DSS #81 member Kirsten Shockey wants to alert you that
her 10 year old great-grandson in
Updated (16-Aug. 2009): Sam is doing
well, enjoying his summer off from school. He got to spend the last month of
the school year attending a local public middle school and made some new
friends! He has his very own wheelchair
finally. It took over six months to get
it built for him. He has a motorized-chair on order now.
Sam is getting better at using the onscreen keyboard and has started replying to all the emails that he receives. He spends his days playing games on his laptop. He would love company as his parents live a two-hour drive away from him now. He enjoys getting phone calls too.
We are currently trying to get Sam moved to a facility closer to us so we can see him more often. It's a time-consuming process unfortunately. So, in the mean time anything anyone can do to remind Sam that he is being thought of is greatly appreciated.
Update (7-Feb. 2009): Sam is getting
settled in and adjusting well to the new living environment of Ashley
House. He misses all of you and asks how
you're doing often. The address to
Ashley House is
Update (6-Jan. 2009): Sam was
discharged from Seattle Children's Hospital on December 31 and moved to the
Ashley House in Lacey, WA. Ashley House
is a home facility for kids with respiratory issues to stay at when their
parents are unable to bring them home. The nursing shortage is the reason that Sam
wasn't able to move directly home. Sam
was so excited when he heard about getting out of the hospital! His spirits are so much higher now that he's
back to a somewhat more normal life.
He's getting used to living outside the sterility of a hospital and
being a typical 11-year old, not at all excited about starting his schooling
back up. He's been pretty spoiled with
that over the past six months. We had
quite the snowstorms up here during the holidays so we didn't get to open gifts
with Sam until after the New Year, but the family did finally get to have our
holiday with Sam. It's always so good to
see Sam smiling!
As far as physical recovery, Sam has maintained the same level of sensation for the past couple months ~ he can feel over most of his body, he can move everything from his shoulders up and his thumbs. Sam is still on a ventilator. His doctors have been mostly pessimistic as to prognoses. His doctors don't expect any further recovery. That doesn't mean that further recovery isn't possible - it simply means that the doctors aren't expecting any.
Update (9-Dec.): The past month has
been hard for Sam emotionally. He wants to come home so badly. Right now we're only waiting on his equipment
to be delivered to the house and nursing to be staffed. Once nursing is staffed and his bed and other
equipment are delivered the hospital, the discharge team will set a firm
discharge date! He had hoped to be home
before his birthday, Nov. 13, but we weren't able to make that happen. So we've planned a party for him here at the
hospital. Sam's birthday menu request:
homemade fettucini alfredo and a vanilla cake with red frosting and
grape filling with french vanilla ice cream!
Physically, Sam is doing really well. The recovery is still slow, but it's steady. Yesterday, he squeezed my hand with his left hand when I asked him to move his thumb for me! He's grown so much these past months. He's started putting weight back on. He's not the little boy we brought to the hospital any more. Sam has been having a hard time getting motivated to get up and do things every day. He hasn't been getting many visitors recently.
Sam's made a new friend – a boy who is also on the Rehab unit who is also on a ventilator and in a wheelchair. They've spent time playing video games and talking and being boys. One of the receptionists has brought her two nephews in to spend time with Sam several times, which has been great for Sam. He has really enjoyed having other boys to interact with.
Update (13-Nov.): The past month has been hard for Sam emotionally. He wants to come home so badly. Right now we're only waiting on his equipment to be delivered to the house and nursing to be staffed. Once nursing is staffed and his bed and other equipment are delivered, the hospital discharge team will set a firm discharge date! He had hoped to be home before his birthday, Nov. 13, but we weren't able to make that happen. The current goal is to have him home by Thanksgiving, although realistically we're probably looking at early December. So we've planned a party for him here at the hospital. Sam's birthday menu request ~ homemade Fettuccini Alfredo, vanilla cake, red frosting and grape filling with French vanilla ice cream!
Physically Sam is doing really well. The recovery is still slow, but it's steady. Yesterday, he squeezed my hand with his left hand when I asked him to move his thumb for me! He's grown so much these past months. Sam's started putting weight back on. He's not the little boy we brought to the hospital any more. Sam has been having a hard time getting motivated to get up and do things every day. He hasn't been getting many visitors recently.
Sam's made a new friend – a boy who is also on the Rehab unit who is also on a ventilator and in a wheelchair. They've spent time playing video games and talking and being boys. One of the receptionists has brought her two nephews in to spend time with Sam several times which has been great for Sam. He has really enjoyed having other boys to interact with.
Update (5-Oct.): On October 1, Sam had his “halo”
removed! So very happy about that! With the completion of RT training, we can take
Sam out of his room "portable" - which means Sam in his wheelchair
with no extra trailing bits of equipment (everything will be stored on his
chair). We will be able to schedule his discharge date, soon…about damn time !
We'll be figuring out the best way to get him to the bath and in and out of the medical equipment. It's a tricky thing with him still being on the ventilator and needing constant support throughout the entire process. Next thing is giving him the haircut he wants (he likes his hair short!) and scrubbing his head (which is in much the same state as his chest and back).
Sam has consistent feeling to his fingertips on both hands now, and intermittent feeling on both feet! It feels like it's been forever, but when I stop and think, it's still really only been three months, which is nothing. He's so strong and we’re so proud of him. He's terribly excited about coming home.
Update (14-Sept.): Sam is back under
the care of the Pulmonary Team. He gets
to stay in his room on the Rehab unit which is nice because he very much likes
the nurses there. He has feeling all the
way to his fingers on both hands as of a few days ago!
The doctors will soon be able to set a discharge date, so we're busily working on getting the house ready for Sam to come home. The doctors have said that he will definitely be home by Thanksgiving, but we're working on getting him home sooner than that.
His spirits are high and he's beginning to behave like a regular kid again: being silly, cracking jokes, laughing! Sam really misses being home. Having visitors helps so much. We've really appreciated everyone who's been able to stop by and spend some time with him.
Update (24-August): Sam has been on the
Rehab Unit for 10 days now and is making so much progress. His spirits are so high - it's just amazing
He has Occupational, Physical and Speech therapy twice each day, a morning and an afternoon session of each. He's working so hard that he's finally actually sleeping normally again! He's been getting up out of bed every day this past week into his new wheelchair and has gone outside in both rain and sun, visited the playroom and gone to see the swimming pool too. He enjoys his newfound mobility and has been spending more time out of bed during the day than in it.
He met the goal of finally having the cuff on his trach tube completely deflated during speech therapy. He is now up to nine minutes of deflation. The goal now will be to increase the amount of time the cuff is deflated until he can tolerate it constantly. At which point he will be switched over to a cuffless trach tube. It's really the first step to weaning him off the ventilator. Deflating the cuff on the trach tube is what allows Sam to regain the use of his voice (allowing air to flow across his vocal chords). His speech therapist discovered that giving Sam something interesting to read ~ in his case, she's been printing out stuff on dragons! He doesn't pay attention to the clock and focuses just on reading aloud and is making huge leaps forward.
Sam is eating solid food every day now – at each meal! It's only a few bites per meal at this point, but it's better to take it slow and easy and work his stomach back up to tolerating digesting solids again. The eating is one of the more difficult tasks for Sam because his stomach has been so touchy with all the changes they've put him through trying to get him the calories he needs daily. He hasn't really felt hungry, but his parents reminding him that eating real food is so much better for him than being fed continuously through a tube he pushes forward (even if he does complain he still eats something).
Every day has been working toward some form of progress or improvement over the previous day, and Sam has been meeting those goals and exceeding them and amazing everyone who works with him. The biggest achievement so far happened on Thursday morning ~ Sam can shrug his shoulders! He was so proud of himself. He was showing off to everyone who came to see him. Big ol' smile plastered across his face!
Thank you all so much for the good thoughts/prayers/wishes/hopes you've been sending to Sam and my family. There is nothing that would ever be enough to repay that in my mind.
Update (14-August): Sam is still on the general floor but is being prepped to move to the rehab floor any time between tomorrow and Monday. He is still fighting hard. He now has feeling all the way down to the palm/back of his right hand, down almost to his left bicep and down to his sternum. He can't move anything else yet. Sam is still on the ventilator. That's it for now…still quite the long haul.
Update (2-August): Sam is now out of the ICU and on the general floor. He can now eat solid foods. Any liquids need to be thickened to nectar consistency. He is a little food shy after his first day of eating solid food. He was ambitious and ate an apple and the next day his stomach was pretty angry with him, so he is gun-shy on solid food right now.
Update (23-July): Sam had his traech tube put in yesterday evening. He is now able to talk at a whisper and even vocalize a bit. The physical therapist will be working with him next Monday on a swallow test, followed up by another test to ensure no food will be going into his windpipe. If everything checks out OK he'll be slowly moving on to solid food. He is very lonely and wants visitors, so if you have a moment to stop by it would be much appreciated.
Update (16-July): Sam's left lung has almost completely cleared of mucus. It had collapsed and was stuck. This is no longer the case. His right lung has a bit of fluid, but that is normal given his state. He is awake and communicative most of the time.
The physical therapist doctor came in Friday and did some tests on him. She concluded that he has full communication from his brain all the way down to his spine. She said that it was a good sign. We think it is a fantastic sign and gives us a foundation on which to build a solid recovery.
Sam is starting to feel pain in other parts of his body. This morning was his right shoulder as the PT was doing his range of motion exercises on him. We're doing our best to psychologically prepare him for the coming onslaught of increased pain as his body ramps itself back up. He has a good grasp on the notion that pain. His body is healing and coming back online. Additionally he has a good grasp on the notion that it is OK to rest from the fight once in awhile to regain strength for more healing.
His traech and feeding tube procedure will happen tonight or tomorrow. We believe it will accelerate the healing process due to his increased morale. He cannot wait to have all those tubes out of his mouth and face. It will also allow him to talk and the physical therapist is excited to get him eating solid food again. She is all about setting independence goals for Sam, allowing him to do whatever he can do on his own. Getting Sam out of the ICU is our next major goal. The marathon goes on.
Kirsten wants to humbly thank everyone in the Danish community who has donated their time, energy, funds, food or any other resource to our family and our boy – without which we would not have made it this far. No words will ever be able to express how very grateful we are. I am left wondering what we've done to deserve the selfless and beautiful people that surround us, let alone those who have donated that don't even know us. Love is amazing.
Kirsten says she’s been pressed to spell out the needs our family has and reminded that pride is not an option. Sam's donation account was recently moved to Bank of America (Oct. 15, 2008). Contact Kirsten on how you can send in a financial donation. Kirsten is asking for financial help. Immediate relief can be given in the form of gift certificates from a grocery store, like Winco, etc. She is asking the Danish community across the PNW for help.
For more details, please contact Kirsten: <Kirstendansk@aol.com> or (503) 769-7768
Updated 7-February 2009, 8 am