Diagnosis: Part...Oh, forget it

I thought I had it bad when Tessa was just born. Waking every 3-4 hours to nurse her, diaper changes, exhaustion. I had no idea. Woke this morning feeling as though my head was a glazed donut: fluffy, filmy on the outside, and a gaping hole in the middle. We've been waking up every 2-3 hours to administer meds, carry Tessa back an forth from the bathroom (she's been unable to walk for about a week and a half now), wetting the cloths, getting milk, ice packs, etc. I get about 3-4 hours of sleep a night spread out over 8 -9 hours or so. Something you should all know about me is that I like my sleep. I NEED my sleep. Without a solid 8 hours of sleep I turn into Mr. Hyde's creepy sister. Now I feel as though I've managed to keep my composure fairly well, but the sleep debt is mounting and I'm losing my cool. One might even say that I was a bit "bitchy" with the doctors today.

That brings us to the day's adventures. We'll leave out the bit about Tessa's misery as I'm sure we're all well acquainted with what that looks like by now. The fabulous Auntie Katie brought Sam and Elle, and Tessa's new honorary cousin Jennifer over for a visit. Jennifer and her sweet mom got Tessa a totally adorable doll sized pair of flannel pjs and sleeping bag. Thanks ladies! Tessa is so happy that Apple Dumpling Tessa (her baby doll; yes she named her herself) can sleep next to her in bed because she is no longer "pokey" in her new sleeping bag!

I'd also like to add that yesterday Tessa got a visit from a couple of her other fabulous cousins, Haley and Alyssa. Not to mention the fantastic Auntie Julie! I'm told they read to her and made her smile (as they always do). I don't know since, upon their arrival, I announced that I was going down to bed. 

At noon Nana, Poppie and Auntie Jenny showed up and we all caravanned to the hospital. The first thing we did was get a blood draw. It seems as though we can expect that nothing will go smoothly. Blood draws are particularly stressful for Tessa. We apply the lidocain cream to the crooks of her elbow about an hour in advance to numb the area. The pokes are not painful as a result, but she still becomes highly anxious escalating to panic once in the chair. For some reason all of the poor lab technicians feel like they should try to charm her before sticking her in the arm. As a result Tessa is sitting in the chair on Casey's lap shrieking and hyperventilating, the technician is making small talk like "Hi! What's your favorite color?" or "My name is Coco (all names have been changed to protect identities), how are you?" and I'm glaring at them muttering "Can we just do this?" Not pretty. Today the technician, let's call her Fumble, took around ten minutes just locating a vein. When she got the needle in she filled up one syringe (they take a LOT of blood for all the tests they run). Fumble kept messing around with the needle until it freaking fell out! Um, really? I'm holding the poke sight closed and have blood all over my hands and she says, "Oops! I didn't get enough." So she has to go into the other arm. I'm pretty sure I don't need to explain what the sleep deprived creepy Hyde sister wants to do at this point. 

Anyway...

Tessa is fully traumatized at this point and won't let me go. We go into a consultation room to meet with the doctor to get results of the bone biopsy. Every time a nurse or doctor walks in Tessa freaks out. She's exhausted and in pain. She finally falls asleep in my arms. A small while later one of the oncology docs who is filling in for our primary doc (whose been out all week on vacation) comes in to report that at this point there is nothing new from the biopsy. Why am I not surprised. We give her the low down on what has been going on lately, and she becomes concerned when we start talking about some of Tessa's new behaviors (frequently jerking awake in fear, twitching when she sleeps, irritation). We try to impress on her the level of trauma and pain that Tessa has gone through, but she remains unconvinced and brings in a neuro doctor. He does a quick assessment and concludes that her brain is probably fine and that she's been through hell. 

Our day wound down in the Pain Management Center where we met with a wonderful doctor who we met on Monday night. She was the anesthesiologist for Tessa's surgery and stayed to talk with us extensively that night. We requested that she be on our pain team and made the appointment for today. As of tonight Tessa has started taking Methadone. Most of you will know this drug as the one that is used to ween heroin addicts. For our use it is a long acting pain relieving agent. Once the drug is fully in her system (about a day and a half) and we have the right dose she will only need to take it twice a day, as opposed to the short acting Oxycodone every 2-3 hours. We will still be giving her the oxy on an as needed basis, but we are hopeful that this will be greatly reduced. Most exciting is that her pain will be better controlled, she'll be feeling good, and best of all we can all get some sleep! 

Ok, I've rattled on long enough. Get back to real life people, but keep us in your thoughts and prayers!