Saturday, September 21, 2013

Jude's illness and a really late night

As I noted Jude has not been feeling well for the past week.  However, his fever has been minimal and the nurses noted good breath sounds in his lungs. However, Jude presents differently than some patients.  So yesterday we had made the decision to take him to the urgent care once we could get off work. Unfortunately, the day kept getting away from everywhere and we weren't able to get him to urgent care until after 6pm. Once at Cook's Children's urgent care they listened to Jude's chest and noted there was no fever. So they did an X ray and they were a bit concerned with what they saw so they sent us to the primary Cook's Children's hospital in downtown Fort Worth.

We went home and packed a bag because we know this drill. We then went to Children's and they took blood and reviewed the X ray that was taken at the other center. They also hooked Jude up for his vitals and noted his heart rate was very high. This is normal when Jude is running a fever, but he still wasn't registering a fever on their head swipe. I explained that Jude can hide his fever and those head thermometers don't often work with him. So they took a rectal temp and sure enough it was over 102. The doctor was concerned about Jude's heart and hooked him up to a heart monitor. I explained that a high heart rate is rather normal with Jude when he is ill, but I really think he was worried about the continuous aspiration pneumonia's effect.

About 3am Jude's blood work came back reassuring and the doctor came in to talk to us. Mike had just left to get something out of the car. I asked the doctor if they were diagnosing him with pneumonia. He said there was not doubt this was mid lung pneumonia and they saw a high levels of infiltrates. I guess the urgent care didn't know how to read it properly. but Cook's said it was a pretty bad case. They had given Jude a bag of fluids, an antibiotic, a dose of Motrin, and a dose of Tylenol. His heart rate was looking much better and so was his other stats! So the doctor looked a little perplexed and he said "I am tempted..." then paused. I said, "If you want to send us home it's fine. We have nurses at home and a hospital isn't the best place for Jude. We are well trained on how to watch him". I saw this look of relief come over him and he said, "I really am comfortable with his stats and hospitals carry so many germs which aren't good for him". I get it! I understand if this was a "normal" child he would be admitted due to his condition, but they trust us to watch him. Plus we have great nurses at home. Jude woke up today and is still very pale, but he is smiling now. He had been very pale, not smiling, and whining. So to see him smile is a big step forward.

After we were told to go to downtown our entire family got in the worst most stressed out mood. It was not a good atmosphere. On the way to downtown I was driving and the fact that Jude may have his 4th case of pneumonia in 9 months kept running through my head. I knew this wasn't good. Suddenly I felt like I could breathe and Mike said "why are you driving funky?". I replied "I feel like I am going to pass out". Then everything started spinning and I said "grab the wheel!". After scolding me Mike told me to pull over and he drove the rest of the way. I have no doubt it was just a stupid panic attack. So I told myself to PULL it together and then I was much better. Our family began joking in Jude's ER room and you could tell the nurse was relieved to have a family that was rather familiar with the hospital setting. We got home about 4am and we all crawled into bed. Jude's nurse Allen got to our house about 7am and I went back to bed. Mike couldn't sleep, but I know he will tonight.

It's been a trying week, but nothing we can't handle. I am SO thankful for my friends that texted last night until wee hours of the morning to check on Jude AND the family! You guys are so thoughtful and I am thankful for each and every one of you. It was so amazing that word of mouth traveled and people took the time to think of us during their busy lives and reach out. My most wonderful text that made me cry was "best friends forever 24/7 365 days a year until we are dead and buried". So sweet I just cried because I was so touched! I have been struggling with missing a friend so much and a situation I haven't wanted to talk about so trust I was SO touched last night.

Tonight I have to take Emily to a gala to support 20 children with disabilities that have overcome all the adversities to really shine. Emily go as Tarrant County Teen and through her charity Emily's Smile Boxes, she will be walking one of the children down the red carpet to the event. 100% of net profits fund Superstar College Scholarship Program (every Superstar Alumni is guaranteed college assistance) and their Superstar Family Support Program through their charitable partner, Ragan's HOPE ( We didn't think we would get to attend because Jude is so ill. However, Mike is going to stay with him so we can run up there for a few hours. I will be ready to get home to Jude, but I will be happy to help out some deserving children.

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