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.

Friday, August 22, 2014

Hello 911............this is Jude's scared as crap mom

About 8pm I started charting that Jude looked rather pale and seemed to be struggling to breath. I hooked up his pulse ox and his 02 was hovering around 87. I put him on some oxygen and when that didn't work I gave him a breathing treatment. Soon Jude went into a full attack. He was toned out, heart rate high, but his 02 was dropping too. I was scared to give him Valium because it could decrease his respiratory more and he really seemed to be struggling to breathe right. I kept turning the oxygen up and then finally maxed out on 4 liters. I still was trying to keep calm and follow the normal protocol.

Around 9:20 things got scary. Jude turned white, his nails blue, he began shaking, gasping, and his whole lower torso seemed to be working to make him breathe. It scared the living poo out of me because he looked SCARED and terrible. I really thought he was dying in front of me so I called 911. By the time they got there Jude began looking exhausted and then suddenly his 02 came up a little. His heart rate started slowing down and Jude passed out.

We didn't know what to do. We wondered if we should transport or continue to watch him and call the neurologist tomorrow. Since Jude's stats recovered and he was sleeping we decided not to transport. The paramedics ran an EKG on Jude which showed the same sinus tachycardia. They recommended keeping his 02 on because his oxygen level would still fluctuate and dip in the 80's. They were very sweet. They praised us for being calm and advised that since we seem medically educated to understand that if something scares us so bad to call 911 to know there might be something serious going on. They said if it happens again then they are a call away, there is a fire station with paramedics 2 minutes away we could run into, and we could transport ourselves.

So they walked out and I left my calm self and burst into tears.

Jude's update

We started the new medication with Jude today. It will take a few days for us to see the results. We are monitoring his blood pressure for drops and watching his reactions.

Now the concerning news. Jude might (might) be presenting with early pneumonia. We are hoping that is not the case. He is running a low grade fever, coughing a lot, and throwing up a lot.

So let's hope that's not the case.

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

Jude's weekend update

Overall Jude had an okay weekend. On Saturday he did have a tone issue where his heart rate got high again. On Sunday the nurse was giving him the scheduled oral Baclofen. We noticed it would keep his tone down, but his O2 levels were not that great. At one point the nurse had to put up to 4 liters on Jude to keep his O2 hovering in the low 90's. However, as usual Jude recovered.

Sunday night he had a horrible tone session! He was very spastic, face was red, temp was about 100, and his heart rate was 200-206. I am sure they got this all on his heart monitor, but they didn't call. So therefore, I am assuming they are not to concerned since we were able to get his tone under control.

I felt so terrible this morning. I went to check on Jude and noticed the smell of his formula. So I turned Jude and sure enough he had thrown up! I don't know when this happened, but Mike nor myself heard anything. It was all in Jude's hair, down his arm, on his pillowcase.....everywhere. I mean the kid didn't miss an inch! I thought I heard something around 3:30 and went to check on him at 3:38 but he was sound asleep. So I am not sure if it was then or when. I felt so sorry for the little guy. He could have aspirated and we didn't hear a thing.

Jude is still happy. He woke up in giggles this morning and when I talk to him he still gets a huge smile. The only thing I have noticed appearance wise is that he is rather pale, he still looks thin, and his eyes look tired. I am sure he is worn out.........I would be. Again the good thing is that Jude is very happy. Next week we will hold his 6th birthday party!

Friday, August 15, 2014

Survey says!

Mike called after Jude's doctor appointments.

Me "what did they say"
Mike "blah blah"
Me " it could be this, it could be that, it may be this, but it's not that"
He laughed and said "yes".

He did come back with some information and we ended up arguing over it all. I will get to that in a second. So the pulmonologist confirmed he didn't understand the scope of the problem with Jude's tone. Mike said the doctor was pleased to hear that we evaluate an entire situation versus relying on the pulse/ox machine to tell us if Jude's in distress. The doctor agreed that Jude has some apnea issues and expressed his concerns. He would like to eventually due a sleep study of Jude so he can find out the exact dosage of oxygen Jude needs. This makes complete sense! However Jude's tone has to get resolved first.

On to the next doctor appointment which was with the neurosurgeon. They believe the surgical site is looking great and released Jude back into therapy. They also said they still believe all these issues are still being caused by the Baclofen not being at a therapeutic dose. Which may be 100% accurate, but it still leaves me questioning that if the artane dose was close to the current Baclofen dose.........then why are we having these problems.

I also spoke to the Cardiologist who called after Jude's monitor sent them an event from last night. They were very nice and explained everything in detail to me. So hopefully the medical community that reads my blog isn't offended if I butcher this. She said that the echo showed that Jude's heart is structurally sound except for sinus tachycardia and an aortic root dilation. She said they measured the dilation on the Z scale and it was 2.7 so it was only slightly enlarged. They don't believe the enlargement requires monitoring itself only a follow up. However, they will continue to monitor Jude's heart via home for the next thirty days. They are looking to see if during these events if Jude's rhythm is off. If it is or if the signal is not working right in the heart then we have a more serious issue. However, if lasts nights episode is an indication Jude's heart will be fine. So I asked her, "Can a high heart rate cause an overall issue with the heart". She answered, "yes the heart can begin to tire but that is more likely in patients that have abnormal structure or abnormal patterns". So then I asked, "when does the fast heart rate become a problem?". She explained that if the heart rate goes up and stays up........then it's a problem. If it doesn't recover itself or if they start to see the other issues she mentioned in addition to the fast heart rate. So one more question, "So if we get to the end of this thirty days and no other issues are noted then basically my guess is we then go back to the other doctors to find out what's causing the tachycardia in the first place?". She giggled emphatically and replied "yes". So we wait.

So I looked a little online today. I am one of those that believes the Internet can be your worst enemy, but also provide a lot of information. I researched high heart rate with Baclofen and low and behold......guess what I found! Several patients actually listing they had this! I even found an experiment in rats that referenced high heart rate, high blood pressure, and aortic dilation (hmmm). I also found this:
"c. Stroke: Baclofen has not significantly benefited patients with stroke. These patients have also shown poor tolerability to the drug."
Don't get me wrong. I know Baclofen has been a miracle for some people and it eventually may be for Jude.

So Mike and I argued because I get so frustrated with this entire process. He reminded me that Jude is always a waiting game and never an easy fix. I just get frustrated that we have so many hands in the pot, so many guesses, and not enough pin points. I feel like WE are the ones that take Jude home knowing he will have more episodes and we are the ones that feel helpless. The doctors are doing their best but the hurry up wait and see just gets old sometimes. However, Jude is Jude and his case is complicated.

Jude and his fancy wires

Jude came home with his lovely heart monitor from the cardologist.

Last night went pretty well, but he did have another hour episode of a very high heart rate.

Yes that says 191. It's like he was running a marathon again. I could still get him to smile during the episode, but I feel bad for him when these stroke. Thanks Teri for leaving the information about Dysautonomia. That sounds highly likely due to the trauma of the surgery. Mike is going to ask the neuro today during his visit. They tested once for Mito, but I will talk to them again.

I will update more after his doctor visits today.

Thursday, August 14, 2014


The cardiologist said he thinks Jude's heart looks good. He said it had a good rhythm. He believes the fast heart rate is being caused by an event in Jude's body. Whether it's tone, seizures, respiratory, or pain this is what's responsible for Jude's fast heart rate. So they are sending Jude home with a 24 hour heart monitor and then a 30 day event monitor. He said he wants to make sure there is no arrhythmia during the events. He did say Jude looks like he might have a enlarged aortic valve but that it could be normal for Jude. That's something he will check on in a year to see if it's stayed the same.

Overall good news, but somehow I am sitting here feeling frustrated. I keep waiting for a definitive answer on what's causing Jude's issues lately, but I am not sure I will ever get it.

Tomorrow he goes to the pulmonologist and to the neurosurgeon.

Scary incident again

Last night my adorable friend Gina L came over yet again and brought me dinner. She also stayed and we shared some wine as we chatted. Suddenly Jude started having what we call his "episodes". He once again became extremely toned out, his face became very flush, he was sweating, and he seemed very distressed. I counted his respiration's and they were very high. I counted his heart and it was very high. So I plugged in the pulse/ox. His heart rate was over 200. I wasn't very concerned about his o2 because it was holding steady. I gave Jude some Valium to try to get him relaxed and get his heart rate down. Then the 02 started dropping into the mid 80's. It took Jude staying on almost 4 liters on oxygen to keep his o2 just at 90. This entire process went on about an hour.

I explained the situation to Charlotte this morning. I told her I was close to calling 911 and she said she felt the same way the other day. I was truly worried Jude was going to have something happen to his heart. We just stayed calm and worked with him to get him back to normal.

He visits the cardiologist today and we will see what they have to say.

Tuesday, August 12, 2014

When we lose a celebrity we feel we know

You know the old quote. “To the world you may be one person but to one person you may be the world.”

I don't know anyone that personally knew Robin Williams, but I knew a lot of people who felt they did. Most of the children of the 70's felt we grew up with him as a member of our family. He gave us laughs when we felt we didn't have any laughs left. He touched our hearts throughout his entire career. I was shocked when I heard the news that he had passed and felt that it couldn't be real. Then I remembered a conversation I had with my ex husbands grandmother. I was staying at her house the morning it was announced Princess Diana died. If you know me at all you know she was an idol to me.

I remember tearing up and saying.
"but she can't be dead!"
In her old firm but honest voice his grandmother quickly snipped, "well of course she can honey she is human just like you and me!" I gasped and realized...........she was right!

The people we put on pedestals are sometimes suffering just as much as the rest of us are. I have dealt with loss of suicide personally and touched in it on my blog. The signs are normally there. So take the time over the course of your life to reach out. Tell people you love them, protect those that are being bullied, say thank you when it's warranted, and remember every life is precious.

Rest in Peace Robin. Thank you for the laughs and the tears.

Ps. more coming on Jude after his cardiology appointment Thursday.

Saturday, August 9, 2014

Quality of Life?

Jude had an incident tonight where he turned pale, he was gasping, he was throwing his arms about, and he just wasn't acting right. I had been holding him while I watched TV, which is our normal nightly ritual. I was kissing him on his forehead and talking to him sweetly. That's when I noticed he just didn't look right so I moved him to his Futon. When the symptoms didn't clear up I finally plugged in his pulse ox machine. His O2 was 85 and his heart rate was really high. I wheeled his oxygen tank into the living room and plugged it up. This issue went on about an hour before I finally got him on a decent level. I then tried giving him a breathing treatment. When I took the O2 off his nose to give the treatment this is what his stats went. to.

Meh! Not the best reading!

So I turned his oxygen up to 2.5 liters and waited. I also gave him his nightly sedative. Within about thirty minutes he was more relaxed and back within normal range. Whew! He also looked better and began smiling a lot again. I guess it just takes patience and an overall understanding of his situation.

I had someone I respect very much ask me what our quality of life is today. Mike answered that we are just "surviving", but aren't we all?  I have learned it's okay to say our life is hard, it's okay to cry, and it's okay to be disappointed. We don't work out anymore, we don't go on vacation, and we don't get a lot of time together. However, we do have great jobs, we have two amazing kids, a nice house, and we have learned some amazing lessons. I am so thankful for every single day I have with Jude (actually every minute). I am thankful each time Emily walks through the door safe and healthy. I am thankful for nurses that watch Jude so we can have time out of the house.

So our quality of life? It's tiring, but overall I think it's a pretty amazing adventure! I am thankful to our friend for asking me that question today. At the end of the day it popped into my head and made me really evaluate our situation. It made me realize just how awesome our life really is.

Friday, August 8, 2014

The Tone Monster

Well the good news is the ER has NOT called today. Which means the blood culture hasn't grown anything yet and that is positive. I am not saying we won't hear from them, but it's looking more positive. Jude has a cardiology appointment next Thursday to have an Echo of his heart done. We should know more on that issue next week.

I came home today and Jude is really toned out again. He had Valium this morning, oral Baclofen this afternoon, and he is just so toned. His heart rate is so fast I can feel it pounding through his chest. Again it's either the lack of tone medication or maybe to much.

Here is a little video of how he looks. This is actually A LOT better than he was at the doctor on Monday. It's hard to explain to people that don't deal with tone. The best way I have found to describe it is it's similar to your joints locking in place and you are trying to break the pain from it. Like your finger locks and you are pushing your finger up to make it stop locking up. Make sense? I a sure a more educated therapist would have a better description.

I did get a response back to my letter and it was very nice! The doctor said she feels so bad about what Jude is going through. She did assure me she doesn't think the heart issue is an emergency but it does need to be seen. She assured us she is here to help in anyway.

Thursday, August 7, 2014

Okay I am a bit more calm.

We are home and I am more calm. Sometimes my emotions get the better of me so I will take a step back and try this again. When the nurse called from the ER I understand the full test had not been completed in regards to reviewing the organism that was growing in Jude's vile. Therefore they had to react based on their best educated guess. In medical terms they needed to get Jude in the hospital stat to evaluate his situation. I think I was just completely beat down with the entire situation but still only wanted best for Jude. So let's go through the actual realistic good and bad.

The good news is that Jude is very smiley and he is reacting to everything I say to him which is awesome. He is going to the bathroom normally, he is darting his eyes at us, and when his o2 level drops we can easily bring it up with suction or oxygen. His heart rate is still extremely high at times but it dips up and down. That's good because it isn't consistently staying high. So see there are really GOOD things about his situation! When I post you hear the negatives because I am stressed, but there ARE positives.

The not so great news. I have switched to Snow White mode so I won't say the craptacular news. Jude's heart rate is ranging between 140-196. He threw up again when we got home. His heart is not normal. I thought I would share a note I sent to one of Jude's doctor's tonight so you could better understand the situation at hand. Both the positives and the negatives and my thoughts process.

Title: Jude Ortiz..............AGAIN

"Believe it or not I got a call today at work that we needed to bring Jude back to the ER immediately. Once we got there we learned Jude's blood culture from last night had growth. However, it read under a microscope like bacteria from skin so they took another blood sample. The hospital will contact us if they see any growth within the vile within the next five days. I highly doubt they will because Jude looks good. In addition they said that Jude's EKG was irregular. They said he has tachycardia which we already knew. Jude's HR is running between 140-196. However, they also said the right side of his heart is not working correctly. They mentioned two issues but the only one I can remember is a conductive issue. I have noticed Jude's congestion has greatly increased and I am wondering if it's because his body isn't filtering correctly. I guess and speculate a lot, but I know something isn't right.

The good thing is that Jude is still smiling! The rest of his vitals are normal except his o2 dips sometimes. It's easy to bring up with oxygen and the heart rate goes up but comes down. All positives!!!  

The doctors keep saying this is a compound of various issues, but I am wondering it it's actually just one issue. I am wondering if the Baclofen can relax Jude's body to the point it is stressing it out. Maybe his heart is beating faster to send o2 to the rest of his body because of the muscle relaxer. I was told if he is stressing out this could actually cause the tone issue and I have noticed that he gasps for air like sleep apnea, but while awake. I know they think the tone is caused from the lack of Baclofen but could it be the exact opposite? I am wondering if the tone combined with Jude not getting enough oxygen is stressing his body and heart out.  This combined with his chronic lung disease is creating a possible serious complication with Jude and possible future heart failure. This could be reaching a bit.  

I have some experience with heart failure. I personally cared for my grandmother for 9 years and she had congestive heart failure we had to take care of. So I know the signs and also how quickly it can rear it's head.

Luckily they sent Jude home again (the best place for him)! We are still having to watch him carefully and now we have orders to see a cardiologist ASAP! I know this is long and drawn out but I am wondering if you have any thoughts. I know every doctor has his own specialty but I am so beat down! This Baclofen pump procedure has been very difficult on us. I know there are parents that hover around machines searching for answers, but rest assured we evaluate Jude as a whole.  

Signed Sleepless in Roanoke (lol),


I may get zero reply. They may reply "you are insane please go see a shrink" or they may just put this on record which is what I am wanting. I hope this sheds a little light on our current situation. I know it's hard reading and knowing exactly what is happening.

As I go to put Jude to bed his current stats are 93 o2 and 168 hr. He is pale, but happy. Just vomited but talking. He is our little mystery. I think Jude is just going to require closer monitoring. I don't think we will have any type of definitive answer regarding a particular disagnosis except that Jude isn't a normal child. So we will continue to take it a day at a time.

A quick grumpy update

We are going home again! They believe the culture of blood yesterday may have been contaminated. So they took more blood and they will wait to see if it grows. She said they wanted to see him in person to see if he looked like he had a blood infection. Well great thanks for scaring the living shit out of me and not explaining before hand. A simple "we think it's just contaminated" would have been great rather than "this is an emergency get here now!".

Next issue is Jude does have a "conductive" (hope that's the right word) issue with his heart and his heart rate is still running high. So he has to see a cardiologist for an echo. When? Sigh. I did ask if chronic lung disease can cause the issues she is seeing. She said there are actually two issues with his heart. On one issue it probably is the lung disease taking it's toll but the other issue is normally congenital. Man I am tired of "normally". It would be great to hear this is the issue and this is how we are fixing it.

So we go home and watch him. I am not sure if I should be relieved or pissed. Maybe both?
Sorry grumpy! Forgive misspells I am on my phone

Just FYI

The hospital just called and said there is an organism growing in Jude's blood. However they won't know for a few hours if this is an infection or what the issue is. So before I get to worked up I am reminding myself this may not be an issue. However, my mom gut says it is and people haven't been listening.

They also said the EKG is showing a possible problem with the right side of Jude's heart. I am assuming this could be from the stress.

They ordered us back up there immediately. My boss......poor thing. I just started bawling and he said GO!!

Jude's adventure

Jude did get to come home last night and he was so happy that he got to sleep in his bed.

The home health van got there about 10:30-11 and unloaded all of his oxygen. They also taught us how to use everything. That consisted of me standing there a little lost and Mike soaked it all in. I know I will learn how to use it all just like I did the feeding pump and the other items Jude has.

Jude's respiratory rate was still a bit high when he got home from the ER, but his o2 and heart rate were pretty decent. Again we don't depend on the machine. However look at the difference before oxygen and after.


I think it just makes him feel more comfortable. I only had to get up with him once last night and reposition him. Granted it was pretty late when we all went to sleep.

So what's causing all this? We are slowly eliminating things to determine the problem. I think it's the Baclofen itself. I don't think Jude's body is used to it and it's causing his respiratory system to relax so much that it sends him into distress. Either that or the Baclofen is indeed leaking and they just didn't see it. Mike thinks it's because we aren't at the therapeutic dose of the Baclofen and therefore Jude gets so toned out that he goes into distress.

So we will see. I plan on checking on Jude in a bit and seeing how he is doing with Charlotte today.

Wednesday, August 6, 2014

Drum roll....the good news and the bad news.

Jude is still a mystery! Mike said when they took Jude back his heart rate was up to 196 and his o2 had dropped to 88 with 3 liters of oxygen (insert a grimace). However, they got his o2 stable! His respiratory rates are still high and his heart rate is still high. They wanted to admit Jude based on this information, but Mike said if this is just due to oxygen we don't want that. If we admit Jude we take the risk of him getting worse by catching something within the hospital. Hospitals can be great places but they crawl with germs.

Mike explained to the ER doctor that I had called THREE doctors today including our pulmo just to inform them of Jude's condition. I told each one of them I was not panicked and I didn't feel like this was an emergency but it's concerning. It was the neuro that said get to the ER now. Jude is not a normal little boy so he is going to set off alarms on machines. It's being capable enough to know not to panic and to decipher the entire situation. You take into consideration the machine, manual stats, and Jude's overall condition. Jude can have a o2 stat of 89 but look great.  If we feel the combined situation warrants a call then we make it. So when the pulmo said Jude doesn't warrant oxygen and he feels we should just watch him I got a little professionally miffy and explained in an oh so kind way that I felt like he WASN'T LISTENING! He is a kind man so don't get me wrong I just don't think he understood the scope of the situation and that we have a nurse with Jude during the day.  I am sure he sees lots of panicked mothers who hover around pulse ox machines. That's not us. So Mike explained to the ER doctor that we reached out for oxygen prior to coming in and well........she wasn't happy. She called the doctor herself and received the same reaction we got. She said "this boy is having respiratory distress with labored breathing". She explained the entire situation and then well then he agreed Jude needs oxygen. SO there we go.

So right now I am waiting on a call from Mike, but my guess is that Jude is coming home tonight. If they cannot get him oxygen tonight then my guess is he may come home tomorrow. The doctor knows we have home health care (which we are fighting to save) and again we are medically capable. If there is an emergency we call 911 or run him into Roanoke FIRE which is 2 minutes away.

We knew Jude would eventually need oxygen. I am hoping he outgrows it. So is this baclofen relaxing the lungs, is there something we aren't seeing, is something stressing Jude's body out, or is this the leak. Your guess is as good as mine and all the doctors too.

Well back he goes

Jude is on his way back to the ER.

His heart rate is very high. His oxygen has been a struggle today and his respiratory rate is high. It doesn't matter what side he goes to the o2 seems to be an issue. Then it will level out and be okay. He is a confusing boy!

The crazy thing is..........he is still laughing. Maybe that's abnormal brain activity again.

I will update when I hear more from Mike. We know everyone is praying we are just updating.

Tuesday, August 5, 2014

The mystery of Jude

Jude's oxygen level kept dipping again last night. I have no idea what is going on with that. I try not to put to much stock into the machine, but it's obvious it's not a mechanical glitch. His heart rate stays elevated and when you turn him the oxygen stays about the same (low). So it's not a connection issue. It took us about another hour of situating him to get him to a stable level and he drifted off to sleep. What does this mean? No clue! I don't think it constitutes an emergency or panic it's just something else to watch. I put a call into his pulmo just to let them know. He doesn't need oxygen to eventually get him stable so maybe it's a baclofen issue or something residual from the surgery.

People ask me how Jude is. I have literally gotten to the point that I don't know how to respond so today I just started replying "a mystery, but happy!". I think that sums it up. He isn't in the hospital, he is happy, but there are issues we are watching.

I just sat on my bed this morning when my alarm went off for work. I wondered why people in situations like ours cannot magically find the money to pay off their mortgage. If I could do that I could STAY HOME. Then I kicked myself in the ass and reminded myself I should be really thankful I have a job. I drug myself out of bed, didn't fix my hair, threw on my clothes, kissed my kids goodbye, and ran out the door.

Monday, August 4, 2014

The update and NO hospital stay!

Jude does not have a catheter leak. He does have a spinal fluid leak.

When we got to the doctor Jude's heart rate was 166 and his blood pressure was rather high too. He was in full toned out spastic mode so the doctor saw first hand how bad he has been.  We gave him some Valium so he could have some X rays.

Per the X ray they cannot see a leak in the catheter. So they gave him a bolus of his medication and we will see how that does. He said if he continues this high tone then they will inject dye into the pump to see if there is a leak of Baclofen they aren't seeing. So he has two issues but the spinal leak should resolve itself. 

So basically it's another waiting game but we got to go home and we are VERY thankful for that!!!

Back to work tomorrow. If you need me I will be there.

Back to the doctor we go

Jude has to go back into the doctor. They have cut off his feed today in case he has to go back into surgery. Hopefully this is JUST a reaction to Baclofen.

A few prayers please.

Sunday, August 3, 2014

Same song different verse........

So Jude's tone has gotten so much worse! Tonight he threw up violently several times. I gave him a bath to clean him up. However Jude's tone was just terrible and he ended up getting Valium. After he had the Valium Jude was back to his old self. He was relaxed in my arms, smiling, sweet, and then he went fast asleep.

Mike and I both agree Jude just hasn't been the same since the surgery. He just hasn't been and I am rather tired of hearing "it may just take awhile". It's been over a month and something is just not right. I miss my little Jude.

I am going to call the neurologist tomorrow and see what needs to be done. I have a sneaking feeling that there is Baclofen leaking out of Jude's catheter and this is going to have to be fixed. In other words it's not spinal is indeed Baclofen. I hope that for once my mommy intuition is wrong and that it is just going to "take awhile".