Bryson's Blog

Living with Trisomy 13

Friday, August 21, 2009

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.


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