Today was Zack's last day in the hospital. He's home!
Friday, September 19, 2008
We've been at Legacy Emanuel for a week today. Zack is walking, climbing stairs, riding a bike, eating (he's been craving spaghetti and burritos), reading, writing...and he's very, very ready to go home. The rehab docs are saying he might need another week or more of therapy but I think they're being overly cautious. Zack gets tired, but not too easily, and he is taking care of himself. Some things, like his balance, which is not bad but not great either, are just going to take a little more time and it will do his spirits a lot of good to be back home.
Zack's therapists gave him an overnight pass for Saturday so we'll both be spending a night at home for the first time in 10 weeks. If the weekend goes really well, I'll take him home for good early next week and he can finish physical therapy as an outpatient at Doernbecher.
Zack likes to wear his robe during therapy.
Mo, one of his physical therapists, calls him Hugh Hefner.
Friday, September 12, 2008
Big changes today...
This morning, Zack was discharged from Doernbecher and transferred to Legacy Emanuel for physical, occupational and respiratory therapy. Whereas at Doernbecher he was working with therapists a couple times a day, Legacy Emanuel has a focused program that will keep him busy most of the day. We arrived late this morning and are getting settled, meeting with therapists, etc. The rehab docs are saying we'll be here anywhere from one to three weeks.
We stopped by the Doernbecher ICU as we were leaving and were able to thank many of the docs, nurses and respiratory therapists who helped Zack. They were thrilled to see him, taking pictures and congratulating him...impressed he had come so far, so well.
As of this morning, Zack is no longer using nasal cannulas for breathing. He's come so far in his healing to not need the extra oxygen anymore. And he's come full circle because he was using nasal cannulas the first week he was admitted to the hospital, back in mid-July. He isn't using a feeding tube anymore either so he's completely free of tubes (his chest tubes were removed this week, too).
Zack's grandma went home this morning after nearly 8 weeks of being with us all day, every day. She arrived the first day Zack was admitted to the ICU (the second week he was in the hospital). There's no way to thank her enough for everything she did for us while she was here. Thank you, Grandma!
Grandma & Zack in the Quiet Courtyard, Doernbecher
Tuesday, September 9, 2008
Hi. It's me, Zack. I'm out of the ICU and now I'm up on the 10th floor. It's a lot quieter on the 10th floor and you get a lot more privacy. I'm feeling pretty tired right now...The doctors say I might get out of here soon.
This is Maria again...Zack just went back to sleep so I'll take it from here.
Zack's been doing lots of physical therapy and has been able to stand and even walk a tiny bit. He's progressed from the cardiac chair to a regular wheelchair and spends time outside when possible (we're having beautiful weather in Portland). He's slowly being weaned from the nasal cannulas and is only receiving a very tiny amount of air through them. He still has two chest tubes but they're probably going to be removed today or tomorrow. Once that happens he needs to be able to walk and not need the nasal cannulas...and then we can go home.
The hematology/oncology docs wanted to restart chemo last Wednesday, the day after he was extubated, but I held them at bay until Friday. Zack's now officially in Maintenance but has only received two of the four meds scheduled for the first treatment (one of those two drugs is a daily that he has to take long term). The docs are probably going to skip one of the meds as it's the least necessary of the bunch but Zack is going to get the other one this week (it's intrathecal chemo which means it's given directly into his spinal fluid).
I went to the first 7th grade class meeting last night and Zack's class is starting to learn about the Renaissance Period. Zack's going to try to keep up with them and also do some math.
When Zack's not working out with his physical and occupational therapists, he's reading (Far Side, the daily comics, Mad Magazine), listening to Elton John, kicking and punching a beach ball around, asking to have his feet massaged, etc. He's moved from watching non-stop Hogan's Heroes to Family Guy in the evenings. Not really a linear progression but it's making him laugh and he won't be allowed to watch it once he leaves the hospital!
Wednesday, September 3, 2008
The extubation was a huge success and Zack keeps getting healthier and stronger...There's even talk of leaving the pediatric ICU tomorrow and heading back to the 10th floor. He's using nasal cannulas which supply a small amount of oxygen (without pressure) to help him transition from the breathing tube.
Zack can talk in loud whispers and his throat doesn't hurt! He's been able to drink water and a little bit of apple cider and he may be able to start eating (broth and other mild foods) as soon as tomorrow.
For the first time in weeks, Zack was out of bed and out of his hospital room today...He got into a cardiac chair, which looks like a tiny, narrow bed on wheels and is being used to help him get into a sitting position, and his nurse, Joyce, wheeled him out of the ICU to a courtyard where he sat in the sun for 20 minutes or so.
Nurse Joyce with Zack
Zack's in really good spirits and his grandma and I are having a lot of fun with him, as are the nurses who've taken care of him all this time. He's doing the breathing exercises and physical therapy necessary to get out of the hospital...frequent foot massages help motivate him.