Home for a Few Days

Being home has been amazing. It has been a LOT of work because not only are we dealing with Jaisal as an active toddler and all his liver care, but now we have to deal with our own lives as well. So many of you have done a million things to help make this transition easier and I am in the process of a whole separate post expressing our gratitude. The blogging though may be slow for a bit because although I now have reliable high speed internet, the day after we got home our laptop went kaput. (It seems our model Macbook Pro has a faulty video chip that Apple and the chipmaker acknowledged as defective and were replacing for free, IF your laptop had a problem within 4 years of purchase. Conveniently ours stopped working 4.5 years after purchase and now they want us to pay $500 for a new logic board. Yeah, we're arguing their logic on that.)

Here are a few things I love about being home:

• Jaisal acting like he never left. The minute we got inside he was back to his old habits of playing with toys and destruction. I loved it. I didn't really think he'd have forgotten home already, but I didn't know what to expect either.
• Comfort. Clothes, bedding, bathroom, kitchen, etc. all at our disposal in one space. A warm, familiar atmosphere. Home. What more can I say?
• Control of our time. I can't say how nice it is to do what we want, when we want. Well to the extent that it conforms to Jaisal's schedule.

Kirk and I celebrated being home by opening up a bottle of Cooper's Hawk sparkling wine we received from Mary (Scott's mother-in-law). We promptly broke one of our champagne flutes, but managed to enjoy the deliciousness in some mason jars. It was a great way to celebrate being home.

Of course being home is a lot  more work than being in the hospital in some ways. We are now responsible for preparing and administering Jaisal's medications. This is no small feat and over the last 4 days has taken up a significant amount of my time. Jaisal receives various doses of meds at 4 different times throughout the day. Most of these meds go down easy, but there are a few that we are really struggling with and of course it is those medications that have to be administered most frequently. These are the ones that really eat up my time with trial and error. Here's a picture of our little pharmacy.

The bipap machine also has been challenging. The pulse-ox machine we got from Walgreens doesn't seem to work well on a baby, so the first night was spent worrying that our son was desatting all night. Jaisal also does not seem to be sleeping as comfortably with the mask and machine at home, so we're waking twice a night to feed him and about 6-8 other times to just make sure everything is okay. It's exhausting, but a little less so because we've chosen to sleep on the floor of Jaisal's room so that we don't have to trek the whole 20 feet from our room to Jaisal's. It's an excellent use of some of our camping equipment, since the aerobed didn't quite fit in the room with Jaisal's furniture.

So, we haven't gotten to make much use of our much beloved bed thus far since being home, but on the plus side we all get to keep sleeping in the same room. I love the smiles I get from the little man when he sees me or his dad right after waking up.

Last but not least, even though we've been home 4 full days, we've been back at Children's for follow-up appointments on two of those. The next few weeks are packed full of liver, cardiology, pulmonary, physical therapy, occupational therapy, and speech therapy appointments. Hopefully most of these will become irrelevant or infrequent after the next month.

Despite these challenges, there is no place like home and we're loving every minute with our new and improved little man.