Living with Trisomy 13
Wednesday, September 28, 2011
Wednesday, May 04, 2011
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!
Wednesday, February 23, 2011
Longing for Bryson
It's been a very long and hard year. 365 days of longing, of wishing that what is very real was just an illusion, was just a bad dream. Hoping that there would be peace and understanding of the profound loss, but yet I still grieve.
We all grieve in different ways. Some in total silence, some with verbosity. Sometimes with kind grace, sometimes unabashed. All the time with question of the what ifs, the whys, should I have done more? Could I have done more? Would it have made a difference? Would he still be here with us even then? Was his time on earth written somewhere? Is it that way for all of us? Did we just assume that because he had proved so many professionals wrong that he would forever be with us? It certainly seemed that way.
Life was more engaging, more challenging yet delightful with Bryson in it. He was the brightest shining star in my sky. He was my only grandchild. I should have taken more pictures. I should have left my job to be with him 24/7. These are things I will constantly wonder about all may days of my life.
As for tomorrow, rather than toiling with things I can never understand nor have the answers to or spend the day crying, I plan to spend the anniversary of his death doing something good. I want to take this day and pay it forward, in remembrance of the child that changed my life, the precious little boy who changed who I am. He changed a lot of people, for the better I think. He made his mark on the hearts and minds of so many people literally across the country and even around the world. So in his memory every year, I want to do something that spreads a little bit of love, kindness and grace. Bryson would want it that way.
Wednesday, May 26, 2010
A time for healing
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.
Dana has come to visit me here in South Carolina and I think the change of scenery has been good for her. She is in Orlando visiting her father Dan now. She will be back in South Carolina then we'll travel hopefully to Washington, DC and Indiana to see my father (her grandfather) who will soon be 91 years young! We will travel on a cross country trek and hopefully will take in the beautiful sights of this great land. I hope that perhaps we'll take time to see some of the great Museums in Chicago, Wisconsin Dells, The House on the Rock, Mt. Rushmore, Billings and Bozeman Montana, Yellowstone, Spokane and Yakima Washington and finally, back to Tacoma. Frankly I'd like another shot at Mount Rainier. Then I'll fly back home to South Carolina.
As for Dana and I, it's long drives in a car, going places, we've never been, new adventures, seeing nature, wandering out on our own that will be most healing for both of us. To reconnect, to reflect, to enjoy each other's company, to bond. She and I are more like girlfriends sometimes that I have to remind her of TMI! Too much information! There are some things Moms just don't wanna know. We are very close, similar in many ways but different in many others. She is more progressive, and I am conservative. I wish I had a dollar for every time someone mistook us for sisters. What a compliment to me and I might be biased, but I think my Dana is beautiful, charming and funny.
There's so much too see, so much to do and I like to travel with my kids. This time, it will be a bit like Thelma and Louise, saying the heck with the rest of the world and the way this year has been so hard on us, except I promise we won't be outlaw heroines like Thelma and Louise. Maybe there will be a Brad Pitt type character that can squeeze into the back seat of a Honda Civic! One can only hope...
Friday, February 26, 2010
Bryson is a Heavenly Angel
It is with great sadness that I have to tell you all that have followed this blog for the last three plus years, that Bryson has gained his Angel Wings. He was an angel sent to this earth, to this family to teach us about unconditional, complete and fulfilling love. He did all that by just being Bryson. He passed away on Wednesday afternoon at 3:23 p.m. on February 24th, 2010. His mommy, Dana, the one who put so much of her life and love to care for Bryson was by his side. He went bravely, he went peacefully with no pain as he enters into the next realm. There will be no more pain from this earth or from his fragile body. He taught me so much in his short 3 years, 8 months and 15 days. He taught me how to never take anything in life for granted. Every day is precious. Every day should be lived with the strength of will and perseverance that he showed to us. We should all be so brave. He taught us all what it is to love someone without rules, without boundaries, without conditions. He drew us all closer as a family. Bryson's memory will be preserved with our memories of loving him.
To those doctors, nurses, case workers who all could see something extraordinary in Bryson by giving him the best and appropriate care, we thank you from the bottom of our hearts. Thank you for not seeing a disability or diagnosis, for seeing a little child with special needs in a special place in our hearts. Please learn from Bryson, that just because a textbook says one thing that as an human being, we chart our own paths, we do as our will tells us to do. It was Bryson's will to stay with us long enough to complete his objectives, to teach what the human condition of love really is all about.
Tuesday, January 05, 2010
New Year 2010!
The picture above is Bryson, Dana and Joanna the Weekend Night Nurse. We stayed at home and watched the ball drop at Times Square and again we saw the fireworks display at the Seattle Space Needle from the comfort of a sofa. It had rained all day and cleared up around 10:30 p.m. just in time for the New Years revelers to enjoy the night.
I traveled back to South Carolina on the 3rd and got hung up in that chaos at Newark Liberty Airport. There was a security breach around 5:20 p.m. What a total mess! We were even lied to by staffers of the airlines. TSA fell asleep at the helm and an idiot walked in the Exit area bypassing the security checkpoint. This exit area is wide and didn't appear to be monitored closely. I was clearing the security checkpoint around 5:30 because my plane to Charleston was supposed to take off at 7:20 p.m.and I wanted to catch something to eat before I took a shuttle bus to Terminal A where my plane was to depart. I sat directly in front of the window where my plane was supposed to park at Terminal A, and finally around 7:00, the Continental Airlines Gate Rep announced that they couldn't find our plane. The person sitting next to me going to Halifax stated that her Gate Rep said they had a plane, but no crew! TSA was all over the place! It was a mass of humanity with no sitting room, people standing, lying everywhere. If there had been a fire or some other thing, there would have definitely been deaths from the stampede. My layover at Newark was a long one and was only made miserably longer from the security breach. No planes were leaving and no incoming traffic left the tarmacs. Surely there's a better way than this!!!! I will never fly though Newark ever again! Ironic that it's named Liberty, yet I felt like I was held captive.
Tuesday, December 29, 2009
Pictures of Bryson
Christmas in Washington
It was a Merry Christmas at the Nault Home. We went to Fantasy Lights in Spanaway, WA. There were many great displays. Laura liked the spaceship display while I liked the Santa on a motorcycle jumping huge gift boxes. The tree in the picture above was completely covered with lights on every limb. I can't imagine how much time that took to do!
We went back home and opened gifts on Christmas Eve while Travis was on Skype with us. Santa was good to Bryson because Bryson has been a sweety boy this year.
Happy Birthday to Dana
Plum Wine...good to the last drop
Dana, Laura & Samurai decked out for Christmas
Dana & her reluctant 30th Birthday
On Sunday, December 20th, we celebrated Dana's BIG 30th birthday. She doesn't want to claim the number and insists it's her 2nd 29th Birthday. So being brilliant, she thought she'd change the number I imprinted on her birthday cake to a 29, but instead changed the second digit to a 2 and not the first digit, hence making herself 32.
We went out for dinner at Samurai Japanese Restaurant. The flames, the plum wine made Dana a little warm so she tied her hair up with chopsticks.
Thursday, November 26, 2009
Bryson is back in the Hospital
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.
This past week, one of the nurses left with no notice so that leaves them once again without much needed help. This whole situation just really stinks.
I will be going to Tacoma next month for Dana's birthday, Christmas and New Years. Hopefully I can offer some assistance but will need a lot of teaching and coaching as I don't know how to take care of Bryson's newfound needs. I will gladly do anything for Dana, Bryson, Travis and of course Laura so they can have some much needed relief.
I hope everyone has had a good Thanksgiving.
Sunday, November 15, 2009
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.
She contacted Travis through an emergency call through the Red Cross and he called her back shortly afterward.
I have just talked to Dana by phone and Bryson is doing better this morning. His heart rate has returned back to normal levels. It was a very rough night though and she hopes take him to the doctor tomorrow to find out what is happening to our precious BEAN. We hope that we can have some answers soon.
Monday, October 19, 2009
On Being Bryson
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.
Q: What is PVS?
A: The vegetative state is a clinical condition of complete unawareness of the self and the environment, accompanied by sleep-wake cycles, with either complete or partial preservation of hypothalamic and brain-stem autonomic functions. In addition, patients in a vegetative state show no evidence of sustained, reproducible, purposeful, or voluntary behavioral responses to visual, auditory, tactile, or noxious stimuli; show no evidence of language comprehension or expression; have bowel and bladder incontinence; and have variably preserved cranial-nerve and spinal reflexes. We define persistent vegetative state as a vegetative state present one month after acute traumatic or nontraumatic brain injury or lasting for at least one month in patients with degenerative or metabolic disorders or developmental malformations.
The clinical course and outcome of a persistent vegetative state depend on its cause. Three categories of disorder can cause such a state: acute traumatic and nontraumatic brain injuries, degenerative and metabolic brain disorders, and severe congenital malformations of the nervous system.
Q: What is the prognosis?
A: We don't know...no one can really know. Here are some findings from the New England Journal of Medicine.
Outcome for Patients in a Persistent Vegetative State (PVS) after a Traumatic or Nontraumatic Injury.
Fifty-two percent of adults and 62 percent of children who are in a PVS one month after a traumatic injury recover consciousness within one year. The majority recover within the first six months; recovery after six months is unusual. In contrast, for patients in a PVS one month after a nontraumatic injury, recovery of consciousness is much less frequent (15 percent of adults and 13 percent of children) and is extremely unlikely after three months. Approximately 5 percent of patients in a PVS 1 month after injury were lost to follow-up at 12 months.
Q: What is the incidence of recovery in Children with PVS after 12 months?
A: Traumatic Injury ( n = 106 )
Recovery of Consciousness 62%
Severe disability 35%
Moderate disability 16%
Good recovery 11%
Non-Traumatic Injury ( n = 45 )
Recovery of Consciousness 13%
Severe disability 7%
Moderate disability 0%
Good recovery 6%
Data were collected from a series of patients in PVS one month after injury and do not include individual case reports. Some patients who recovered consciousness died within 12 months after injury or were lost to follow-up. The data for non-traumatic injuries reflect all causes, not just postanoxic injury; for this catagory alone, the prognosis is poorer than that suggested by the data
Data for functional recovery are for patients who had recovered consciousness within 12 months after injury.
Tuesday, September 22, 2009
Back Home Again
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.
I am in the process of adapting clothing for him to wear as it is difficult to dress Bryson. Tee Shirts are near impossible to put on him as he has his feeding tube and traech that would get in the way. I bought some tee shirts in a larger size and have cut them from the neck down the sleeves and placed velcro tabs on the openings. They make a soft velcro for babies now and that's what I'm using. I hope it works out. I have a few more to finish and a special surprise to make and I'll ship them off sometime this week. I hadn't thought about it but there really is a need for adaptive clothes. They make them for adults, but there is nothing on the internet for children. If it works out, perhaps, it's a business I could start. Through the years I've found it terribly hard to find toys and theraputic things appropriate for Bryson and what is offered in Adaptive Catalogs such as "Abilitations" is quite expensive and has limited use. We've had to be very innovative when it comes to Bryson, his care and development. It's really amazing some of the things we've come up with. All very ingenious.
Friday, September 18, 2009
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.
It is hoped that he can come home again perhaps tomorrow, and hopefully with more approved nursing care.
Please keep praying for Bryson, his Mommy and his Daddy who is now down range.
Thursday, September 10, 2009
Home Sweet Home
Bryson was discharged from the hospital and is resting and recuperating comfortably at home. Daisy his nurse started today. I am so glad he's able to be home in his own bed, in his own environment where he is loved.
I don't have too many details, but will write more as soon as I know more.
Please keep them in your prayers as they transition into a different way of life.
Tuesday, September 08, 2009
I apologize for not posting for a few days for those of you that have been following Bryson. I got back to South Carolina Sunday Evening and spent Labor Day laboring to get my house back in order.
Bryson is likely to be discharged from Madigan Army Medical Center tomorrow. Dana and Travis are ready for him to come home. His bedroom is all ready and set up for his needs. Thursday Olympic Pharmacy delivered all the medical supplies and equipment to make Bryson comfortable at home. There was so much stuff it seemed overwhelming at first, but once we got some storage systems that will work to keep things organized and tidy it was looking like a little boy's bedroom again with bright stripes of all colors and feels really homey. Not a hospital room. Travis has installed a flat screen TV so Bryson can watch Rescue Me with his Mom.
Dana got to change out the Traech tube today and she said she was really nervous, but Dr. Boseley boosted her confidence and she decided it wasn't so bad after all. That will need to be changed weekly at a minimum. There will be daily maintenance and cleaning and suctioning of the Traech. Daily, he'll have his medications and vitamins. He'll have a continuous feed line. He's now up to 30 ml per hour so he's on the right track. Before he got sick, he was 30+ pounds, but dropped down to about 25 and last week he was up 2 pounds. He'll need daily physical therapy to keep from having his muscles atrophy or his joints become stiff. They even have equipment that will be available when she needs to take him to appointments. He was fitted for a new car seat and his Bingo Stroller is being modified to his new needs.
The Sleep Safe bed has been declined, but hopefully an appeal will overturn their decision. He really needs this type of bed as the head of it inclines so that his food stays down so as not to aspirate. His immobility also makes this bed necessary as he needs to be turned and repositioned every 2 hours.
I finally got to hold Bryson on Thursday and it was very cathartic for me and hopefully Bryson. I sang to him songs that I used to sing to him when he was a baby. He opened his eyes ever so slightly and was looking at me. I know Bryson is in there and wants to come out and play. He just needs time to heal and get strong again. I pray for that day to come along... soon.
Wednesday, September 02, 2009
Many things to Celebrate!
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!
Getting Ready for Bryson to come home
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.
Bryson is doing so much better. His color looks good, he's moving around more, but today he was getting kind of stiff which he will need a lot of physical therapy to prevent that from happening. He has had splints made for his hands to prevent them from curling up into a fist. We bought him some Uggs boots to keep him from getting drop foot from being in bed so long. The muscles tend to atrophy from lack of use and they draw up and become rigid without regular therapy to keep things moving. The physical therapist also said that helping him to sit up will also help with his therapy. This is exactly what is planned once he gets home.
We are having to set up the crib again and get baby blankets as if we were bringing home a newborn. The Sleep Safe bed is on order and we don't know how long it will be until that arrives, hopefully soon. To see a Sleep Safe bed visit: http://www.sleepsafebed.com/Products/sleepsafer.htm
It works very much like a hospital bed, but is more pleasing to the eye.
Dana is coordinating getting his Home Healthcare on board for when he comes home.
Monday, August 31, 2009
Traecheostomy was performed
This morning, Bryson had a Traecheostomy (or Traecheotomy) in the 10:00 hour. Everything went well. It was only a half hour procedure to place a traech tube in his airway. He has been breathing so much easier and deeper with the traech in place. This will help to keep his airways open and that his tongue falling back would not be an obstruction. Secretions will also be able to be suctioned out better. Now a Traech does come with risks, however, any type of procedure comes with risks, but we felt that this was something that would help Bryson. The Traech tube will have to be changed out in a few days and Dana & Travis will be trained on the care and upkeep of the tubes.
After another week in the PICU, as long as everything goes well and Bryson does not have any setbacks, he can be transferred back to the Pediatric Observation Unit and from there he could be discharged to the care of Dana & Travis and the home health care nurses. As of this writing, and prior to him having a traech placed, he was eligible for 8 hours a day, 7 days a week nursing care and 40 hours respite care per month for Dana, however, since things have changed and due to his unique situation, they may possibly be eligible for more. It will all depend on what his doctors will authorize.
It's been a tough 2+ weeks, but Dana & Travis are holding strong that Bryson will do his best healing at home. Travis has been the best at making sure that Bryson is given every opportunity to survive and progress past this, despite what doctors, neurologists, pediatricians, respiratory therapists may say to the contrary. Dana is strong too, but being a worried Mom and nurturer, it is easy to get dishearted by what many of them say to us. I admire them both for their tenacity and dedication to my precious Grandson and thank them for all the things they do for him and will continue to sacrifice for his good.
Continued prayers for Bryson for healing and to Dana & Travis for continued strength and resolve.
Saturday, August 29, 2009
Setback-not coming home (just yet)
A couple of days ago, Bryson had a setback. His CO2 levels got very high, in the
70s though his oxygen saturation levels were fine. This means that even though he was breathing in enough oxygen, he was not expelling enough of the CO2 gases and it can become toxic. His feeds through the NG tube were also not working as he was vomiting a couple of times and that causes concern of aspiration. We came to find out that one of the nurses gave him the wrong type of formula, one that he did not tolerate when he was on formula as a baby. They switched back to the correct formula and reduced the intake to give his stomach a chance to handle it gently.
Dana & TRavis talked to the ENT (ear nose throat) and the Traecheostomy (if there is to be one)is not scheduled until Monday or Tuesday and then Bryson will have to be transferred back to the PICU unit. They didn't want to do it on Friday over the weekend when the hospital is nearly a ghost town. The docs are only on call during the weekends. This would give him a week in PICU with their full attention again.
If he could just start swallowing and coughing better and to keep his airway clear, would be wonderful and the traech may not be needed. He will also have to be on a C-Pap machine and that will work fine with a traech as sometimes, his tongue will obstruct the airway.
He is stiring a bit more these days which is also a good sign. But the Neurologist doesn't feel that his movements are cognitive movements, only reflex. I'm not sure. He responds to his Mommy & Daddy differently than he does with the Neurologist, whose job is to poke and prod and cause pain for a reaction. We take a much gentler approach.
Dana & Travis have also interviewed 3 Home Health Care Nurses to find a good fit. They bring many years of experience in Pediatric Nursing to the table and since they have to work in Dana & Travis' home, they will also need to be non-conventional in their approach to Bryson's care and development as they have spent three years challenging Bryson to do more, to adapt to survive rather than to just be a Faberge' Egg.
Tuesday, August 25, 2009
Transferred to Pediatric Unit
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.
It's looking like Friday, he may be discharged from the hospital to come home! They are working with agencies to get certain equipment for the home and a special bed for Bryson. The bed is a Safety Bed that can be lowered and brought up, can incline the head of the bed just like a hospital bed, but doesn't look so clinical. It has sides that flip down so that you can get to him and acrylic glass on those panels. He may now be entitled to some nursing care now that all this has occurred. His wheelchair/stoller will have to be refitted to his specific needs now.
He will probably have another MRI done in about three months to check on healing again. It will be a long road ahead and we don't know the long term prognosis for him developmentally, but, he is still here with us and that is all we could hope for.
Miracles happen and Bryson has been a living miracle.
Monday, August 24, 2009
Today, Bryson had a second MRI since his brush with death on Friday August 14th. The results were better than expected. The Neurologist, Dr. Yoder said he had no bad news for us for a change. What showed up on the first MRI were large areas of white damaged or dead brain cells and swelling. What was showing up today only was small effected areas. Grey and variants of the color grey are normal tissue of the brain. So, the swelling is down, and healing is occuring. This was what we had been holding our collective breaths to hear.
Bryson is breathing on his own with only a canula ped mask that has a penguin on it. The cute medical equipment makes a hard situation seem a little easier. He still needs to start protecting his airways with swallowing and coughing. It's taking a little longer with Bryson than perhaps a typical child to come around, but we are patient and very grateful for the strides he is making. Again, Bryson does not cease to amaze me for the will he has to live.
Thank you for your continued prayers, they are bringing us miracles everyday.
Saturday, August 22, 2009
Our little fighter
Bryson is now off of the vent completely! The docs extubated him (removed the ventilator tubes) He only has a mask now that delivers oxygen. He does have secretions that have to be suctioned out to keep him clear. He was given a steroid to help heal the airway and epinephrine to keep his airways clear. The next hurdle is to get him to start coughing, swallowing to protect his airways or there is the danger of aspiration of those secretions. He is repositioned in his bed every two hours to help the lungs drain of excess fluids or pneumonia can settle in his lungs. His Grandma Tammie got to hold him since he didn't have so many tubes to contend with. Hopefully I will have that opportunity soon as I want to hold him close.
He is an amazing little boy to have gotten so far after such a horrible tragedy. He is beginning to come around a little bit by fluttering his eyes. He is out of it mostly as he is working very hard just to breathe. The breathing rythym is not what it should be, but then, perhaps that's "Bryson's normal" with his central apnea. He will breathe deep and regular, then have one big inspiration, then "bottom out" and about 8-10 seconds later will take shallow breaths only to go back to a regular rythym. We have found that auditory stimuli will get him back on track.
Yesterday, the weirdest thing was happening so we had to call in the doctors and Respiratory Therapists to show them what was going on. Bryson has this Winnie the Pooh, music box that was part of his crib mobile. We would wind up the music box, and while it was playing normal, his breathing would stay on track, however, as with all music boxes, they eventually wind down. So when it started to slow, his breathing would slow with the pace of the music box. When it would stop, he would bottom out. We'd rewind it and lo and behold, would start back to a normal rythym. We kept winding that thing for hours until he was able to establish his pattern
Thank you to those of you who still continue to pray for us. We are so awestruck that Bryson has come so far. Keep the prayers coming.
Friday, August 21, 2009
Saturday, is a really big day. The doctors will extubate Bryson to see if he can tolerate being 100% on his own breathing with no tubes and vent and if he can protect his airway with coughing and swallowing. We will also be able to tell whether he can be further assisted with a traecheostomy to keep his airway clear. It is our hope that he will be able to do this all without a traech. Then come Monday, there will be another MRI to see if damaged areas of the brain are rejuvenating and healing. If he can breathe, swallow and cough and/or with the assistance of a Traech, he may be able to come home with hospice care. He will likely have to have a nurse 24/7. Nutrition at this juncture is planned only with an NG tube as we don't want to subject him to surgery for a GI tube at this time.
We don't know at this point what Bryson's long term development will be like as he is back to being pretty much as he was at 2 weeks old. We are holding out hope that some of the little boy we knew just last week will begin to shine through and bring us laughter and joy again. It will just take time, love and patience. This family has all of that and more. Because Dana & Travis are such wonderful parents to Bryson, they will fight to challenge him as that's how he got as far as he did and still exceeds everyone's expectations.
The doctors are pleasantly surprised at how Bryson has been progressing and they are with us in challenging Bryson to get better. I think they are beginning to find out what a true fighter he really is. Just telling them that he is a fighter isn't enough, they had to see it for themselves, and they have.
I have the utmost respect for the team treating Bryson at Madigan Army Medical Center. They have been caring, compassionate and honest with us every step of the way. They have answered every question we have made to them with candore.
I hope to be able to share further good news with you all soon.
Thank you for continuing to pray for our Bryson. Your prayers are being heard.
Breathing a little easier
Dear Family & Friends,
So that everyone will know what's happening here in Tacoma:
As you may already know, Bryson stopped breathing last Friday. We now know that he did have a hearbeat, although, very slow and very faint. EMS was called and they used epinephrine (adrenaline) to get him started. What we don't know is how long he was without oxygen. It only takes 4-5 minutes for the brain to be deprived of oxygen until damage begins to occur. He does have some brain damage, however on an MRI, the normal brain shows up as grey while the effected areas show up as white. How much of that white area is dead brain cells and damaged brain cells, you cannot tell. Dead cells get absorbed into the body and damaged cells can heal and regenerate. The neurologist conducted a EEG (electro-ecephalagram) on his brain to measure brain wave activity. It was grim. They said that all they got was static, however, one of the medications he was on, has been known to also cause this static. The medication is versed and it is administered to stop any seizure activity. He does not have any seizures. They took him off the versed and waited 24 hours to perform another EEG on Wednesday. The result came back that the static was indeed caused by the medication.
The reasoning behind these tests were to find out if there was damage to his brain stem. Without the use of the brain stem, there is brain death and all involuntary systems, i.e. heart, breathing are compromised and hope for life without total support by artificial means is lost. So the next step in this process was to see if Bryson could handle breathing without 100% support from the vent. The lead physician, tried to run an arterial line for blood gas readings. He had difficulty finding a suitable artery and had to use one of the existing central lines Bryson had. (Arterial being far more true than veinus readings for blood gases as the Arteries carry oxygen enriched blood throughout the body while veins return it back) Respiratory therapists, his intensivist, pediatricians were all present to see how he would react with aid of the vent was reduced to what they call a "blow by". This means the vent is providing 100% oxygen to the airway, but does not use any pressure to force it into his lungs. It was all up to Bryson to do the work that the vent had been doing since Saturday. Sure enough! Our boy came through and was breathing on his own and has continued to do so since 12:30 p.m. today. They drew blood gases to make sure his CO2 levels were not too high and each VBG (veinus blood gas) came back good! Now we can all breathe a lot better. This is extremely encouraging.
We are still not out of the woods by any means though. This coming Monday, they are planning to conduct another MRI to see if the damage is healing and how much really was damaged and how much resulted in dead brain cells. (hopefully less than they think) Bryson continues to shock and awe these doctors as he has done from DAY ONE! They don't know him like we do and we know of what wonderful miracles he has in his big bag of tricks.
He looks really good. He doesn't look sick. He does look though, like his muscles are starting to atrophy from lack of use. He is floppy like a ragdoll, but is that due to the Fentanyl and being so tired from fighting so hard? They have reduced his medications to only just enough not to fight the tubes running from his little body.
They also withdrew the interveinious feedings and have now gone to giving him nutrition by NG (nasal gastrointestinal) tube. This is how we had to feed Bryson right after he was born and we did so for 5-6 months. He loves to eat so it will be good to get something into that stomach.
Yesterday, they finally granted Dana her greatest wish, to hold her baby. It was cathartic for perhaps both of them.
The doctors here at Madigan Army Medical Center (MAMC) are some of the most caring and compassionate doctors I've ever met in my life. I've never known a group of doctors and interns, sometimes 6 or 7 of them come into the room at the same time and spend as much time as an hour to an hour and a half, to talk to us and answer our questions and set a game plan for that day or the next. This is healthcare as it should be! The hospital is very nice and there are courtyards with babbling brooks and green spaces to rest a weary soul. There are huge picture windows that frame Mt. Rainier in the distance with American Flags in the forefront. It's awe inspiring.
Your prayers have brought about miracles. We are witness to it every day here. Please keep those prayers coming as we hold vigil at his bedside. Thank you for your prayers.
Tuesday, August 18, 2009
Monday, August 17, 2009
Sunday, August 16, 2009
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.
And this is a Testament to the kind of man and medic my husband is, he worked on him to revive him for 6 to 7 minutes and I called 911. Shortly after they arrived, the EMT's gave BEAN a epi pen and a faint heart beat was heard. Today he is in stable condition at the hospital here called Madigan ARmy medical center. It's still very scary as we don't know how long he was dead for until his breath came back to him. He is breathing on his own with assistance from a ventilator and is under heavy sedation so not to be irritated with the tube down his throat. We are certainly not out of the woods. Bryson may never be the same, and if there is swelling in his brain from lack of oxygen, tonight will tell which way the tide will turn for him. But as those many of you who know our BEAN, he is a valiant fighter and strong at heart and still very young enough to recuperate from such a traumatic event. We are camped out at the hospital for a while and will know more in the coming days after mri and eeg results will tell some about the condition of his brain. And then following that to see how he tolerates breathing with less assistance from the vent and hopefully decreasing his sedatives so we may see our boy shine through.
But that is the hopeful side and that's all that I want to share so that if you are the praying kind to know what to ask GOD for. I wont go into the details to break any hearts tonight, but I will do my best to keep posting as things change so that as time goes on that we may be in your thoughts and prayers. Tonight he is resting peacefully and is an angel to behold. My little cherub is so precious!!!! I kiss him so much now that he's not wiggling so much so that each of you who wish your kisses, that prescription is being filled always. We are staying steady by his side so emails or phone calls may be missed for a while so please be patient with us as we concintrate diligently on our boy. I would appriciate your thoughts here on this page so the are saved with the words of this blog dedicated to the most charming sweety boy I've ever known. Thank you.
Monday, February 02, 2009
Where in the World did the Naults Go?!?!
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.
And WOW the adventures we had, we took a minute detour in Las Cruces NM, which was the very picture of the southwest at its loveliest, then up to Pheonix AZ. There we stayed with my aunt Marilyn who was a totally awesome and gracious host. We discovered rockhounding and stumbling upon cactuses of every variety. I met up with Rebecca, a friend whom I've known since the 5th grade, and for a military brat to maintain a friendship that enduring is a feat and you'd never suspect we missed a day in each others lives the way we got along so well after 17 years.
Then after we departed Pheonix, we were onto Las Vegas, FOR CHRISTMAS!!!! Well, we didn't strike it as rich as we imagined it to be. It's not the sort of place you take the kids to have a good time, but amazingly enough we did a little work before we left San Antonio to find a sitter for Bryson so mommy and daddy could have grown up fun in the casino. Alexis was so charming and got along great with Bean just hanging out in the hotel room while Travis and I went down stairs and had the date of our lives!!! I wish her the best with her pregnancy! She was so good to let us poor parents off the hook for a couple of hours. I mean lets not forget that Vegas is the ultimate escape for adults. There was a moment when we had to walk through a casino with BEAN to find a restroom, and it was like everyone was holding their breath as we walked by and stared us down, mentally screaming at us to get him out of there, because baby's are bad luck, but not our boy!! So we all ventured around the strip mostly in the car for a few days and there is definately the possibility for a return visit.
Then we turned our sites to San Francisco to hang out with my enchanting cousin Randy and her rand-bunxios family. I gotta say cuz, you sure got a handful of handsome men on your hands, and another hand to cradle that new baby?! Can't wait to find out what's on the way!!!
California is the most geographically invigorating state. Its sooo different from end to end that the drive through was INCREDIBLE!!! Hwy 101 is the scenic route to the top and there was no dull moment or lull in the journey upward. I must say I've fallen in love with the West coast the second we got on that road. Have you ever actually seen where the happy cows from the comercial live?!?! I have, and you could stamp a brand on my ass and happily I'd live where the happy cows do. Such landscape is worthy of a fresco painting in the Smithsonian.
On from there, we stayed the night at a beachside hotel in Crescent City CA. It was such a charming town, and just to back track a little we spent a little extra time there to check out the Redwood Sequoias. The heights of which you can only imagine because from the trunk, you cannot see the tip, you cant even fathom the ages of these fantastic trees. The stories those old trees do tell. I loved that part of our expedition the best!
But our destiny awaited us elsewhere, so we headed on, now no stopping for any other off-roadside attraction excursions. To Washington, where beauty and bravery sip coffee at the same corner shop cafe. We got into town just in time to start our new year and new lives. Most days are rather grey as winters usually are, some snow which is even peculiar for the locals, and some days the sun breaks through and shines heavenly light on this marvelous place. The view of Mt. Rainer is unmistakable as it looms in the background, the lay of the land is truely evergreen.
I'm smitten with our new home. We got a gorgeous huge duplex, bigger than I thought our paygrade could handle, but for the sake of Bryson's needs, this home is very accomodating. We're still in the midst of unpacking again for the 5th time in 3 years. Now that's a breakneck pace!! We all took sick a few times during our odd-i-see due to the stress of gypsy life, but now things are working their way back to normalization, but for those of you who know our circumstances well enough can say confidently that we're still pretty far from that.
And so the journey for the Naults turns another chapter......
Tuesday, August 26, 2008
The unconquerable Mr. BEAN
Thursday, July 17, 2008
No Hands Guitar Player
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!!
Tuesday, July 01, 2008
I am the Child
I am the child who cannot talk.
You often pity me: O see it in your eyes.
You wonder how much I am aware of .... I see that as well.
I am aware of much.... whether you are happy or sad or fearful, patient or impatient, full of love and desire, or are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater for I cannot express myself nor my needs as you do.
You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated,
I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me.
I do not give you rewards as defined by the world's standards.... great strides in developments that you can credit yourself;
I do not give you understanding as you know it,
What I give you is so much more valuable..... I give you instead opportunities.
Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers.
I am the child who cannot talk.
I am the child who cannot walk.
The world sometimes seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, Oh I've dropped my spoon again.
I am dependent on you in these ways.
My gift to you is to make you aware of your fortune our healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me, I always notice them.
I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness.
I am the child who cannot walk.
I am the child who is mentally impaired.
I don't learn as easily, if you judge me by the world's measuring stick.
What I do know is the infinite joy in the simple things.
I am not burdened as you are with the strife's and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love.
I am the child who is mentally impaired.
I am the disabled child.
I am your teacher. if you allow me, I will teach you what is really important in life.
I will give you and teach unconditional love.
I gift you with my innocent trust, my dependency upon you, I teach you of respect for others and their uniqueness.
I teach you about how very precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you about giving.
Most of all I teach you hope and faith.
I am the disabled child.
Wednesday, June 18, 2008
Happy Second Birthday Bryson!
Thursday, June 05, 2008
Harriet McBryde Johnson
Harriet McBryde Johnson, a local attorney and Civil Rights Activist on the rights of the Disabled died at the age of 50, yesterday here in Charleston. It is a very sad day for the people she represented and for many millions she hoped to bring awareness to the issues confronting the disabled. She was a champion for the ADA and equal access to healthcare. She debated Peter Singer, Professor of Bioethics at Princeton University. Singer professes to his young students (often first year medical students) that babies born with disabilities should be euthanized at birth because they will make no contribution to society. Ms. McBryde Johnson you see, was born with a congenital neuromuscular disease. Her thoughts on the Terri Schiavo case were that Terri was not at the end of her life and was not dependent on life support, no ventilators, etc. She (Terri) was indeed disabled in a persistant vegetative state was only tube fed. A husband to someone that is not disabled would not be allowed to withdraw tube feeding and hydration, so why was Mr. Schiavo's request carried out? Simply based on something Terri said years and years before? Terri had no written advance directive and she survived with loving family at her side for 15 years! http://www.slate.com/id/2115208/
Ms. Johnson had a disdain for the pity-based tactics used by the annual MDA Telethons, which I do too! You may actually raise more funds when you show the world the wonderful accomplishments people with disabilities can make. Like those of Harriet McBryde Johnson. Most of all, the lesson we can all learn from her is that we "typical" people, need a little more humility and humanity.
Harriet was also an author and has written: "Accidents of Nature", "Too Late to Die Young: Nearly True Tales from a Life", "Unspeakable Conversations" (http://community-2.webtv.net/@HH!80!A2!2134BF518044/stigmanet/HarrietMcByrde/)