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Monday, April 27, 2009

True Words

Our cousin forwarded this and Pat thought it perfect, as I did too:

Being happy doesn't mean everything's perfect. It means you've decided to see beyond the imperfections! God didn't promise days without pain, l laughter without sorrow, sun without rain, but HE did promise strength for the day, comfort for the tears & light for the way.

We have been home two weeks tomorrow and Megan is really doing well. She looks good and has been acting more like "Megan". Getting lots of flirty little smiles and she has been giving Daddy those special little fluttery eyes that she does. I dont think Megan suffered any setbacks that she cant overcome at this point now that I am seeing her healing. I think if we can get her weaned off the vent she will be able to make some positive strides forward and live a little bit. Seizure activity has been non-existent from what we can visually see. Her belly is giving her some challenges, but I think we can manage that too!!

Sunday, April 12, 2009

Discharge plans

So it has been 12 days since Megan got her trach. The surgery went well and she is healing up nicely. Six days after the procedure they did the first trach change which was last Monday and from that point on it has been learning and adapting for us. It is not half as scary as I thought, although it is not ideal of course. She was taken off of the hospital ventilator last week also and put onto the home ventilator and she adapted great. She has actually been on room air since last week and has not required any additional oxygen, just the ventilator which is something I really did not even know you could do. It does not mean she will not require oxygen, but it can fluctuate according to her needs. The first step is to adapt her to this and then hopefully we can get her to be off all equipment during the day and just use the ventilator/oxygen at night and from there maybe get off all of it. Shoot for the stars!!! She is looking better and is having periods of waking and interacting but she has been sleeping a lot. I think she is in hospital mode right now and we will see more of Meg once we get home. It is amazing how the hospital itself affects people. Today is Easter and it was definitely different. I made a ham and a pound cake and the boys and I packed it up and took it to the hospital and the five of us had Easter dinner together in Meg;s room. It did not matter where we had it as long as we did it together. That is the important part. We are planned for discharge on Tuesday as long as everything goes according to schedule. United Healthcare has to approve the 30 days of overnight nursing and the DME has to get us all of our equipment. They called me Friday am to tell me that I only have a 2,500 DME limit per year on the policy and the trach/vent/oxygen and supplies are going to eat that up in a couple of months. It was like they were checking to see if I wanted to get the stuff. How stupid - of course I do. We are taking Megan home and the rest will work out and we will take it day by day. I go to SSI on Monday the 20th to see if we qualify for any medical benefits secondary to our private insurance due to the medical requirements and additional care the vent takes. I am told that we do and it does not matter about assets and income and that it is based on medical necessity and care now rather than those things. We will see......I hope so because Megan will not be able to be left with anyone unless they have experience with trach/vent care. I also can not drive alone with her anymore in case of the vent. Two people from now on so unless I have someone I cant go anywhere that requires driving. Big changes, but I am not complaining. Having Megan is worth all of the additional changes and adaptations. She kissed me back tonight when I was bathing her and was getting pretty feisty about her spa treatment and it was the best feeling. She tired quickly, but there was a glimpse of my little girl!!!! Looking forward to going home on Tuesday but I really am going to miss some of the nurses and respiratory therapists here. This is our 8th week here and I am attached to them. It is the first time I've ever experienced that I am going to miss anyone from a hospital stay. Having such great people here has made this so much easier to do. As far as hospitals go I would give this a five star rating - I wish I did not have the experience to know the difference, but since I do I would recommend coming here with your children for anything serious.