Our first weekend home with Atia, after her leukemia diagnosis, will forever be etched in our memories. It was a life altering experience.
We were excited, overjoyed and celebrated the fact that Atia was well enough to be released from the hospital. Our baby girl was coming home! Back to our condo, back to our normal lives and familiar surroundings, but everything had changed. Nothing was the same.
At the hospital, we had been functioning as if in a dream; everything felt like it was in slow motion. Medication was measured and given; vitals were tracked and recorded; Atia's pain was assessed and treated, but always by someone else - a nurse, a doctor. When we got home, it was as if our eyes had been opened and the haze had been lifted. The bad dream became our reality.
Our emotions swung back and forth like a pendulum. Every moment seemed to demand so much attention and energy. Steve and I were absolutely drained and exhausted by the end of our first full day home.
The following is what I wrote in my personal journal that night:
We had hoped that today would be an easy & exciting day, being Atia's 1st day home. Unfortunately, it was anything but easy. Atia woke up screaming in the middle of the night shouting, "All done! All done!" (which is what she'd scream at the medical staff in the hospital when they were inserting IVs, examining her or giving her medicine). She's been so traumatized by this whole situation that we now believe she's having nightmares.
We ended up taking her out of her crib and letting her sleep with us for the rest of the night. When she woke up, she had about 2 ounces of formula from a bottle (she's reverted back to "baby ways" and "baby comforts"). We watched a little TV and fell back asleep.
When we awoke, it was time for her morning medicine. She was a trouper and only fought us on the fourth medication (she takes five each morning), but visually she looked like a very sick little girl.
Her face had begun to change - it was pale, thinning and her eyes were sunken with dark circles. It was a frightening sight. For the first time since all of this began, she REALLY looked sick.
Steve and I couldn't stop looking at her. We were near tears.
A little while later, she was hungry. We were hoping that this was a sign that the steroid-chemo side effect was kicking in (since she'd been eating next to nothing over the last few days). She had some of Nana's famous scrambled eggs with cheese, butter toast, a few bites of a Nutri-Grain cereal bar and a few ounces of grape juice.
We were happy with this and she received much praise!
We rested again briefly and then she started asking to take a ride in her little pink car. She and Steve got ready and went for a walk. They ended up at the park where Atia spent all of her time on the swing. About half and hour later, they came home.
Upon their return, Atia looked worse. She was totally lethargic and unresponsive. She was silent, weak and limp. We got her to eat a few more bites of the Nutri-Grain cereal bar and drink a few more sips of juice. Then, she was off to bed.
The changes in Atia's face and vacant look in her eyes terrified us. We called the doctor and reported that by 2:00 pm she had only had about 4 ounces of liquids (since 9:15 pm the evening before) and a minimal amount of food.
The medical team was concerned that Atia was becoming dehydrated. Luckily, our home care nurse showed up around this same time. She checked Atia's vitals and reported that her pulse, blood pressure and temperature were all stable.
However, the sunken eyes and "wilting flower look" signaled dehydration. So, we began forcing her to drink different juices. She resisted, but we didn't back down. Within 2 hours we had gotten about 6 additional ounces into her (totaling 10 ounces for the day, by 4:00 pm). The home car nurse put an ASAP order in for fluids to be given from home, via Atia's picc line.
The nurse left and Atia took a nap. When she awoke, she looked a little better. The dark circles has slightly dissipated. She was talking, requesting yogurt and wanting to play with the cats. We forced her to drink more juice and she ate two containers of baby yogurt.
We couldn't have been happier. The life was back in her eyes! She was still weak and uncomfortable (due to continued constipation issues), but at least she was alert.
The fluids were delivered around 8:15 pm. We gave Atia her three evening medications and I hooked her up to the saline bolus (a plastic ball filled with saline that drains at a specific rate). Its purpose was to rehydrate her. She was to receive two doses of it for the next three days.
We cuddled a bit. She drank a little formula and then she asked to go "night night" in her crib.
Other than the day she was officially diagnosed with Leukemia AND the first time she was put under anesthesia (for the bone marrow biopsy and picc line placement), this was the scariest day of the treatment.
Being home seemed like a blessing, when we were first told we were going to be able to leave the hospital, but it's been so scary. We lack the medical staff to help us identify when or if there is a real "problem" and to track her vital signs.
There were several occasions today when we were frightened for Atia's life. She looked like she was dying (I know that's an extreme statement, but it's how Steve and I felt during this experience).
We both cried at various points throughout the day. We are hoping and praying that tomorrow will be different and much better...