In the Homestretch - Day 31

We're in the homestretch of the inpatient part of Olivia's treatment plan and the stress of the last several weeks is really starting to wear on us. This weekend was full of highs and lows. I'll start with some of the lows so that we can end on a high note. On Friday evening Mike sent me a text message around 8:30pm, Olivia's eye was swollen and they were going to do a CT scan. Some of you may remember Olivia's history with eye infections (for more of the story you can check out this earlier post). I dropped everything and was back at the hospital within minutes. Mike was frustrated that I came back to the hospital on my "weekend off", he thought I just wanted to be there because I didn't trust him to handle it. I was just worried about Olivia and frustrated that we couldn't share our anxieties together. The CT scan itself went well but the process of getting Olivia down to the radiology department and the coordination between the various nurses and departments involved was frustrating. Olivia did well but by the time it was all over she was exhausted. They brought in an eye doctor for a consult and the CT scan showed that there was not any infection. As soon as Olivia's eye started swelling they started her on a round of antibiotics and the swelling immediately began to go down, almost too quickly. Perhaps we were all very worried for nothing, it could have been a bug bite, or an irritant in the tissue around her eyelid. The entire experience was frightening and frustrating.

Mike spoke with Dr. Driscoll and Dr. Paul (Olivia's primary doctor) on Friday and they told Mike that Olivia was doing great! That it was looking like Olivia would be discharged later in the week, around the 26th or 27th. Great news! We called our families and began making plans, but of course that was before the swollen eye and CT scan. Now it's looking more like the first part of the following week, the 31st or 1st.

Mike and I are both tired, and stressed so we're short and angry with each other. After being "locked down" in the hospital with Olivia all week I went a little overboard over the weekend and spent too much money on frivolous things, a toy here, a pair of shoes there, a huge stack of books that I don't know when I'll ever have time to read. For his part Mike was sarcastic and grumpy and downright mean all weekend long. I'm sure that it's so stressful for him, to go from working all week then racing here to try and spend time with Olivia. He's rewarded with an exhausted wife who can't wait to get out of the hospital and a grumpy, sick, child.

Speaking of a grumpy, sick, child that is exactly what Olivia is. She is on steroids and they make her so grumpy. She's moody and angry and unhappy with everything. She cries for no reason at all and then she just screams when she gets tired of crying. Of course she smiles like an angel at the nurses and reserves her anger and hostility for her parents who are trying so hard to love and care for her. I know that she can't help it and she doesn't really mean it but that doesn't mean it doesn't hurt.

Okay now for the good stuff.....Olivia got to actually leave the hosptial on Saturday afternoon. We had planned to go for a walk in the Duke gardens near the hospital but it was raining so we ended up just going for a drive in the car. Since we were in the car Olivia was able to take off her mask and it was so nice to see her smiling face in the backseat of the car. She loved looking out the window as we drove around downtown Durham. We also stopped at McDonald's for a special treat. The dietitian assured me that Olivia could have chicken nuggets as long as we went into the restaurant to order and they were made fresh. I patiently waited for Olivia chicken nuggets, sure that she would only take a bite or two before changing her mind and requesting something else but she was so excited to hold the little box of chicken nuggets and she happily ate 3 of them! Olivia is continuing to drink 2-3 servings of pediasure a day so the dietitian is confident that if Olivia continues to eat a little and drink her pediasure then we might be able to leave the hospital without the IV nutrition. I'm thrilled as I'm more nervous about going home on IV nutrition than any of her other medications. The IV nutrition is administered over a period of several hours at night so it would mean Olivia would be sleeping while receiving the IV nutrition and I don't think I would be able to sleep at all while that was happening. Olivia also started riding the tricycle around the unit again for the first time in a couple of weeks. She's obviously feeling so much better and it's good to see her up and about.

All and all we really are in the homestretch now and I think that is weighing on all of us. Mike and I miss being a family, we are missing being together, we miss Peter. Knowing that the end of our inpatient stay is near is frustrating, we're just ready to be done with this phase, but of course we don't want to go until Olivia is really ready for the next phase. If you've made it all the way to the end of this post thanks for listening to me vent! Hopefully this week will be better!