Monday, September 1, 2014

Happy Sixth Birthday Jude! 9/2/14

When you were a baby I would sit closely next to your crib and look at your sweet little face. I would watch your chest raise and lower with each breath and with each breath I would relax a little.


The doctors told us your life expectancy was five. However an amazing doctor stepped in and told us that no one could put an expiration tag on you, but you. I watched you grow and I watched how you and your sister connected even though you had no voice to harass or annoy her with. She has learned so much from you and I truly believe you have learned a lot from her. When Emily speaks I watch your eyes search the room for the source of her voice. I watch your eyes light up when she mentions your name. I see Emily truly believe in her charity because she believes in her heart she did it solely for you. I watch your connection and it's amazingly special. I don't think it could ever be replaced.

 


You go through so much. So many medications, painful afflictions, and battles for you life. Yet through every single step you constantly do your best to put on a smile.


Lately I have watched you suffer more than you ever should. I watch your breathing become erratic, your heart rate sky rocket, and oxygen strapped to your nose on a regular basis. I get so angry that you are in this situation and that the doctors seem to think that since your "special" you should just adapt. However you constantly remind me that you are a fighter and that you will give this everything you have.

 
 
In my mind you are truly a super hero. You have done more in your short lifetime than most of us will ever accomplish. I am so proud to be your mother. I couldn't ask for a more amazingly perfect little person in my life. Thank you for teaching me what's important and for being the best son!

Happy Birthday Jude. I love you more than words.

Sunday, August 31, 2014

Miss TX and Jude

I took Emily and her cousin to watch the Miss Texas USA pageant last night and today. It was just a quick overnight trip but it was great to have a little down time. I love my family dearly, but I guess we all need time to regroup. The girls really enjoyed being together and meeting new friends. Emily's cousin has never competed before and is learning the ropes. She looked at me today and said, "I have really learned this is A LOT of hard work and people just don't get what goes into competing in pageants". She is a beautiful girl and has an incredible heart. I know she will have a great time this year. Here is a picture of she and Emily. I just couldn't find the right lighting for pictures this weekend.



After a great event it can be a long drive back to Dallas from Houston (ha). I walked into the house to Jude's alarms going off and to a letter stating the hearing for the nursing has indeed been rescheduled. I have no idea how this could happen. I am not sure how a child that's so sick, on continous feeds, on oxygen, using a pulse oximeter, needs controlled substances throughout the day, and more doesn't qualify for a nurse. I have no idea why they would feel the need to continue on with a hearing. I guess we are going to have to find the funds for legal help. I am still holding out hope that maybe this is a mistake and the doctor is still reviewing my packet, the five letters of medical necessity, and the 38 pages of nursing notes from our healthcare facillity. Maybe she hasn't gotten the response to the hearing officer yet? If Jude could function normally I would'nt be pushing this issue, but he is just not well. He needs his nurses.

I decided to just take a deep breath and continue to bask in the destress time I had. It was relaxing even though I got lost in downtown Houston and had two major panic attacks in traffic (bad ones). Anyone want to offer to drive us all the way to Houston in November? LOL!!!  My stomach was really hurting today and our little cousin said "Do you think it might be from stress?". Oh bless her little heart. She is probably right, but she shouldn't worry about those things. I just hope these girls concentrate on their goal and have a great time.

Here is to a great time with the girls, our friend making top 18, and to a positive week.

Friday, August 29, 2014

So irritated

I received a phone call this morning that the neurosurgeon had reviewed the X rays of Jude. He said that the catheter looks to be in the right place and so does the pump. Before I share the conversation I would like to express that I am in no way rude to the office when they call.

Me: Okay so what are the next steps that they propose
Nurse: Well they said everything great and they will see you Thursday
Me: but everything is NOT great! Nothing is great. Jude is very ill and keeps having these attacks. It's not fair that this little boy has to suffer throughout the day with this awful situation
Nurse. (bless her heart). I am so sorry. I understand.
Me: Yesterday the PA called me to let me know she was having the doctor review the X rays and she herself said that after seeing Jude this is a "scary situation".
Nurse: Jennifer I want you to know I understand your frustration and if this was my child I would be so upset. Let me read what the PA put in the system (reads). Oh my....yes she voiced her concerns but it hasn't gone to anyone else yet.
Me: I just don't know what else to do. Did you know I requested a patient care meeting with us and his doctors to all get on the same page and it was refused?
Nurse: Yes I heard and I just don't understand that
Me: Jude has okay days but my fear is on one of the bad days he is going to go into cardiac arrest because it's just to much for his body to handle
Nurse: and I think that's a reasonable fear
Me: To me it seems like Jude goes through the classic symptoms of Baclofen withdrawal. We amp up the Baclofen, put on a patch of clonidine, and Jude seems out of it. Like he is over sedated. Then a few days later he is full spastic and in a lot of pain. This may just be a situation with the pump itself but it could also be a leak they aren't detecting
Nurse: yes that happens for sure
Me: but everyone's answer is just to keep turning up the Baclofen. When do we get to a point that it's decided it's not the lack of Baclofen?
Nurse: (quietly) I think it's about time you wonder if it's time to work on turning the pump off. I am going to send an email to the doctors and tell them BOTH about our conversation.
Me: another thing. I appreciate that Dr Roberts is doing his best, but I am tired of him telling me everything is fine! It's NOT fine. I don't mean to be rude
Nurse: You are not rude at all and I completely understand why you are so frustrated.

So basically that was the conversation. So again today I am just so frustrated. Jude had another attack last night where I had to give him Valium. He eventually relaxed but never fully. Charlotte said he is happy today so hopefully today will be a good day for him. I know he has to be tired. His PT told Charlotte that she works with a lot of kids with Baclofen pumps and she hasn't seen this. She said it's just not good. Charlotte even suggested going to the hospital and demand they check him in to find out the issue, but I am not sure that would do any good. I doubt they would even admit him.My husband mentioned that he is sure they are leary of a lawsuit at this point. We don't want attorney's...we just want Jude better!

I also had Jude's ARD this week with his school. If any of his teachers are reading his blog know my distance in the meetings is not because I don't care. It's just another reminder to me that Jude is not normal, cannot attend school, and that things are not well. So I just listen and then read the progress reports you send.

Thursday, August 28, 2014

My throw back Thursday and the nursing wait

It's been a hard week for me emotionally. I guess I am just a big cry baby or I have hit a wall. I did follow up today with the hearing officer, but I was told there has been no communication from the doctor representing the case about the nurse. I did confirm they received and uploaded all of my information. I also confirmed that 38 pages from Jude's nursing agency were received and uploaded. The information from the nursing agency notes all the interventions, heart issues, and more. So let's all pray this works out.

Jude went back to the doctor today. This time Mike took him and Mike expressed our concerns regarding Jude's health He let them know that Jude had more issues yesterday. He also let them know if we had known this was even a remote possibility with the pump we would not have moved forward with the surgery. We did research online but there was nothing associate with the pump in regards to Jude's issues that we read. They did more X rays today. They are looking at the pump, the catheter, and Jude's lungs. We are waiting for the results which I was told were "sent to the doctor for review".

I was looking at some old pictures today and I found two adorable ones from when the kids were younger. I sometimes wonder how close Jude and Emily would be if he was "normal". Emily cares about her brother deeply and has learned so much from him. More than she will probably ever learn in her lifetime. She has learned compassion, patience, and not to mention the vast medical experience. However, the thought is there. I wonder if he would get on her nerves like little brothers do or if they would be inseparable. Emily always had a knack for positioning herself with Jude to make it look like he was truly participating in their pictures. I never asked her to......she just knew. In the first picture Jude was postured to the left. Emily snuck in beside him, grabbed his hand, and got him to smile. In the last picture I laid Jude beside her and when she saw he was asleep she asked for a picture and closed her eyes too. I will decide to be happy for these moments and all the moments after.





Wednesday, August 27, 2014

The hearing

Well the hearing didn't go great. They didn't have the information we had sent or the nursing agency sent. This even though I had a signature via UPS that it was received at the beginning of August. So they had to postpone the hearing so the doctor could properly review all the information submitted. However their doctor stated that the neurologists letter that states Jude's situation has deteriorated explaining he is on a continuous feed, oxygen, new medications, etc still wouldn't warrant the nursing. We don't even ask for full time nursing like Jude's doctors prefer. The doctor and I got in a bit of a professional riff. She was extremely rude, but I guess she realized how she was acting and apologized. She promised she would review all the information today and would make a decision. So let's pray she decides to continue his hours because I am tired and stressed. I don't want to do this anymore on top of Jude's issues. However it sounded to me like she still believes he doesn't have medical necessity.

Jude had two autonomic attacks last night and they weren't good. Mike and I both really had to work with Jude to get him back to normal. I am going to post a video of the one on the couch. I had already administered Valium here so he is starting to relax a bit. Keep in mind Jude can laugh with pain.



The one Jude had when we put him to bed was more concerning. He looked like he was panicked because he couldn't get oxygen. So I checked the cannula and it wasn't working. He kept setting off his alarms, was turning red, and was just stressed out.  I finally lifted Jude up and took him to the living room. I held him and stroked his hair until he calmed down and started to breathe easier. However any time I would move he would get stressed again. So I finally took him back to his bed and when I put his oxygen on he calmed down and soon went to sleep. He slept fairly well. His o2 alarms would go off every now and then but he would recover.

The hearing put me in the worst mood. I am just so tired of dealing with things lately. I am tired of people saying "sorry". Tired of the hugs they feel they need to give me. Grateful they are there, but just beat down. Oh and my brakes went out. Dear Lord..........I would like a break now please, thanks. Just call me Grumpy cat today.

Tuesday, August 26, 2014

Jude's update

There is a part of me that believes Jude is finally doing better. There is another part of me that wonders why he is so congested and why he keeps throwing up. Mike and I both also noticed that Jude's Spinal fluid leak looked like it was also going horizontal vs vertical last night. I am wondering if this has to do with his nausea. However Charlotte said it's flat this morning so that's great!

The good news is that his heart rate seems to be under control now with the new medication. He is smiling a lot again and he doesn't seem to be having those horrible attacks. He goes back to see the doctor Thursday and the hearing for the nurse is tomorrow.



Saturday, August 23, 2014

Saturday's update. Sorry for the delay

Jude had a fairly decent day. His coloring was terrible..............and I do mean terrible. I hesitated posted this picture but the information that follows it is reassuring. I just wanted to demonstrate how concerning his color was. Keep in mind he was sleeping.




Jude napped for over three hours today. This is his first full day with the Clonidine. I have noticed that Jude started to have two full attacks but something stopped them from proceeding (clonidine?). His oxygen would drop but once we administered some rescue oxygen he soon recovered.........that's good news. His heart rate would spike but then quickly leveled. His tone was bad but not horrible. However his blood pressure is low, his eyes are doing this strange flickering and rolling back, and his color is terrible.

We feel comfortable keeping Jude at home because his stats are good. I think that's another score for the pulse ox machine. If it weren't for the machine our nurse said he would have called 911 today. So maybe the Clonidine is actually starting to help! I am interested in knowing side effects that other parents have seen. I am guessing it's a careful balance between the possible effects and the possible recovery. I am breathing a little easier with hesitation. Does that make sense?

I did notice Jude's spinal fluid leak is bulging again on the right side and I wonder if that will ever resolve. I also noticed another situation tonight. I remember when Jude was a baby we would spend over two hours trying to get him to take one bottle of formula. We thought it was just an issue with the formula, but we finally figured out that it was Jude's body refusing to do something that could be harmful. Eating by mouth could be harmful because Jude aspirated on every form of liquid. So he would turn his head from side to side refusing the bottle and we became SO frustrated. Today I held Jude like I normally do in our little spot on the couch while we watched TV. He would begin to arch back, gasp a little, and turn to the right. He has been doing this since the surgery, but I always shrugged it off as involuntary movements. Today I realized this might be Jude's body's way of repositioning itself to get the most oxygen possible and to possible lower his blood pressure. It's truly AMAZING how resourceful the body is. He wants to be held but his body does what he needs to in order to get what it needs to in order to thrive.