Scheduled tests

Griffin was able to see his brothers and sister this morning. He was fighting his big brother Everest like nothing has ever happened. Then he walked his big brother to the bus stop. Griffin walks back and forth from TV to TV to watch Blues Clues and Dora and Diego. The home health nurse came by and taught Gretchen how to flush the PICC line and how to record vital signs. Griffin has a few things scheduled for tomorrow. He is on the outpatient schedule for a bone marrow biopsy and spinal tap where the doctors will administer chemotherapy at the same time. The planned time is 11:00AM. In addition blood draws will be obtained and it will be determined if a another blood transfusion will be needed. Please pray for Griffin's fast return as Gretchen will be in the recovery waiting room.

First night at home

This will be quick but a few things Gretchen wanted me to mention were last night was not what was expected. When the family came home Griffin was tucked into bed despite the cries that he wanted to go back to the hospital and continue wearing a hospital gown. The supplemental freezer in the basement was inadvertently left open and all of the frozen supplies had to be thrown out. A sack of potatoes was left on top of a new opened bag of rice (25lb.), and the potatoes began to spoil, Jon did not want to risk the chance of mold entering the rice, everything was tossed. The computer crashed last night so they were unable to access the internet. And then Griffin woke up crying at 5AM. He slept through the 3AM morphine dose. Tomorrow will be a busy day for Griffin. He has a bone biopsy, spinal tap and blood draws scheduled. More updates to come later.

Dicharge postponed

Griffin's discharge was postponed yesterday because the home health care agency was unable to provide materials and meds needed at the house. The plan is for the home health care agency to drop off all materials at 4PM, the family should be discharged by 12PM. Griffin is currently in the process of a barium swallow study. Griffin was also moved last night into a shared room. He had to give up his private bed. More updates later.

Update 6:20PM
Griffin and parents finally made it home. Griffin became nauseated and vomitted in the car. Looking forward to a restful night for all. More info to come Gretchen could not talk because she was cleaning Griffin.

Going home!

Who would not want to be in the comfort and safety of their own home? Being able to play with their toys and counting on predictable outcomes is sought out by the young child. When changes occur in a young child's life it can be hard to transition. Daily schedules and consistent care are key in a child's development. The young child will be able to explore and learn in a setting that is safe and secure.
Okay, so enough with the Child Psych 101, but with the planning of Griffin's bon voyage from 2300 Children's Plaza it is with the hope that Griffin will be able to grow and thrive as he has been before his diagnosis of Leukemia. Many things have changed and daily schedules will be different. Monday tot class with Miss Chris and Miss Amanda, Tuesday play group therapy with Cathy and Corey, Thursday Kindermusik with Miss Caroline, and Nutrition every other Friday is on hold for Griffin. Gretchen and Jon have taken measures in planning the activities of the week and deciding the logistics of household arrangements. It has been comfirmed that Griffin will most likely go home today in the early evening. Part of this plan consists of administering IV pain medication scheduled, oral medication twice daily, and assisting with all activities of daily life (feeding, changing, etc.). Griffin's daily schedule has changed for sure. Gretchen and Jon are learning to incorporate these different activities in Griffin's schedule. The schedule of events are not the same but the goal of creating an atmosphere conducive to Griffin's wellness and development have remained. Knowing Gretchen and Jon and the people that stand firm to help support this family, it will be possible. It may not be easy but Gretchen and Jon will make every effort possible to be sure it is done. Please continue to pray for Griffin and his family.

1 more day at the hospital...

The latest milestone is to get Griffin home! Everyone is hoping for a discharge tomorrow, Sunday May 3rd, or the day after at the latest.

What is keeping him there? Pain management. The doctors still have Griffey on a morphine IV. And of course he's receiving more chemotherapy.

Of the usual side effects - blood clots, brain swelling, nausea - Griffey has only experienced nausea. And Jon was quick to point out, "No Telly Savales here either." A positive note is that he is starting to get his appetite back and eating a little more.

The Maksen send much love to everyone for the support and the phone calls!

Children and medications- Do they mix?

Gretchen and Jon continue the planning of Griffin's discharge. They are rearranging furniture at home and taking on an overhaul cleaning of the house. Griffin may possibly go home on Saturday. As of the evening of May 1 (Thursday) Griffin's condition is stable after the placement of his PICC line. Griffin's course of medication include intravenous and oral meds.
Apart from the lines that poke from under his gown inlcuding the IV tubing with fluids, he has a heart monitor attached with sticky pads, a pulse oximetry monitor attached to his big toe (wrapped kind of like a band-aid), and a blood pressure cuff attached to his other lower extremity. Given this situation and probably tired from the day's events and the progressive course of chemotherapy it seemed that all Griffin wanted to do was sleep and not be bothered. But does sleep uninterrupted ever happen when you are a patient in the hospital? In Griffin's case, no. It was time for Griffin to take his scheduled medications and record vital signs. After being turned a couple ways, to access certain parts of his body, Griffin was awake, and he was not happy. When young kids communicate their discomfort, their cry can become so forceful encompassing the whole body to respond with the voice. This thereby did not help in recording his blood pressure. Not to mention his body posturing also indicated to leave him alone. With arms flailing about and verbal communication reaching ear piercing decibels, these are red flags to stop. But would a 29 month old boy have the capacity to understand what the course of action is in this case? You tell me. Did you ever have to give antibiotics or fever reducing medications to your child? Are their any children out there that like the taste of warm, bitter, and gooey looking medications? So what is the plan in this case? Not an easy solution, but none the less a course of action that would include making him swallow all his decadron, allopurinol, prevacid, and tylenol (did I miss anything?). Griffin may have been a bit more agreeable if he was more alert and awake. In the end of it all most of his medications were taken with a little amount being spit out. With a quick diaper and linen change Griffin was back to his slumber probably for another 3-4 hours until the next scheduled task. Check back later for more, and continue to pray for Griffin and his family. Also pray for the nurses who with hearts that break with every cry know that all of this is in the best interest for Griffin.

Update 12:10PM (phone conversation with Jon and Gretchen)

I just got off the phone with Jon and Gretchen and they are waiting for Griffin to get his PICC line placed in Interventional Radiology. It was revealed to Jon by the anesthesiologist that Griffin had complications with oxygen saturation during the first two procedures (Bone marrow biopsies). So now the doctors will be using another type of drug for anesthesia called Ketamine primarily used for the induction and maintenance of general anesthesia. Gretchen asked to continue to pray for Griffin.

Update on Griffin 3:21PM
Griffin received his PICC line which was placed into the right arm. The procedure was under general anesthesia without any complications. He has taken another dose of oral chemotherapy called decadron. Jon and Gretchen have met with some outpatient oncology team to start planning the outpatient based chemotherapy. Griffin is comfortable and sleeping for now.