Anna Grace - July 1 - Update #2

Anna Grace's urine culture came back negative for bacteria today. That is encouraging. They will watch her urince specimen for the next 48 hours and see if anything grows. If after 48 hours nothing has grown then they will pronunce her "clean". We can't go home until she has a "clean" 48 hour specimen so this is really critical for us. She is still on the IV antibiotics which she is tolerating OK. The portagen she is still struggling with drinking, but she did gain a little weight today and so the doctors are fine. She has enjoyed her rice cereal, sweet potatoes and green beans more than ever before!

So, I took my much needed shower at the hospital and I am doing the hospital night shift again tonight. A change of plans, but I did have an almost 2 hour nap this afternoon so I am feeling about as refreshed as I can under the circumstances.

Please join us in praying that her urine specimin does not grow any bacteria - this will indicate that the antibiotics are working. Then maybe we can start talking about going home????? Her heart function looks good, the doctors have said the UTI is the only thing keeping us here.

Anna Grace - July 1

Anna Grace had a good night last night. I am so thankful. I think she has turned a corner, she is starting to act like herself again and is even smiling and cooing at me. She is eating the Portagen OK - enough for the doctors to be satisfied. I even unhooked her this morning and took her for a little stroll down the halls for about 15 minutes. She seemed to enjoy just being out of the bed for a little while. There are some pet therapy dogs doing a pet parade here today and we are really excited about seeing them. The doctors have not yet made rounds today, but I know they are planning on taking another urine sample from Anna Grace to be analyzed. This will tell us if the IV antibiotics are killing the bacertia. Please pray that it is working and that we don't have to start fresh on a new antibiotic, Lord willing.

I think Brian is going to spend the night at the hospital tonight and let me go to the townhouse. I need a shower and a good night sleep, in that order :)

So... I just wanted to throw this out there in case you might be looking for a way to minister to kids. There is a baby (about Anna Grace's age) just down the hall from us and her Mom works and can't be up here with her. The nurses are busy and don't really have the time to just sit an hold her, although they do the best they can. There was a volunteer who came up here yesterday and held this little baby for about 2 hours and this normally fussy baby quieted down and just sat in this person's arms, content and quiet and happy just to be held. So.... just so you know there are always babies at the hospital who need to just be held - if you have a couple hours of time to spare to volunteer there are no shortage of babies who want to be rocked and loved on.

So, we are thankful that the LORD has been so gracious and merciful to us. He continues to provide for us and to give us what we need exactly when we need it - from an e-mail to a hug to a scripture verse from HIS WORD - the Holy Spirit is alive and at work all around us. I can see the LORD working so clearly - so tangibly - all PRAISE and GLORY to the LORD!

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).