Wednesday, October 28, 2009

Day +34 (The first twenty-four hours ...)

Yesterday we were excited, anxious and actually a little bit sad to finally leave Children's Hospital. The last twenty-four hours have been a whirlwind as we are trying to negotiate life on our own again. There are many new and important details to living in the outside world with an immune suppressed child.

Our first night was a bit comical, after the fact. We had to draw and administer what seemed liked a Longs Drugs of medications, and we had to connect a bag of nightly hydration to Hunter's Central Line. The medication part wasn't too bad. It certainly helps that one of us has a background in pharmacy. Hunter doesn't mind taking the meds orally, and everything is written out for us on a spreadsheet.

Connecting his nightly bag of fluids was another story. We got everything ready thinking we'd have plenty of time for the fluids to finish before we needed to leave this morning for Hunter's outpatient appointment. We might have had enough time if I hadn't spiked the bag with the IV tubing in the wrong opening. In my defense the bag the Home Infusion Services team used during our instruction at the hospital was completely different than the bag that showed up at our apartment. Luckily, after a lot of cursing, machine beeping, Hunter crying and a call from the Home Infusion nurse on duty, we figured out how to correctly spike the bag and connect Hunter to his necessary hydration. Definitely not as easy as the practice dummy we used the day before!

Now that we are at the Ronald McDonald House a concern we have as parents is keeping ourselves well rested and well fed, which isn't always easy. We found ourselves running out the door this morning to Hunter's outpatient appointment without eating breakfast. As Hunter's primary caregivers we realize we need to make a conscious effort to take care of ourselves, including flu shots tomorrow.

Hunter is doing well. His ANC is about 5,000 and his new marrow shows signs of creating platelets! Hunter's platelet count increased on its own (for the first time) for three straight days. He currently has 50,000 platelets. Those who've followed Hunter's journey from the beginning might remember he's had less than 5,000 platelets for the majority of his life. We are excited to see how these numbers continue to improve. Hunter's outpatient appointments, presently scheduled two days a week, will be adjusted as needed.

Hunter struggles some to get around on his own, but has improved just by being out of the hospital. He doesn't have the balance, stability and endurance he had prior to being admitted. However, he certainly has the tenacity. We look forward to getting him involved with the Physical and Occupational Therapists soon. Hunter's speech has picked right back up. He talks nonstop, asking question after question and telling stories to people without any reference point. If you ask him a question like "red or blue?" he'll answer with an "I think" at the end. "Blue I think."

It's definitely colder here in Seattle than what we are used to in L.A. When we go outside Hunter wears a hat to protect his bald head. So for the first time in his life, he is wearing a baseball cap with a hoodie pulled over it, certainly a glimpse of the not too distant future.


  1. This is all great news! Take good care of yourselves and enjoy the freedom : )

  2. La vie qui commence maintenant n'est pas un long fleuve tranquille mais elle vous réserve de bons moments avec "Baba le collectionneur de casquettes de base-ball"... I think !
    Sylvie et les marseillais

  3. Ha awesome is Hunter! It gives me such a thrill to read this...I can't tell you enough how grateful I am to be able to read such wonderful posts and that you are sharing this process (ups and downs) just makes me feel so much more at ease with what we will be going through ourselves with Max...Thank you, Thank you, Thank you!! xx