Sunday - September 23, 2007

Sunday, September 23, 2007

Day +75. Sunday. Family day with Grandpa Ted and Paulette.

ZZZZ: Jessie and mommy snooze a lot of the morning...Jessie sleeps while perched on the commode, cushioned by lots of pillows. It seems that 2 weeks in ICU are catching up, and we’re very tired a lot of the time. Go figure.

FAMILY: Grandpa Ted and Paulette arrive and spend the afternoon with mommy and Jessie at the hospital. We read some more James and the Giant Peach. Do crafts with colorful pipecleaners. String the BEADS that Jessie has earned for the Bead Project since surgery. And play a lightning round of Uno, with lots of snickers, reverses, draw4s, and other tricky cards played against each other. 

Jessie’s appetite has been returning. Well, hey, she ordered from Bertucci’s the first night we got out of ICU and returned to 6West. And she’s been craving linguini and marinara sauce every day since then. Today she diversifies, by munching some black olives and some pretzels, too. Also, she sips some chai tea. Woohoo!

GETTING READY TO GO: Reprisal of conversation with Jessie, after she’s heard mommy state, several times, that there’s nothing between us and discharge, except remaining stable, getting stronger and addressing things like fevers:

J: Mommy, did you say we can get ready to leave now?

M: Well, yes, now that your surgery is over and we’re out of ICU, we’re just back on 6West long enough to get ready for discharge.

J: How long until we leave?

M: Well, the team will tell us the things we have to work on to be ready to be outpatient.

J: Like what?

M: Hmmm. You have to be strong enough to get in and out of bed with the help of only one adult. And stand and walk a little. And you have to be able to take oral medicines. And eat and drink enough. 

J: Well, I’m doing all that! So when can we go?

M (smiling): We also have to take care of the fevers. You know about fevers. 

J: But when do they think?

M: Well, they think another few weeks, Jessie.

J: But I’m doing everything you said!

M: Yes. Mostly. But they have to get us ready in other ways. Make sure we’re stable. Change other medications over to oral ones. Get you off some medications. Be certain your lungs are strong. And however else they measure stability. We have some more work to do. But mostly, you’re doing everything they ask us to do. You’re doing great. So all we do now is rest, get stronger, cooperate when they ask us to do things like take more medicines by mouth and eat and drink and exercise.

Jessie sinks back into the bed. But she has a new image in her head. An image of herself leaving this place. BELIEVE!

LAST NIGHT TOGETHER: Daddy and Sarah spend the morning at church, and enjoy the guest visit of Rev. Jean Simpson, as well as the leadership of Ray Morley and Rev. Rebecca Brown. Then Grandpa Ted and Paulette return from Boston, and spend their final evening in Ipswich. The family orders out from Choate Bridge Pub, so that they can hang out, and Sarah can finish her homework. Tomorrow, they’ll finish their visit in Massachusetts with a trip to Cape Cod to see old family friends. Next time they visit us, we hope that Jessie will be outpatient, and we’ll be navigating the boundaries and rules of isolation precautions outside a HEPA-filtered environment (for instance, once she’s discharged, she can only be indoors with immediate family or a tutor or medical care providers...all other social contact must take place outside in non-public settings, like backyards or uncrowded open spaces).