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.


Monday, October 6, 2014

A Monday update with lots of information.

Mike took Jude back to the lab on Saturday to get his blood taken again. Mike signed Jude up on the long list of waiting patients and then took Jude outside to wait. He put a mask around Jude's mouth and nose to keep germs away from him. Somehow Jude's name was called pretty quickly and a line of people held open doors for Jude and Mike to walk through. Somehow I guess that some amazing person gave up their spot in line. People can be so incredible. So they walked to the back where a kind nurse to Jude's blood and he didn't even let out a whimper. We still don't have the results but Jude does have more bruising today. We do know that today's bruising is from his wheelchair because the nurse found his elbows under the pads she made. It's still concerning but Jude's coloring looks really good. So that is reassuring.

So here is where I am struggling. Since the Rhinovirus Jude's congestion and coughing have been terrible. I feel like he coughs on a consistent basis and we are struggling to suction him to get the congestion out. We are past the period that the virus should be giving him issues. His sleep apnea is also so terrible. I get up several times a night to reposition his head, but if I hear the apnea breathing stop I panic. The oxygen cannula doesn't do any good anymore because Jude goes into a full attack because he hates the cannula being put into his nose.We attribute that to the ER taping it into his nostrils and Jude hated it.   The pulse oximeter goes off CONTSTANTLY so it often gets shut off. Last night it was 82/186. So it's either keep him in the hospital on a consistent basis or learn to deal with the new normal. I am sure the eventual conversation will hover around a trach but I will put that off as long as possible. We do have a Palliative care team meeting for Jude in two weeks and I am sure that will help.

I am not sad. Jude is not sad. I am enjoying my time holding him at night and talking to him. That seems to be the only time he isn't stressed out around us. The only time he isn't vomiting, toning out, or stretching his body all the way back. He is just happy when I am holding him and he gives me the absolute sweetest grins! His little dimple grows in his cheek when he gives me his smiles.

Sometimes I  wonder how much of all of these medical visits and medications are just to make us feel better vs Jude making feel better. It's my job and honor to make sure Jude is well taken care of. To make sure he is getting the best possible care. I just want to make sure he is comfortable but I still wonder!

To date I have not let therapy or teaching resume and I feel like I have met a little resistance on that from those departments. I think Jude enjoys the interaction in therapy but is the risk of infection from other children worth what Jude "might" learn in therapy? To me the answer is no. Jude is simple and loving. He loves his home, his Futon, his nurses, his family, and to be held. It's honestly OKAY with me that he lives his life happy with us without being pushed. I am really okay with it and I think he is too.  Mike and I made a vow at the beginning of this that we would never push Jude to be our version of normal. We felt we overstepped those boundaries with the Baclofen pump. I know we shouldn't feel that way but we do. So we have regrouped, re prioritized, and realized! The only thing that's important is Jude's health and his happiness. We know his time is limited so we have to do what we think is right. We may love you in his life but we have to walk this road ourselves. So from this point forward if Jude isn't meant to go out he won't. If he isn't meant to have visitors he won't and we can only hope that Jude is happy with our decision. I think he is really happy with his daily routines. His grandma Susie still comes over and sings to him on a regular basis. She also prays and recites her rosary to him. You should see the way Jude looks at her it's just precious!

I know people are concerned about how Jude's doing so I just reply, "about the same". I really have no further information than that. He is smiling and loved.

Thursday, October 2, 2014

Bloodwork

Well the Clonidine has been completely nixed the patch and the pill. It did NOT mix well with Jude at all. My guess is still that the pill caused this bruising in addition to the host of other issues Jude has had with the Clonidine. At least that's what I am hoping.
 
So the good news is that Jude's CBC once again came back fine. However the lab..............ready for this...............just skipped right over the clotting factors. They didn't RUN IT! The doctor is very angry. It's the WHOLE reason we went to that lab.

I am really just shaking my head. The lab admitted they just overlooked it and that they cannot run it on the current blood. So we have to take him back and do it all over again. This after been home for days waiting. ...and they wonder why Ebola is in Dallas. (Sorry had to throw that in there).