Monday, September 22, 2014

Deleting people, a big bruise, and a great weekend

The Emily's Smile Box Day featuring the Pediatric stroke walk/run went amazing. I was so impressed with the amount of small children that came out to participate in the event. All the little kids put on their little white T shirt and on the back it read "I did it for Jude". They all set off on the 3.1 mile journey and their parents encouraged them the whole way. Their moms told them about a little boy who cannot walk and how they were doing this for him. Every single person crossed the finish line. It was a very emotional moment. The little kids were so proud of their medals and they seemed to truly understand that they had accomplished a big task.

After the race they put together 250 Emily's Smile Boxes to benefit local pediatric hospitals! We had amazing volunteers who packed up all the boxes and took them to different facilities.

Jude is still home but he is coughing literally constantly. I cannot get him to QUIT coughing. When I got home tonight Jude was upright in his wheelchair eating from his G button and enjoying the TV. He seemed a bit uncomfortable so I got him out and put him on his futon, but he was still angry. So I picked him up and put him on my lap as we watched TV. He was happy for about 45 minutes and then he was angry again. So I went to lay him down and I saw a HUGE bruise on his arm. I gasped and I felt so bad for him. I know everyone in his life is good to him so I started searching for answers and I settled on the wheelchair. I think Jude was so toned out he was burying his elbows into the arm rests. However I was still very concerned about the bruise that surfaced within hours. If he has anymore I may have his Liver enzymes tested.

On another note. Emily and I both work her charity's facebook page. Over the past few weeks she has asked me to check someones status only to realize that person has not only deleted me from my personal facebook but blocked me. I think social media can be so dramatic so I try not to sink to much stock into things. Honestly I never would have noticed unless Emily was involved. However I cannot help but stop and wonder what I did. I wonder if I was being to candid on my blog, being to outspoken on current events, a misunderstanding regarding insurance, or being to forthcoming on my feelings about Jude. Regardless I did something that irritated a select few. So I just wanted to say that I guess I need to clean Facebook house and find those that stand by me no matter what the cost. I also wanted to point out that when you are my friend you are always my friend. Even those that have drifted into the sunset are still a part of me. So even if you love Obama and are against the legalization of medical marijuana I still respect you. Even if you think Adrien Peterson did the right thing by whipping his son I will listen to your opinion. I may not agree but I will listen because you are my friend.  Even if you think I am to candid in my blog and my statuses on facebook regarding our situation I will always listen. I am very easy going. Opinionated but easy going. I try to find something in each and every person that I respect and want to be a part of. So I apologize if I have offended you in someway but I hope you remember that if I didn't have strong opinions I wouldn't be who I am today. I hope that my updates haven't made you feel bad. I hope that they don't sound like I am whining but if they do well that's just freaking life. Sometimes I just have to let it out and my outlet is this computer.  Again just know I am here to listen. I don't give my friendship away easily and I hope you respect me as much as I respect you.

Saturday, September 20, 2014

THE update

Okay quick run down! After my last post Jude had a horrific night so going home was a NO GO on Friday! He was up to 8 liters of oxygen and was having a terrible time. He literally coughed all night long and it was a cycle. He would cough, I would have to make him gag, I would suction the secretions, and his oxygen would lift. A few minutes later it was the same situation. Eventually mom gave out so they masked Jude again to keep his oxygen up. I mean Nurses do have other patients they can't stay beside one bed with suction in hand.

So the next day I asked to increase Jude's breathing treatments to 4 times a day with CPT. Honestly I think hospitals are amazing and do wonderful things, but sometimes I feel I am the one giving the orders and diagnosing. I caught that one of Jude's seizure medications wasn't being given, that they had given to much Miralax (omg I won't even go into it), requested more breathing treatments, asked for the CPT, and ripped the cannula out when it sent him into an autonomic attack. I truly think nurses are underpaid and understaffed. Poor things.

So during the day Jude actually experience a horrible full on Autonomic Dysreflexia attack. The nurses were stunned and were asking "what IS this??". I explained that Jude used to have 5-7 of these a day when the Baclofen was flowing into his Central Nervous System. That now we are down to 1 or 2. They had never seen one and relayed the information to the doctor. There isn't much that can be done from the witness of the attack but it was reassuring that someone else besides our immediate core people saw it. I hated Jude went through it but now we have it on record.

Skip to last night. After his increased breathing treatments and suctioning Jude went to sleep. I was laying there watching TV and I heard him stirring. I tried to be very quiet because I knew if Jude woke up he would cough and if he coughed after waking up he would vomit. However suddenly I heard I thought I had fallen asleep and was dreaming so I waited and I heard a little OMG! I said "I'm here Jude. I am right over here baby!" Then he went back to sleep. The only thing I can figure is that Jude woke up and was scared in unfamiliar surroundings and somehow he found a way to call out to me. I don't know the explanation but I can die happy he said my name twice in a row!

 So today Jude started the morning at 4am! Hi ho a dairyo the farmer is so tired! You heard me sing that didn't you? We spent from 4 am - 6:30 am trying to get Jude to breathe correctly. We suctioned, we gagged, he was lovely. So when that ended I curled back into my ball and suddenly I heard "ahem" and woke up very startled to a doctor standing over my bed. It had been an hour and the neurologist wanted to talk to me about Jude. I wiped my blurry eyes as he handed me a prescription and I tried to interpret his words. I got the gist that the Clonidine patch is a no go, the Oral Clonidine is a go, and to follow up when the Virus is gone to further explore the Baclofen pump mystery.

I laid there a bit longer and then Jude started coughing. So I got up, got ready, and armed myself with the suction. Overall I thought Jude looked better! Was he well really...........NO!!! However he looked better! So when the floor pediatrician came in he noticed I had taken Jude's oxygen off and put him on room air. Jude was holding at 93 oxygen levels. The doctor didn't seem to impressed, but I pointed out that Jude has his own issues and this virus is just causing additional issues. That a 93 o2 state isn't that bad. I told him I was concerned about Jude's urine output but that the only thing we cannot do at home is IV'S! Just then Jude decided to have a massive storming episode. He coughed and coughed, I suctioned, his oxygen went to 80 and wouldn't come back up, and then.......he vomited. Well crap! So the doctor said he would be back later to consider releasing him. He said, "If this was a normally healthy child there is no way I would release him. I understand you basically have a mini hospital at your house but you have to know that if in anyway he shows that he is worsening you have to bring him back immediatley. I mean 911 immediate". I assured him I understood. Then Mike walked in.

At that point I left to get Emily ready for homecoming next week. We went to ONE MILLION places (lol). Then we went to the facility that is hosting her Emily's Smile Box charity event tomorrow to get everything set up. Then we came home and greeted Mike and Jude. Yes, they let Jude go. We might be second guessing ourselves tonight because Jude has had a tough night, but I know he is more comfortable here. Mike is in Jude's room now suctioning him as he coughs, gags, and vomits. It seems to be a never ending cycle. I feel so horrible for Jude.

Tomorrow we have everyone strap on their running and walking shoes. They will wear shirts that display they are walking for Pediatric Stroke Awareness and on the back of the shirts it says, "I did it for Jude!!".  AMEN!

Thursday, September 18, 2014

Jude's update

I'm on my phone at the hospital so writing this blog should be interesting. Jude's coughing consistently, running a fever, and just not a happy camper. He is having problems regulating his o2 which seems to be the norm lately. Good news is he has wet diapers again!! Also since putting him on a continuous slow running feed the vomiting has subsided. 

My favorite neurologist of Jude's just came in. He said he thinks we should keep Jude on the oral dose of Baclofen but remove the Clonidine patch. We are going to take things  step at a time and see how Jude reacts. He explained there are really only four doctors in the area that deal with the baclofen pump and if we wanted another opinion he had a guy. However we may want to see them
In the office vs here. He wants Jude home ASAP because there are so many germs up here and Jude's immune system isn't stable. So if Jude keeps his food down and stays stable overnight they will send us home. However they did just have to mask Jude vs the cannula for oxygen. 

The neurologist said what we already know, that Jude is not textbook. He asked if the other doctors have explained why his oxygen levels have given us issues since the surgery but I explained they had no explanation. I told him I fear Jude may never return to the condition he was prior to the pump placement. He then asked about taking the pump out and I explained they said they wanted to wait and he replied "of course get him stable".  

So their plan of actionis  is focusing on his illness right now. They believe it's viral but will have the test back soon.  Once he gets passed this illness they will move in to treating the issues from the surgery. Either that or at least get us to someone who might have an idea what happened. The neurologist did agree that the pump pushing the Baclofen in just obviously didn't work for Jude. His case is so complicated and they have to take baby steps. 

Looking back to raising Emily it still amazes me that we take such a sick child home. One that needs oxygen and so many other interventions but I'm thankful we can. I'm thankful we have the modern technology of having our own little hospital at our house. 

So Jude's still a mystery. I'm still praying he hangs out with us a lot longer and that this pain decreases for him.  I think we have to adapt to Jude's new condition  and learn how to better manage it out of the hospital. 

Thursday morning update

Not much to update this morning. Jude had a decent night. His GI came to see him and believes the Baclofen pump doesn't work for him and needs to come out. However again he isn't strong enough for surgery yet. They are thinking Jude caught a viral respiratory illness on top of these other issues and that's why he is admitted. However I still think there is a lot of guesswork and I am hoping they do bring in the Baclofen pump specialist. I will be going to the hospital later today and staying tonight. I am not sure if I will be at work tomorrow or if I will have someone sit with him.

The Palliative care team from the first hospital did call the other day but there still isn't much they can do until they see Jude. We also requested one at the current hospital but we haven't seen them yet. I am sure that will be later today.

In addition the doctor said the Dallas hospital is overflowing with pediatric respiratory cases. So wash your hands and keep your kids at HOME if they are sick please.


Wednesday, September 17, 2014

Wed night update

Jude's x rays and blood still look normal so he is still a mystery. It's possible he has a virus on top of the other issues he has been fighting. We just don't know the difference between the mild illness and the serious one anymore. Mike said they are talking about bringing in a specialist regarding the pump and I think that's a wise idea! Jude seems to cycle throughout the day through phases of being alright and then having issues with his o2, tone, temperature, urine output, lethargic, pale, etc. Jude has been admitted so I am sure we will find out more tomorrow. As hard as it is being away from him I am at home tonight. I will sleep tonight and then switch off tomorrow night. I guess we have learned how to conserve our energy in hospital settings.

Mike called me earlier and was pretty upset which is understandable. I think we are both so exhausted that you start playing every scenario in your head. You play them all even the worst ones. Whether those scenarios are valid or not when your mental state isn't stable you cannot help put think of them. So forgive us if we cry on you or say things that might not come to pass.

I have mentioned I wonder about taking Jude into the hospital. Today Charlotte called with reason and said Jude needed to be seen. Sometimes I wonder if the doctors aren't at a loss and just done with us. I wonder as much as I hate the word if Hospice could be helpful for Jude. If maybe their understanding of chronically ill patients could benefit him in some way. I don't know. Not sure what I know anymore. Not sure if it's good for Jude to be in the hospital and not sure anything would ever change bringing him home.

We appreciate everyones prayers and concerns. Mike and I are both pretty public and our emotions play out like a play on the set of a stage. We appreciate everyone bearing with us and all your sweet messages. We will get back to them as soon as we can and will update when we know more.

At a loss

Jude is going back to the hospital. This time he is going to Dallas.

I don't even know what to say or post anymore. He is coughing, not urinating, running a fever, is toned out. Among other things. I am not sure if this is something new, Baclofen withdrawal (still), side effects of oral Baclofen, or what.

I hate Baclofen. I hate the Medtronic pump.

I want our lives back.

Monday, September 15, 2014

Jude's saga continues

Jude had a horrible night last night. I was up most of the night holding a suction to his mouth because he was coughing so hard he was vomiting. Then he started running a fever. So then I started running down the list of what this could be
Baclofen withdrawal?
Aspiration pneumonia from the vomit during the attacks?
Viral infection?
A pump infection?
I knew Jude needed to go in to get check out since something minor can quickly escalate. My plan was to go into work and get everything I could caught up. Then I would head home and take him the the pediatric ER at the hospital we had the pump placed at.

My plan worked until Charlotte and I put Jude in the van to head to the hospital and Jude started violently throwing up. I expressed my concern driving with him in that condition. I ended up stopping at Roanoke fire dept and they helped me transport Jude. They were SO nice. They gave Jude oxygen, fluids, and Zofran in the ambulance. Once at the ER they ran dozens of tests and looked at his history over the last few months. The doctors were stumped and felt so bad for Jude. He would not stop vomiting and had an episode so violent in X Ray that even the men we calling Jude, "poor baby".

His chest X ray looked good however they pointed out aspiration pneumonia can show up on an X ray 72 hours after a fever. We know that because it's happened before. The abdominal X ray was negative, his urine was negative, and his stomach was soft. His blood work did show elevated white blood cells. That could be anything. There were two doctors in the ER and we were dealing with both of them. The first one wanted to admit Jude because of the vomiting and because she felt more tests needed to be run. She also ordered some more IV fluids. Soon the other doctor came in and explained some more test results. I explained that I would like to make sure Jude got his IV's but then I was considering taking him home. I explained that Jude hasn't been the same since the Baclofen surgery and even if this isn't related it just seems to be another complication. I pointed out that there entire waiting room is FULL of respiratory patients and I didn't want Jude catching something else on top of all his issues. I told him we know how to monitor Jude and just like earlier today when we transported we know how to make the right decisions. I then said "Jude isn't the same. I'm not sure if this is the start to aspiration pneumonia, if it's a stomach virus, if it's baclofen withdrawal, spinal meningitis, or if this surgery was to much. Sometimes I wonder if all this is just because the surgery was to traumatic for him and I wonder if he will ever be the same again." I told him I wanted to take Jude home and if he continued to get worse to take him to Dallas Medical City where they helped find the solution to the complication after his surgery.  He replied that it IS possible the surgery was just to much for Jude. Then he said I seemed very medically educated and everything I said made sense. He said Jude is just a sick little boy.  I requested some Zofran and some Erythrimiason. My reasoning was to stop his nausea and that if we are having another issue with his bowels slowing that the antibiotic would stimulate them. The doctor agreed and gave us a prescription for each.

The drive home was NOT easy! Jude retched the entire way home. However Jude gave me a BIG smile when we got home so I knew he was in the right place. I am trying to feed him Pedialyte but it's not going so well. If Jude doesn't continue to improve then we will head to Dallas, but let's hope he does.

Sometimes I wonder if I should just keep Jude as comfortable as possible here but then I panic and realize he isn't doing well and rush him in. I am just torn.