1000 Oceans
Living with Trisomy 13
I know I'm probably not the person that should be making this "reveal"", but I am very proud to announce that Dana and Travis are expecting. She is about 4 months along and it's been a hard first trimester, but getting better as time marches on. We are starting to make plans for maternity clothes, Baby Showers and another trip for me to Washington! I'm very excited and so proud of them both!
I know it's been a long time since I've posted last. The last post was the hardest thing I've ever had to write in my life. I never thought I'd have that message to send to those who have followed Bryson's story. The story of course doesn't end. We are still trying to cope with the loss of such a precious, dynamic presence in our lives. It will never be the same again. We are forever changed. We were changed the day that Bryson graced us with his presence. He was and I believe still is a ray of hope to others who are blessed to have a special angel brought into their lives. Dana and Travis have had to live through their grieving separately as Travis had to go back to Iraq in late March. Please continue to keep them both in your thoughts and prayers as they need their hearts to heal.
Plum Wine...good to the last drop
Bryson is back at Madigan Army Medical Center in the Pediatric Unit. He's not been able to keep down his feeds and started having diarrhea so he's not feeling too good right now. Afraid of dehydration, Dana took him to the ER last night. This is really been a rough Thanksgiving for her and Laura, a dear friend that has moved there.
Please keep Bryson in your thoughts and prayers. He is having some very serious heart issues. His heart rate keeps dropping dangerously low and is having arrhythmia's. This past week or so, he's been having a difficult time keeping his food down and he is very sick right now. We are all very worried at this point and all that can be done is just keep him comfortable. Dana held him all night long.
I apologize for not writing too much to this blog as of late, but it is extremely difficult. It is difficult to find the words to express the profound sadness in my heart about Bryson and his venture into what is now referred to as Persistent Vegetative State. I've tried to read as much as possible about PVS and there is so much that is hypothesized. Why? Because the likelihood of someone returning to a state of conscientiousness from PVS is rare or even if it did happen, then it was likely that the person was not truly PVS. In a recent study of 40 individuals thought to be in PVS, they were misdiagnosed 43% of the time.
Bryson came back home again on Saturday. Nursing care has been switched to nights. Daisy is working the night shift Monday through Friday and Doug on weekends for now. He is doing okay now.
Bryson has had a relapse. He was placed back in the hospital on Tuesday Sept. 15th. His saturation levels dropped to the 80's and his secretions were a little yellowish. Dana called EMS because the home equipment was not working properly. As soon as EMS got their oxygen to him, his sat levels started to increase. They transported him and while in the Pediatric Unit at Madigan Army Medical Center, he started having seizures. They are working to get Bryson well with antibiotics to treat whatever bug was making him sicker and now are adjusting his meds for the seizures. Seizures often come after Traumatic Brain Injury and he had been on a mild dose of dilantin, more as a preventative, but now that the lesions in the brain tissue may be causing the seizures, they are having to take a second look. His heart and his breathing have remained normal, even through the seizures.
Not only are we happy to celebrate Bryson coming home, but tomorrow is Dana & Travis' 4th wedding anniversary. AND Travis just yesterday made Sargent! We are so proud of him. He deserves it!
We've been working the last couple of days getting things in order for Bryson to come home. He'll be discharged either Saturday or Sunday according to the doctor that performed his Traecheostomy.
A couple of days ago, Bryson had a setback. His CO2 levels got very high, in the
Bryson is out of the Pediatric Intensive Care Unit and is in the regular Pediatrics Unit at Madigan Army Medical Center (MAMC). The room has a direct view of Mt. Rainier and he's the only one in that room of 4 beds total. So basically, it's still a private room. He is receiving nutrition by NG tube and has only oxygen via nasal cannula. He is beginning to stir a little bit more when touched and talked to so things are so encouraging. This time a week ago, we weren't sure he was going to pull through this, but just as his usual thing, Bryson shows us who is boss.
Hello all... I know owe an apology for not keeping those of you who are dear to us and Bryson updated. things usually go very well day to day..... until this last Friday when Bryson's heart stopped. It was a full cardiac arrest and we where unaware that he had stopped breathing as we had only just put him to sleep. He aspirated the juice we had given him last and may have been without a breath or heart beat for several minutes before Travis had found him.
Must have seemed like we fell off the map for a long while to some of our folks who check this blog. Well here's the scoop. We up and scooted off to the wonderful state of Washington. It's a damn sure long way from the hell pit of Texas we were eager to leave.
People can be so completly amazing when you think there isnt much they are able to do, they can do almost anything better than you!!