Ashley's Story

She will leave fingerprints all over your heart

5/23/2010

Here We go ...Again

In case you didn't catch that...we are back in the hospital with Ashley Kate. Symptoms returned and she went down hill very quickly. Dave had her with him in Bossier this weekend in the RV at Blake's tourney and I was with Allie in Tyler at hers. He said she began vomiting around 3:30 this morning and in less than 12 hours we were in the same shape we found ourselves in last Sunday. It happened really, really fast this time.

Since her discharge she has been feeling great. Completely normal. Playing, smiling, laughing...living. No sign that she had even been inpatient except for the bruising all up and down her arms.


The hardest part about these admissions is that Ash no longer has a central line. Her line was pulled on her birthday last year and she has been without one ever since(the longest amount of time in her life!). So no line = multiple sticks. Many, many, many sticks and attempts at IV placement in her tiny arms. Ash has NO muscle tone or flesh on her arms. They are the tiniest, most skeletal parts of her entire body and the needles tear her up. Today was rough. 5 attempts with a bossy, take charge, "know it all" nurse that didn't sit well with me. She finally quit trying and the next nurse who tried did NO digging, NO struggling. Just one stick and she was in a vein with a patent IV. If I have learned anything over the last 4+years its this...ATTITUDE is everything in nursing care. Give me a kind, compassionate, understanding, nurse and things go so smoothly. The harsh, "I'm in charge", get out of my way while I take over your baby NEVER works. I truly wish their were personality testing that was a must pass in nursing school. 99% of our nursing staffs have been THE BEST people I've ever had the privilege of meeting. Its that 1% that can make a day in the hospital the longest of your life. So hears the deal...don't TELL me what your going to do. Discuss it with me. Don't tell me I don't know what medications she's taking at what strengths. Trust me I do know. Don't lie to the physician and tell him I was unsure about what the dose was. I KNOW what dose I've been giving every single day of her life. Don't act like you are going to take charge and run what is happening in our room. TRUST me...you are not. I'll ask for a staff change quicker than you can say it. We've been down this hospital road a time or two and I am a very competent parent who will stop at nothing to make this the easiest on my daughter as is humanly possible. I am kind, considerate and very easy to get a long with if you are the same. If you are not then you have NO idea what your getting yourself in to. She is our daughter, not just your patient.


Whew...thanks for letting me get that out. I'm actually at the house packing bags for Ash and I while Dave is with her. I'm trying to get things settled for the kids this week. Allie is out of school and will now be home alone for the week. Blake has finals this week and I need to get things in order and make it as easy as possible for him to function while I'm gone.

Ash is weak, dehydrated, and vomiting. She has low stool output which is a good sign. Her kidneys sluggish once again and she spiked a fever early this morning, but it broke quickly. We are not sure what is happening. There are no obstructions or dilated loops of bowel that we could find on film. Our hope is that we are dealing with a stomach bug. The "R" word is about as filthy of a curse in our home as you could imagine and it has not been mentioned out loud. I think it has been thought a time or two, but at this point no biopsy has been scheduled. For now we are staying put in Shreveport and it is my prayer that we will go no further.

I'm hurrying back over as fast as I can. My day started with a 6:30 drive to Tyler. After 2 soccer games I drove over to Bossier to see the championship game in the baseball tournament and then went to the hopsital. After a couple of hours I brought the kids back to Longview and now I'm headed back to Shreveport and Dave will return to Longview so he can be in the office in the morning. Lots of highway miles. Lots of driving. This is our crazy life. The only part I would trade about it is Ashley's shaky health. If I could give her a healthy body and normal life then I would in a heartbeat.

I will have no access to the blog while in the hospital. All personal sites are blocked. If Dave gets a chance he will update between office visits. Thank you for all of your prayers.

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