Jude's rocky weekend

Jude has not had the best weekend. We were able to get out for a bit but I worried about Jude while we were gone. Tonight Jude had a hard time keeping his oxygen up and had very thick secretions. With all his symptoms it seems Jude is fighting a mild case of pneumonia again. Jude is a fighter and has done pretty well out of the hospital. So hopefully he will do alright this time. We have stayed on top of breathing treatments, suctioning, and repositioning. We will see how Jude does tomorrow with Charlotte and I plan on calling the hospice doctor too. Good thing is I just came to bed and I don't hear any alarm with his night nurse. 

A quick little stormy update

I am sorry I haven't blogged in the last few days. I have been fairly busy at work and home. I am also considering building an ark because it will NOT quit storming in TX. It seems mother nature is having some serious mood swings. I am now officially over hearing that we needed the rain because we have far exceeded that and people are losing their property and lives. 

The positive side of things is that Jude has been doing really well lately. He had a rough day and night over the weekend but besides that he has been very alert and happy. His congestion seems to be controlled with the suction or medications. His fever comes back every now and then but again it can be controlled. His color is good, his eyes are bright, and his smile is big. He loves being held right now and is very "talkative". So for right now Jude is thriving outside the hospital scene. 

We will take the positive days! 

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. Well............it'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. 

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. 

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 roses.............is 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! 

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. 

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. 

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. 

Not the best day

Today wasn't an easy day. We have these days more often lately. It's hard for Mike and I to get out of bed each morning and leave Jude to go to work for the week. I don't mean to sound entitled but there should be something set in the universe that if your child is terminally ill then you become independently wealthy. Okay well how about just enough to pay the bills and eat? Then there are less stressors in your life.

Jude didn't look well again this morning when Mike and I left and we were both focused on his condition when we got to work. Mike ended up leaving work early but I was so busy I toughed the day out. I had a conversation via instant messenger with my cousin this morning and I believe if I share that with you then you can understand the summation of my feelings. 

Sarah: How are you? I had a break and wanted to check in
Me: Frustrated. How is it there? I picked up several things for Hanna I will drop off.
Sarah: Why frustrated?
Me: Hard to explain. Jude was so sick this weekend and I wasn't sure he was going to make it. Then he recovered but now he seems sick again. It's like I don't want him to pass but it's such a roller coaster. I love him dearly and I panic even thinking about losing him. I just wish there was a book that outlined what was going to happen and when. I am so spent.
Sarah: That's totally understandable. It sounds like it's really hard on you to watch and really hard on him. You want his suffering to be over but you don't want to lose him.

EXACTLY.

I wasn't going to share this video but THIS is what we see. This was our Friday night and this is SO hard.

Then he will recover and look as adorable as ever smiling beneath his oxygen mask. This kid can have minimal lung sounds and still smile. 

Then I saw this while I was scrolling through Facebook and I thought HOLY CRAP that's spot on today! It may be negative and over the top but it's fitting. 

So then I began to look for things that would put me in a better mood. This is about Jude not me and I am not going home to a fighting little boy in a pissy mood. Talk about not fair. 

Leibe makes me happy. Talk about unconditional love. Now if I could only train her to run to the store and fetch me a bottle of wine she would be perfect.  

Maui makes me happy which is where I took this awesome photo. I was proud of this shot. 

Emily's win makes me happy and that she will compete in November as Dallas teen! They told all the girls not to cry if you won due to pictures but she couldn't help herself. 

A healthy Jude. A healthy little Jude made me happy............

Cough cough Jude

Last night my husband encouraged me to go to a party my dear friend was hosting for the much anticipated pay per view fight. I am not a huge boxing fan but when I heard my husband say that Jude's situation is enveloping me I decided I should venture out. I went into the bathroom and ran my hand down my very pale and fluffy face but then I packed up the deviled eggs I made and we went to the event. I had fun seeing everyone and it was nice talking to others but my mind was constantly on Jude. I am sure I seemed tired and distracted.

Remember the amazing nurse I mentioned yesterday that scooped Jude out of my arms during the horrible night he had? Well she called in yesterday evening.  I think "the horrible night"  was all just to much for her and I would never judge her for that. I hope she comes back next week but through my blog we have all learned that may not happen. The night was extremely emotional and she knows how sick Jude is, she even told me she was surprised Jude is still fighting. So Carol filled in last night and about midnight she texted me Jude was not having a good evening and she had exhausted all measures I explained we were less than five minutes from home and we would be there soon to help her. After evaluating the medications she gave Jude I decided to hold off on giving him anything else and I picked Jude up like I did the night before and carried him to the couch. I sat and stroked his hair kissing his cheek and told him all would be okay. Slowly he drifted off to sleep and Carol took a deep breath. She said "You are his hero"...........and I said "Oh no...........you don't understand........he is my hero". She just smiled and said "Then it's a perfect fit."  I then laid Jude down in his bed and told Carol I was going to get ready for bed. Then as late as it was I poured myself a large glass of wine and soaked in a hot bath for probably an hour!

Jude looks much better today!! However his situation changes hourly. There are some things that I am noting. Jude is having frequent coughing attacks that he is having a hard time recovering from. His nurses can no longer hear any breath sounds(at all) in his lower lung lobes. When Jude coughs he doesn't get many secretions out which in itself can be a negative situation because his cough is no longer productive. Again there is no time table on Jude and seeing how I got some great smiles today I think he is still fighting his good fight.

Tomorrow I go back to work and on lunch I have decided to start working out again. Maybe it will help my overall demeanor and help my physical well being. Combined with walking the dog each night I might just shed a few pounds and spark a cute trend.

A rough night and all my minutes

Tonight was rough and it's one of those nights that I'm finding it hard to write in my blog so I am forcing myself. Not only is it therapeutic but I know it helps others. I was really looking forward to seeing Jude when I got home from work. As usual the day ended with a plethora of chores including making dinner, a milk run to the store, and walking the dog. Every time I passed Jude I promised him I would hold him tonight while we watched a movie together. He would shoot me a little grin and mouth "hi" but I noticed he still looked pale and tired. Suddenly Jude had one of his coughing fits to the point we were using the suction to pull out bloody mucus and his heart rate plummeted again. We assessed the blood and mike and I both noted it was bright red with a few clots so it shouldn't be internal bleeding. However Jude took a huge nose dive after that incident. He spiked a high fever, his extremities turned cold, and he was gasping for air. After rescue measures I took Jude out of his bed and held him on the couch until he fell asleep. Suddenly Jude began to get stressed again and woke up. The night nurse came through the front door and walked straight into a madhouse. She stepped in and whisked Jude out of my arms trying to rescue the situation. I wasn't sure if I should be grateful or upset but I opted for grateful. When the situation didn't get better I called hospice.

When hospice got there Jude had zero breath sounds in his lungs, had a temp of 103.1, and was gasping. After abuterol, Motrin, morphine, and more Jude calmed down and began breathing easier. I just sat and cried and felt so bad. I tried a glass of wine for my nerves but I was still a quiet crying mess. Both nurses hugged me and I looked at the nicest hospice nurse ever and said "I just want to unplug him from everything. I want to take him to the couch and just hold him and let him sleep but I don't want him to be in pain". She assured me that's an okay feeling and pointed out what was helping him. She said the oxygen helps him breathe and not stress, and the medicines relieve pain, but the monitor is just providing me information. So after Jude had all his treatments and he began to recover the hospice nurse said " I think your mommy wants you". So I scooped Jude up and took him to the couch and quietly Jude smiled at me and then fell asleep. Our sweet weekend nurse then told me she knew Jude has been very sick and she didn't want to alarm me but almost thought they would call her during the week to tell her well Jude had stopped fighting. Then she took Jude from me again and laid him down in his bed as she played "Hosanna" from her phone. She told me to go rest and if Jude wanted her to she would sit in my spot and hold him. Hospice instructed that they not refrain from Motrin, Tylenol, morphine and his other pain relievers. Jude was so uncomfortable and I hated that tonight. Hospice wants him to stay pain free. 

Mike didn't stay in the living room for all of this. At first I felt like the line from
Steel Magnolias that "men are suppose to be made of steel" but I finally got it. Mike knows Jude and he knows he isn't ready to leave us yet as sick and his little body is. I wondered and panicked tonight how I would KNOW because I want all my Jude time ..... I want ALL my damn minutes!!! Mike knows... Mike  gets it. It will just be.....just let it be.