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Sunday, September 13, 2009

The good, the bad and the ugly...

The good:

James and Ryan are doing good. Posted some pics of them - James after football practice - dirty but I think he looks grown up - and cute. Ryan after his shower - showing off his muscles. Ryan and Meg snuggling together - my snugglebuddy and my snugglebunny. That is their nicknames. I am usually in the middle.....
Meg in therapy with Cindy- her OT - I love the way she is looking at her like "Of course I can do this - did you expect less??"

Megan has continued to spend more time off the vent than on. It is really nice. Makes Meg much more accessible to hold and love. Being off the vent means lots of open suctioning of the trach which has not made travel any easier, but it is a start. I am really proud of her and amazed at how strong she really is.
The bad and the ugly:

Infantile spasms - they are back - and just three days after I postponed the keto diet for her tonsils. They could reverse everything good that has started to happen. I am a mental wreck and can't even think straight. I am at a loss to describe the desperation I feel this weekend. What is next? Next med please... Sent an email out to see about HBOT's effect on IS. I am ready to take her in to the chamber - cant make her seizures worse - they are worse now.

I will call Dr. C tomorrow about vigabatrin and starting it - or clobazam - whichever he thinks is best. We are weaning the Keppra so at least we can get rid of one and then add one. A balance I guess.

Friday, September 4, 2009

Feeling Better

Okay - I am back in the saddle again. Had two great happenings. The first was on Wednesday night - the one shift of nursing we get a week is on Wednesday nights so I can get a nights sleep. Betty, a nurse of 50+ years comes and she is the sweetest, most tender woman with a WHOLE lot of experience and knowledge. I have much respect for her and what she has done and learned in her lifetime. Anyway, I have been thinking that Megan bubbling out of her nose and mouth like a dog is because she is pushing the secretions from her chest out that way (which she is not supposed to be able to d0....). I notice when she is off the vent it stops happening so it only makes sense. I was sharing with Betty and she agreed that this very well could be. Megan would not settle down for anything - racing heart, agitation, the whole thing. I took her off the vent and it was magical how calm she became. Her 02 sat rate was at 98 and her heart rate a nice even 100. She fell asleep and we left her just this way - off the vent, suctioning as needed - about every 10-15 minutes. She stayed that way the whole night and slept like an angel. Betty was delighted to do this all night, which she could have said no to. She sat at her bedside all night long. She said to me the next morning - why does she have a vent?? Why does she have a trach? I told her she got the trach for the vent because the Dr.'s said she could not breathe on her own and the chances of her ever again were slim. She told me of how in her experience kids that can do this and go all night which is the most vulnerable time, are certainly not vent dependent.

It was a reassurance of Meg being strong in her lungs that I needed. The best part is she stayed off the vent for a total of 22 hours and did great. I had to put her back on last night to sleep because I could not keep my eyes open to watch her. It was a safety issue. I need to be able to respond and suction and I certainly could not do that with toothpicks in my eyelids.

We went to see a new ENT during this and he was awesome. Wish I would have seen him 2 1/2 years ago. So smart!!!!! Worries about the whole child and knows so much about diseases, diet, allergies - you name it. He was kind and very willing to spend as much time as he or we needed to figure things out. He assessed Meg's tonsils and said that it is viral, HSV virus living in the tonsils most likely and they need to come out. The tonsils started July 17th - it is September already. October 7th is the day and I cant wait. I have thought this since she was less than a year old getting tonsil infections every month to the day - exactly. As far as the vent/trach stuff he said he thinks she does not need either for much longer and he told me that she was fighting the vent with her natural breathing pattern and pushing the mucous out the nose and mouth. Another way that I was reassured.

I thanked God for giving me the signs I was so desperately in need of.

Alas, everything cant end good - just g0t a phone call with some more denial for nursing. Although we were approached by Hospice Palliative Care from the article in the paper about offering some nursing overnight shifts for Megan, they assessed her this morning for about 3 hours here and had a meeting about it after and it was decided that she does not qualify after all because of the vent. A vent is a life prolonging device and hospice is geared to comfort care and quality of life for life limiting diseases, not for qualify of life if any machinery is used other than feeding tubes, BIPAP ,CPAP - even if she is weaning off and the future looks to hold no vent for her. When the vent is gone, we can reapply. Good effort...another crack we fall into. We must be the CRACK family!!!!

Am I disappointed to know sleep is not in the future? Yes, but there is nothing I can do about it today.

Tuesday, September 1, 2009

Bad Days

I am having a hard time the past couple of days with how things are for Megan. There were a bunch of videos that had become damaged in my laptop and I could not recover. I had searched for ways to recover them and could not. I spent hours on the phone with Flip support - you name it. They were gone. Somehow they amazingly reappeared and I sat and viewed them. It was so painful to watch video of Megan up to Jan 09 and then look at her now - how could this have happened? When did she deteriorate to this point. It happened in front of my eyes and somehow it slipped right past me, or I have been too consumed to fully see it. I dont know but it hurts. I want her to hug me and cuddle me and she cant even do that anymore - not with this monstrosity coming out of her throat with all the tubes. I am not big on the boo-hoo card but sometimes reality smacks you right between the eyes and it is a jolt to the system. I guess that is what I feel. I am also so worn out from all the people looking for information from me - I barely have time to shower each day. How do I explain that to people without them thinking I am being over-dramatic or looking for sympathy? I want to stop answering the phone.