Friday, August 29, 2008

We were hoping Zack might be extubated this week but he's going to need a bit more time. His lungs are so much healthier these days but his breathing muscles need to be stronger before he can come off the ventilator...While he was on the ECMO machine, the ventilator was doing nearly all the work so he was barely engaging his breathing muscles. On top of that, the steroids he recently stopped taking (for lung inflammation) weakened his muscles a bit. So...Zack has started some breathing exercises to target his diaphragm and a medical student is working to find more ways to support this strength building. 

This isn't bad news, it's just indicative of how much he's been through and how far he's come along since. Some of the doctors have used the word "miracle" in regard to Zack and a little more time to heal is a minor thing when looked at in that light. 

Regarding his liver, he stopped taking an anti-anxiety drug called "neurontin" and his liver enzymes immediately dropped back to normal. Neurontin doesn't normally cause liver distress but he had just started taking it before his liver enzymes started to increase and it was the only change that coincided with it. 

As always, thank you for keeping Zack in your thoughts! 

Wednesday, August 27, 2008

Zack has been in the hospital for six and a half weeks...

He's still taking sedation medication but lower doses of less powerful he naps a lot and sleeps through most of the night, but he's also awake enough during the day to listen to music (mostly Elton John and Tom Petty), watch TV (he's watching more SpongeBob than Hogan's Heroes these days) and listen to his mom and grandma reading to him (mostly the Redwall book "Lord Brocktree")...Thank you Jim for the CDs of Elton John live in NYC. 

Zack is doing lots of physical therapy with increased strength every day. He's also been trying to write every day for the past week or so and was able to write an entire word yesterday. We sometimes play Hangman to help us figure out what he's trying to say...He talks all the time, though at this point he can only mouth words because the breathing tube rests on his vocal chords making sound impossible. Zack is fully cognizant and lets everyone know that he's ready to get out of here. 

We are hoping he'll be extubated this week, maybe Friday. His lungs are very strong and he's doing long sprints of breathing on his own with little help from the ventilator. He had another small pneumothorax outside his right lung yesterday so a chest tube was put in and the pneumo was gone this morning. (This was Zack's fourth chest tube...the other three have been removed and this new one will stay in for a few days.)

Zack's liver enzyme count has climbed over the last few days and a team of gastrointestinal docs are trying to pinpoint the cause. He had an ultrasound yesterday that shows his liver slightly enlarged but no cause was evident. 

I am so encouraged by Zack's progress and amazed at his strength and determination. He's pushing himself every day and it's making a big difference in his healing process. Nurses and doctors have been impressed with how quickly he's healing and how strong and healthy he looks. These last few days with the breathing tube are trying his patience but I keep reminding him that the worst is over and he'll be home soon. 

As always, thanks so much for your good wishes and thoughts for Zack!

Zack's Grandparents pose with his Uncle Tim 
and Aunt Monica outside Doernbecher

Tuesday, August 19, 2008

On Saturday the pediatric ICU attending physician, Dr. Jennifer Needle, decided to switch Zack from the oscillator back to a regular ventilator. Because his lungs had healed so much over the last couple weeks, she thought he could handle the switch...and he did! His vent settings are slowly being weaned down and as of this morning, he's on 40% oxygen...

The lowest setting used on this ventilator is about 30%. (Ventilators can provide as much as 100% oxygen but that amount can be harmful.)  We humans usually take in about 21% oxygen with each breath but since breathing through a tube is like sucking air through a straw, a higher oxygen percentage is used. (Thank you, nurses Jamie and Lori for the explanation.)

Along with the switch from oscillator to ventilator, Zack is on lower doses of sedation drugs. He's also off muscle relaxants again because the ventilator settings require him to initiate each breath while the machine gives him some extra oomph and oxygen. The docs are using the word "extubation" (removal of the breathing tube) a lot these days...There's no set date yet but it's definitely on the horizon. 

Regarding chemotherapy, Zack is finished with regular, weekly chemo treatments so this current illness hasn't disrupted a crucial time in his treatment schedule. The next phase is Maintenance, during which he'll receive treatments once every four weeks plus he'll have to take some pills at home. The hematology/oncology docs would like to start this next phase as soon as possible without interrupting his healing process...They plan to do a bone marrow test today to make sure everything is kosher and to help them better plan when to start Maintenance. 

Thank you all so much for keeping Zack in your thoughts. Please continue to sign the blog...Zack isn't going to remember most of his time in the hospital and aside from your comments being a huge source of encouragement and love right now, they will also help serve as a record of this time and of the people who followed his progress. 

Tina visited last week, arriving the day Zack came off ECMO and was switched to the (noisy) oscillator. She helped me find headphones for him and then she knit a cover for them.

Thursday, August 14, 2008

Zack is no longer using an ECMO machine! He was deemed ready for a trial stopping of the machine yesterday afternoon so his doctor turned off the oxygenation process (ECMO is essentially a lung bypass machine in this case, oxygenating Zack's blood while his lungs rested). He did great --- meaning his lungs are able to oxygenate his blood on their own --- and ECMO was permanently turned off. The surgery to remove the cannulas (tubes) from his veins went perfectly and he is now in a deep sedation. 

The doctors switched his ventilators yesterday too, and he is now hooked up to an oscillator. It's a loud machine but also the most gentle ventilator available. His lungs stay partially expanded while he receives many tiny, rapid breaths...Two of Zack's respiratory therapists, Debbie and Marie, compared the oscillator "breaths" to the gentle wingbeats of a hummingbird. Though the oscillator is gentle, it's an uncomfortable feeling to have your lungs always full of air so Zack will stay sedated until he's weaned off the machine. 

The next step is for Zack's lungs to heal the tiny tears that allowed air to escape...this air caused more than one pnuemothorax (collapsed lung, partially in this case) because the air gets stuck and applies pressure to the outside of the lungs. Zack has three chest tubes on the sides of his chest...tiny needles in his skin attached to bigger tubes outside his body that allow the extra air to escape.  This morning's chest x-ray showed no outside air. 

This transition to an oscillator was always part of the plan after coming off ECMO. Zack was on ECMO for exactly two weeks, which is ideal because apparently it works very well in the beginning but can often be problematic with long term use. The oscillator is LOUD so Zack is wearing earplugs but I'm going to try to find him a pair of big headphones to muffle the noise. 

Zack is on the right track!

A Visit from Zack's Aunt Cristina

Sunday, August 10, 2008

Zack's having some great, stable days...His lungs are sounding much clearer and he's able to take bigger breaths. The doctors have done some tweaking of his various medications as his body tells them what does and doesn't work...Yesterday's attending physician said the job of the medical team is to "entertain patients while they heal" (and the ICU does sometimes feels like a 3-ring circus), but Zack's many doctors and nurses are working together to cover all bases and make sure his body gets all the support it needs.

Zack's bilirubin count went down this morning for the first time in a while...a very good thing. He's no longer taking a high dose of the antibiotic that may have been responsible for that spike. His gall bladder was showing some stress and one of the reasons for this could be a (preventative) anti-fungal medication which has now been switched to another that doesn't tax the gall bladder or liver.

Meigra Simon visited today and did a Bowenwork (bodywork) session with Zack. Meigra's been working with Zack (and me) since his early days of chemo and her work has been consistently healing for him...I'm so grateful to her for coming to the hospital to support his healing. Here's Meigra's website for anyone interested in learning more about her work:

Today's "sats" are in the mid-90s and higher...As I'm typing this, he's "satting" at 97!

View from OHSU

Thursday, August 7, 2008

Zack is continuing to heal...his lungs are able to take in greater volumes of oxygen with each breath. His "sats" (saturation of air in his bloodstream) are also improving. The respiratory therapists are now using a combination of mucomyst (a thins mucous) and albuterol (to opens his lungs) to help him clear out his lungs.

On Wednesday, the docs decided to stop administering muscle relaxants. Zack is still heavily sedated but when he's not sleeping, he's very aware of his surroundings and is able to communicate with me. Lots of head nodding today helped me understand his comfort level (he's comfortable and not in pain!)...the breathing tube is resting on his vocal chords so he's not able to speak but he did mouth a few things today, helping the nurses better see to his needs. 

Another good thing about not being on muscle relaxants is that Zack is able to cough on his own without help from respiratory therapists...our own coughs are the best way to clean out our lungs.

Thank you to the Cedarwood community for the event that took place on Wednesday night. Your well wishes and healing thoughts for Zack are appreciated. 

I'd like to invite everyone to take some big, deep breaths of healthy air for Zack and send that healing oxygen to his lungs. I've been doing this every time I get a chance to go outside and I know he feels it. 

Thank you everyone for your love and support!

Zack's Grandma and Courtney

Tuesday, August 5, 2008

Zack's lungs are continuing to heal while doctors, nurses, respiratory therapists, surgeons and ECMO technicians continue to support him during the healing process. Today, he had a minor procedure to remove a mass (which turned out to be a blood clot) from his right lung. His ECMO technician yesterday and today was Debbie and she spent a lot of time helping him cough and clear out his lungs...All of this helps his lungs expand more fully when he takes in air. The professionals call it "recruiting" his lungs. 

Debbie, Respiratory Therapist & ECMO Technician

Zack has a slight liver imbalance so a gastroenterologist has been working to narrow down the cause, which is probably the ECMO machine itself. Zack's liver will normalize once he no longer needs ECMO. 

Surgeons added extra stitches to his ECMO access points yesterday and today. Since he's taking blood thinners (which is necessary for ECMO) it's important to stem any bleeding as much as possible...and it has vastly improved. 

Zack's had some visitors during the past few days...His grandpa left for home this morning after staying with Zack for a week...he'll be back soon; Grandma is still here and spends a lot of time with Zack; Usha did acupressure for Zack (and brought a delicious home-cooked meal for Maria); Donna visited again; Frank came from California and spent some time reading to Zack; and Courtney also came to visit from California. 

Frank visits Zack

Sunday, August 3, 2008

More good news! The head physician of the pediatric ICU said he sees "dramatic improvement" in Zack's lungs per this morning's x-ray. Zack is on a steady healing course and it's definitely working for him.  Taking Zack off the ECMO machine is in the foreseeable future and will hopefully happen some time this week, as soon as his lungs show they're ready to oxygenate his blood on their own. 

Zack had lots of visitors this weekend, including his uncles Miguel and Michael, Grandma and Grandpa, Brian Armstrong, Suzy Happ and Zack's teacher, Donna Blaser.   

Zack's uncles, Michael and Miguel

Friday, August 1, 2008

Zack is continuing to improve! He is still sedated and on the ECMO machine, his vital signs are strong and his chest x-rays continue to show steady improvement in the health of his lungs. 

Zack is responding to voice. I've been reading to him --- "The Samurai's Tale," by Erik Christian Haugaard --- and so has my mom --- "Warriors: Into the Wild," by Erin Hunter...The oxygen levels in his blood increase when he's listening to us read and his heart rate and blood pressure slow down a bit too. 

Thanks so much for your comments, emails and text messages. I've been reading them to Zack. You can also leave me a voicemail message and I'll play it for him. 

Wendy Votroubek, Dave Johnson and Brian Armstrong visited Zack yesterday. Brian even called upon his paramedic training to help Gina (shown, a respiratory therapist) and a nurse reposition Zack.