Saturday, June 11, 2011

HOME..just busy!

Holy Cow!!!!! I have not had a minute to post. We have been discharged. They have K on some stronger antibiotics for a bacterial infection in her lungs. This bacteria may have been festering for awhile and they seem to think that is what may have been causing problems (migraines, cough, vomiting, fevers) for the last couple of months. Its not a common bacteria to see, so it was likely missed/passed off for pneumonia. Therefore, with ALL the antibiotics she has been and nothing has touched it and she has never gotten better.

So far, she has done very well since being on the new antibiotic. Now her heart rate and O2 at night is better than it has been in a long time. No more naps and all she wants to do is run and play. She spent the day in her swimming suit, although no swimming took place. Also her appetite is making a comeback. It has taken a hit lately.

I am so grateful that our stay was short and simple. Grateful that it was NOT what was originally diagnosed from the doctor who read her chest xrays (we will not be going back). We feel so humbled and blessed. All it takes is a few seconds for your world to take on a drastic change for the good or the bad. Needless to say, after what we were told on Wednesday......We feel blessed! Thank you for your love and prayers. We have some friends up at the hospital that could really use your prayers. Their names are Carter and Megan, they would be grateful for your faith and prayers....

Wednesday, June 8, 2011

From One Hotel to "The Other"

Finally, my baby girl is sleeping. Kaidence has been sick for about 1 1/2 weeks. It would almost seem off and on with a constant cough. She has been napping everyday and that is so NOT Kaidence. She also has been getting some pretty severe headaches since her rejection last August. They come on so sudden and cause her to vomit. They really do a number on her.

The last couple of days her cough has gotten worse. She has slept non stop and been super grumpy. I can't recall a time that she has slept like this (without drugs inducing it). She has also been super grumpy and that is not a Kaidence thing. With the cough, she has had a hard time moving the junk up and out. She has had a couple of blues spells from this. Her heart rate has been a HUGE concern for me. 152-154 SLEEPING! That is NOT a good thing and could be a sign of that darn R word.

I have been in touch with cardiology over the last week and she has also seen her pediatrician twice. It was yesterdays appt that got the ball rolling. Kaidence looked much worse than she had the two days before. Also, she had a chest xray done at the hospital by our house. It revealed a possible pneumonia in the upper right lobe. The main concern was the fluid in her lungs most likely caused from her heart. This is where I freaked out a little...or a lot! I think I cried the whole way to the hospital. The thought of her heart being in rejection again, just broke mine.

We were admitted by cardiology so we didn't have to spend hours going through the ER. Her echo for the most part looks good. Her valve is pretty leaky and that may be contributing to the fluid in her lungs. Her xray from here showed that stuff had cleared from her lungs from the xray earlier but she still had fluid in them (if the makes any sense?) They think that she may have had a mucous plug blocking her lung and trapping the junk in and then when that plug dislodged her lungs cleared a bit. If the fluid continues, we will start her on some lasiks.

Kaidence had a good night and looked a little too good to be a sick kid at the hospital. We all know better than to think she is as good as she looks. This morning she looks pretty tired. Her coloring isn't as good as last night, she is coughing more and she does not want to eat. Also, the urine output is not so great. Last night she wanted to go walk around the hospital pushing her IV pole (ya, makes her feel cool. Like she is a big kid.) Today she walked to the potty in her room and needed to go lay down. Respiratory Therapy has started doing some treatments on her every 3 hours. So far, we are waiting on labs prograf and CBC.
It does not look like pneumonia at this moment but possibly some sort of bacterial infection that needs to be treated with a different antibiotic than those used to treat her last pneumonia and sinus infection. Kaidence does have a surgery scheduled for the end of the month to do some work on her vocal chords and her airway. Hoping that things will improve so that we can get that taken care of.

I will keep you posted. Thank You for your thoughts and prayers!