Anna Grace - Update #2

Sorry it has taken me so long to update there has been much discussion and deliberation as to Anna Grace's care. Ultimately what was decided is that she will continue on the IV antibiotics until she loses the IV that is currently in her foot (they usually last about 3 days or so). Once she loses that IV (pending she contracts no other infection while we are at the hospital) then we will get to go home on an antibiotic called Sipero (sp?). So, basically we're just at the hospital trying to get as much IV antibiotic in her while this IV lasts.

As for the Portagen... we found a little work around. She doesn't like to drink the Portagen, but she will eat it mixed with Rice cereal. While rice cereal does have some fat in it, it is mininmal and they don't think it should cause an issue with her chylothorax - although they are going to follow her closely with chest xrays while we are here. They really want her drinking as much as she will, but her eating it with rice cereal is acceptable.

So, please be praying that the antibiotics kill her infection and she does not contract any other infection while we are here. Please also be praying that her eating the rice cereal is not an issue with her chylothorax.

Anna Grace - June 30

Last night was a long one. Anna Grace spiked a slight fever last night around 10:00 pm - it's standard protocol in the hospital if they run a fever to draw blood & send it off to see if there is an infection. So, about 10:30 last night Anna Grace had blood drawn. I haven't heard back about the results because the doctors have not yet made rounds, but my guess is no news is good news. There is another heart Mom on the floor who came to pray with me while they had taken Anna Grace to have her blood drawn. I was tired and amotional and just plain sad. It was a comfort to have this other heart Mom pray with me while I could hear my daughter screaming in the treatment room. It can be hard being a heart mom.

So, Anna Grace being the stubborn little thing that she is has decided she is not going to drink the Portagen. When we were at home she was drinking about 30 ounces of formula a day. In the last 24 hours she has only drank about 8 ounces of Portagen. I'm not sure what we are going to do about this. If she carries on for too long they will give her IV fluids to keep hydrated.

I just spoke with the nutritionist who said she needs a minimum of 22 ounces a day. I asked about skimming breast milk and mixing it with Portagen. It's an option. She's going to do some research and get back to me.

Please be praying the by the Lord's hand she will start to drink this formula. We just have to keep her on this for 6 weeks.....

As for her UTI - she is still on the IV antibiotics and they are researching oral antibiotcs that will treat this strain of bacteria. I hope to know more later.

I keep thinking if they would just let us go home I think she would eat better and recover better at home. Somthing to talk with the doctors about........

Anna Grace - June 29 - Update #3

So... there's good news and bad news. The good news is that her chest tube and pacing wires have been removed. The bad news is that Anna Grace has a urinary tract infection as a result of the cathater. It's a rare strain of bacteria and they are not sure if there is oral medication to treat it. They are going to start her IV antibiotics for it today and then send another urine culture off tomorrow to be analyzed. Please be praying that this antibiotic was kill the bacteria. Thank you.

Anna Grace - June 29 - Update #2

The nurse just came in and gave Anna Grace her morphine. She said that pulling the chest tube is a GO!!!!!!!!! Although Anna Grace will probably be sore today she'll be feeling much better tomorrow I'm sure. They're also going to take the pacing wires out of her heart as well as draw blood and do an echo. Big afternoon for our lttle Anna Grace. Please pray that it all goes smoothly.

Oh, she was also weaned off oxygen today so no more nasal cannula - hooray! Without oxygen Anna Grace's O2 sats are hovering around 81 or 82 - she's now a pink little girl instead of a blue little girl. :)

Anna Grace - June 29

The doctors just made rounds and Dr. Bradley's assistant was with them (he is currently in surgery). Anna Grace's morning chest x-ray showed no more fluid on her right lung and her chest tube output through the night was minimal. Dr. Bradley's assistant is going to recommend her chest tube be pulled today. So, once Dr. Bradley gets out of surgery he has to give the "OK" for this to happen. If it does happen today it won't be until later this afternoon. Having been in this place before I know not to count my chickens before they've hatched, but I am encouraged that her chest tube will be pulled this afternoon. THANK YOU JESUS, I am just so thankful Lord for this blessing.

As for our night last night, Anna Grace was restless last night and in pain. She is currently taking Oxycodone for pain every 4 hours, but even with this she is hurting. Please join us in praying for the Lord to ease her pain - it's tough as a Mom to see your child hurting so much. It makes me snap at the nurses and then I feel so bad. It's not their fault, they are just trying to help. I should know that you can't go through open heart surgery without there being pain involved - it is just so hard to watch.

When they remove her chest tube this afternoon they will give her morphine in addition to her oxycodone. They will also ask me to leave the room which really is a good thing.

So, thank you all for continuing to pray for Anna Grace. Please pray that her chest tube does get removed today and that each minute her pain lessens. Please pray for me as well to be a comfort to my child and to help her endure this time with a thankful heart and an attitude that shines the light of Jesus all over this ward :) (Clearly I have failed miserably at that last night).

Anna Grace - June 28 - Update #4

So... Anna Grace's birthday present today was that she got moved from PCICU to 7C. We are now settled comfortably into our new room on 7C. She was running a bit of a fever when we arrived down here and they ordered blood work & a urine culture to be sure she wasn't fighting any kind of an infection. Her temp has since gone down - I haven't found out yet what the labs showed, but my guess is that she was just worked up from the move & it made her hot.

Anyway, we are settling in for the night. I have made up my little couch with some blankets and a pillow and I have put my pajamas on. It's been nice seeing the nurses and doctors who we spent so much time with during our last stay at MUSC. Everyone has been raving about how big Anna Grace has gotten and how cute she is :)

So, again we are just praying over the fluid on her right lung and for chest tube drainage to stop. The quicker this resolves the quicker we can go home. Please also be praying that we can rest tonight - but we are in the hospital so chances are we'll be getting cat naps tonight.

I'll post again in the morning... good night!

Anna Grace - June 28 - Update #3

They kicked me out of PCICU because they are pulling Anna Grace's central line as well as her foley cathater. I'll go back in about 15 minutes & then we'll be headed to 7C. I'll probably make an updated later tonight after we get settled into our new digs :)