Thursday, May 29, 2008

We came home today


Hooray!!! We finally came home today. It took a while to pack all of the stuff in the car after being in the hospital for 48 days. Brayden did great on the way home and slept the whole way home. All of his equipment was delivered and the nurses arrived to take care of him. His room is now full of all the junk it takes to take care of him. It was a pretty good day. Brayden did have one little episode of storming (high heart rate, very tense with increased tone, sweating). He is also having some stomach issues, not sure if it is the formula or what but he seems to be having some stomach cramping and a lot of gas. We have changed his formula to pediasure maybe that will help. So now we will see how everything goes at home. The nurses will be here for 24 hrs a day for the first 3 days. Hopefully everything will go well. Please continue praying for Brayden!!!!!!!!!!!

Wednesday, May 21, 2008

Brayden had an ok day today. He has been crying alot today. We have had the speaking valve on his trach today and we can actually hear him crying. After not hearing any sounds from him for over a month it is nice to hear him crying. We were only approved for inpatient Rehab in the hospital for 7 days. We did not get approved for Rehab any more so he will be switched back over to medical status in the hospital. Brayden will now only get 1 and 1/2 hours of therapy a day. That is 30 minutes a day for each discipline speech, occupational and physical therapy. Makes you wonder what the hell kind of monsters run insurance companies these days. You have a child who is walking and talking and eating all on their own and then he can't even hold his own head up, speak or eat and he only qualifies for 7 days of inpatient rehab. What is wrong with this system????? It seems to me that if a child has a brain injury that the insurance compainies want them to remain that way instead of getting them the therapy that they really need. We will hopefully be going home next week. We are just waiting on the insurance to approve home nursing care and to get all of his medical equipment delivered. Brayden did get fitted for a custom wheelchair today, it will take about 4 months before we get it though. But we have the one donated to us from a patient at my work PSA. It was only used one time and is in mint condition. I cant say thanks enough to them for letting us have it. When Brayden no longer needs it we will donate it to someone else who may need it. So right now we are just trying to get all of our training done at the hospital they mandate us to have before he can go home. Tomorrow I have an appointment with a Doctor at HyOX the hyperbaric Oxygen treatment center. We are trying to find a hyperbaric oxygen chamber clinic to take Brayden to once he comes home. This therapy has great results with brain injuries but is not approved for use with brain injuries in the US. So insurance will not cover the cost of this therapy. I am going to set up a fund for Braydens medical expenses because we will need alot of help so he can get these treatments. They are very, very expensive. I will have more information up on here later if you would like to make a donation.

Tuesday, May 20, 2008

Brayden did well in Rehab again today. He has been crying alot today also. He was sleepy most of the day today also. Brayden got a new wheelchair donated by a patients family from PSA. We may be getting to come home next week.

Monday, May 19, 2008

Continued healing

MONDAY, MAY 19, 2008
Brayden continues doing well in Rehab. Dad has been at the hospital with him over the weekend learning to do all of his care. Brayden did have some storming episodes lastnight, high heartrate, very tense and sweating alot he had to be given some ativan. He has been crying alot lately. The doctors did say that they would write an order for us to get the hyperbaric oxygen treatments. They suggested we see about getting tubes put in his ears first though. We just pray for his continued healing and hopefully we will get to come home soon.


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FRIDAY, MAY 16, 2008
Brayden is doing well in Rehab. He is continuing with Speech Therapy, Physical Therapy and Occupational Therapy. He got a regular bed in rehab instead of the baby bed he had in Icu, so we are able to lay with him and cuddle with him now. He is also only wearing the heated trach collar at night and his feedings are not continuous now. We can actually hold him without a bunch of tubes and wires connecting him to something.
Braydens insurance only approved him to be in inpatient rehab for 7 days so we may be coming home sooner than we thought. They are already setting up home nursing care for us. Brayden had some new splints made for his arms today. He is still very tense and tight in his arms most of the time. They tried a speaking valve (passy-muir valve) on his trach but his trach is too big for him to breath around it. They have ordered him a smaller trach so hopefully he can use the speaking valve. It will take 3-5 days to get the new trach. So hopefully he will be able to make some sounds soon.


WEDNESDAY, MAY 14, 2008
We moved to Rehab today!!!!!!! Brayden contiues doing well and he even got up in a wheelchair yesterday. I pushed him all around the TICU unit not connected to any wires or anything. He is starting to act like he is trying to cry more now. He is looking around more now too, but he still isn't tracking or focusing on anything. Maybe we can start to make more progress being in Rehab now.


WEDNESDAY, MAY 14, 2008
We moved to Rehab today!!!!!!! Brayden contiues doing well and he even got up in a wheelchair yesterday. I pushed him all around the TICU unit not connected to any wires or anything. He is starting to act like he is trying to cry more now. He is looking around more now too, but he still isn't tracking or focusing on anything. Maybe we can start to make more progress being in Rehab now.
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MONDAY, MAY 12, 2008
Brayden continues doing well. He is starting to look around even more and move around some more. He will make a face to something he does not like. Physical Therapy continues working with him while we are waiting on approval for Rehab. He has a little chair he has been sitting up in and he has also been up in a wheelchair. He has his new braces for his feet now. His lungs are clear now and he is doing very well with the trach.


FRIDAY, MAY 09, 2008
May 9, Brayden is continuing to do good on the heated trach collar. His secretions are a lot less now. He seems to waking up more and moving his eyes around but still not focusing on anything really. We moved out of the PICU yesterday because he is now stable. We are in the TICU, room 5. We are still waiting on approval to go to Rehab.


WEDNESDAY, MAY 07, 2008
May 7, Brayden is continuing to do good on the heated trach collar. His secretions are a lot less now. He seems to waking up more and moving his eyes around but still not focusing on anything really. We moved out of the PICU yesterday because he is now stable. We are in the TICU, room 5. We are still waiting on approval to go to Rehab.


TUESDAY, MAY 06, 2008
May 6, Brayden is off of the ventilator and on a trach collar today. He has been doing good with it, breathing all on his own. He has been a little more alert today, moving around some too. Hopefully he will continue doing good on the trach collar and we can be getting out of the PICU.


FRIDAY, MAY 02, 2008
They are weaning him off of the ventilator and continuing to wean him off of the sedation medication. He will start back on the methadone to prevent him from having any withdrawl symptoms. We have now been in the PICU for 22 days.

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THURSDAY, MAY 01, 2008
May 1st, Brayden's 1st trach change was done and the paralytic medication is stopped and they are weaning him off of the sedation. He is still on the venitlaor.

My journey of healing begins

Brayden suffered a near drowning on April 12, 2008. He was 16 months old.


Brayden was playing in the backyard with his sister Kaitlyn, they were jumping on the trampoline while I was cooking out on the grill. I went inside to take the food in and set the table so we could eat. When my daughter came in the front door, I immediately said, where is your brother? She said she didn't know we both ran out the back door. I scanned the backyard screaming his name. I asked Katilyn where is he at, she said I dont know maybe he fell in the pool. I looked in the pool I couldnt see anything at first the water was dark green and coated with a thick layer of pollen. Then on the other side of the pool, I saw his little blue and orange tennis shoes. He was floating face down in the water. I immediately ran to the other side of the pool and pulled him out. He was not breathing, I threw him over my shoulder and ran to the deck where CPR was started. My daughter ran inside to get the phone so I could call 911.

When EMS arrived he was still in full cardiac arrest. The EMS took him inside the ambluance to work on him and someone came out and told us that things did not look good for him. EMS continued CPR and after giving him Epi/Atropine his pulse finally returned they had a heartbeat of 38. He was intubated by EMS due to still not breathing and once stablized enough for flight he was flown to Childrens Healthcare of Atlanta at Scottish Rite. He had to be given more cpr and epi/atropine 2 times en route to the hospital due to his heartrate dropping really low. When he arrived at the hospital he was put on a ventilator and his body temperature was 80.06 F, they had to get him warmed up. He was admitted to the PICU for further care.

He had 2 CT scans done 1 of which showed a very mild disturbance of gray matter-white matter differentiation. His MRI showed that he had hypoxic ischemic injury with decreased diffusion involving the thalamus and hippocampal formations. The Neurologist said that he would have some deficits due to his brain injury but we really will not know what has been affected until he wakes up. Brayden remained on the ventilator until April 16th, he was taken off of the ventilator and put on oxygen by nasal cannula. He started having respiratory distress and was given racepinephrine treatments and started on methadone for possible withdrawl symptoms from the sedation used while he was intubated. He was started on a high flow oxygen by nasal cannula. He did well and was being weaned down on his oxygen. Sometime during all of this they thought he possibly had a seizure and they started him on Keppra to prevent seizures. On April 22 he started having respiratory distress again, work of breathing, increased heart rate, and blood pressure. On April 23 he was re-intubated and put back on the ventilator. On April 27 he was taken back off of the ventilator and tried again on the nasal cannula. He did well for the first day but that night he took a turn for the worse and almost had to be reintubated again.On April 28th, after talking with Brayden's doctors the decision to put in a tracheostomy was made. A PEG tube for feedings was also done at the same time. It was found that Brayden had acute inflammation with swelling of his sub-glottis area and active granulation tissue partially occluding the subglottis. Brayden made it through his surgery fine and now has a trach and G-tube. He has to be sedated and paralyzed until they do his first trach change. Now our journey of healing begins.


Brayden's Diagnoses:
Near drowning/Accidental drowning
Anoxic Encephalopathy
Generalized-onset seizures
Acute Respiratory failure
Surgeries: tracheostomy and G-tube