January 19, 2021, written by Mama
I was quiet about this goal lest I weather disappointment after disappointment. Did any of my sharp-eyed readers or medical professionals spot the clues that we were preparing for this? Thomas had met many milestones lately and been weaned from the drugs that keep a person in ICU (e.g., Precedex, ideally Dilaudid, too). His blood labs have dropped from four times daily slowly down to twice weekly.
About two weeks ago, the PICU Medical Director said that our goal was within sight and began laying out the goals Thomas had to meet in order no longer to need the intensive care specific to that department. At first, I was terrified because, frankly, it is very hard to look at Thomas and describe his care as anything but intensive. I cried a lot of tears, yet each team member, day by day, showed me how Thomas was no longer needing the technology that is the specialty of PICU, needing fewer and fewer labs, and increasingly no longer needing the constant nursing care. I began taking more and more responsibility for his physical body care. Honestly, it was the reassurances of my nurses which carried the most weight with me because they have been right there in the trenches with me.
Not only does Thomas no longer need such intensive nursing, but our head surgeon very much wanted Thomas out of the infection risk of PICU. The Oncology floor is one of the cleanest in the hospital and Thomas is a lot safer from bugs here.
I'm also excited to be in a place where I can help Thomas get his cirdadian rhthym settled. I worked hard in PICU to help him, as ICU delirium is solved in large part by correcting the day-night cycle. However, I came to see that there was a true roadblock: there was only so much I could do with lights glaring from the hallway even all night long, the level of voices and activity and machines beeping remaining the same 24/7, and Thomas having body care even late into the night (sometimes hour-long attention at 11:00 p.m.) and then experiencing his first round of doctors visiting as early as 6:00 a.m. Even yesterday, Thomas was still experiencing delirium, telling us calmly that the room was "very dirty" with "floating purple spots" that he wanted me to "wash off." Being here in a quiet room with privacy, bright lights in the day, and pitch black at night will be so helpful for Thomas. Even on our very first morning here, I wondered mysteriously why nobody came in until about 8:00 a.m. and it was because the nurse spotted that Thomas was still asleep and she guarded the door from the various people who wanted to see him!
But first, let's take a step back at what was also a really fun day before our transfer.
Thomas and I played various games, including Spot It. In our version, only Thomas spots things and earns points, and Mama is in charge of asking Thomas to actually point to his matching images and say the words for me before swapping out cards.
Both Speech Therapy and Physical Therapy came for sessions and they had Thomas sit up again for the second time since a week ago. Last time, it took two of us adults and five minutes to move him into position. This time we only needed my strength and maybe one minute to get him sitting. Last time, he could not muster the strength to lift up his own head or even eyelids, but this time his head stood straight and strong. This is a huge accomplishment for our boy.
I've noticed just in the last three days that Thomas is now spontaneously playing with his stuffed animals, using both his hands simultaneously to manipulate them. I snapped some pics of his "swimming" the squid through the air.
We were spending one last daytime in PICU because we had rather rushed his weaning off of Dilaudid. Dilaudid is ten times stronger than morphine and is a controlled substance such that it is allowed to be on an IV drip in PICU, but it may only be given in a special locked device called a PCA if it goes to another floor. Only 24 hours in advance of our departure, the team decided it really would be easier if we could get Thomas weaned off before he left. Given his sensitivity to weaning anything, I was prepared to not consent except I had the encouragement of the Palliative Care team nurse who has been with us every step of the way weaning drugs and has typically championed going slow for Thomas. If she said that Thomas's long-time methadone coverage is strong enough to help him navigate this wean, then I was willing to try it, with promises from them all that we could always put him back on Dilaudid. Therefore, we spent the day simply staring at Thomas, watching for withdrawal problems.
During Thomas's afternoon nap, I packed up our room. One accumulates a lot of stuff after 63 days in the hospital, even with regularly rotating items home, and the below picture shows almost all our belongings, shy two pieces of luggage I carried.
All day, various staff members from doctors to nurses to custodial staff came by the room to say goodbye and I cried tears every single time. I felt so raw emotionally that I could barely speak to anyone. At the end, only two nurses and I were scheduled to navigate the hospital bed, IV pole, and two luggage carts downstairs, but I noticed a last-minute flurry as more nurses suddenly "had free time" and quietly joined our little train to escort us. The Clinical Supervisor ran over and asked to take a picture with me and a bunch of staff to share on their private employee communication board--I would so much love to share that treasured photo with you, but rules prohibit photos of staff here!
After a very long day of waiting, we arrived in our new room at 6:00 p.m. The room is twice as large as in the PICU and has its own private bathroom and shower. This will make it so much easier for me and safer for Thomas because all this time, I never left Thomas to visit the restroom without finding a babysitter to stay in the room with him because of his near constant retching-emesis: not that easy of a feat!
The new room also has a solid door that stays closed most of the time. It is so quiet in here, I don't know what to do with all the quiet. For two months, I've heard unceasing day and night conversation, laughter, patients wailing, mothers screaming in anguish, codes being called, doctors conferring in the hall, and urgent footsteps. Here, we close the door and hear virtually nothing.
Due to the angles of the room, even with the door ajar, Thomas cannot see it from his bed. He is upset that he cannot watch out the glass door of PICU to the hustle and bustle of the hallway, which was a daily pastime at certain junctures of the day.
Also, here on 11, apparently COVID does not transmit via Keurig machine because they allow the Keurig machine to be accessed by parents, whereas in the PICU they took it away as a COVID risk. I'm thrilled to be able to obtain my own coffee here instead of having to bother nurses every morning! (Although, I have to say, the nurses loved us so much in PICU that at shift change, I witnessed more than one little 'tiff' over who would have the privilege of bringing me my coffee.)
This photo is dark but shows my view of Thomas by night. The new arrangement of his bed and my couch is much improved, so he can actually see me when he wakes instead of having to call for me fearfully. Also, the sleeping couch here is almost as big as a full-sized twin, whereas the couch in PICU is narrow and so short that I could not lie full length.
In an emotionally uplifting change, we have a view! Our PICU room looked out on a rooftop utility area and there were still six floors above us, so I truly could not see any sky.
Our new room has three gigantic bay windows that look out on a beautiful sight of beautiful neighborhoods and trees. Thomas and I can hardly wait to play I Spy.
This is the first day in two months I've seen the sun except for my very rare forays outside this hospital. Even for those, I usually swap out with Chris in the evenings, so I still did not see the sun. This morning, we watched the sun rise and I took the below photo of actual sunshine on our son's face.
Not to pretend all is sunshine and roses, I am anxious. It is very frightening to let go of many security parameters. Some patients bounce back to ICU. Some patients make it all the way to in-patient rehab and still bounce back to ICU. One doesn't want to do that, but it's good to know the safety is still there.
Even on my first overnight, my PICU angels haven't forgotten me. I woke up to find a sweet Post-It note of affection from one of the PICU nurses (who is a balm to my soul) who had reason to be on the 11th floor: it was stuck to my bedside table right next to wear I had been deeply asleep. I feel we are so loved!
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