Weaning!

My darling boy has been weaning from the vent for a few weeks now. He went from a PEEP of 8 (CPAP) to 5 and off of pressure support during the day and back on at night. Then about a week and a half ago, I was inspired by the beautiful weather and I started taking him off of the vent (and onto the trach collar) for a few hours at a time. He's doing fine with it. He has gone for several walks and sitting on the deck with Mommy and Daddy. He's currently spending about 6 hours off of the vent per day. I think he would be fine with being off compeletely, but I want to go slowly and use it preventatively to try to keep his lung open and healthy.

He gave me 5 heavenly nights of sleep in a row a few weeks ago but has been back to his up all night schedule. I was just learning in my A & P class that the hypothalmus regulates our sleep-wake cycles. Perhaps that is a factor as well as his blindness.

Everyday I try to celebrate the joy that is Ambrose! I feel so blessed to have him on loan to me from Heaven. I am so proud of him and in awe of him. But sometimes it is hard not to be painfully aware of all the things that he will never be able to do, that we will not be able to share with him. And of course I am constantly aware of his mortality. I want him to stay with us forever!

Before and After Mommy Cut My Hair

Update

4. That is the number of nights Ambrose has slept through in the 6 weeks since he has been home from the hospital.

He continued having lots of secretions which were finally staring to slow down a couple of weeks ago.

About 10 days after coming home he had some fevers and went back on antibiotics. His poor little hiney is still trying to recover.

He was having positional-related desats a few times a day due to his (non custom) trach. We finally received the custom Bivona and it has made a huge difference: no desats or air leaks (which also means no sound.) It is also easier to get in and out and did not cause any bleeding. It did however, cause another increase in his secretions. Hopefully he will adjust to this soon so I will not need to keep waking up to suction him as he lays awake all night.

He has been needing less O2, often as low as .25 L. We hope t0 start weening him from the vent soon and only using it at night. That will make it much easier to take him out for walks to enjoy the upcoming Spring.

Ambrose is his usual wonderful adorable sweet self.

If you haven't already seen it, please check out his "Wiggle It" video in the previous post. It will make you smile!

Wiggle It!

Watch video and note the light radiating off of my darling boy!

Doing Great at Home

Just a little update.

Darling Brosie has been doing very well since being home. He continues to be down on his O2 needs. He is active and playful and back to his usual tricks of partying all night, much to my dismay.

HOME at last!

I am writing this from home sweet home with a snoozing Ambrose on my lap.

Since we left the hospital he is down on his O2 need and down on his pressure support.

He must be happy to be home!

Hard day for Daddy

Brosie' home ventilator: The Pulmonetics 1150

Crazy days-

Yesterday Ambrose's Daddy got in a car accident. He was banged up quite a bit but lucky to have not been injured seriously. His truck however is totaled.

Ambrose is doing better and on track for his planned homecoming on Tuesday.

He is adjusting to his ventilator. I think he was having some plugging issues. No one ever listens to me when I tell them that he needs higher than normal temperature settings on his humidification. They wait until he starts to dry out and have troubles. The pulmonologist was in agreement with me on that and since it has been turned up, his secretions have thinned and he has stopped having desats. He has also come down some on his O2. I have learned that the frequency and size of his breath changes the amount of O2 his is receiving.

I also wanted to mention that he has his flexion/extension CT scan a few days ago. As predicted, it showed a very abnormal C-spine with narrowing at the base of the skull, but they felt it did no look unstable. Interestingly it also revealed that he has an ear infection. (10 days of fevers, multiple labs, negative for everything and no one looked in his ears.)

On a happy note: Ambrose's Mommy received an acceptance letter from Vermont Technical College for their nursing program.

What's wrong Brosie?

Not sure what is going on but Ambrose is again having a difficult day.

He has been on his home vent since Thurs afternoon. Seemed to adjust to it just fine.

Then he started needing more O2 (up to 4L from 1L) to keep his sats up and was quite agitated. He sounds pretty clear. They took an Xray and it looked pretty much the same. Scoped his trach - looks fine. He had a low grade fever. Got some Tylenol and settled down but continued needing more O2. They also increased his pressure support from 5 to 8. They are not sure what the problem is and say it may be just him adjusting to the different vent but I'm not sure I buy that.

Mommy's Little Spark Plug