Ashley's Story

She will leave fingerprints all over your heart


Hospital Life

After 3 years of living this way there comes a time when enough is enough. Honestly, we've just about had it. To those of you who don't want to read me blow off some long over due steam that is stemming from complete and utter exhaustion then turn off your computers now. The tone of this post won't be pretty.

So last night we were admitted to the PICU not the floor. Why? Somebody please tell me! She is stable. Beautiful vitals. No respiratory issues. Nothing different than what we have been coming to Omaha for over the last 3 months. Being placed in the PICU was a little over zealous at this time and now it seems as though we are stuck here. At least today we have been and tonight we will be spending our 3rd sleepless night in a row. PICU status means assessments EVERY 2 hours through the entire night. To check vitals, breath sounds, pupils, etc. etc. etc. That means coming into the room, turning on the lights, waking a sleeping baby, shining flash lights in their eyes(although I was asked if I wanted to refuse that portion and I said, "sure, right it down that I refuse"), putting cold stethoscopes on their chests, taking blood pressures, and temperatures. Ok, I get the importance of that in many, many, many situation, but at this time, thank God, this is just not necessary to care for Ashley Kate. She is probably the most stable PICU patient in this entire state. The reason for not moving us to the floor today? They wanted to make sure she didn't swell up and get an ilius after her biopsy. Even though our last 5 scopes over the last 3 months were done by the same doctors in this same hospital and we lived on the floor not the PICU. Explanation? There is none. Well, that was hours and hours ago and her bowel is making strong sounds, stooling, and she is not uncomfortable. Can we please go to the floor where she will be allowed to rest and heal? Nope. Not happening. OK, I'll do my best to deal with this situation, but honestly I'm extremely grumpy and having not one nurse tonight but two entering our room every two hours to wake us is not sitting too well with me tonight. Nothing personal, I like the nurses, but I don't like hospital life and this is exact situation is why.

Unless you have lived or are currently living in a hospital and have experienced this first hand then I'm pretty sure you are thinking, "What's her problem?" I warned you this post wasn't pretty. On top of all of this I'm not a parent who is fond of having strangers given the right to wake up our baby and place there hands all over my kid. Sorry, but its about the most frustrating loss of control I have ever experienced.

Ash and I are beyond tired. I'm not feeling very cooperative tonight. If I could lock the door on this room then I promise you I would. Its just where I'm at during this moment. I'm so sorry for venting but its better I do it here than open it up on some innocent person who is just here trying to do their job.

So my puffy, pig tail, pink clad, baby girl is sitting in the middle of a huge hospital bed with Frosty the Snowman playing on her little DVD player and Blue playing on the large TV. I know she's wondering what in the world I was thinking choosing this place over Disney World. Somebody please wake me up from this nightmare. I'm beginning to wonder about that myself. She remain fever free, no indications of being ill other than high stool output and low sodium and albumin levels.

How did I know to take her in to the hospital? All I can say is that I know her well. I can look in her eyes and now that somethings not right. I could tell her energy was dwindling and I needed a set of lab work to see what was going on. An ER was our only option. We also knew that once we "pulled the trigger" our vacation would be over and we would be on a flight to Omaha. What do you do? Even though nothing is being done to treat Ashley's rejection yet, and even though she would have been fine to finish the last two days of our trip once she was given some sodium and an albumin bolus, and even though we would have happily boarded a plane Tuesday afternoon to Omaha instead of Texas, the moment we entered that hospital we knew our decision making power would be taken away and we would be on that plane. That is why we are here. We knew all along, as did every one involved in her care, that she was still healing from ongoing rejection. It is no surprise to us or to them that we are back in Omaha. Last Saturday when being discharged it was left "open ended" as to whether or not she would need to return.

Why does she keep rejecting or why can't they get it under control? That seems to be the million dollar question. Basically medicine is a guessing game. You guess as to what you think will work and if it does then yeah for you, but when it doesn't they guess again and again and again and hopefully something that you try works. So far nothing has done the trick this fall and winter. She is in rejection. I don't have to read the pathology report to know that. Her scope showed some "ugly" areas of tissue and some "healing" areas of tissue. Exactly what the last 4 have shown us. What are we going to do? I haven't been let in on that piece of the puzzle just yet. Perhaps tomorrow? Anyway, I'm starting to feel a little more under control. I suppose I will attempt a shower tonight( each time I have tried today there has been a line) and then make myself a pallet on the floor of this room in the PICU(even though its officially against the rules. If you haven't noticed I just don't care about hospital policy these days) and try not to cry myself to sleep. I'm already missing Dave, missing my kids and missing our home. It hasn't even been 24 hours yet and who knows how long we'll be here this time. Hopefully tomorrow will take us back to the floor to the room we were "living" in a week ago(where I am told still smells like us. I love that!) and to a private bathroom, shower, the ability to sleep in pjs, lay down on a pull out couch, play on our rug, and make the best of our hospital life while being surrounded by friendly faces who truly want for Ash to get well and be on her way home. Thats my prayer tonight. Please get us to the floor where we can try and make some sort of "normal life" out of our crazy one again.

I promise a slide show is on the way. I'm just having a hard time putting it together. Thanks for listening to me rant. Tomorrow's got to be a better day. I hope.


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