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

GRRR!

...Well that did not go so well. I had to fight to get heard by a Dr. who seemed annoyed by my questions. He put in a cuffed trach which is 2 whole sizes bigger than his regular uncuffed trach. I fought back tears as it caused him to bleed. I do not want to have to do this to him myself and on a weekly basis. (also it can possible harm his trachea, is uncomfortable to him, is torturous to put in, and seems to take away his voice.) They are assuming that he will continue to need a cuffed trach although he did not have one before, he has an acute illness and he is getting better. No one has really explained to me the reason for this assumption. I have been aware that he could potentially need one if he were to use pressure support at home. But he is not on pressure support. So perhaps he will not need it for long but they did not seem to want to explore what the options would be even though he would likely require a custom trach which takes weeks to order.

Also the Dr. who wants to manage his home vent usage has not been communicating with me. The other Dr. who was willing to do so has been checking in on us frequently.

The medical supply co. respiratory therapist worked hard to get a vent available to us quickly and it will be brought here sometime tomorrow for him to get used to and me to get training on. Unfortunately we can not go home until Tuesday as that is when she is available to come set it up in our home, train us and the local branch's resp. therapist. I don't think he really needs to be here that long but I am glad we actually have an end point in sight. Being here is a huge upheaval to all of our lives. I want to get him out of here before he picks up any hospital bugs.

It's 4:15 pm. I had trouble sleeping thinking of ?s I wanted to ask the ENT Dr. who was supposed to come yesterday. I came in at 8:00 a.m. because I didn't want to miss him. I am still waiting.

The most annoying thing is I he was in the PICU several hours ago to see another patient.

Gotta go. He's here.