John has been completely off of the vent now for over a week. Even at night. He is still attached to a humidified oxygen hose. This is necessary because they want to keep his secretions moist. He needs to remain inclined to keep pressure off of his wounds. This position is not ideal for getting rid of chest congestion, so he still needs to have his lungs suctioned several times a day. For easy access to the lungs, they will leave the traec  in. They did decrease the size of the traec, which seems to have lessened the secretions some. We are in a waiting period, as his wounds slowly heal. The wound surgeon  wants John’s  body to do as much healing as possible before any type of constructive surgery is considered.  His “flat” position  makes PT and OT a challenge, but the therapists do work with him. Over coming boredom and the blues is a major task as we wait for the wound healing. With a special adjustable computer stand, we did get his computer and “sip and puff” set up today. He spent the afternoon reading emails.

John has now been off of the ventilator for 28 hours straight. If he continues to do well, they will not put him back on the vent at all. He is hooked up to a hose with incoming moist oxygen. Continuing steps involve decreasing the size of his trachea, increasing the time that he uses his speaking valve, and decreasing his secretions. The wound healing is going  slowly. The doctor will let us know when  he thinks some sort of “flap” surgery is indicated.  Skin grafts are not a viable option because of the continued pressure that will always exist in the damaged areas.

John is now on step number 14 in the vent weaning program. These later steps involve being taken off the vent for increased periods of time. Yesterday, he was off of the vent for 16 hours. While he is off of the vent he is hooked up to incoming moist oxygen. Although these periods of time have been much less stressful than those times off of the vent in Louisiana; they  still require effort on John’s part. He has not been able to sleep when he is off of the vent. He will stay on the vent and get some needed sleep today. Today is Charlie’s first birthday. We celebrated with a party at The Little Gym with friends and family this past Sunday. We had hoped to kidnap John from the hospital to attend, but hospital liability rules prevented us from doing so.  The insurance coverage has approved another week here. They will communicate with VIBRA and approve a week at a time if they feel that it is medically warranted.

We are back in Portland with John this week. He missed us, but has been working hard. Today we were told that he is on step 9 of a 16 step vent weaning process.  The first few steps were very difficult, while the latest ones have been much smoother. The wound healing is slow but is progressing. Surgery to move tissue and skin from nearby areas to cover the effected areas will most likely be needed for complete healing. The wound specialists will let us know when they feel that John is ready for additional procedures. The doctors at VIBRA will request additional time to treat John if he is continuing to make progress. The original 20 days approved by insurance are rolling by quickly.

Vent weaning is a slow difficult process. There is a possibility that John will always need some ventilator assistance. We will know more as the process continues. The Wound specialists have been working diligently to heal John’s bed sores and to prevent more from occurring.  John enjoyed visits from April, Joe, and Uncle Diet this past week. Charlie kept the facility entertained while she tested out a new high pitched shriek. Matti, Charlie and I are in Newport for a few days and will return to VIBRA on the 18th. Uncle Diet and Lucas plan on visiting and checking in on John until we can get back.

The drive to Portland was smooth and event free. We drove the new van.  We arrived at VIBRA Specialty Hospital near dinner time. It took a couple of hours to get John all settled in. He has already been seen by a Pulminologist, Wound Care Specialist, Physical Therapist,  a Physician’s Assistant and several respiratory therapists and nurses.  It took some effort to adjust the new ventilator so that John felt comfortable, but we believe that if vent weening is possible, this is the place. The wound care specialist prefers that John’s OT and PT take place in the bed for now. She does not want him sitting up for long periods. John prefers his bed and the view from Newport, but is hopeful that the many medical professionals at VIBRA can help him to progress. Hospital rooms can be boring, so if you are near Portland, please consider visiting.

John’s insurance has approved 20 days in VIBRA Specialty Hospital in Portland Oregon. The facility focuses on vent weening and rehabilitation. We are planning to take him there tomorrow. We hope that if his time there is productive, the insurance  will  approve more time at VIBRA. John has had two trips in the van so far. One trip to his pulminologist in Corvallis and  one to his general practitioner in Depot Bay. These appointments were necessary before he could be accepted at VIBRA. We did finally get an in-home wound care vac approved & set up and hope that VIBRA is able to continue with one.  We have kept John healthy here at home, but are looking forward to the possibility of vent weening and more PT, OT, Speech therapy, and emotional support.

John met with a representative from NuMotion who will order both a manual and a power chair for John. He left  us a loner chair until John’s comes in.  He is also ordering a special shower chair. Our local contractor will work on an open shower design to accommodate John and the chair. We have a new Adaptive Toyota Van that will host almost any style of wheel chair.  As soon as John is feeling up to it, we will all take a ride in it. Thanks to one of John’s high school friends, Mark Kates, and the generosity of his company, CSI; John will be getting a new variable pressure- air mattress topper. This should help facilitate the healing of John’s bed sore. We are also hoping that the wound vac will come in this weekend. John enjoyed a visit from his Dad this past week. Visits are the best medicine

John has been approved for Social Security Disability.  A representative from the local disability office came and met with him today. They are going to help provide in home health care aides to help with John’s care. Matti can even apply to be one of the paid helpers. On Wednesday a representative from NuMotion will come here to help John pick out a wheel chair to best meet his needs. He will be leaving a loner chair with us.  We are also looking into renting a adaptive van to help us decide what type to eventually purchase.

John has been depressed lately. Although glad to be out of the hospital, he is  still dealing with the difficult realities of his situation. It is hard to imagine how limiting his world has become. We are working with Scott Wahl in the hopes of automating some things and putting some control back into John’s hands, but it is not a fast process.

Visits are the best thing for John at this time, so if you are any where near Newport, stop by.

I plan to post only once a week or if we have something special to share, so please don’t become concerned if the posts do not come as often as in the past.

Even though it was the Thanksgiving holiday, a social worker with In Home Health Care met with us on Saturday. She was here to be certain that we get connected with all possible help.  So far, we are set up with a wound care nurse three times a week and a respiratory therapist  once a month.  We will be setting up a visitation schedule with PT, OT, and Speech this coming week. The social worker is also available to address the family’s emotional needs when ever we need her.