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!
Monday, June 28, 2010
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 :)
Anna Grace - June 28 - Update #2
So.... you may or may not be aware that today is Anna Grace's birthday. She is 6 months old today. Most people don't celebrate 6 month birthdays, but for us it is indeed a day for celebration and if she could have cake I would absolutley give it to her!
She is currently still in PCICU - they are planning on moving her this afternoon. While I have been with her this morning she ate 5 ounces of Portagen for me and had a HUGE bowel movement. I know she will one day hate that I ever posted that on the internet, but it is a VERY GOOD thing that her bowels are moving as they should.
She still has her groin lines in as they are still giving her some medications through them, but they will be removed once we get to the floor. I think they are planning on keeping her on oxygen a little while longer as her sats drop LOW when she is unhappy. Personally, I think she holds her breath when she is upset (hence the drop) but the nasal cannula doesn't seem to be bothering her too much.
She is on oxycodone for pain and she is taking it by mouth. She is still on Versaid for anxiety, which they will discontinue on we get on 7C. Of course she is on the dirutic and an antibiotic as well.
I'll try to make an update later today once we get to 7C.
Please continue to pray for the fluid on her lung to resolve and the chest tube drainage to stop so that she can lose her chest tube. Thank you.
She is currently still in PCICU - they are planning on moving her this afternoon. While I have been with her this morning she ate 5 ounces of Portagen for me and had a HUGE bowel movement. I know she will one day hate that I ever posted that on the internet, but it is a VERY GOOD thing that her bowels are moving as they should.
She still has her groin lines in as they are still giving her some medications through them, but they will be removed once we get to the floor. I think they are planning on keeping her on oxygen a little while longer as her sats drop LOW when she is unhappy. Personally, I think she holds her breath when she is upset (hence the drop) but the nasal cannula doesn't seem to be bothering her too much.
She is on oxycodone for pain and she is taking it by mouth. She is still on Versaid for anxiety, which they will discontinue on we get on 7C. Of course she is on the dirutic and an antibiotic as well.
I'll try to make an update later today once we get to 7C.
Please continue to pray for the fluid on her lung to resolve and the chest tube drainage to stop so that she can lose her chest tube. Thank you.
Anna Grace - June 28
Anna Grace's chest x-ray showed the fluid has remained about the same, so the plan is to leave her existing chest tube and keep her on the diruetics.
Anna Grace took three bottles of Portagen last night so she seems to be making the switch to yucky Portagen well.
They will be removing Anna Grace's groin lines today and MOVING HER TO 7C today. Not sure what time the move is going to take place, but they said sometime today. I can't beleive it..... I am packing a bag and planning on moving into the hospital starting today.
So, she still has pacing wires in her chest, a chest tube, an IV and the nasal cannula but we are moving in the right direction.
Please continue praying about the fluid on her lung and that all chest tube drainage will stop so we can lose the chest tube. We know we have to be on Poratgen for 6 weeks, but now that Anna Grace is older she can also eat baby food fruits & veggies because they are fat free so I am hoping it will be a little easier this time around.
Thank you for continuing to pray. We are thankful.
Anna Grace took three bottles of Portagen last night so she seems to be making the switch to yucky Portagen well.
They will be removing Anna Grace's groin lines today and MOVING HER TO 7C today. Not sure what time the move is going to take place, but they said sometime today. I can't beleive it..... I am packing a bag and planning on moving into the hospital starting today.
So, she still has pacing wires in her chest, a chest tube, an IV and the nasal cannula but we are moving in the right direction.
Please continue praying about the fluid on her lung and that all chest tube drainage will stop so we can lose the chest tube. We know we have to be on Poratgen for 6 weeks, but now that Anna Grace is older she can also eat baby food fruits & veggies because they are fat free so I am hoping it will be a little easier this time around.
Thank you for continuing to pray. We are thankful.
Sunday, June 27, 2010
Anna Grace - June 27
Sorry for the late update tonight. I didn't take my computer to the hospital today so I am now back at the townhouse and am just now being able to update you on how our little one is doing.
So... Anna Grace has been diagnosed with Chylothorax. Ugh.... so she is back on Portagen again. Please join us in praying that the drainage from her chest will cease now that we have made the switch to Portagen AND that she will drink it and be able to keep from vomiting the Portagen.
Also, Anna Grace has some fluid on her right lung. The doctors have hit her hard with diruetics today to try to get her body to release that fluid. It can basically go either way for her with this - if her upcoming chest x-ray (at 4:00 am) shows more fluid on her lung then they will add another chest tube - if the fluid on her lung is gone then we might possibly be able to get moved out of PCICU to 7C in the next day or so. Please be praying that the Lord resolves the fluid on her lung and that her upcoming chest x-ray shows NO MORE FLUID ON HER LUNG.
She is also having a rash which they are treating with Benadryl. Please be praying this resoolves as well.
As you can imagine Anna Grace is in a good bit of pain. The doctors are trying to find the fine line of keeping her comfortable but awake enouugh to eat onher own and keep her O2 sats at an acceptable level. She has been really unhappy while awake and has had to have her arms restrained because she kept pulling on lines. It is really hard as a Mom to see her like that - restained and crying. I can't hold her - I can't really console her and now she can't even have milk to console her she has to eat yucky old Portagen. Ugh... this is a tough season. Please be praying for healing for Anna Grace and for me as her Mom to be able to rest in the Lord's timing and in His will.
Thank you friends!
So... Anna Grace has been diagnosed with Chylothorax. Ugh.... so she is back on Portagen again. Please join us in praying that the drainage from her chest will cease now that we have made the switch to Portagen AND that she will drink it and be able to keep from vomiting the Portagen.
Also, Anna Grace has some fluid on her right lung. The doctors have hit her hard with diruetics today to try to get her body to release that fluid. It can basically go either way for her with this - if her upcoming chest x-ray (at 4:00 am) shows more fluid on her lung then they will add another chest tube - if the fluid on her lung is gone then we might possibly be able to get moved out of PCICU to 7C in the next day or so. Please be praying that the Lord resolves the fluid on her lung and that her upcoming chest x-ray shows NO MORE FLUID ON HER LUNG.
She is also having a rash which they are treating with Benadryl. Please be praying this resoolves as well.
As you can imagine Anna Grace is in a good bit of pain. The doctors are trying to find the fine line of keeping her comfortable but awake enouugh to eat onher own and keep her O2 sats at an acceptable level. She has been really unhappy while awake and has had to have her arms restrained because she kept pulling on lines. It is really hard as a Mom to see her like that - restained and crying. I can't hold her - I can't really console her and now she can't even have milk to console her she has to eat yucky old Portagen. Ugh... this is a tough season. Please be praying for healing for Anna Grace and for me as her Mom to be able to rest in the Lord's timing and in His will.
Thank you friends!
Saturday, June 26, 2010
Anna Grace - June 26
Let me start by saying thank you to everyone who is posting comments on our BLOG and sending us e-mails. We can't respond to everyone, but please know that we are reading your comments and e-mails and we sincerely appreciate you taking the time to "drop us a note" of encouragement. We thank you for walking the journey with us.
Now.... to update you on Anna Grace. She has been in some pain as you would expect and the doctors have been trying to keep that under control with medication. Her nurse last night said she was VERY UPSET to wake up with the vent in. Thankfully this morning about 9:00 am they were able to extubate her. Her blood gases and been good since extubation so as long as that continues to remain good then they are going to let me try to feed her a few ounces of milk around 2:00 today.
Her chest x-ray this morning showed that her lungs "were wet" so they have given her a diruetic to help her body release that fluid. Her face is still swollen along with her eyes, but overall she looks good. Well... that's relative really. She looks better than she did after her Norwood.
She has lots of tubes in her right now.... pacing wires, chest tube, RA line, groin lines and an IV in her foot as well as a nasal cannula for some supplemental oxygen. We are praying that over the next 24-48 hours she will be able to start losing some of those.
We won't know about the Chylothorax until we start feeding her food so I imagine that if she is able to start eating today we'll start to see evidence of chylothorax (if she has it) within about 24 hours.
Please continue to pray with us about the chylothorax, pray that is is able to take food by mounth and keep it down, pray that the pressures in her head will not cause her too much pain, pray that her body is able to release the excess fluid it is retaining, pray that her white blood cell count remains normal and that she maintains a normal body temperature.
Thank you friends. We will try to make another update tonight before bed time.
Now.... to update you on Anna Grace. She has been in some pain as you would expect and the doctors have been trying to keep that under control with medication. Her nurse last night said she was VERY UPSET to wake up with the vent in. Thankfully this morning about 9:00 am they were able to extubate her. Her blood gases and been good since extubation so as long as that continues to remain good then they are going to let me try to feed her a few ounces of milk around 2:00 today.
Her chest x-ray this morning showed that her lungs "were wet" so they have given her a diruetic to help her body release that fluid. Her face is still swollen along with her eyes, but overall she looks good. Well... that's relative really. She looks better than she did after her Norwood.
She has lots of tubes in her right now.... pacing wires, chest tube, RA line, groin lines and an IV in her foot as well as a nasal cannula for some supplemental oxygen. We are praying that over the next 24-48 hours she will be able to start losing some of those.
We won't know about the Chylothorax until we start feeding her food so I imagine that if she is able to start eating today we'll start to see evidence of chylothorax (if she has it) within about 24 hours.
Please continue to pray with us about the chylothorax, pray that is is able to take food by mounth and keep it down, pray that the pressures in her head will not cause her too much pain, pray that her body is able to release the excess fluid it is retaining, pray that her white blood cell count remains normal and that she maintains a normal body temperature.
Thank you friends. We will try to make another update tonight before bed time.
Friday, June 25, 2010
Anna Grace - June 25 - Update #7
Brian and I just met with Dr. Bradley. They are getting Anna Grace settled in PCICU as we speak. We can go see her at 3:15 today.
Dr. Bradley said that Anna Grace had very desnse scar tissue so he had a hard time getting through it, but that surgery went smoothly with no problems. He was able to do the three repairs which he wanted to do : (1) Removing the shunt and suturing the SVC to the pulmoary artery, (2) patching the artery to the left lung, and (3) patching the "y" connection to the aorta. He said they did an echo at the end and that it looked good. Right now Anna Grace is asleep and is stable. He was able to close her chest as well.
Let's just all PRAISE THE LORD together right now for HIS good favor upon Anna Grace today during surgery. We are so thankful!
As you would expect she still has a long road to recovery and there is still much to be in prayer for, but one big hurdle has been crossed today and we are thankful.
Please be praying for no chlyothorax, that she remains stable, that she can come off the ventilator soon, that the doctors will be able to manage her pain well and that there would be no infection or fever.
We will keep you updated as we know more. Thank you prayer warriors!
Dr. Bradley said that Anna Grace had very desnse scar tissue so he had a hard time getting through it, but that surgery went smoothly with no problems. He was able to do the three repairs which he wanted to do : (1) Removing the shunt and suturing the SVC to the pulmoary artery, (2) patching the artery to the left lung, and (3) patching the "y" connection to the aorta. He said they did an echo at the end and that it looked good. Right now Anna Grace is asleep and is stable. He was able to close her chest as well.
Let's just all PRAISE THE LORD together right now for HIS good favor upon Anna Grace today during surgery. We are so thankful!
As you would expect she still has a long road to recovery and there is still much to be in prayer for, but one big hurdle has been crossed today and we are thankful.
Please be praying for no chlyothorax, that she remains stable, that she can come off the ventilator soon, that the doctors will be able to manage her pain well and that there would be no infection or fever.
We will keep you updated as we know more. Thank you prayer warriors!
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