Wednesday, October 22, 2014

Jude's attacks, tone, and more

When I got home last night Jude once again had a terrible tone attack. After wrestling with him on the couch I decided to put him in his wheelchair. This seems to be the only thing that helps break the tone. As you can see he was pretty stressed when we put him in the chair. You can also hear the issues we have had with the mechanical congestion.



Jude spent two hours in the wheelchair. I miss holding him but he pushes his head back so hard into your arm that you can feel it the next day. Since I couldn't hold him I just held his hand.


I also gave him a dose of Valium to break his tone and calm him down. Eventually he became more calm and happy again.

 


I also believe he is having new seizure activity with these tone issues. He seems to hold his breathe for a few seconds and then recovers with a laugh. Classic Jude seizure activity in my opinion. I have put several calls into the neurologist but I have not heard back yet. I really don't think there is much they can do other than medicate him more. I think this is just a lasting effect from the surgery. Something happened whether it was from anesthesia or recovery. He slept a little better last night.

I still worry about taking Jude with us to Houston next month. I am not sure it's the best idea, but Mike pointed out Jude would be sedated at night when we drove there. I know it's a quick trip and probably not worth the worry, but I am still mulling it all over in my head. If Jude stays home we would have to bring someone in for several nights and could someone else truly care for him in this state other than his nurses. If we take him with us will he be okay in the hotel and on the drive back home. I think he would, but the drive still bothers me. If he had a difficult time it would be miserable for him and for us. I guess I have 30 days to figure it out.

Tuesday, October 21, 2014

Holy crappy night Batman!

When I got home from work last night Jude was sleeping. This isn't that unusual but it is unusual he slept until around 8pm. My thought process is that Jude wasn't feeling very well and needed some extra sleep. Generally this doesn't affect how he sleeps throughout the night since he is sedated. He looked so cute while he was napping that I would stop and gently kiss his forehead. When he finally woke up he immediately started toning out and by 10pm he was uncontrollable. His face was bright read, he was hyper extended as far back as he could be, his heart rate was through the roof. I gave him his sedative to put him to bed but it did nothing. Then he started screaming in pain so we gave him Motrin. Finally we gave him Valium. He had all this and NOTHING. Nothing made an impact. He then started getting horrible mechanical obstructions and the congestion was so bad I added yet another medication with Bendryl. Then I worked at rubbing the obstruction up and getting it out. Finally he calmed down and he laid there in the dark quietly. So we went to bed.

About 12:15 Jude started screaming again so we dashed into his bedroom. We turned him from side to side to side and he finally calmed down. So we went back to bed and I slept for what felt an eternity when he cried again and it was.......................12:44 (argh). This went on for hours and I finally just picked Jude up and took him to his futon on the living room. I positioned his Boppy's all around him and put him in a position he likes to sleep in. He laughed a bit and I grabbed a spot on the couch. We both slept for about two hours and then it all started all over again.

Halfway through the night I heard Emily shut her door, the dog sigh, and Mike groan. Poor Jude just seemed to hurt all over and I am super tired at work. I just want to go home and sleep. Not sure what is going on with him. My guess is this is just a part of life after surgery but it is one of the worst nights we have seen with him.

Sometimes I think about living in a tiny house somewhere so I can care for Jude at night and sleep during the day. I could be nocturnal! Anyway, I am hoping he has an okay day. I hate seeing him scream in pain.


Friday, October 17, 2014

Jude

Jude is still having terrible attacks. I am not sure what's going on. Like I stated before I think this is just his new normal. He cycles through having a normal week and then going into these terrible weeks.

I put a call into his neurologist to see what they suggest. It's just no way to live and I feel really bad for him.


Wednesday, October 15, 2014

A kinda grumpy post with a good follow up

Before I write this I want everyone to know I am not being negative, I am grateful for my life, grateful for Jude's life, and I know it could be worse. With that being said I am once again being honest and forthcoming on my blog.

It's been an extremely busy week at my work. I am working as hard as I can up until the very last minute. Yesterday after an exhausting day I returned home to Mike extremely frustrated that Jude was having another attack. Jude was very toned out, red faced, sweating, and very uncomfortable. When Jude gets like that you can barely hold him, he is stiff as a board, his heart rate sky rockets, and you are desperate to help him. Mike was at his wits end and I completely got it. He said that the doctors just have to do something. This was caused and started when they put the Baclofen pump in. Since we turned the Baclofen off we are down to 1-2 attacks a day, but it's still not the same. Jude is not the same. Mike said "I cannot even enjoy the good parts of Jude anymore I feel like they robbed me of that". I 100% understood. However Mike was so agitated that we eventually got into a full blown screaming argument. It's what happens people. When you are stressed to the max you turn on the people you trust the most. You say hateful things you don't mean and you start the cycle over again. So Mike walked away and I steamed for a few minutes. Then I realized...........this isn't his fault, this isn't Jude's fault, and this isn't my fault. This is just our life and there is no reason any of us should be angry with each other. Mike said "I am tired of working all day to never sleep at night and to struggle in the evening with Jude's attacks". I get it! I totally get it.

We are exhausted. Mike and I haven't had time away alone for longer than a night (which I think have been 2 and we are grateful for those) since 2010. It takes a toll. We were looking at getting Jude a sitter while we went to Emily's competition over Thanksgiving weekend so we can recharge and restore but that in itself is stressful. Jude's apnea is terrible at night, his attacks are bad in the evening, and if it's stressful for us it would be really hard for someone who is not his parent. We would probably spend the entire time worried about Jude and worried about the person caring for him.

So let's go back to Jude's attack. I drew up 5 ml's of Valium and administered it to him. I then moved Jude to his wheelchair to help break his tone. This gave me enough time to fix dinner and then I had to get Jude out and hold him. He smiled as I kissed his Elvis hair that needs to be cut very badly. I had to reposition him several times in my lap but I was able to control him for the most part. Jude's cough is also back. I am not sure if it's weather, allergies, a new illness, or just the new norm?

So we will get through he workday, go home to his attack, and laugh in bed with the dogs. You have to find time to laugh.



Monday, October 13, 2014

Jude's quick update

Jude is doing well for the most part. He still has his cough and he is still having some attacks. Mike mentioned that this is probably just Jude's new normal. So we have adjusted to that.

We have to decide if we are taking Jude and his nurse to Houston this year to watch Emily compete. We are going to wait and see how his health is but I worry about the drive. He coughs a lot sitting up consistently so we will see what happens. We have another month before we really have to decide.

I just wanted to give a quick little update.

Thursday, October 9, 2014

I cannot believe my daughter will be sixteen

Sunday is Emily's sweet sixteen.

I remember when I found out I was pregnant.

I remember when they said Emily may have downs.

I remember when she broke my rib from kicking me so hard.

I have loved her from the start no matter what and always will.

Emily was two weeks overdue and when I finally went into early labor and she took her sweet time getting here. On Monday 10/11/1998 at 4:30pm she finally made her appearance. She had thick black curly hair, big blue eyes, and little chubby rolls. Over the years her hair turned blond, her big bright eyes stayed blue, and the chubbiness all melted away. I have enjoyed watching Emily grow up and I am so proud of the young lady she has become.

Although we get along so well we are actually pretty different. Emily is phenomenal at math and is very good at her studies and that's something I failed at. She doesn't like to go to parties and would prefer a quiet night at home with friends. When I was a teen my philosophy seemed to be the louder the better.  Emily set a goal of becoming Miss Texas Teen USA someday and works harder for it than I ever could have. She dedicates herself to working out three times a week among other lessons and activities. At her age I don't think I would have worked so hard for a goal.  I also know I wouldn't have had her positive attitude to keep trying and marching forward.  

Emily has her faults but in my book they are minuscule. I wanted to raise a thoughtful and kind little girl. One that didn't see race, sexual preference, religious preference, or let anything else stand in the way of having the opportunity of getting to know another remarkable individual. One that didn't judge a situation without knowing all the facts. I wanted to raise a daughter that handled any situation with dignity and grace. I think I was incredibly lucky because that's exactly who I feel Emily is.

We joke how she is an adorable quirky and nerdy girl and I think that's awesome. She walks to her own beat and isn't ever afraid to speak up. Sometimes I see people pass her by versus getting to know her and I feel sorry for them. I feel for them for missing out on such an amazing person. If you take a second to talk to the shy pretty blond she will light up the room.

 I cannot believe time is so fleeting. I get choked up because I know in two years she will be leaving for college. I get teary because I know I will miss her but also because I am so proud.
I hope you have the best birthday weekend Emily! It's been an honor raising you and watching you grow into such an amazing person. Happy 16th.






Wednesday, October 8, 2014

The bloodwork and the nursing

Jude's lab work came back clear! The doctor believes the brusing is medication induced. Jude had more bruising on his arms yesterday and I reminded myself that it looks worse than it actually is.



We also won the nursing (insert applause) so a big thank you to my family who stepped up to help financially in a time of crisis and to everyone for your support.