Monday, May 18, 2015

Follow up

Mike and Jude made it to the hospital and back! They decided to change Jude's AMT GJ feeding tube out with the MIC Key brand and increased the size. Mike said there was a small complication and that they had issues with the guide wire. However they got it fixed and Jude was okay. 

Jude has been throwing up brown residue at home for about the last week and half. I did call once the boys left and asked the doctor what he thinks it could be. Radiology stated they didn't see anything and the GI doctor told me to call hospice. You know the old you call her no you call him situation. So I put a call into hospice to see if their doctor can evaluate the situation. 

So they are home safe and sound :)

Frustrating end to the weekend.

So this weekend was good but the end wasn't so great. Friday night I guess I got bit by something in my sleep. I woke up on Saturday with this large welt under my skin on my cheek. I thought it was just acne and didn't pay much attention to it until it started swelling terribly. By Saturday night it was up near my eye and my pupil was almost fully dilated. Since I love to panic I had convinced myself I was having a stroke or something. I finally calmed myself down and realized it had to be from the bite and it probably had an infection with it. I had some bacterial antibiotics that had been called in and proceeded to take those. By morning my eye was back to normal but I am still very swollen and my face hurts. 

Sunday just turned into a giant stressball. Our poor nurse isn't feeling well and needed to take off today. The nursing agency called and said they had checked with our normal nurses and no one could fill in and did I know anyone else. WTH? No and that's YOUR job.........really irritated me they even said that! So Mike made plans to stay home today. I couldn't stay home because my co worker is out of the office. Well Jude's feeding tube was becoming clogged again and I had contacted the GI office on Friday about getting it changed. That was a cluster in itself and ended with me saying "I shouldn't have to go through this every time his feeding tube gets clogged". I said it nicely I promise. After that sentence they seemed to be on the ball.'s now completely clogged as of this morning. So we are rushing to try to set up Hospice transport but we don't think they will make it in time. Jude has an 11 am appointment in downtown Fort Worth. That means Mike will be taking Jude alone and although he isn't that worried about traveling with Jude I am. If you remember the last time we transported without another person to suction Jude choked and coded. So I am hunting someone that could ride with him to help. He is leaving around 10 I am sure. 

It seems it never ends. I am not having a pity party but I am frustrated. I can only imagine how Jude feels. 

Friday, May 15, 2015

Dr happy heart and the funky bunch

I went back to the cardiologist yesterday and reluctantly had the echocardiogram. The doctor told me that for what I have been through my heart looks amazingly beautiful. He said there is a little damage but it's nothing he cannot reverse with the medication. YAY! So I am in the clear. I was very fascinated with the sonography portion of the test and went so far to look up what type of schooling it requires. They actually make pretty good money and it's just fascinating! 

Jude is still running an intermittent fever but he is still very smiley. He is also so vocal with me lately and I just love it! Very blessed times with him. 

Wednesday, May 13, 2015

Nervous mommy!!

I have had an overwhelming sense of dread all day today. At one point I felt like I wanted to rush home to Jude because I just felt something was wrong. Rather than running out of the office in some crazy mommy panic I texted Charlotte and not so patiently waited on her reply. She assured me Jude was smiling and happy but he was running a fever again. She gave him some Motrin and this brought his fever back down. I have no idea what the temperature issues are. It's a guessing game with everyone when it comes to Jude and deciphering if he has an infection or if this is a new ongoing symptom. Regardless I have no idea why I am feeling the way I am today but it bothers me. I also keep smelling that weird? Wait don't answer that. Oh goodness now I sound crazy but it's true. I don't know if it's a sign, angels, or maybe I have something neurological going on (insert laugh). I really think it's comforting so my guess is it's either my brain playing tricks on me or some type of comfort measure. It's never happened before but I will take it.  

On another note do you remember the blog I wrote about being comfortable with myself? Yeah I saw a picture of myself last night and wanted to crawl in a hole. That blog went out the window, lol! I have accepted I cannot do much in the way of hard work outs with Jude. I am exhausted and I have little time.  However I did order some fresh healthy meals for work and I am going to try to work out each day on lunch at the rec center. This combined with walking the dog should at least get me back to being comfortable again. All this starts on Monday. I have decided not to be to hard on myself if I miss a day. I realize my situation is very different from most peoples and therefore I don't think it's reasonable to hold myself to a certain standard. So maybe that's emotional progress? Anyway, the rec center by my work agreed to allow me to sign up under a resident status again so that's great news. 

We have had HORRIBLE weather lately in Texas. Right now it's raining so hard that many people are once again facing flash floods. Emily is currently driving home from school in it and it makes me very nervous. I am biting my nails until she texts me she is home. I am just one big bundle of worry nerves today aren't I? I need a bubble bath! 

Monday, May 11, 2015

A quick update.

There isn't anything really new to report on Jude. He is still fighting with a smile! He ran a fever on and off the whole weekend and his cough has gotten worse to me. However he still gives you a big bright smile if you talk to him sweetly. 

I just wanted to update quickly. 

Friday, May 8, 2015

Customer Service, Tornado's, and a fever

For those who read my blog that don't know me personally I live in tornado alley. Not Oklahoma tornado alley but still tornado alley. Last night this was about 15 minutes from my house and way to close for comfort. 

I actually snapped this outside my house about four years ago. 

Tornado's FASCINATE me! They scare the living crap out of me but fascinate me. Several of my friends call me weather girl and call for updates during a storm. Some make fun of me (including Emily lol)  but here is what I have learned after being in three various tornado's. They are like the ocean. They are big, vast, and amazing but they deserve our respect! They can wipe out life in a second and you need to be prepared. 

Our electricity went out for a quick period last night and as we were running with flashlights to get the oxygen tanks I decided I would be proactive today. We have the threat of very severe storms again tonight and tomorrow. So I contacted our electric company to ask them to list us as critical for electric since a lot of Jude's life support measures are dependent on electricity. I sent a letter via fax explaining the situation signed it and then cc'd hospice and Jude's doctor. After I faxed the letter it took probably fifteen minutes and I got a call from the electric company. The customer service agent explained that to list Jude as critical they had to have a letter on letterhead signed by the physician or otherwise they wouldn't mark him critical. I get it......people lie all the time, it's sad but they do. However after I hung up the phone and started the process of getting a physician to take the time to send this over I began to think. Sometimes I feel the customer service in our amazing country is lacking. I try so hard at my work to go the extra mile for people. Although I understand why they need the letter I thought about the call itself. If she had said "Ms Ortiz we need physician confirmation to authorize this change so may I have a number to call the doctor?" or "I need to get a letter of confirmation, may I have the number to the hospice company to request one and then I can follow up with you". What a difference I would have felt. I would have been so impressed with her company. Rather than feeling like I have yet another step just to get something accomplished for my son who is fighting so hard. I am not upset so I don't want anyone to think I am. I am merely expressing an opinion on the subject and how the situation made me feel. My husband says I am irrational because I expect people to act like I do. Maybe he is right or maybe society has just gotten so busy in today's world that we have forgotten how to be nice. I feel some businesses have made so many changes to the way they handle customer service that we as a people now lack that personal touch we used to have. I can remember the days with my parents as a child when people would pump our gas for us. There was a time when our groceries were carried out of the grocery store and loaded into our vehicles. These things aren't needed and probably take up to much time but they were so nice. I have clients that tell me all the time they pay a higher premium just for the customer service my office provides. We aren't perfect but we do try. 

Jude was doing well until yesterday at about 3:30pm. Since then he has had some issues including a fever that Charlotte walked into today. We will see how the weekend goes. 

Wednesday, May 6, 2015

Mothers day drama and Jude's hospice visit

The hospice nurse came by last night to evaluate Jude's condition. He had been very lethargic or sleeping all day. He is sleeping a lot more these days. She said she believes this could be a natural decline in Jude's condition and told me what we will probably be seeing over the next few days or weeks. She said his oxygen levels will most likely start lowering and our new normal (there is that phrase again) will range between 90-95. I asked her about the oxygen/heart monitor and she said eventually we might just decide remove the monitor so it doesn't drive us crazy with alarms. She asked if I was still working and I nodded my head yes to her. She just shook her head and smiled at me. 

Jude's vitals actually look pretty good. His oxygen is running about 95-98. His heart rate is high running between 140-160 but I am assuming that's because his body is working harder. His color is good today and I got a small smile after much coaxing this morning. Charlotte said she was getting him up today to shower and then putting him in the wheelchair. I will be interested to know if he stays awake and happy or if he drifts back off to sleep again. Charlotte mentioned this morning how a year and a half ago Jude's breath sounds would have landed him in the hospital. However today we are just happy to hear air movement in his lungs. 

I dreamt of my children last night pretty vividly. I was chasing Emily and trying to keep her safe. Poor Emily she probably feels like I smother her because I worry so much about her driving and being a young adult. Letting go of one child into the world while trying to let go of one leaving our world is taking a toll. For the first time my dreams of Jude were peaceful. He was laying in his bed and I was talking to him softly telling him that everything will be okay. I dreamt I was stroking his hair and he looked so calm and sweet. I think these dreams were sparked because the hospice nurse was reading over the notes and one of the nurses had written "being held by mom is very effective". She was referencing trying to calm Jude's condition and making him feel better. 

This morning I saw an ad on Facebook from WFAA news. They were asking moms to post their mom moments and tag them at #wfaamoms. I wondered what I would post if I was going to participate. Would I post a great picture of Emily and I on some pageant excursion or one of Jude when he was little and healthy? What if I posted what some moms that are now in a different demographic actually go through? No one wants to see a sick child on a holiday but maybe it would be a reminder to moms to love and appreciate their children a little more that day. It's been a week of reminders with Jude. I walked through the boys aisle at a store and had a flash of emotion involving anger and sadness as I looked around at all the items Jude cannot use.  The mothers day gifts flooding the aisles also made me a bit sad.  These commercialized holidays have a way of stirring emotions. However I am also grateful. I am grateful for this time I have with Jude and that I have an amazingly beautiful and healthy daughter who shares this life with me. So for the moms out there who can no longer hold their babies I am truly thinking of you this week.