. A blogger friend with a daughter similar to Jude has given some great advice that I have actually taken to Jude's doctors. It may not seem like I listen to comments on here, but I promise I do. In fact today my husband acknowledged that the one person that seemed to be spot on was her. So with her advice we will be having specific testing this weekend.

I did hear from Jude's primary neurologist in Dallas and GOD I LOVE THAT DOCTOR! He is fabulous. Our conversation went like this....

Me: Hello
Dr: Hey this is Dr -----
Me: Hi How are you?
Dr: Eh I have been better. It's been a crazy day. I am pretty sure everyone is going to hell in a hand basket I have three admits and well it's been a bad day. So do I need to check in Jude too (LOVE he has humor)
Me: Funny you should seems that is where Jude is heading
Dr: Oh Lord. Ok what's going on
I explain
Dr: I think you have some good leads here. This is either neurological which I doubt since the tone situation you are mentioning can be lengthy or we have the situation your other doctor suggested. I know your situation at work and I know it's important to try to do things on the weekend. I would suggest you check into Cook's like they suggested. If they don't find anything then you come here on a Saturday. I will make the time to fit Jude in to figure out if this is new seizure activity. We will figure this out but I understand this is NOT Jude.
I thanked him for listening to me and caring.
Dr: I just cannot do it on 9/5 because these people found an infected tooth and I need oral surgery.....can you believe I have time....

I love the fact that this man is HUMAN! He kids around with us and he seems to truly care for Jude.

So it looks like we will probably check Jude in Thursday night. In addition to the prior issues I was having Jude threw up three times when I put him to bed. Poor little guy puked through his smiles and just looked completely innocent. I just changed his shirt again, hugged him, and tucked him in.  

Now comes the part of telling my boss I need Friday off..............

To go back to the hospital or not go back..........that is the question.

So the neurologist called and basically they want to admit Jude. His nurse said that one of the diagnosis they are focusing on is Postural orthostatic tachycardia syndrome .

They want us to either go in to clinics on Thursday and admit Jude through there or go through ER. Then he will have a host of tests done. We aren't sure we want to do this yet. So I am going to go home and we will talk about the best course of action. I do have a call into Jude's other neurologist at Dallas Medical City to see what he thinks.

So I MAY be looking for someone to sit with Emily and Jude Friday at Cook's. We will see. Emily also has a plethora of appointments on Saturday that I may be calling her dad in to help me with. Should be interesting making the poor guy sit through a hair and eyelash appointment........he might want to claw my eyes out after.

Patient Advocacy

Jude's cardiologist nurse called this morning. They said they tracked 5 sinus tachycardia episodes this past weekend. There is still nothing showing it's anymore than a very fast heart rate. I explained to her what happened last night and she was SO nice. She said she would be beyond frustrated and at this point she thinks I should involve patient advocacy. She said if this was her son she would have gotten angry awhile ago. I told her I understand there is nothing wrong structurally with Jude's heart, but I worry about damage occurring due to the frequent attacks. She completely agreed.

So I put a call into the advocacy office. I don't want anyone to feel I "tattled" on them, but I also want whats best for Jude. If this is truly a therapeutic dose issue then what level are we trying to obtain? When do we say we surpassed the dosage and we now move on to explore other issues?

So we will see what happens. I called advocacy about an hour ago and at first she seemed very short. She then asked me to explain what happened and once I told her the whole story she got very very nice. She said she was going to meet with all the doctors and decide a plan of action. Then she will call me back.

I do believe the doctors are doing their best. I think it may be a problem with to many hands in the pot and no one has the right spoon.

Monday, August 18, 2014

Insert multiple curse words

Jude had a terrible "episode" again tonight. He was red faced, toned out, breathing heavy, very high heart rate, and just not well. For the first time I saw Mike get very angry and I was ashamed that I felt a bit vindicated. I feel like I keep screaming that things are not right. I know he is so very concerned about Jude too, but I just felt like we completely related to the episode and that we were on the same level.  

Mike said he felt like if he had been properly informed about the possible side effects we never would have proceeded with this pump. Something is NOT right. Jude cannot keep up at this pace I know that the specialists believe that as long as Jude's heart rate and oxygen level recover then he is heading in the right direction. Well NO shit Sherlock (excuse the cursing) aren't we all heading in the right direction if our heart rate and oxygen levels stay in the appropriate ranges. I mean it only constitutes an emergency if the levels continue to decrease.......correct? If they don't increase then we call 911 and they admit there was an issue.

So do we continue on this level hoping that we find the therapeutic dose of Baclofen or do we finally admit that we have far exceeded the level of Artane he had and there is a legitimate issue. I know that this mom has about reached her limit. I tend to fly off the handle sometimes so I am reeling myself back in before making any sudden movements.

Jude has had his SECOND dose of Valium today. I won't mention the oral Baclofen he had. He is finally resting and we will soon put him to bed with additional sedatives.

I don't want Jude living off sedatives. I really just want our life back. Sometimes I wonder about what we said at the beginning of our journey so many years ago. Sometimes we so want our children normal that we make decisions without thinking of the consequences.. Did we try to reach a pain free level at an ultimate cost? I feel mike we are far exceeding Jude's normal "bad" days. 

Ps. He just threw up