Continuing with HBOT

Brayden continues doing his Mild Hyperbaric Oxygen Treatments (soft chanmber). He is doing well with them. He is now holding his head up pretty good, and even turning his head from side to side at times. He will turn his head and look when he hears things now. He is still having the neurostorms but the ativan is working well and usually calms him down pretty quickly. Not much else going on with him right now. We cant wait until his Physical Therapy gets started. They are supposed to come out and evaluate him on July 3rd. So hopefully things will continue to go well and he will continue to make more improvements.

We have started Hyperbaric Oxygen Therapy

We have started a mild hyperbaric oxygen therapy. Brayden has been to 3 treatments. The mild hyperbaric oxygen therapy uses less pressure and oxygen than regular hyperbaric oxygen therapy but it is close to our home and it was affordable. We are still trying to raise money so Brayden can get regular hyperbaric oxygen treatmens. Brayden seems to be improving some. He can now hold his head up for a little while and he seems to be more alert now. He still continues having his neurostorms but the ativan is working pretty well to help calm him down. We are going for another HBOT today. I will try to update more often, as I am not finding much time to post. Please check out the link on the right to hugs for near drown children Brayden is the Child of the month on their website : )

Still Storming

Brayden is still having neurostorms. More frequently than before now. The only thing that helps is giving him ativan, which makes him sleep all the time. He has been crying alot, nothing seems to ease him. I just feel so helpless because nothing seems to help but knocking him out with the ativan. He finally got his bath seat so now he can take a bath in the bathtub!!!! We are still trying to raise money for his HBOT. Brayden went on his first outing on Friday. He went to see his pediatrician for a follow up since his hospital discharge. We are only getting nurses 12 hours a day at nights now from 7pm to 7am. Between all the other things I have to do and taking care of him, I am totally exhausted. I will try to update more often but I am finding very little time to do things now.

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!!!!!!!!!!!

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.

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.

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. ___________________________________________________________________________ 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. _____________________________________________________________________ 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.