Tuesday, February 28, 2006

The gloves are off! And: Moved again.

Wonderful news! As of today (I think -- it may have been yesterday), no more need to don mask, gloves and gown to visit Jan. Wonderful because it means whatever infection she had is now gone. It's great to be able to touch Jan's hands and face skin-to-skin again. She clearly did not like being touched by my gloved hands any more than I liked wearing the gloves.

On another note -- one that we find alarming at the moment -- Jan has been moved out of B5 ICU to a semi-private room in a normal patient care unit. This would be terrific news if it had come as the result of a neurological assessment that she no longer needed to be in ICU. But the decision was made, not by neurology, but by the ICU resident who 'needed the bed'. While I understand the principle of triage -- prioritize the expending of limited medical resources by need --, Fede and I are not at all sure it is safe for Jan to be in a semi-private room without a nurse always present. She still cannot swallow and has no gag reflex to protect her airway.

Jan's new nurses tried to reassure us that it is not unusual for patients in Jan's condition to be in their area. At the same time, they listened to our concerns (thank you!), made some inquiries, and told us how to contact the resident who made the decision earlier today. Part of our concern is that the hospital did not contact either Fede or me before moving Jan, in spite of our being told we would be informed first. We had no chance to express our concerns and have them addressed at the time. We will be following up with the resident, as well as with Jan's neurosurgeon.

Jan appeared very tired this evening, which of course is still to be expected. When she wasn't sleeping, she was, as Fede says below, paying careful attention to what was being said. By her responses, she fully understood what she was hearing.

She is even communicating a little with her hands. At one point, we asked if she wanted to look at some pictures. She nodded 'yes'. Then we got distracted by what we were saying, and a minute later she held up and shook the back of her hand at us in a gesture that was crystal clear to me: "Come on you guys! Where are the pictures you promised?" At another time, she held up her hand and made the universal "yak yak yak" gesture - we were talking too much!

I never thought I would be so delighted to be chastised by Jan!

Where is Jan? D5 Patient Care Unit, room 49.
How do I get there? Take the main elevators we've been using all along up to the fifth floor. Walk down the corridor past B5 ICU and keep walking as the corridor takes you out of B wing, into C wing, and then into D wing. The "Patient Care Unit" sign is large and easy to see.

In other news of Jan's progress, the physiotherapist had Jan standing (!) for a time today, while holding on to a table. Sometimes, my overwhelming desire for Jan to speak to me keeps me from noticing that she is indeed making great progress at a very respectable pace.

I'll end this overly long post with the word that I stared with: Wonderful!

-Steve

3 comments:

FC said...

Just a brief update to Steve's blog. After acouple of hours of sleep between 9 and 11PM, Jan got very restless, turning and tossing constantly. A couple of times she decided to put her head on the foot of the bed, tangling the IV fluid and the feeding tube around her waist. She has also mastered the art of undoing the straps of the retraint vest the nurses keep on her. They tie these to the bed frame, but she finds a way to undo them whith one hand!

She hugs, she cries, she smiles, and hopefully she will gag and swallow very soon! Otherwise we will have to find some explanations from the resident who ordered her out of the NICU.

In the new area, I believe the ratio of nurses per patients is 1 to 6. We need some volunteers, preferably women, with some experience in nursing to ensure that Jan gets the care she needs under the new more unsupervised situation. Please call David, Julia, Joy or me if you are willing to volunteer.

Thanks again! and rejoice with us for her progress.

-Fede

Ret said...

Hi Jan!
All this must have happened after I left yesterday. It was good to see you. You are looking quite radiant and your hair's been growing back quickly since the surgery. I know you recognized me because you smiled when you pened your eyes and saw me. I'm sorry I couldn't be much of a conversationalist, but it looked more like you were trying to sleep and I didn't want to disturb you either. At least I'm glad to know you are making progress.

Martha said...

Holy and gracious God,
We thank you so much for your healing love which surrounds Jan and all those who care for her. We thank you for your truth and your grace that are sufficient.

Lord we come humbly to you and offer the prayers of our hearts. We have a deep desire to hear Jan's beautiful voice again. Lord protect and heal her vocal folds and her cranial nerves which support swallowing and vocalizing.
We long to sing with her again, to raise our voices in song to you.

Help us Lord in this time of waiting, to rejoice in the ways she is communicating with us now. The love that she gives us through her eyes, smiles and hand gestures is a precious gift.

Thank you Lord for our health care system that strives to provide for all who need care whether they can pay or not. We give thanks for all who are working with Jan and for those who will work with her in the future.

We pray this in the strong name of Jesus Christ, our Lord, AMEN