Wednesday - September 19, 2007

Wednesday, September 19, 2007

Day +71. What issues stand between Jessie and returning to 6West/bone marrow transplant unit? Not much. Weaning down to regular nasal flow cannula for oxygen support, and managing blood sugar and insulin issues. Today they make a plan to monitor and adjust some settings over the next 24 hours, and then arrange a hand-off to 6West within the next 1-2 days, if she remains stable.

BEST OF ALL — A PLAN TO HELP JESSIE MOVE to 6WEST: The ICU attending physician and the bone marrow transplant team strike a deal. They agree to shut off Jessie’s IV nutrition for 24 hours, starting Thursday morning, to monitor her blood sugars and whether they fall back into safe parameters. Also, if she can be tapered safely down to regular nasal cannula for O2 support by Thursday (or Friday), they’re willing to help her move off ICU back to 6West. We hope that by tomorrow, Thursday, Jessie will be primed for a move to the 6th floor! 

BELLY AND GI TRACT and BLOOD SUGARS: Her belly is soft to the touch, much less swollen, and not too sensitive when examined. Her GI tract is active, and she’s successfully eating solid foods such as cereal and graham crackers. She’s also taking oral medications, and tolerating those well, too.

Food. Blood sugar. Insulin. A vicious cycle. Each unit handles this somewhat differently, and it is a tricky subject as we transition toward the step-down environment of transplant unit. 

Up in ICU, under the protection of the surgical staff, they want her to eat, so they can turn off or turn down the aggressive 24-hour IV nutrition. Usually they won’t turn it off UNLESS she eats. But the IV nutrition wreaks havoc with her appetite, so she’s not hungry. It’s hard to eat much. Up here, the main focus is to help her recover from surgical interventions 2 weeks ago. The high volumes and concentrations of IV nutrition have been used to sustain her body and give it proteins and other supplements with which to mend. 

Now add the issue of blood sugar. The IV nutrition elevates her blood sugars and causes her to need insulin. If she eats, and gets off the IV nutrition, blood sugars will probably fall back under control, so she won’t need insulin...But she can’t eat, because she’s not hungry, because they give her lots of IV nutrition, but they won’t turn off the IV nutrition unless she eats...And the cycle continues. 

Also, on ICU, they monitor blood sugars with D-sticks (finger pokes), unless the patient has an arterial line. Jessie has an arterial line, but it’s old, and they want to remove it. They’d like to start using D-sticks to check her blood sugar level, and remove the old line (risk of infection increases if it stays in too long, and every time it’s accessed). On the transplant unit, they check blood sugars through central-line blood draws (less desirable, from a medical and infectious diseases management standpoint, than D-sticks, but kinder to children who are already being poked a lot). 

Clearly, we’d like to resolve the issue of food, nutrition, blood sugars and insulin. We’d like to resolve it before we must resort to finger pokes 4 times a day in ICU. For now, they agree to use the A-line (arterial line) one more day...

Okay, so we have postponed finger pokes for at least one day. Kudos to ICU and transplant teams for working together to find a middle ground and help prepare Jessie for the move. We know that the issue is a lot more than needles in the finger, but for Jessie, that’s what it comes down to. 

Jessie’s reality. Needles. Fingers. That’s mommy’s job. To remind them of the little girl whose wellbeing is under debate. Picture mommy standing in the hallway, arms crossed, frowning, “holding a line” between safety and comfort and Jessie’s emotional wellbeing, as well as her physical one. Picture mommy asking the two teams to see if they can find a safe compromise, discussing the pros and cons of different insulin-regulation and blood-sugar monitoring practices, asking to have them explained, understanding why one is better than the other, but knowing that there’s also Jessie’s reality. 

After all, we have caused her elevated blood-sugar condition by giving lots of IV nutrition, which might resolve on its own if we can agree on a time when she’s allowed to wean off the IV nutrition and eat more normally...if the team agrees that she’s reached a point of stability when they can give her such a chance (remember, they’re trying to help her heal from 2 major surgeries). 

The cycle is vicious indeed. But it can be changed, with careful medical management, and care-giving teams who are willing to help her make the transition. And they are. They do. If we ask. Ask a lot. 

OXYGEN WEANED: They turn down her high-flow nasal cannula from 6 to 4 litres across the day, testing each setting for several hours to see how she tolerates each one. Her respirations remain steady and un-labored, her heart rate is calm, and her saturation levels are 100%. It’s working well; her lungs can handle the changes as the oxygen support is decreased. At one point, she’s required to use “regular flow” cannula support during a procedure off the floor, and tolerates it well, although she complains about the change from moist to dry oxygen.

PAIN UNDER CONTROL, NARCOTICS SWITCH IN PROGRESS: Her pain management has settled down again, as the team regulates the dosage of Methadone (replacing Dilaudid). This drug will be used to help her slowly step down her reliance on narcotics, once baseline pain isn’t an issue (pain is currently a problem in her mobility, since the surgical sites are sore, so now she truly needs the pain medication). The Methadone tends to make her sleepy, though, so she’s not moving around as much as she was yesterday. ** sigh **

ENOUGH ACCESS: We must address the need for more access to her circulatory system via veins. She’s blown one peripheral IV and the PICC line. 

Today she goes down to radiology, and undergoes the “re-threading” of her PICC line. They use the exisiting catheter to thread a new wire up through her veins toward her heart. Due to the narrowed, scarred blood vessels, they cannot guide it all the way to her heart, but they provide access way up her arm into her chest. It’s called a “long line.” Then they replace the catheter with a new one. 

The process could be painless...but it’s not. It’s quite painful for Jessie, and she’s awake, and aside from the baseline analgesic medication she’s already receiving, they don’t actually address the localized pain. Ow-ow-ow. At least they allow mommy to stay in the room, gowned and hatted and masked for sterility. Jessie squeezes mommy’s finger and yells “OW!” a lot. 

She ends the procedure with a new non-centralized PICC and the respect of everyone in the room for enduring the process. And we get to see “moving x-rays” of her arms, ribs, lung and the catheter itself, as an added bonus.

IN and OUT: Jessie needs to get in and out of bed a few times to use the commode. As we’ve mentioned, this is a big deal. Lots of catheters, lines, tubes and wires to move along with her, to get her in and out of the bed. We can manage it with 2 adults to help, but 3 is better. At least she’s starting to carry some of her own weight, and lean on someone else, as we move her in and out of the bed...that’s a sign of returning stamina. :-) 

SARAH and DADDY: School. Office. Two worlds inside two words. 

Daddy’s is a world of architectural design, which is really about communication and relationships with people, a lot of the time. He spends his days working with individuals, families, businesses and schools. With leaders and teachers and staff members. With students. With many of the constituents who may use a building. Getting to know them. Problem-solving. Thinking creatively. Meeting their needs. And making the world a nice place to be, through his designs. :-)

Sarah’s schoolday is followed by her extracurricular one. Dance class. Ballet shoes. Pointe. Modern. Girls in motion. Young women, really. Choreographing their own dances. Learning to express themselves creatively with their bodies. Surprising their dance teacher with their choices, their maturity, their sophisticated approach to the music and the mood. All the years of working together are starting to blossom in this class. :-)

At home again, daddy and Sarah have another family night together. The Senechal family drops off a meal. The community’s help, with the coordination of Charlotte Marsh, to provide a regular schedule of meals, is quite significant. 

Literally, you sustain us. And we thank you.