4 replies to this topic

[PaulaMommy]

I went to see Bryson today. I got to hold him! As soon as we snuggled up and started rocking in the chair, his eyes started closing. I sang to him and we sat for as long as I could until my arm fell asleep and him and I both needed to empty our bladders! I asked him "Bryson dont you want to get in your bed?" and he would open his eyes and say "Uh Uh!" (as in NO!). Such a sweetie... When i put him back in his bed, his ear had drained tons of brown ear wax looking stuff on my arm and in his ear. They said he has a terrible ear wax build up problem. Is this common and what, if anything, should be done?

The bottoms of his lungs are collapsed so they are doing the procedure tomorrow morning to see if they can inflate them. Big news today is that he gets his C-collar off!!! I was just thinking "isnt it time he gets this thing off?!'" I am anxious to see what his head control is.

Kimla had her meeting with the doctors. They mainly talked about his respiratory stuff, that they dont believe he will ever get off the vent b/c he has NEVER initiated a breath in 3 months since the accident. They believe the swelling has gone down alot, maybe as much as its going to.

If anyone reads this and knows-how would he ever (if possible) get off the vent? Injury level at C 6 and 7....what could a SCI hospital, like Shriners in Phili do differently for him?

He really looks good and is in good spirits.

[kewlcatkez]

PaulaMommy, on Apr 1 2008, 10:21 PM, said:

If anyone reads this and knows-how would he ever (if possible) get off the vent? Injury level at C 6 and 7....what could a SCI hospital, like Shriners in Phili do differently for him?

He really looks good and is in good spirits.

Hi Paulamommy,

Thanks for the update. It was so heart warming to read of little Bryson's response to you holding him. With regards to the ear wax build up sometimes it is caused by ear infections and other times it is due to a build up after a cold in the eustachian tube behind the ear. It can also happen after ventilation. It is the ears way of protecting itself and as long as the drs can visualise his ear drum and rule out/treat any infection, it is not a casue for great alarm as far as I know. (obviously a dr, esp an ENT dr is better able to say).

As for the ventilator, I am not able to advise on hospitals per se, but wanted to add my thoughts based on my experiences, if that is ok? Please do double check with a dr etc, this is just my opinion.. To start with, I am confused (as you are i think) since I recall them telling you that Bryson was taking mnore/less independent breaths a few weeks back. Perhaps they didn;t convey what they meant very well? Or perhaps they need to seek an Anaesthetist ( anesthesiologist in the US) who specialises in difficult to wean patients.

Weaning from a vent is never really straightforwards. I would just urge that the drs look into the protocol used for "difficult-to wean" children, as at his lesion level it is not a fore given conclusion that he will be vent dependent. On the contrary the vast majority are not - although every one is individual and complex. Perhaps due to his young age and immaturity of his lungs, it may be the case that they can't wean. However, no one can say for sure and he has every chance still.

Many 'usual' Protocols exist for weaning people from a vent. They all differ a little, but they have one thing in common. They all are dependent upon the feedback from the person who is being weaned. You will also find that the Ventilator is set a little differently than it once was, so that the person can take a few breaths on their own, instead of being forced into them. There is nothing to worry about as if the person does not attempt to breath within a time frame, the vent will do so for them etc.

Initially the weaning takes place for a very short period of time. This is nothing to worry about, It is normal as the intercostal muscles of the chest etc will fatigue. Obviously, this is even more f an issue in a person with a SCI which affects their Diaphragm etc. Over a period of time, depending upon how quickly strength is built up etc, these periods will increase.

Sometimes Spontaneous Breathing trials are performed either after the above stage or independent of it. If it is the only method used it is usually because the person being ventilated is showing signs of being more than ready to wean, such as 'fighting' the vent and 'panicking' when they are artificially ventilated.

Although this will be a difficult step, it is important to remember that most first attempts to wean fail due to the person's body being used to the vent and so the first attempt is usually seen as a test or trial run. Also, remember that spontaneous breathing is most successful when the person is positioned so that their chest is free to breathe, when they are upright as far as possible and when they are not tired from Therapy, being bathed or attempting to speak via a speaking valve etc. I take it that Bryson has had a respiratory PT liaise with the nurses and anaesthetists with regards to the weaning from the vent? Are they confident that they will achieve 'partial weaning' of Bryson ( if not fully they may be able to attempt to slowly increase).

When it comes to individuals who are 'difficult to wean" from the vent, drs have had more success with the BiPAP and non-invasive ventilation. Please see http://www.sma.org.s...505/4505cr2.pdf it may very well be that Bryson is not suitable for this, but it is worth a look and to ask the drs their opinions etc. At his level of lesion breathing very much depends upon his accessory muscles of respiration ( between the ribs, the intercostals) as well as posture and his diaphragm as much as possible. It takes time to build up these muscles etc. With what you have said of the hospital and there failure to provide the PT, how can they say that he is not improving? He needs to be receiving optimal therapy before they can say for sure.

Also, some Studies have looked at the use of Growth Hormone in the treatment of Ventilator dependence, because of the effect it has on CO2 levels.

Paulamommy, no one knows if Bryson will breathe independently, but I just wanted to provide some links so that you can ask some questions so that you are all confident that you have explored every option. Thanks for updating. I think and ponder how he must be doing often. Take care and keep us informed as much as you can. He sounds like a happy lil boy and it was so cute reading how content he was on your lap. Oh and with re to the collar coming off, he will have a very weak neck no matter what ad it has been supported so long. They should ensure that he has support and PT...
Ok enough of my rambling.

here is some 'further reading'

http://escholarship....ons/AAI9725151/ http://www.chestjour.../full/124/3/850
http://www.nursingce....asp?tid=664477

I hope this is of use,
Take care,

K


ps also just wanted to say that I will keep Bryson in my thoughts etc for his procedure tomorrow. He is a strong lil guy so I am sure that it will go smoothly. Best wishes.K

Edited by kewlcatkez, 01 April 2008 - 11:45 PM.

[ParaforGod]

Hi Paula Mommy,
I also am touched reading about your time with Bryson. You can feel your love spilling all over the place for this little angel.
Kewlcatkez gave such good advice as she always does. She has so much knowledge. I just want you to know I wish you and Bryson the best and you are in my prayers.

[PaulaMommy]

K
Sorry for the confusion about the vent-several weeks ago, it seemed as if he was breathing over the vent...BUT they decided (probably wont sound right) that b/c of the "leak" in the vent, the vent was taking an extra breath....or something like that, sorry I cant remember exactly. Point is, they say he simply has shown no signs and being a very large Children's hospital I can only assume they are experienced in weaning kiddos from vents (I think you may have said this before actually).

Its just hard to imagine that this is *it* so to say for his recovery. I know they say up to a year, but things arent looking hopeful as far as the breathing goes. however, you are both right. He is a happy little boy who brings joy in everyone's life. His mind and spirit are still the same. Kimla said the neurologist kept saying "Do you know how blessed you are?" as if to say-how lucky they are that he is alive and no brain damage, etc.

I think the reason I, personally, am asking so much about recovery is b/c once he is stable enough and if he gets accepted to Shriners, the next step is for him and Kimla to go to Phili. This will be a huge sacrifice for Kimla, who herself has an 8 year old daughter, who misses and loves her mommy too. Like you said, we just want to make sure every option has been explored...and he has been given every chance to get better. But on the other hand, its difficult when the doctors here dont seem to think he will improve much. They ARE, however, very supposrtive to sending him to Shriners....so I guess that means they know its not time to "throw in the towel," as far as his rehab/recovery is concerned.

Sorry to ramble! I'll dive into your links, K, when I have some time...i.e. when my kids go to bed:)

thanks again...

[PaulaMommy]

Bryson had the procedure yesterday. RIght away, they found that his trach was too long and his left lung was not getting nearly enough air...well that certainly will make him desat!! And his left lung has been the one giving him the most trouble, so this makes sense. So they put in the correct size then got out alot of mucus. Kimla indicated to me that it was about 1/2 inch or so too long!
Anyway, he has not desated one time since the procedure-a sign that it was successful, for sure.
So if he keeps this up, I guess the next step will be to try the smaller vent.
Hes still just happy, happy, happy....so thats a blessing.