Wednesday, December 31, 2008
No, we don't jump at the first sign of sickness and cart our daughter off to the hospital. Quite the contrary we tried everything to STAY HOME, but after 8 hours of walking a thin line we gave in and went the the emergency room where we were quickly admitted to the PICU.
Once again Faith's condition quickly began to deteriorate over night. Increased work of breathing, needing 4X her normal oxygen requirements, bloody secretions, and increased vent settings got the better of her. So we're ringing in the new year from The Children's Hospital, once again.
She's doing alright today. Still working to breathe (when I say that, that means you can see her ribs every time she breaths and her nostrils flare- imagine how hard you breathe after a fast sprint- that's her breathing, even on a ventilator). She's on pretty high settings right now (a rate of 20) on a more powerful ventilator. So who knows how long we'll be here. Believe us, we've been pushing to go home since walking through these doors, but in due time. Among other things she's on IV antibiotics which will hopefully knock out the perpetrator this time around.
So no reminiscent posts tonight, we'll save the well wishes for 2009 for when we are OUT of the hospital.
Brian & Jen
Saturday, December 27, 2008
Brian's mother is here from Buffalo, and my Uncle came from Georgia. Yesterday we went to see Marley & Me (one of my favorite books) which was very relatable (we have two beyond-trainable labs of our own). It was nice to get out and do something "normal." Faith stayed at home with our nurse, who apparently makes holiday house calls (have I mentioned how much we love her?).
We are enjoying just lying low and hanging out. It's nice not feeling chronically tired for a change. Not many jobs will give you two weeks off around the holidays so we are very appreciative for our profession!
I'm absolutely terrible about taking pictures, so I only have a few Christmas morning pictures. I guess I am better about documenting Faith's life with words. ;)
Here are some snapshots from the day:
Faith LOVED her life sized Elmo doll (and I'm glad because I stood in line for 2 hours at 4am on Black Friday to get it!) She thinks he's real.
How in the world did Santa fit you down that chimney?
Peek-a-boo! I see you!
For the most part Faith was a spectator, hiding behind the ottoman and taking it all in. She sure loves her new toys now! In this picture Aunt Kristen (Brian's sister) helps her open a tambourine toy. Does that come with Guitar Hero? I'm ready to rock!
Hmm...and what do we have here? Word on the street is that Grandmas always bring the best presents.
Ok..overload! Make it stop!!!! (Faith is not a fan of wrapping paper)
Boy, all that openin' was exhausting! And hey, what's with all the people around here and those books? Does that come in a kid-friendly print? (Yes, that's my sister-in-law reading a Twilight book (it's an epidemic I tell ya) and I'm sure she'll be mad at me for posting this. :P But I just had to show the world that I'm not the only one who couldn't put them down.
Our Christmas Miracle, a.k.a our nurse, Dee (who will also be mad at me for posting this but I cannot get over how lucky we are to have her!) Can you tell how much Faith enjoys her?
I know look-at-my-child Christmas pictures can be a snore, (blogs are the new wallet pictures) so thank you for allowing us to gloat.
Happy New Year!
Brian & Jen
Sunday, December 21, 2008
Jen (and no Brian tonight...he's not allowed...j/k.)
PS: I'm really not kidding- after the game one of our friends joked that Brian would be sleeping on the couch tonight. Since we never sleep in the same bed we won't have that problem. ;P I guess I'll have to find another way.....
Sunday, December 14, 2008
In an effort to avoid the influenza infused crowds at the mall, we opted for Bass Pro Shop, naively thinking it was our little known secret that the man in red made his appearance among tackle and hunting supplies.
45 minutes later in a line with screaming children (thankful you don’t make noise) we came to the conclusion that the secret was out and perhaps the mall, which was much closer than this over sized testosterone-filled Mecca, would have been a better choice.
We had very low expectations for the Santa experience (after what happened last year I wasn’t going to make that mistake again) so of course we were not dismayed when you kicked and screamed (once again…very thankful you are not audible..) when we approached the jolly breaded man. The photographer’s assistant (weren’t they supposed to be elves? I suppose if anything sported pointy ears in this habitat they might be shot and skinned) reassured me not to worry and perhaps Mrs. Clause could hold you. While we knew this would still induced tears, it was probably better than having you decannulate on Santa's lap.
When your turn finally arrived I quickly passed you off to Santa who looked at me like I must have been out of my mind…all the while I was thinking “you’ve got it easy Kris, we could have brought the vent.” He mumbled something to Mrs. Clause, who got up from her perch and headed to a room in the back. Apparently option A was no longer available. By the looks of things option B wasn’t any better, as you were in full tantrum mode at the point. I quickly learned that option C wasn’t ideal either….Mr. C. patted his knee, gave me a wink, and told me to sit on his lap. I hesitated, looked for your dad (who was fumbling with the camera, apparently the memory was full and he was quickly trying to delete photos) I looked at creepy Clause again, who was grinning ear to ear as he confided in me that he had “locked Mrs. Clause in the back,” and I quickly realized that you were not the one who was going to need therapy for this, but that this encounter with dirty Santa would earn me a few sessions on the coach as well.
And before I knew it, it was over. Well, at least we’d get some funny pictures for the blog, I thought. These pics would certainly make Halloween look like a dress rehearsal. When I mentioned this to your dad, who was still fumbling with the camera, he admitted that he didn’t get any. And as it turned out the generic “free-but-we’ll-guilt-you-get-into-buying-the-complete-package” photo was all we had. And you know what? It wasn’t that bad. The theatrics didn’t even come through. All that drama for nothing.
Feeling disappointed (and violated) that we didn’t get pictures of you by yourself, as we walked away I gave your dad my best doe eyed look (I had plenty of practice starring at all the mounted carcasses while in line) and mentioned that maybe we could swing by the mall for another shot…..afraid to answer, his eyes begged for mercy…..and that’s when I knew that the therapy tab had come to three.
Here are the fruits of our labor.....
Whoa Buddy, watch those hands! The only thing creepier than pervy Santa is the stuffed dear in the back (there are some things I will never understand...) And don't worry I did not give St. Nick the pleasure....I strategically hovered above his already defiled lap....this Christmas I will be looking forward to the coal. ;)
Monday, December 8, 2008
As you may or may not know nursing has been a thorn in our side for the past several months. I am hesitant to write about it because I don't want to offend any of our past and present home care nurses. As you know Faith requires skilled nursing care. I cannot tell you the number of times people ask me why we can't just hire a nanny...I'm not even going to go into the explanation of why that's not a possibility (once again..don't have the energy) but long and short it's not an option. So private duty nursing IS our childcare, which has been very stressful with seamlessly revolving door the nature of the business seems to have. A few months ago we panicked when we thought we were without a day nurse but to our relief the agency sent out a temporary person who we REALLY like. She's ours until they find a replacement, and as with this nature of the business it is probably going to be a while until they do. Which in this case is very good news. I cannot tell you the relief we feel when we are at work and we know Faith is in good hands. I hope this one is a keeper!
When people ask me about how Faith is sleeping I never know how to answer the question. Compared to where she was a few months ago she is sleeping better. Compared to what a child her age should be sleeping, it's still a huge issue. She no longer bangs her head on the crib rails for hours (we solved that problem by taking the crib away and she now sleeps on a mattress on the floor). Faith never seems to get into an REM cycle. The only way I can explain it is that she is just "touchy" and restless. We gave up on night nursing because it was more trouble than it was worth, so Brian and I take turns sleeping next to her in the room. I just wish we knew why she is so restless at night. And I really wish we had some prescribed medication that could just take the edge off (hint, hint).
When Faith is sick (which she is, yet again) the nights are horrendous. Last night she slept about 2 hours total...(thanks to Benadryl finally kicking in) these nights are difficult because she requires lots of suctioning and nothing seems to soothe her.
Following her brief hospital stay, Faith was prescribed two different antibiotics. She just finished them up this past Sunday and is sick again. This time it's with an increased amount of secretions which just isn't fun for anyone involved. I cannot even count on one hand the number of weeks she's been well in the past few months. Faith looks healthy (and in some ways she is) but she still has very fragile lungs and germs have instant access to them (through the trach). So needless to say it's going to be a long winter.
Hmmm...am I missing anything? I think that's about it.
We're just hustling and bustling around trying to get ready for the Holidays. I'd write more but right now there are cards to be addressed, lunches to pack, and a little (semi) sleepy girl (make that two...) who is ready for the sugar plums to dance about her head...(let's pray these are the extra sleepy kind.) ;P
Thanks for checking in,
Brain and Jen
Friday, December 5, 2008
I wrote the following letter to Faith a few weeks ago. I was hesitant to post it, because it is not as timely as it was when I originally wrote it. I came to the conclusion that it didn't really matter, and it might just buy me some more time before I have to write another post. ;)
Thanks for the patience and persistence, my friends.
I promise, all is well in the Reming household (now if I could just dig myself out of this laundry pile).
The original post can be found here, but here's the copy and pasted version (warning; formatting problems abound, but I am too lazy to sort them out!)
Yesterday was your opthamology appointment. I was looking forward to this appointment because it was a fresh start. We have been very blessed with WONDERFUL doctors who have cared for you. We are very fortunate to live in a place where such great care is easily accessible. The one area I feel we have not had very much luck is finding an eye doctor who not only understands what is going on with your vision but can articulately explain it to us. So when we heard your eye doc. at Children's was leaving and the earliest they could get us in with anyone knew was NEXT April I knew it was time to make a change. Fortunately I knew who to call and they referred me to a doctors who specialize in kids with vision loss.
Although the appointment was grueling 4 hours (why we were the last patient seen but we got there at 2:45pm I don't know...very frustrating..but typical..)long it was informative.
The new doc. did not have any records of your past eye exams and I gave him very limited information for the purpose of wanting an unbiased opinion. In a weird, twisted way I was comforted that he had the same diagnosis you received in April 2007 after undergoing two eye surgeries. He used terms I had heard before; scarring, macula dragging, Monocular Exotropia, Malignant Myopia......Obviously he knew what he was talking about. He confirmed what we already new about your left eye.....so eloquently articulating that the eye is "trashed..." aka blind. He was very apologetic....I laughed, thanking him for his sincerity but reiterating the fact that we have had a long road and are WAY over the fact that our daughter is legally blind.
Interestingly he found that your glasses prescription for the right eye was WAY off. This did not surprise me in the least. You have about a 4 foot field of vision with your glasses. He said either the last doc was way off in prescribing the strength, or that eye has gotten progressively worse within the past 3 months. While we do know that your vision can deteriorate, based upon the amount of this this doc spent testing your eyes vs. your previous exam, I think it was the former. So he doubled your the strength (from -4.0 to -8.0) and excitedly told us how this will open up a whole new world for you.
I will never forget when I first received glasses when I was in grade school. The world as I knew it did change. I didn't know it was possible to actually see when the teacher was writing on the board, or read street signs while riding in a car (I was finally a contender in the "find this letter on a sign..." car game, alright!).
I hope your world opens up just as mine did. You compensate so well for your vision loss. Most people don't even realize that you cannot see very well. Your hearing is impeccable and the rest of your senses are always on alert. You are so comfortable with the little rectangle rug you spend most of your day on; you know where to look when you hear someone at the door, you know where the dogs are coming from when there is swish of the doggy door, and you instantly smile when you hear a familiar voice....all of this without being able to see.
Most of the time we forget that you cannot see- I think this is our gift to you. While we take the suggestions from your vision therapist, we treat you as if your vision was 20/20.
It is when we are in the outside world, where you are not familiar with your surroundings, that we notice how much your vision limits you. On a recent shopping trip we not only noticed how disconjugate your eyes were but how you did not recognize us when we stood only a few feet away from you.
Although the world may seem like a dark unfamiliar place, you will learn to map it just like you have your rectangular rug. Never forget that you are a light to this world and have taught us all to see in ways we never thought imaginable.
So go out my brave little girl and let YOUR light shine,
Mommy & Daddy too