Bryson's Blog

Living with Trisomy 13

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

Grey Matters


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

Important Day


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

Long days


It's been long and difficult days for the Nault family. Bryson is in a state of "limbo" if you will. We don't know at this point how things will play out. He is on a ventilator, he has brain damage from the lack of oxygen as it is hard to know how long he wasn't breathing. A Medic that came to visit us today said it only takes 4 short minutes for damage to occur. The damage comes from fluids accumulating in the brain and the pressure that ensues. On Saturday, he was breathing on his own, responding, but apparently 72 hours tells the tale of the fluid build up on the brain and that's what has lead to the situation we are in with Bryson. His heart is strong and beats like a champion. We don't know if the twitches he has are as a result of direct response to our touching and kissing him or is it the nervous system's automatic response. This week, we will be able to know more as his body tries to heal from it's trauma. The eeg (electro-encephelagram) and a follow up MRI are planned. He is not in any pain as he is on medications to sedate him. He looks like an angel he is truely a beautiful boy.


This is an extremely difficult time for Dana & Travis as you can imagine. There are difficult decisions that no parent should ever have to make for someone so young, so vulnerable. We all love Bryson for the wonderful, funny, charming, giggling sweet little cherub that he is and we desparately wish we could change what happened. There are no do-overs in life and this is the hardest thing any of us have had to face in our lives.


Please keep Dana & Travis and Bryson in your prayers.

Monday, August 17, 2009

Sunday, August 16, 2009

Sad News

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.