Saturday, January 30, 2010

The Petri Dish

This has not exactly been one of our better weeks with Anna. Up until about about Saturday night the whole Daycare thing had been of the Gods. Anna was eating better, talking more, putting up less of a fight at bedtime, and just overall seemed to be happier. She had a constant clear runny nose since about the 2nd day but I was not worried. I really expected her to have a runny nose for about the first 6 months or so. I actually would rather get it over with now than waiting until she gets into public school and is penalized for absences. But realize, I do know that I am daily dropping her off into a life size petri dish. So last Saturday night I noticed she coughed a few times after I put her to bed but I was not worried. It was worse Sunday night and has continued to get worse each night since. She is on antibiotics now because at some point the virus turned into an infection. Anyway, this is a cough like I have not ever heard before. She coughs and chokes and spits and sputters and eventually sometimes even vomits. We have tried cough meds, breathing treatments, nebulized saline, steamy showers, cold name it and we have tried it and nothing really seems to be helping. Her fever is finally gone and for that I am grateful but seriously, I never knew a 24 (now 23) lb kid was capable of producing this much snot. If you are in the Gainesville area and going to buy Kleenex don't waste your time. I am pretty sure we have bought everyone out. Carly had lots of colds and ailments but nothing like this. Anna is having to sleep with us because she is getting choked at night and can't breathe so this old mama is not getting much sleep either and it is showing! She is choking on foods and liquids too and then puking her feeds during the night. Needless to say, tube feeds have taken a hiatus because I am not a fan of the 2am vomit. She was doing so good too! She had gone over 2 weeks without a middle of the night puke thanks to the erythromycin. I know she needs the nutrition but if she is going to puke it up anyway then really, what good am I doing? The worst part of the whole thing is that she is already down over a lb. We have worked so hard to gain that lb and within a week it is gone. I am frustrated but I know she will eventually get better and we will put the weight back on her. I am still researching ways to withdraw my excess fat (rest assured, there is plenty) and transplant it to her. I mean, really, we can transplant organs so fat should be much easier right? In other news, Kenneth turned the big 4-0 this week. Although he is MUCH older than me ( I am still only 21 last time I checked) I still love him anyway. We were going to have a big shindig but postponed it since we ended up with snow and ice again this weekend. I found the most perfect card for him, for us, and for our situation...

Any idea where the year went?
I think I missed it.
Running around in circles,
Taking care of stuff...
And I wonder...
Did I love you enough?
Did I look at you and really see
The remarkable man you are-
And tell you how lucky I am
To be married to you?
Well, it's about time I did
Because I am, you know...
I am and I do and I will-
And I hope you know it.

I spend so much time going and doing that I forget sometimes to just stop and really show and tell my awesome husband just how much I love him and how much he means to me and how I really do not think I could ever survive a day without him. Life in general changes things but throwing a special needs kid into it really changes things and I am so proud to say we have made it this far and I am so proud that we celebrated his birthday together, again, and I pray there will be so many more. Kenneth, if you are reading this, I love you so much and thank you for being who you are, everyday, and for loving me, everyday, for who I am!

Saturday, January 23, 2010

Sometimes God Has Other Plans

As I had posted months before, Kenneth and I had decided that our family was complete. Although we both had a longing in our hearts or another child we knew the risks were high and maybe higher than we were willing to accept. We had talked about vasectomies and tube tying and hysterectomies but neither one of us ever made an appointment. I cannot take birth control due to my clotting disorder so we were just "careful" with sex but truthfully never worried too much since it took us a year of really trying to get pregnant with Anna. But God had other plans. Although I had suspected it for a week or 2, we found out for sure on Thursday morning that we were again expecting. We were shocked but the shock quickly turned to excitement. We spent that day talking about it and smiling and being happy that although we had not planned it that our wish for a larger family was coming true. I was already dreaming about another baby and how it would feel to have those kicks inside of me again and hoping that this pregnancy would be a healing one. The day was absolute bliss. Much later in the day I began cramping and bleeding and have gone on to have a miscarriage or chemical pregnancy or whatever you want to call it. I am sad and Kenneth is to. Although we weren't pregnant again for long, it was long enough to get excited about what was to be. I do not know why I was allowed to get pregnant for that brief moment but that brief moment has changed everything. I want another taste of that bliss...

Wednesday, January 13, 2010

Fairytales Sometimes Come True

1. Anna is eating, unassisted, while sitting still!!!

2. Anna is asleep, in her own bed, getting her feeds, not propped up on 50 pillows, and no puke or diarrhea in 2 nights!!!

3. Anna finally decided to ride on the 4 wheeler she got for Christmas. She cannot, however, ride it like a normal person but instead insists on standing on it while Carly sits behind her and pushes the button for her. Ahhh, sisterly love hard at work! And this is the kid they said might not ever walk...

Tuesday, January 12, 2010

No Guarantee

My monkeys, how I do love my monkeys. They are both in "school" now. Carly in real school and Anna in daycare. They are both doing well. Anna thinks she has to have homework when Carly does so we give her paper and crayons and let her do her thing. I am certain when the homework really comes along she will not be quite so interested in doing it. I am amazed at how well Anna has adjusted and is doing in daycare. Her speech is better with each passing today and I am finally really able to take a deep breath: 1. because she is talking and going to be verbal and 2. because I don't have to learn sign language. I was terrified of how and if I would ever be able to learn it. I wouldn't mind knowing a second language but to think about having to know it and use it to ever be able to communicate with your child is a whole different beast. When I picked her up today she said, "CawYee ungo ohm!" (Carly. Want to go home.) She is so in love with Carly. Carly is the first thing she asks for when she wakes up and the last person she wants to see before she closes her eyes at night. I pray that the bond between the two of them is always this strong. Carly is having a hard time right now at night. She is afraid someone is going to come into our house and kidnap her at night (yes, I know, high anxiety). We have added "...and keep Carly safe" during her nightly prayers and as soon as we finish her prayers she takes a deep sigh of relief and says, "I can sleep now." I hope and pray that she will always have faith like a child and that she will always firmly believe as much as she does today that the Lord will protect her and hear her cries and answer her prayers. As I sat in Mrs. Bezner's funeral today I really started thinking about just how precious life is and how suddenly it can slip away. I also have a second cousin who will be buried tomorrow. She was only 54 and was fine one day and on a ventilator and then dead within 3 days. This earthly life is not guaranteed. We are not guaranteed another second, much less another day. All I know is that each time I am faced with a death I just want to hold my kids a little tighter and hug my husband a little longer...
Oh, and just so you know that God has a nice sense of humor... I wrote the last post and then went to work the next day and had...drum roll please...yes, another drug overdose.

Friday, January 8, 2010

In Case You Were Wondering

God is real. He is so real and he still moves. He makes things happen. You can call it coincidence or whatever you want but the events of today were nothing more and nothing less than divine. I have really been suffering from burn out at work lately. I am so incredibly sick and tired of cleaning up after drug addicts and others who have trashed their bodies and then blamed society or the medical profession for the fact that we cannot fix them. Day in and day out I see people who deserve to get better and walk out of the ICU die and I see people who are the lowest forms of human beings survive and thrive. It makes me sick and it makes me wonder sometimes just what I am doing and why I keep doing it. Then everything changed. I started caring for a lady on Sunday who was as sick as they come. She was on a ventilator, sedated, paralyzed, and in ARDS. She just survived breast cancer was but succumbing to a horrible viral pneumonia. I cared for her most of this week. Although I never heard her mutter a word I could tell that she had the sweetest spirit. Her family...they were nothing less than precious. She had 7 kids and a dear husband. Anyway, for whatever reason, I really connected with this family and this patient on a level I had not done in quite some time. I have yet to figure out why some cases come and go and I never give them a second thought and then others will shake me to the very core of my being. In the beginning of my career I remember being so tender hearted and I have seen myself become hardened over the years. I think sometimes it is just a self protective thing. It can be good but it can be detrimental at times too. So I was supposed to be the patient's nurse again today but received a phone call early this morning that I would be on call. There was going to be a patient going for heart bypass (CABG) surgery and that I would be called in for that case which was going to the OR at 0730 and would likely be compete around lunch. I ended up getting called in earlier than lunch and arrived at the hospital at about 1000. I had time to visit with the family and say a few things to the patient. She was still sedated and paralyzed but I never stop talking to my patients. I have no idea of knowing when the hearing goes. I then walked out of the room and down to the other end of the ICU when I heard "Code Blue" and without even looking I knew it was her. We did CPR and pushed some drugs and eventually we got her back. Although we all knew what was to come we carried on. She never really recovered her oxygen saturation but stayed alive long enough for the rest of her family to get there. Once they were all there then the Priest arrived and prayed with her and with them. And then just as quietly as she had entered our unit, she slipped from this world into a better place. It was so sad. My heart broke right along with this family. I noticed none of the nurses were looking each other in the eye because we were all trying to choke back the tears. I have never wanted so badly for someone to get better and for a family to get their mother back. The family thanked me over and over for what I had done. I only wanted to thank them for allowing me the chance to get to know them and their mother. I know she must be awesome, she was the mother to all of these wonderful people. We cleaned her up and called the funeral home to come and get her. The family stayed with her and I was able to visit with them a bit more. The funeral home came and they were all gone. And I will miss them. Then suddenly beds for the other patients we had transfer orders for came available and I was no longer needed. I was sent home. That just doesn't happen. You never get put on call, called in, and sent home. But my God, he knew I needed to be there. He knew I had laid awake at night praying for this woman who I barely knew and he knew I needed to see this through to the end. The family was grateful I was there too. I think they felt blessed to have had me care for their mother and told me I am like family to them but the truth of the matter is they have blessed me far more than they will ever know. They made me realize why I am doing what I am doing and that it is worth doing and that every now and then, when you least expect it, people come into your life for a brief moment and change everything. God Bless this sweet woman and her sweet family because God knows they have blessed me! And if you are wondering why My God would let her die just remember, there is a season for everything...

Thursday, January 7, 2010

It's The Little Things

I am a sucky car owner. I have a decent enough car. It is a Nissan Altima, it is black, and it is in pretty good shape, no thanks to me! A few months back my check engine light was coming on and staying on. I was reluctant to take it to get it fixed because I just don't really trust mechanics. Anyway, turns out that not getting your oil changed for um, say, a year, might not be a good idea. We added 4 quarts of oil and now I get oil changes as I am supposed to (mostly). I am lucky the engine didn't blow up! So the past few days I have been noticing that when I hit about 55 mph my car starts shaking, pulling to the left, and becomes increasingly difficult to steer. I was going to take it today and get the alignment fixed and have them see if I had a bad tire. Since the Christmas freeze it seems the pothole population has exploded. I went first by the station to see Kenneth and drop off some sausage balls I had made him. I explained my car troubles and so he looked at my tires and quickly realized they just needed air. They hold a maximum of 44 psi. My average psi on my tires was about 18. So after some free fire station air I was on my way and avoided the tire store and the hundreds I likely would have spent there. I really need to learn to be a little more responsible, especially when it comes to car maintenance!

Anna started daycare on Monday and is doing so well, so much better than I expected! She loves to go, has not shed a tear when we drop her off, and has even been taking, get this, naps! She is such an imitator and if the other kids lay down and nap then she will too. She is also holding her own and already decked some kid in the gym for trying to steal her toy. Thank God that he gave her a mighty personality to go with her tiny body! She isn't eating much there but I am not shocked or worried about it. I told them not to worry either that we will make up for it in tube feeds at night. She started on the Erythromycin on Tuesday. It is 125mg twice a day. It is definitely helping with her motility...the dirty diapers have been non stop. We are going to stop her Miralax and keep going with the Erythromcyin and see what happens. She didn't get the Miralax last night and still pooped today but I am not sure how long Miralax has an effect for. If the pooping continues at this rate I am not sure she will be able to tolerate the meds:( I was really hoping this was it. Oh well, I am not giving up yet. She is not sleeping at night again. She goes down easily, in her own, bed, awake, and quickly falls asleep. Then she begins the waking between 10:30-11 and it goes on about every 2 hours. There were a few nights she got up out of her bed and went and got in bed with Carly and slept. That actually worked quite well but she has not been doing it anymore. Sometimes she goes back to bed fairly easily and sometimes she is up for 2-3 hours. I don't know why but Kenneth and I are both handling it much better than we used to. She sees the neurologist in February and I hoping for an increase in the trazodone. She has been on the same dose since she started it so maybe she is just growing too used to it. Who knows. One thing is for sure though, she is by far my favorite insomniac!