4/12 - Each day shows more and more improvement. During rounds this morning Dr. Lenke stated that Nick could go home on Wednesday - yea! We're not sure what time we'll leave, but I anticipate it will be an evening arrival in Franklin. I've added a few pictures taken this morning with Nick getting his hair washed.
4/11 - Today was a better day. Nick is off his continuous morphine drip and now on oral pain medication, but still has his PCA for on-demand morphine boosts. He did quite a bit of walking today and is obviously starting to feel better. He's continuing physical therapy (see the pictures or video) and respiratory therapy.
4/10 - Nick had a busy morning! Dr. Lenke's partner/assistant stopped by at 7:00 AM and reported that Nick's 4:00 AM x-ray looked good, thus it was time to remove his chest tube so Nick could move to a regular room (yea!). Nick remembers having a chest tube removed after his lung biopsy in early 2004, thus he knew it wouldn't be a pleasant experience - and it wasn't. The doctor had to completely remove Nick's vest to gain access to the site where the chest tube enters Nick's body. Nick clearly let us know his disapproval regarding the removal of the dressing from his surgical site which the doctor needed to do to remove the chest tube. We found a severe tape burn on the back of Nick's armpit which I'm sure has been the source of some of his pain. Shortly after the trauma of having the chest tube removed, Nick's nurse removed one of the three IV lines from his hand. After that the nurse proceeded to give Nick a bed back, including washing his hair, followed by changing all of the linens on his bed - while Nick was still in bed! The poor little guy got rolled from one side to another. After all of this you could quickly tell that Nick was feeling better. He actually showed his first smile since the surgery and was making some silly comments. Then, about the time he got settled down, physical therapy showed up. During physical therapy, his nurse returned stating that it was time to remove Nick's catheter. The physical therapist moved Nick from his bed to a chair where he sat/slept until about noon. An noon the therapist returned and helped Nick return to the bed. We've not yet been moved to his new room but hope that will be sometime this afternoon.
4/9 - Dr. Lenke stopped by at 7:30 AM this morning. During the surgery a tube was placed in Nick's chest to help drain blood and fluids. There has been no draining from Nick's chest tube overnight. An x-ray revealed fluid buildup in one of Nick's lungs, meaning that there was clotting in the chest tube. They performed a small procedure to remove the clot from the chest tube. Nick sat in a chair, as tiring was it was, for two hours this morning - his longest time yet. It's better for his lungs to sit up instead of lying down. Click here or click here to see a couple of pictures during some respiratory therapy. We'll remain in the PICU another night to keep an eye on his breathing and the chest tube.
4/8 - Today has been a quiet day. Dr. Lenke stopped by at 5:30 AM (yawn) this morning and said all is going well. The primary concern right now is making sure no respiratory issues develop from the chest surgery. Nick is going to spend another night in the PICU, then move to a regular room on Saturday. He is still sleeping most of the time and is on a continuous morphine drip with a PCA that allows him to give himself boosts when the pain is too much. They are also going to give him a small dose of valium over the next 24 hours. When he wakes, he's awake for about 30 minutes, then dozes back off to sleep. He has started physical therapy and respiratory therapy and wasn't too happy about having to sit up this morning. He did better sitting in a chair in the afternoon. I've done some additional work on the web site and added some details about Nick's condition from July and December of 2004.
4/7 3:30 PM - Nick is out of surgery and now in the Pediatric Intensive Care Unit (PICU). Dr. Lenke stated that Nick did very well in surgery and he was pleased with the results. It's expected that Nick will sleep most of the rest of today, so the pain won't really kick in until tomorrow sometime. We're also expecting to be in the PICU for one day, then move to his regular room sometime on Friday. Click here to read Carole's update for the day.
4/7 10:50 AM - They are getting ready to close. All has gone well. Anticipate an hour before we're able to talk to Dr. Lenke.
4/7 10:15 AM - Received an update from the operating room. They are "preparing the spine for instrumentation" and all is still going well.
4/7 9:00 AM - Surgery day. Today's surgery is an anterior fusion to fuse the front-side of Nick's spine. The day started with a 4:30 AM alarm and departing YouthBridge at 5:30 AM as we had to be at the hospital at 6:00 AM. The pre-surgical waiting room we were assigned had a Playstation and Nick picked out one of his favorite games - a Tony Hawk skateboarding game. I told Carole it was the equivalent of digital Versed (ver-said) (a drug which helps to produce sleepiness or drowsiness and to relieve anxiety before surgery or certain procedures.) When it came time for Nick to go back into surgery he was once again a brave trooper and went without a whimper. A nurse called into our waiting room at about 9:00 saying all was going well. The surgery is expected to last 3-4 hours
4/5/05 - Added another update from Carole. It's Tuesday and we're off to St. Louis for an x-ray appointment today. On Wednesday we have an appointment with Dr. Lenke, then surgery on Thursday. While I'm hoping to keep the web site update just as I did back in February, it may not be until the weekend before I'm able to get it updated. Please continue to check back frequently towards the end of the week, then once you start seeing updates please let everyone know.
2/8 - Added Carole's latest update.
2/7 - Nick is home !!!! What this also means is that, for now, Dad is done updating the website on a regular basis. My short-term plans are to add some more detail about Nick's condition on this site. Nick's next surgery is scheduled for Thursday, 3/31. As done with this surgery I will update the website again beginning 3/31 to keep everyone updated with Nick's progress. Thanks to all of you for thinking of Nick.
2/2 - The progress continues. Be sure to check out the new pictures taken today - especially the one with his surgeon, Dr. Lenke. Nick was able to walk further today with minimal aid. He's gaining strength in his arms and legs and today's goal was to start maneuvering up and down working with stairs while sitting down since he still can stand independently for more than a few seconds at a time. The good news is that current plans are for us to leave the hospital on Thursday 2/3. We'll probably leave sometime shortly after noon and retreat to YouthBridge (where Dad's been staying) for the rest of the week until Sunday while Nick continues to recuperate and gain strength, but not with hospitalization confinement required. While lots of details are still being worked out, the plans are also for Nick to fly home on Sunday. So, if all goes well Nick should be home sometime Sunday evening - yea!!!!
2/1 - Considerable progress was achieved today. Nick's smile and funny attitude is starting to return. He's completely off the morphine pump now and receiving Tylenol with codeine every 4 hours. He's walking (still supported) from his bed to the room door with less complaining. This afternoon he walked with the aid of a walker receiving very little support. I've added a few pictures of some smiles taken today while in radiology (also check out the glow sticks pictures!) and also added a brief video taken during physical therapy.
1/31- Monday was a rough day for Nick. After enduring a grueling (at least for him) physical therapy session walking to/from the door in his room, his Orthotist returned with a new vest (see picture 1 and picture 2). Nick wasn't very happy because he has to be turned and rolled to put the vest on. Shortly after settling down from getting his new vest, Dr. Lenke showed up to take the vest off (Nick was face down), remove the dressing and inspect Nick's back. Again, Nick wasn't very happy. After Dr. Lenke left, it was decided that Nick's catheter could be removed. I think we all know how happy (NOT!) Nick was about that. By then it was late in the afternoon and Nick had all that he could take and slept most of the rest of the evening into the night.
1/30 - Added Carole's e-mail update from Saturday. Click here to read it.
1/29 (Saturday) - The morning started with physical therapy and Nick (reluctantly) was able to sit up for about 10 minutes. Today was the first day he's gotten out of bed and into a wheelchair. In the process of getting out of bed he complained that his pain level was at 25 (on a scale of 1 to 10!). Needless to say, we were concerned and the tears convincing. Once he was out of bed and in the wheel chair all of the adults (there were 4 of us) commented on how "impressed" we were with how Nick transferred from the bed to the wheelchair. Nick then promptly replied with "I'm not impressed" causing a good laugh! Afterward we took him for a ride around the floor and while on the floor we asked him what his pain level was and he replied with "5" - obviously feeling a little better.
1/28 - Added comments from today to the Surgery Update page with today's progress that includes pictures of the vest Nick will be wearing for the next 2 months. Have also added Carole's latest e-mail update. Received pictures of X-rays from Dr. Lenke's office which show Nick's progress.
1/24 Update - Both Will and Nick had fun this past weekend visiting the Magic House in St. Louis. Links to pictures from this past week and weekend have been added below, and you can click here to read Carole's update for the week. Nick's next, and most significant, surgery is scheduled for Thursday, January 27th, 2005. During this surgery which is expected to last about 8 hours, using hooks and/or screws, Dr. Lenke will attach a metal rod to Nicks spine to prevent the kyphosis from recurring. Nick will also undo fusion on the backside of his spine and will be in St. Louis Children's hospital for 7-10 days after the surgery. At the end of the 7-10 days, Nick should then be able to come home for about 2 months - YEA !
I'll try my best to post an update either Thursday night or Friday during the day.
Click here if you would like to send a note to Nick's mom and dad from this website.
This site was last updated 05/23/09