Sara continues to do well. She is stable on the ventilator. No infections, fevers or anything else concerning. She just continues to cough junk out of her lungs and get stronger breathing. Her tidal volumes are now up in the mid 600s even when lying down.
When I came in her room tonight I had one of my serious, but not trying to scare the girl faces on. Her beloved cat, Dusty, is having some pretty serious issues. He stopped eating two days ago, and has been drinking little. He seemed ok yesterday morning, but by the time I got home last night it was clear that that cat was ill. One of his eyes was swolen and bulging, not reacting to light and it was obvious the cat was not well. I fretted on whether to take him to the animal emergency hospital, or wait to have him seen at his regular vet. I opted for the latter, as he is also a dear family friend.
When I spoke with Dr. Veterinarian early this afternoon he had said that the cat was in very bad shape. Would certianly lose the eye, if not die altogether if he did not eat and drink. We briefly discussed options. I left work sure I was going to have to tell my daughter we were going to have to put Dusty to sleep. She loves that cat more than anyone or anything in this world.
By the time I got to the vet office a few hours later, the cat was doing better. Not great, but better. Dr. Vet had given him fluids, shots,done tests, and the cat ate for him. His eye even looked better. He said that maybe it wasn't as bad as earlier thought, but the cat would almost certainly lose the eye. He sent us home with a handful of oral syringes to administer to Dusty throughout the night and we'll decide tomorrow morning what the plan is.
So, after getting to the hospital, I had to talk to Sara about it. I promised her I wouldn't keep anything from her, and this certainly is something she'd want to know. I explained everything, talked about the cat, and we discussed the options for Dusty. We're going to let Dr. Vet tell us when it is time, and then she just wants to say goodbye beforehand. I think Sara took all of this much better than I have. But, she and I are both hopeful that the cat has at least another life in him...
I talked to Sara about her Father visiting and her step-mother issues on his behalf. I told her that although I felt that her reasons were between her and Tracy, that I was going to ask because feelings had been hurt and stuff had blown way out over it. Basically, Sara is ready to seeing her father about as often as she did before her accident. She does enjoy seeing him, and she's not upset about anything. She's just ready to get back to normal with him. I did ask her if he could come up and ask him about this himself and visit with her on Saturday, as her father and step-mother now question my honesty or accounting of communications with her. She agreed. So I called her father after leaving and let him know. There was quite a bit more to the conversation than that, including an earful from Denise on everything i've ever done wrong in her eyes. I'm not even angry with her for it. Just sad.
I will say, to everyone who follows this blog, my intention was never for this to become a discussion forum between the people most important to her. I am sorry that either postings or comments here have tangented away from the real reason I started this - as a means to communicate Sara's status and as primarily my outlet and record of this journey. I opened it up to other family members to post, so we could each share our portions of the journey with her, if so inclined, with the many, many people who care about her. This is about Sara.
That being said - I am keeping the unfortunate entries up. But, I will ask that people not call Denise and give her any shit about her posts, or comment unkindly to her either in person or on my blog. She's entitled to her opinion, although it would be more helpful and appropriate if she picked up the phone to share it.
The A Number One rule of THIS family (myself, Sara and Michael) is "Kindness Always". Let's please keep only that tone in our posts and comments going forward.
Anybody take exception to any of my posts or comments, please email me directly at NetzillaKB@gmail.com.
I'm going to call the ICU now and check to see if she is sleeping ok, then I am off to bed. I have a lot of work this weekend, and she has lots of visits...
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I apologize for comments and posts I have made on this blog. You are correct that it is inappropriate here, and, besides, it is none of my business anyway. I do want to assure one commenter that I know that it is my responsibility to have medical coverage on both children, and I have gladly done so for most of the past nine+ years, in some cases, even when her biological parents have not, for whatever their reasons. I kept it when Sara herself did not want me to continue it once she was eighteen and technically we had no more financial responsibility for her. My frustration is that as her stepmother, I do have these responsibilities, but don’t have the ability to examine her medical records for example, so I have to trust that what I am being told is the truth. And it would have make it ever so much easier on my psyche if Sara had said something more gracious to my offer, like “Oh, OK thanks, I’ll get you the information you need”. Obviously, my experiences with Sara in the past have been different from those of all of you, which is unfortunate, as I have been pleasantly surprised by the positive comments here. I have emailed Kristina asking her to remove me as a contributor to the blog and, if it is possible, she may want to delete any and all references to me contained therein. I obtained her phone number only recently, and if I have any future questions, I will be certain to address them with her directly. Thank you for your understanding.
ReplyDeleteDenise - I'm not going to delete you as a contributor, your posts, or references to you. You are her step-mother and an important part of her life - despite any past interractions. I added you here so that you could share your new interractions with Sara.
ReplyDeleteI understand your frustration with not being able to see her medical records. I have them and you're welcome to come review them anytime. I get frustrated because I can't review her medical plan. Maybe we can find a way to work together on this and her long-term care. We each have responsibilities, resources, experiences and insights the other one doesn't.
But, more importantly, I would like very much for you and I to go see Sara together one afternoon. I think the three of us need to sit down and talk, share feelings, clear the air, and try and heal.
I think it would be a great idea for the 3 of you to talk to Sara. The 2 of you go over the insurance and medical records together to figure out what the insurance will cover, so you can both figure out ways to get her the treatments she needs and the understand that she needs from all of you.
ReplyDeleteDear Denise and Kristina,
ReplyDeleteI'm sure that Sara has always appreciated you as her step-mother and appreciated youhaving her on your insurance, however she just didn't show it as many teens usually do not show their emotions. Many Teenagers are like "in a Planet all of their own! They usually do not acknowledge what the parent or step parent has done for them until they are in their 20's or maybe even in their 30's. Denise, please don't take Sara not thanking you for insuring her personally, she is just a typical teenager! Kristina, please do not be critical of yourself for not insuring Sara. You have always been there for your children, sometimes life is too busy and for whatever reason, people forget and make honest mistakes. I am a single parent of teenagers. (one high school and another in college.) Sometimes it is so overwhelming, I too make mistakes and I forget to for example fill out the college course schedules and submit them on time among other errors I have made. Kristina, Don't knock yourself down, you are doing a superb job! I commend you immensely,the energy you have to be able to drive back and forth to take care of Sara and then go back home to take care of your son. You and Sara are true fighters!
great... thanks so much for finding a peacful way and being sure to remember why we are all here and who for..Sara
ReplyDeleteAs teenagers we can be mean and we don't always understand why our parents aren't together and we take on our parents fights and it's easier to hate or not like then to accept....
Good Luck guys...
Hello to Sara & Kristina:
ReplyDelete2/3/08 - I had never heard of locked-in syndrome until a couple days ago when I saw the film, The Diving Bell and the Butterfly. Then yesterday my boyfriend Rick showed me a copy of The Oakleaf and I saw the article mentioning Sara and her condition. I showed it to Rick and he went to your site today.
iT IS so good 2 hear ur MAking progress. I cannot begin to imagine what UR going through. When my four children were younger, I dealt with a son who had life-threatening asthma. I will not bother you with what we went through. Today he is 34 years old and doing much better, though I had almost lost him four times.
Never give up hope. I hope you believe in the Bible. Life is not fair. yET we are told that God will not give us more than we can handle, and yes, I know that is very difficult to believe at times.
Sara, you are now on my prayer list. And so is your mom. Hang in there. I feel that you are to be a light for anyone else in your condition. Brighten your corner and show all around you that you can have an abundance of hope. Life was never meant to be fair. It seems that each of us are given tribulation in the life we have on this earth, but there are greater days ahead and we need to have faith, lots of it. May angels strengthen you and the Lord give you an abundance of love and kindness.
Your friend,
Brenda Palter
my e-mail address is:
poetofmerit9@yahoo.com