Friday, April 24, 2015

Kid down! Kid down!

Ever have one of those moments where you think "you have got to be shitting me" (forgive my language). I was all about that sentence last night as I realized my daughters sickness was just not getting any better. 6-8 weeks ago she went to Care Now and received an antibiotic shot due to what they thought was a sinus infection. Emily is rarely ill so we figured she would quickly recover but she didn't. So then we saw the Doctor on Demand........twice. They originally diagnosed a continued sinus infection and ordered antibiotics and a steroid.  She got better for awhile but then she started showing symptoms again. So then they said they thought it was viral. Per the ER last night they would have diagnosed the exact same thing based on her prior symptoms........but now we have a never ending consistent cough. Emily has walking pneumonia........no I am not kidding. Basically the exact same highly contagious form that Jude had in ICU. I mean really? So she is at home prescribed an antibiotic for respiratory issues, 50 vials of abuterol, and a steroid. If you have called and I have not returned your call you now know why. 

To top it off when I rushed Emily up to the ER our nurse had still not shown for the night. So I get to the ER and my phone keeps going off with the nursing agency calling. I asked my husband to handle it and it turned out the nurses car overheated. Bear in mind that Jude was at home very ill last night. Luckily they got a replacement nurse. We all got in bed about 1:30 or so. I then kept waking up about every hour to check on Emily and peek my head out at Jude. I am tired and I would like to go home early today but that won't happen. 

The good thing is Em was in a good mood and although sick is toughing it out with a smile. 





Tuesday, April 21, 2015

Is okay to let go

Something has become very apparent to me this week and that's the fact I am not as strong as I used to be. I have always been extremely resilient and I tend to take the lead in stressful situations. However we had a nursing situation come up today and my husband recognized that my stress level has officially overflowed. My guess is that he may have recognized it months ago. Regardless when I mentioned the situation to him he took over without hesitation and even told the agency that they should no longer call me. Then tonight Emily was watching a funny you tube about a mom who could not handle her child being stubborn after his wisdom tooth surgery. She jokingly said "that would be you". I suddenly felt very overwhelmed with a sense of failure because it's obvious I have shown weakness when I needed to be strong. I began obsessing over the fact my child thought I was not good enough but then..... I decided to stop obsessing. 

I halted everything and realized that my life has not been easy and it's okay that for once I just hand everything over to someone else. I realized that I don't always have to live up to what I think people expect me to be. The truth is my true family will love me no matter who I am.  It's okay to allow my husband to be in charge and I promise to not judge the fact he forgot some of Jude's medications tonight, lol. As I held Jude in my arms tonight I felt little pressure to do anything else. The dishes, the laundry, and the messes will be there tomorrow ... but we may not. So it's okay to shut down and let someone else take the load. It's understandable and it will all be okay.... eventually. 

I guess this coincides with the blog I posted about changing who you are due to a tragic situation. Sometimes that change isn't easy but if you pay attention you will realize the change is needed.  If people don't understand you just have to believe that they will at some point.

Jude is pale and sleepy but he is full of smiles so I will consider this a good day! 


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Monday, April 20, 2015

Emily's big win and Jude's fever

I am exhausted but happy. It was an amazing weekend with friends and watching Emily compete. I was able to sip some wine and enjoy great conversation with really good people. Emily and her friends did very well at the pageant. They seemed to truly enjoy their time together and I think it helped relax them all. Emily looked the best she ever has this weekend and radiated with confidence when she was on stage. Emily has struggled a bit in the past with interview so this weekend she said she was just going to have fun and be herself. I am so glad she finally registered that she should just be herself and let her personality shine. When she came out of interview she was just beaming with joy because it went so well.

I have to say that I am very proud of Emily but not just for doing a great job. I am proud of her for not giving up because I would have. She was determined to use each competition she didn't place in and each disappointment to better herself and try again. Due to her determination and hard work she succeeded and reached her goal of being Dallas Teen USA. Now Emily will be sponsored to go to Texas teen in November and obtain her goal of getting in the top 15 and maybe even Texas Teen USA. I say we all road trip!




I think one of the cutest sights this weekend was when we looked up and Emily's cousin Faith that competed with her was bawling because Emily won. She was so happy for her the tears just flowed.




Unfortunately when Emily and I got home Jude didn't look that well to me. He was pale and restless so I took his temp and it was 99.3. I gave him some Motrin and let the night nurse know. I heard Jude's alarms go off throughout the night. I got up about 6am to check on Jude and he was burning up to the touch. I took his temp and under his arm it was 101.7. So I again gave him Motrin but then his heart rate got out of control due to the fever and it spiked to over 200. I got some wet rags and more to try to bring it down and gave him some Morphine. Eventually it went into the 160's so I felt comfortable enough to lay back down for awhile. When I was leaving for work he still had a low grade temp and he looked very pale but he was smiling at me. If he is responsive during a temp that's good. So I know Charlotte will work with him today and I am sure Hospice will go by to check on him and see what they think the course of action should be if any. Hopefully he is feeling better soon.


Friday, April 17, 2015

A hard watch.

I always tell Emily that everyone has a story it's just that some stories are harder than others so be sure to make yours count! 

This is hard to watch but a reminder that when you feel you cannot go on anymore you really can. What courage he has. I question sometimes why children have to suffer and I honestly don't know the answer. However I do know that recognizing courage and bravery in others brings out the positive in yourself. I know Jude cannot speak like Jonathan but I hope people find  inspiration in Jude as I have found in this little boy. 




Thursday, April 16, 2015

Dr Happy Heart and the funky bunch

I went to see the doctor today. I had to share my conversation with him. After his initial assessment he proceeds to tell me about some tests he wants to run and he and the nurse come in and out of the room

Dr Happyheart: We want to test your thyroid. 

Me: My cousin said that's what's wrong with me and she knows all! Thyroid issues run in my family.

Nurse happyheart: Do you prefer one arm or the other for blood?

Me: No arm?

Nurse happyheart giggled. 

Dr Happyheart: we want to run a stress test too. I really think this will come back as something we can control and nothing serious. 

Me: Good but I can tell you the result of the stress test. I am stressed. Also, before you say it I know I am not at my ideal weight. I know all about working out and looking fit. Before my son I used to work out 3-5 times a week and ate super healthy. Now I walk through the door from work and take over an Rn's job for 5 hours until the night nurse gets there and then I just want to crash. SO my exercise consists of letting my German Shepherd pull me around the neighborhood. Make no doubt though I used to be super cute. 

Dr Happy heart giggled. He then put me on some medication and they set up the future tests. We will see how it goes but I am not to worried.  Basically my gathering is this could be from high blood pressure, exhaustion, and lifting Jude......but we will see. 

Jude's alarms went off all night long. His oxygen would dip but then he would quickly recover so all night I would hear beep beep silence. Cough cough, beep beep, silence, cough cough........you get the idea. Poor little guy. Nurse Allen is on shift today and he said Jude had a fairly rough morning and even threw up and it was yellow........no bueno says the mommy. I am off to Emily's weekend tomorrow night and will be checking in regularly with the home front. 


Tuesday, April 14, 2015

An ER visit and Jude is smiley

So yesterday as I was talking to my co-worker she noticed I kept pausing to take a deep breath to finish my conversation. It's almost become habit for me now. I also still didn't feel very well. So she convinced me to go to the ER. I didn't text or call anyone except Emily and Mike. I didn't want to alarm anyone until I found out exactly what was going on. Basically they ran a battery of tests. I was tachycardic but I always am a bit, elevated blood pressure, and needed some oxygen. Their tests basically showed it's exactly what I thought and nothing life threatening. The doctor did say he believes their is an issue but since it's not life threatening he said it could wait until the doctor visit on Thursday and gave me a host of paperwork to take with me. He also said he believes I have some pleurisy near my upper sternum. This could be the sole cause but I will find out. I am happy my intuition was accurate. After Thursday I am sure I will be back to my old self very soon.

So I had my window fixed in my van yesterday and on my way to work today as I was driving down the highway my drivers side door just...........opens. This was so my luck that I laughed out loud. So I called the shop and they sent someone to my office to fix it, whew!

I was so tired after my adventure yesterday that I only got up once to check on Jude last night. He still has his cough but nurse Charlotte said he is up in the wheelchair today smiling and only using 2 liters of oxygen. Hopefully he will continue this trend for awhile.

Monday, April 13, 2015

Jude's weekend, my heart, and Emily's pageant

Jude had a fairly good weekend although he did present with some oxygen issues. In fact on Saturday night when I waited on the night nurse I couldn't get his oxygen to hold in the 90's even on 10 liters. After lots of CPT and a breathing treatment I got it to 92. She also had some issues throughout Saturday night but as usual Jude was still full of smiles. Jude slept yesterday until 1pm then he got up for awhile and went back to sleep at 5. He slept during my shift but then was up for the night nurse. I kept hearing his alarms go off all night and he kept choking. For some reason he has started this new trend of building mucus plugs in his throat. They are larger and harder to get out than they normally are. He actually threw up twice this weekend trying to get them up. 

So I hate not feeling well. I don't like talking about it either but I am going to since I promised to be forthcoming on this blog. I had more issues yesterday which I believe relate to the blood pressure and ultimately my heart. I had sharp pinching chest pain, shortness of breath, and a host of other issues while walking the mall with Emily. The symptoms have slowly and consistently been raising their head but yesterday was a combination of events. SO here is the thing. I am pretty well versed medically because Jude's ordeal. I think I blew this off as stress and anxiety for so long that I think I may have backed myself into a corner that will require some medical intervention. I now know without even seeing a doctor I have an issue. Call it my medical intuition and reality. I am sure it will be easily will be controllable so I am not really talking about it right now and don't want to so please don't text. This is my way of getting it out there. I have an appointment with a cardiologist on Thursday........don't text me then either please it adds stress. I will update the blog I promise. I am pretty sure it's cardiomyopathy and it will be easily controlled with medication. So why post this? Because for a parent I want others in my situation to know even though people think you are a super hero.........your body is not. Sometimes it breaks down. Think about it..........if you go years upon years with accute stress and severe lack of sleep..........what do you think will happen? Doctors tell me to reduce my stress, sleep more, and get out more and I just look at them with my head cocked sideways and my eyebrow raised. They generally laugh and say, "Yeah easier said than done I know". They know.......they get it........this is life and all you can do is handle it. It will work out and be okay and if not it was all worth it but it will. I am not worried just proactive.

Emily's pageant is this weekend. She has worked SO hard and I am very proud of her. Mike and the nurses are watching Jude so I WILL get a chance to relax. I am staying a the hotel and Emily is so busy with practice and events that I think I will lay on the bed a lot and watch movies. I am hoping this is her year and that Emily's tenacious attitude that never gives up will be rewarded, but if not she is always a winner in my eyes! I will post lots of pictures on Monday.