Forced Vital Capacity and Vent

[Dave C]

As some of you know, Jen and I had quite a roller coaster holiday season. For those that dont a quick recap:

37 year old wife Dx with Bulbar Onset ALS in 03/09, PEG in August, our twins turn 3 next Sunday.

Dec. 4th Ambulance for respiratory distress
Dec. 8th Tracheostomy
Dec. 10th transfer to a "trache specialty hospital" for weaning (as JoelC stated back then....they have decided that wasnt a good plan)
Dec. 18th transfer to a Rehab Hospital
Dec. 26th two days in the MICU for vent issues
Dec. 28th back to rehab hospital
Jan. 5th FVC test came back at 10.5% after a month of being on the vent 10-14 hours a day.
Jan. 7th Dr. orders her on the vent 20-22 hours a day...continue therapy
Jan. 7th Fitted for power chair told it would take four months though they planned to discharge in Feburary?!?!?!?
Jan. 8th Picked the ERICA Voice Augmentation system
Jan. 9th told DynaVox (sp) has bought them out and ERICA no longer available
Jan. 10th (3am) Blood test came back with WBC count at 22,000 quick ride to the ER for infection investigation (be there until Tuesday (at least)).

Question: I understand the FVC, I understand the implications that ALS has on the diaphragm, what I dont understand is why there would be a 60% decline in FVC (26 at the end of November) after being on a ventilator for a month? I believe it is contradictory to what I was told the vent would do for her breathing?!? I am open to any thoughts, so please offer anything whether a thought or medical fact.

Sincerely. Dave

Any insights would be much appreciated by this CAL (and the few (other than forum friends) I share this journey with)

 

[joelc]

Sorry for the journey you guys have had so far.

It does not sound realistic for the numbers to change that much that quickly. But it is not impossible either. As you expect the numbers usually go up because of the rest the diaphragm gets. Another reason for the numbers to decline is the fact a good seal is not possible during testing.

Since she was not on the vent full time she could have fatigued her diaphragm to that point. When I got mine I refused to see how long I could stand not using it each day. I considered that torture. If I did not need the vent I would not be in the hospital getting one - they backed off.

Take care!

 

[bleonard4]

Hello,

One thing that might be causing this is if her white count is 22,000 she probably has some sort of infection. Could it possibly be a pneumonia? If so then her FVC could be lower than normal for her.

Good luck and I will say some extra prayers for her. Keep us updated.

Barb

 

[Dave C]

Thanks JoelC, i should have been more forceful when you asked the question of why wean, though Jen did not seem to mind being off of it.

Barb, that was certainly their fear. though tests over the last 24 hours have ruled out pnuemonia and flu. Do you know what a normal WBC count is? She has "always" had a count between 12 and 14K which they told us was high and in the same breathe said it varies from person to person.

They are still trying to figure it out.

 

[indigosd]

Dave, so sorry for Jen, the children and for you. :[ Do you knowher complete labs? The differential ususally indicates where the problem may be-one would first think Pneumonia-then on to the bladder and kidney's-has anyone mentioned MRSA? Was she treated with corticosteriods [more than likely] in the hospital? That may have masked an underlying infection. OMG! Are they still trying to wean her off the vent? I am certain that is why she is dropping the values, exhaustion! She should be diagnosed as vent dependent! arggg this past week is the ONLY time that I wished I was back in Critical Care so I could pick the brains of all the specialists! I have included 2 links that talk about blood counts and possibly meanings. You are such a treasure to Jen and the children! hugs, Kay marie

White blood cell count - Complete Blood Count
Complete Blood Count (CBC) Test, Values, and Interpretation Information on MedicineNet.com