One of a the key phrases with heart kids is that they can change so fast, I have felt that has always meant that they could crash so fast so we always need to be on our toes with our little Gracie---but it can be something positive! Gracie has improved remarkably fast from Monday and continues to do well.
The nitric gas was turned off yesterday and she is tolerating that well. Today they have started to slowly wean the vent settings and she is doing ok, she is still a ways from being extibated especially since she is still letting the vent breath for her completely when she is asleep, but she is progressing.
Thank you all for your prayers, fasting, and thoughts in our behalf and especially for our sweet Gracie. I know that prayers are answered and that Heavenly Father is continuing to bless us with our sweet girl and many miracles that keep her here with us.
Thursday, February 26, 2009
Tuesday, February 24, 2009
Where Gracie is at today
I'm sorry that it has taken me all day to post an update, its not because today was terrible or hard in fact today was completely different and so much better. The doctors feel that they found the source of Gracie's problems or at least the one that seems to be causing the major problems right now.
Gracie is still has a long way to go, but is definatley better off today then she was the last two days!!!
The blood cultures that were drawn on Sunday night finally grew something, turns out that it is a staph infection. Luckily they started her on an all encompassing antibiotic on Monday, but it is this antibiotic that caused yesterday's horror. The doctors believe that after two doses of the antibiotic it built up enough in her system to start working. Apparently her body just couldn't handle it causing her blood pressure to drop, even today it was still happening. We can't stop the antibiotic because it is the only way to fight the infection, so they give her some Norepi which raises blood pressure with every dose she receives and it seems to be helping her.
Today they also took Gracie off of her paralytic, but she is allowed to have boluses if needed. So far she has only needed one bolus since it has been turned off. Sometimes she just gets so mad and even her major IV pain drugs don't sedate her or calm her down enough.
Since her blood gases are looking good they have been weaning her oxygen levels on the vent, she is now down to 50% which is the lowest they will go until the nitric gas is off. It was my understanding that they weren't going to touch the nitric until tomorrow, but after calling this evening I was told they weaned the nitric from 20 down to 15. This is slower than the normal nitric wean, and I am told that it really doesn't make a difference until she is down to 5...but with Grace moving too fast, even if it is the "normal" slow it is too fast and eventually she fights back and ends up taking several steps back. I feel that today she has made strong strides and that she needs to just rest tonight, so I'm allowing them to wean the nitric down to 15, but that is the only thing they are to do tonight. Grace's night nurse promised me that if Gracie can't tolerate the wean she will go back up. The nurse also agreed to call me if they were wanting to wean the nitric more, because then I will talk to the Attending myself to help him see how slow she really needs to go and that I don't feel comfortable weaning any more.
I just feel that those that aren't familiar with Grace really understand how slow they really need to go, she has been on all of these drugs and gases so many times that she just doesn't like to give them up easily--its almost like you have to go slow enough so she doesn't even realize that you are changing anything.
Anyways now I am rambling...its the exhaustion...Thank you for your prayers, I know that they moved mountains for my Gracie and are allowing us the miracle to still have her with us. May you all be blessed and experience blessings and miracles for your selfless interest and love for my sweet, sweet baby.
Gracie is still has a long way to go, but is definatley better off today then she was the last two days!!!
The blood cultures that were drawn on Sunday night finally grew something, turns out that it is a staph infection. Luckily they started her on an all encompassing antibiotic on Monday, but it is this antibiotic that caused yesterday's horror. The doctors believe that after two doses of the antibiotic it built up enough in her system to start working. Apparently her body just couldn't handle it causing her blood pressure to drop, even today it was still happening. We can't stop the antibiotic because it is the only way to fight the infection, so they give her some Norepi which raises blood pressure with every dose she receives and it seems to be helping her.
Today they also took Gracie off of her paralytic, but she is allowed to have boluses if needed. So far she has only needed one bolus since it has been turned off. Sometimes she just gets so mad and even her major IV pain drugs don't sedate her or calm her down enough.
Since her blood gases are looking good they have been weaning her oxygen levels on the vent, she is now down to 50% which is the lowest they will go until the nitric gas is off. It was my understanding that they weren't going to touch the nitric until tomorrow, but after calling this evening I was told they weaned the nitric from 20 down to 15. This is slower than the normal nitric wean, and I am told that it really doesn't make a difference until she is down to 5...but with Grace moving too fast, even if it is the "normal" slow it is too fast and eventually she fights back and ends up taking several steps back. I feel that today she has made strong strides and that she needs to just rest tonight, so I'm allowing them to wean the nitric down to 15, but that is the only thing they are to do tonight. Grace's night nurse promised me that if Gracie can't tolerate the wean she will go back up. The nurse also agreed to call me if they were wanting to wean the nitric more, because then I will talk to the Attending myself to help him see how slow she really needs to go and that I don't feel comfortable weaning any more.
I just feel that those that aren't familiar with Grace really understand how slow they really need to go, she has been on all of these drugs and gases so many times that she just doesn't like to give them up easily--its almost like you have to go slow enough so she doesn't even realize that you are changing anything.
Anyways now I am rambling...its the exhaustion...Thank you for your prayers, I know that they moved mountains for my Gracie and are allowing us the miracle to still have her with us. May you all be blessed and experience blessings and miracles for your selfless interest and love for my sweet, sweet baby.
Monday, February 23, 2009
Pushed to breaking
I'm so stressed that I had a breakdown in the PICU--luckily we were in the back and not too many people were witnesses. Gracie has given me the biggest scare of my life, I thought for sure we were losing her. She is better now, not quite stable but hopefully getting there. She still will be critical until we find out what is going on.
Please pray, pray that she will fight. Pray that she won't give up. Pray that we will have months and years to hold, hug, smile, laugh and just be with my sweet sweet girl here on earth. Pray that we will know what is going on so we can better help her. Pray for those who are caring for her that they will be strong and strengthened spiritually and emotionally. Pray for Morgan that she will be ok without her mommy, daddy and Gracie for a bit. Pray that Heavenly Father won't take her away and that his wWill is to let her stay with us. Pray that these request will be reasonable request and Gracie's body and desire will be able to support them.
Please pray, pray that she will fight. Pray that she won't give up. Pray that we will have months and years to hold, hug, smile, laugh and just be with my sweet sweet girl here on earth. Pray that we will know what is going on so we can better help her. Pray for those who are caring for her that they will be strong and strengthened spiritually and emotionally. Pray for Morgan that she will be ok without her mommy, daddy and Gracie for a bit. Pray that Heavenly Father won't take her away and that his wWill is to let her stay with us. Pray that these request will be reasonable request and Gracie's body and desire will be able to support them.
*sigh.........*
It is so remarkable at how quickly these little heart babies can change and go down hill so so fast. It is safe to say that Gracie is the sickest baby in the unit after the little sweetheart that had her heart transplant and isn't doing so well. Please pray for the "other Gracie," she has been through so much and is truly in need of many miracles. I pray that Heavenly Father will inspire the surgeons, doctors, and nurses to know what they can do to save this baby's heart and allow it to work in the other Gracie's body.
Ok now on to my little Grace---it has been a whirlwind of emotion. Saturday night she finally slept well after no sleep for two days, her vitals were better than they had been even when she was on the floor. She woke up on Sunday and was a little cranky but was still playful, around 9am the nurse changed her PICC line dressing and needed to call IV team to re suture it. Gracie got mad and ticked off but with the help of some morphine she settled down and slept for 45 min. But she woke up quickly with low sats and screaming and the downward spiral began. Within 45 minutes her sats dropped to the high 50s and we couldn't get them past 62 even on four liters of oxygen. This continued for almost four hours and finally Annie the nurse practitioner for the cardiothoraxic team decided it was time to move her to the PICU.
We brought her down and immediately put her on high flow of 6 and 100% oxygen and still her sats were only in the low sixty's. They began to talk intubation and finally decided to intubate, I broke down and left. When we came back 30 minutes later they were hooking her up to the CPAP machine, after about two hours on that and no improvement they intubated her. Within 45 minutes her sats were stable and in the low 70s---though not where we want them, we were happier with them then the 60 sats.
Gracie immediately fought each and every attempt at giving her the oxygen she needed, she finally needed to be paralyized and sedated (with four major IV sedatives because she has built up such a tolerance). Around 6am her sats began to drop again into the high 60s and they then put her on nitric gas which seems to be the trick to open up her lungs enough to get her sats to 75. There still is no explanation for what has happened which is the most aggravating of all. An echo was done and things seem to look like they did last week--which is fairly good. There is a possibility that they may do another cath, but right now we need to give Gracie a couple of days to rest and recover from yesterday. Right now they are tapping her lungs for pockets of fluid, I don't think that they think this will help her much but feel that since the pockets have been there for awhile it needs to be done.
Right now all we can do is give Gracie some time to rest and hope that in a couple of days we will be able to find out what really is going on. I spoke to Annie this afternoon and though yesterday we felt that weaning her diuretics was the culprit, we don't think it is the main thing that is going on. If anything weaning the diuretics may have helped bring whatever is happening to the surface quicker than sending her home and having her crash on us.
Please keep us and our family in your prayers and please especially pray for both baby Gracies that they will be helped and healed in the ways that they need--both have had incredibly hard roads and have fought too hard to stop fighting and give up.
Ok now on to my little Grace---it has been a whirlwind of emotion. Saturday night she finally slept well after no sleep for two days, her vitals were better than they had been even when she was on the floor. She woke up on Sunday and was a little cranky but was still playful, around 9am the nurse changed her PICC line dressing and needed to call IV team to re suture it. Gracie got mad and ticked off but with the help of some morphine she settled down and slept for 45 min. But she woke up quickly with low sats and screaming and the downward spiral began. Within 45 minutes her sats dropped to the high 50s and we couldn't get them past 62 even on four liters of oxygen. This continued for almost four hours and finally Annie the nurse practitioner for the cardiothoraxic team decided it was time to move her to the PICU.
We brought her down and immediately put her on high flow of 6 and 100% oxygen and still her sats were only in the low sixty's. They began to talk intubation and finally decided to intubate, I broke down and left. When we came back 30 minutes later they were hooking her up to the CPAP machine, after about two hours on that and no improvement they intubated her. Within 45 minutes her sats were stable and in the low 70s---though not where we want them, we were happier with them then the 60 sats.
Gracie immediately fought each and every attempt at giving her the oxygen she needed, she finally needed to be paralyized and sedated (with four major IV sedatives because she has built up such a tolerance). Around 6am her sats began to drop again into the high 60s and they then put her on nitric gas which seems to be the trick to open up her lungs enough to get her sats to 75. There still is no explanation for what has happened which is the most aggravating of all. An echo was done and things seem to look like they did last week--which is fairly good. There is a possibility that they may do another cath, but right now we need to give Gracie a couple of days to rest and recover from yesterday. Right now they are tapping her lungs for pockets of fluid, I don't think that they think this will help her much but feel that since the pockets have been there for awhile it needs to be done.
Right now all we can do is give Gracie some time to rest and hope that in a couple of days we will be able to find out what really is going on. I spoke to Annie this afternoon and though yesterday we felt that weaning her diuretics was the culprit, we don't think it is the main thing that is going on. If anything weaning the diuretics may have helped bring whatever is happening to the surface quicker than sending her home and having her crash on us.
Please keep us and our family in your prayers and please especially pray for both baby Gracies that they will be helped and healed in the ways that they need--both have had incredibly hard roads and have fought too hard to stop fighting and give up.
Sunday, February 22, 2009
back home ( well Gracies home)
Grace was re admitted to the picu this morning. They couldn't keep her stats up and she was taking in alot of fluids. The nurse practitioner watched her alot of the morning and finally made the decision around 2. We cannot seem to console Grace and we can not keep her stats up, Grace also has a high heart rate. We are not to concerned at this point Deanna seems to think she may have a infection. We will update more when we have more info thanks for the prayers
Friday, February 20, 2009
We moved.
Gracie was moved to the floor this morning and though the move was bittersweet we couldn't be happier. We will miss our friends down in the PICU---there really are some amazing nurses and doctors down there!!! I am so glad that they love and care for Gracie almost as we do.
When we first were moved up we were double bunked, I guess the hospital is so full that they are even putting RSV patients in Surgical Unit pods, causing all hearts to be in one pod and at times double bunking. Luckily for us, the little girl went home today and we are enjoying our nice and quiet room.
Grace had an ok day today, she was more restless and cranky, I think it was the move and trying to get use to her new surroundings. Frankly I think she missed the PICU, it really has become her 2nd home spending a little over 4 out of her almost 8 months of life there.
I gave Gracie her first bottle since the admission and it was so cute, she smiled so big and opened her mouth and gulped down 18 ccs. Unfortunately her little heart couldn't tolerate the desire she had to continue the oral feed and we needed to put the rest in the feeding pump.
We met with a GI doctor and it was quite educational, he actually said that the Reglan that Grace is on for reflux could be what is causing her such discomfort and agony when she eats. Apparently reglan is known for slowing the mobility of the intestines which could be causing her to be backed up, thus resulting in literal projectile poop. So the doctor suggested that we discontinue the reglan and watch her for a couple of days to see how she does. If she still has some discomfort we will start her on a med to help with quicker mobility. We are also going to test the acidity of her stomach acid to see if we need to increase the dose of her prevacid.
Oh how I hope that these changes will help her not feel so crummy after eating. I want her eating to be enjoyable so that she will catch on to it, gain weight and hopefully lose her NG tube some day in the close future.
I think that is all the updates that I have on my sweet Gracie. She really is doing well. It is so nice to see how much better she feels this time around!
We were playing today and every time I tried to take a video she would stop smiling big and just kind of tease me.
When we first were moved up we were double bunked, I guess the hospital is so full that they are even putting RSV patients in Surgical Unit pods, causing all hearts to be in one pod and at times double bunking. Luckily for us, the little girl went home today and we are enjoying our nice and quiet room.
Grace had an ok day today, she was more restless and cranky, I think it was the move and trying to get use to her new surroundings. Frankly I think she missed the PICU, it really has become her 2nd home spending a little over 4 out of her almost 8 months of life there.
I gave Gracie her first bottle since the admission and it was so cute, she smiled so big and opened her mouth and gulped down 18 ccs. Unfortunately her little heart couldn't tolerate the desire she had to continue the oral feed and we needed to put the rest in the feeding pump.
We met with a GI doctor and it was quite educational, he actually said that the Reglan that Grace is on for reflux could be what is causing her such discomfort and agony when she eats. Apparently reglan is known for slowing the mobility of the intestines which could be causing her to be backed up, thus resulting in literal projectile poop. So the doctor suggested that we discontinue the reglan and watch her for a couple of days to see how she does. If she still has some discomfort we will start her on a med to help with quicker mobility. We are also going to test the acidity of her stomach acid to see if we need to increase the dose of her prevacid.
Oh how I hope that these changes will help her not feel so crummy after eating. I want her eating to be enjoyable so that she will catch on to it, gain weight and hopefully lose her NG tube some day in the close future.
I think that is all the updates that I have on my sweet Gracie. She really is doing well. It is so nice to see how much better she feels this time around!
We were playing today and every time I tried to take a video she would stop smiling big and just kind of tease me.
Thursday, February 19, 2009
Floor Status
We've made it!!! Though Gracie is not on the floor yet, her status is listed as floor, she will be moved as soon as a room becomes available. There are two other patients ahead of her, but sometime tomorrow she should be moved!!
Gracie passed her swallow study and seemed to actually enjoy the bottle despite the fact that it tasted horrible and she was having a coughing attack due to the excess secretions in her throat and nose. We can't begin feeding her with a bottle again until tomorrow, but baby steps have always been the way to go with Grace.
Today was a good day, actually the best day we have had since we came in almost four months. Grace really acted like herself today, she was handing out smiles to everyone who came to her bedside. Even when she felt like crap and was exhausted, she tried to play and smile. Who knows maybe the good thing about being in the hospital so long is she won't be as cranky as other babies just after the Glenn? At least we have the good meds to go home on :)
Thank you all again for your prayers, support, and love for Gracie and our family. I am so grateful that there is still hope, faith, and generosity in the world today.
Gracie passed her swallow study and seemed to actually enjoy the bottle despite the fact that it tasted horrible and she was having a coughing attack due to the excess secretions in her throat and nose. We can't begin feeding her with a bottle again until tomorrow, but baby steps have always been the way to go with Grace.
Today was a good day, actually the best day we have had since we came in almost four months. Grace really acted like herself today, she was handing out smiles to everyone who came to her bedside. Even when she felt like crap and was exhausted, she tried to play and smile. Who knows maybe the good thing about being in the hospital so long is she won't be as cranky as other babies just after the Glenn? At least we have the good meds to go home on :)
Thank you all again for your prayers, support, and love for Gracie and our family. I am so grateful that there is still hope, faith, and generosity in the world today.
Wednesday, February 18, 2009
So close
Isn't this picture so cute? Gracie spent about 10 minutes just playing with me and even smiled so big for me. I tried to capture the smile but just got this little smirk, with all the ativan, methadone,and loratab that Gracie is on I think she looks good for being so out of it.
All of Grace's IVs were turned off except for her diuretics, those she is only getting every 6 and 8 hours. She is off the high flow and doing great, while I was there today we had to titrate her oxygen from 1 1/2 liters to just 1/2 liter and she still was sating at 80. If we could only teach her to stop holding her breath and turning purple when she gets mad.
Her lungs seem to be improving, very slowly. The right side looks great, but the left side hasn't improved much. But like I said as long as she does well they will just watch it for now. We may have to come back to the hospital every couple of days after we leave to get x-rays to watch her lungs, but that is nothing.
Tomorrow Grace has a swallow study and as long as she does well through the night without her milirone we can very well be moved to the floor. Yah!!! Though I hate many aspects about the floor, number one being that I can't leave the hospital at night because the thought of her only being checked every four hours and being alone in a room scares me, it is one step closer to being home.
Monday, February 16, 2009
Slow and steady
Grace has done fairly well off the vent despite her lung condition going back and forth. Her x-ray this morning showed that her right lung had more air in it,which is great, but her left lung still looks bad. There is still some collapsing and plural effusion (extra fluid in between the lung linings), right now they aren't going to do anything different, they just want to see what happens with time. It seems as if the doctors are going to see how well she does even with her lung condition and if they can continue weaning Gracie off of the high flow without collapsing her lungs and causing poor oxygenation and respiratory problems. Currently Grace is on high flow of 4, with oxygen levels anywhere between 45%-70%. Hopefully the doctors won't wean too fast causing more set backs.
Today Gracie has been a lot calm and mellow with only one extra bolus of adavan. Though she still has her moments where she literally gets so made she turns black (no lie) she can be calmed and quited within 10-15 minutes. We were able to hold Gracie for most of the day, which was heavenly---I'm so happy that she still likes to be held and loved on.
We brought Morgan up to the hospital today so she could see Grace without her breathing tube and doing better. It was so sweet she walked in, looked at Gracie and said to our nurse, "Gracie get better, no tube." Morgan truly is a wonderful big sister with so much love and adoration for out little Gracie. Perhaps she knows better than most what remarkable Spirit Gracie has and how special she is.
Tomorrow Gracie will have an echo done to see how she is doing on the cardiac side of things. Her milirone will be weaned some more and depending on her x-ray she may be weaned more from the high flow.
Sunday, February 15, 2009
Extubated!!!!
We got here today and Grace was in the middle of a spontaneous trial off the vent---even though her blood gas numbers weren't great they wanted to see what Grace could do. Well she looked better than she did on the vent and was even breathing better so they decided to extubate.
Talk about shocked...to be honest I was extremely upset and scared to death especially because her xray looks terrible today compared to the picture perfect one taken yesterday. Seriously I was going to pounce on someone but I restrained and tried to put my trust in the skilled medical staff and knowing that Gracie tends to do things backwards anyway.
She extubated beautifully!! No holding her breath and turning purple, her sats gradually came up and she is currently resting peacefully on high-flow of 5 at 55%. We will keep you posted.
Thanks for your prayers, thoughts, and positive vibes.
Friday, February 13, 2009
Nothing new
There really isn't much to say there has been very little change where Gracie is concerned. It seems like we are stuck in a horrible dance where her kidneys just can't decide what amount of diuretics is enough to help her lungs get the fluid off without drying her out too much.
Grace is practically weaned completely from her IV pain meds (if you ask me it was rather fast and upbrut, we aren't going anywhere too soon but they figured since she is on both adavan and methadone she doesn't need the phentanyl and versed). They have also weaned the settings on the vent and I am a bit confused about it--the pressure support was weaned from 18 to 16 last night and her chest xray was worse, so I don't know why they would continue weaning it down to 14 and taking the Peep down to 6, but I guess that is why they are the doctors. To be honest I'm really having a hard time this week...the Attending Doctors changed and though I like the doctor on this week, she is just different, but who knows maybe the way she does things will bring Gracie home sooner.
I have been able to hold Grace and that has been wonderful. Last night was the first time and the nurse made me hold her with her little nest, neither of us were really comfortable, but today it was just her in my arms swaddled in a blanket and though she was a little agitated she snuggled in and I think enjoyed it, she let me hold her for an hour.
Grace is practically weaned completely from her IV pain meds (if you ask me it was rather fast and upbrut, we aren't going anywhere too soon but they figured since she is on both adavan and methadone she doesn't need the phentanyl and versed). They have also weaned the settings on the vent and I am a bit confused about it--the pressure support was weaned from 18 to 16 last night and her chest xray was worse, so I don't know why they would continue weaning it down to 14 and taking the Peep down to 6, but I guess that is why they are the doctors. To be honest I'm really having a hard time this week...the Attending Doctors changed and though I like the doctor on this week, she is just different, but who knows maybe the way she does things will bring Gracie home sooner.
I have been able to hold Grace and that has been wonderful. Last night was the first time and the nurse made me hold her with her little nest, neither of us were really comfortable, but today it was just her in my arms swaddled in a blanket and though she was a little agitated she snuggled in and I think enjoyed it, she let me hold her for an hour.
Tuesday, February 10, 2009
Perspective
I was just about to update the blog ranting and raving about how frustrated I am that Gracie seems to have so many obstacles and that it seems like nothing can go smoothly for her, but before doing so I read the blog of another heart baby who was suppose to have her Glenn this week and now doesn't seem to be a good candidate for it. Her parents may be faced with one of the hardest decisions that they will ever have to make. Ironically this baby's name is Gracie too...she has had a rough go from the beginning and is seriously a miracle. Please pray for her and her family, they are in need of extra strength, support, and comfort.
As for my Gracie, she is doing well with all things considered. Today was a hard day; not that anything happened, though lots happened. Grace definitely kept her sweet nurse busy---she didn't even get lunch until almost 4pm!!
Around 11am Grace needed to be paralyzed to take down the dressing on her art line, it was oozing blood and we needed to see why. Since we still need the line, she was paralyzed so she wouldn't move and pull it out.
At 1:30pm she had a blow out causing her to get really POed and making her nurse, another nurse and a tech have to spend almost 30 minutes changing her bed, bathing her, and then getting her to calm down and bring her heart rate and blood pressure down. At this same time it was discovered that Gracie has developed a terrible yeast infection under her neck. Within hours it spread from one ear to the other and is even spreading to the top of her incision. Gracie is now on oral anti-fungal meds and hopefully that combined with a special powder will work fast.
Grace was also started on methadone since it seems like the boluses of the pain meds she has been on aren't doing much---it calms her down, but not as much as we need. She really loved the methadone, she slept for most of the day after she got that.
Her lungs haven't improved, right now we are still trying to find the happy medium between drying her out and keeping her electrolytes high. We really are hoping that she will start losing that fluid in her chest and lungs, because now she is pulling fluid from other parts of her body, like her eyes and she really doesn't have it to spare.
Oh how I wish that I could take Gracie's pain and irritation away and allow her to have a healthy heart that is whole and complete. But I am grateful that she is doing so well. I am grateful that she is at Primary's with wonderful nurses and doctors who genuinely care for Grace and want her to excel as much as I do. I am so appreciative that they value my opinions and input about Grace's care and are willing to patiently listen to my concerns and answer my many questions, even if I may have asked the same one over and over again until I understand the answer.
As for my Gracie, she is doing well with all things considered. Today was a hard day; not that anything happened, though lots happened. Grace definitely kept her sweet nurse busy---she didn't even get lunch until almost 4pm!!
Around 11am Grace needed to be paralyzed to take down the dressing on her art line, it was oozing blood and we needed to see why. Since we still need the line, she was paralyzed so she wouldn't move and pull it out.
At 1:30pm she had a blow out causing her to get really POed and making her nurse, another nurse and a tech have to spend almost 30 minutes changing her bed, bathing her, and then getting her to calm down and bring her heart rate and blood pressure down. At this same time it was discovered that Gracie has developed a terrible yeast infection under her neck. Within hours it spread from one ear to the other and is even spreading to the top of her incision. Gracie is now on oral anti-fungal meds and hopefully that combined with a special powder will work fast.
Grace was also started on methadone since it seems like the boluses of the pain meds she has been on aren't doing much---it calms her down, but not as much as we need. She really loved the methadone, she slept for most of the day after she got that.
Her lungs haven't improved, right now we are still trying to find the happy medium between drying her out and keeping her electrolytes high. We really are hoping that she will start losing that fluid in her chest and lungs, because now she is pulling fluid from other parts of her body, like her eyes and she really doesn't have it to spare.
Oh how I wish that I could take Gracie's pain and irritation away and allow her to have a healthy heart that is whole and complete. But I am grateful that she is doing so well. I am grateful that she is at Primary's with wonderful nurses and doctors who genuinely care for Grace and want her to excel as much as I do. I am so appreciative that they value my opinions and input about Grace's care and are willing to patiently listen to my concerns and answer my many questions, even if I may have asked the same one over and over again until I understand the answer.
Monday, February 9, 2009
Not much has changed
So there hasn't been much change in Gracie's progress she is still on the vent and not really progressing. The doctors took her off of the bumex drip, but a day later had to put her back because her lungs digressed. It is so interesting to look at each day's x-rays and see either improvement or worsening, the doctors always say that the x-rays lag in what they can hear in her chest.
Today they also took a lot of cultures to see if anything grows out, her CRP levels are up and her white blood cells are showing signs of a possible infection. Right now they are continuing Grace on antibiotics and hopefully will respond positively to them.
Gracie seemed to rest well today, she actually smiled at me a couple of times this morning. Oh how wonderful it was to see my baby be happy even if it was only for a couple of seconds. I know if we can just get her lungs better she will just progress quickly and we'll be home soon.
Today they also took a lot of cultures to see if anything grows out, her CRP levels are up and her white blood cells are showing signs of a possible infection. Right now they are continuing Grace on antibiotics and hopefully will respond positively to them.
Gracie seemed to rest well today, she actually smiled at me a couple of times this morning. Oh how wonderful it was to see my baby be happy even if it was only for a couple of seconds. I know if we can just get her lungs better she will just progress quickly and we'll be home soon.
Saturday, February 7, 2009
Happy 7th Month Birthday
Today Gracie is 7 months old, but unfortunately she slept the day away with the help of her wonderful narcotics. I think she deserved it after the week she has had!!!
Gracie is doing well, she is off of bumex (diuretic) because she has done so well peeing off all the extra fluid. She still has some edema, but we don't want to dry her out too quickly. She is being weaned of the nitric gas and seems to be tolerating that well, the goal is that by tomorrow she will be off of it completely and we will start working on weaning the vent settings. Hopefully she will be off the vent and breathing on her own come Monday.
There is very little change in her lungs, but some which is good--we'll take whatever progress we can. Tonight they suctioned out some really big clumps of old blood which will hopefully so more improvement in the x-ray tomorrow morning.
She started feeds yesterday and is slowly moving up and is handling them well, the goal is to get her to 30cc an hour.
Today Morgan was able to visit Gracie. We debated whether or not this was a good idea, but ultimately felt that Morgan needed to see Gracie to understand where we have been and why Gracie isn't home with us. Morgan was so good, she was very quiet and loving as she watched Grace lay in her bed. During Morgan's visit was the only time Grace opened her eyes and actually fixed them on us for a couple minutes. It was cute, Morgan said to Gracie, "mommy, daddy, and Mimi (what Morgan calls herself) are here with you." Talk about making me cry. Morgan didn't want to leave without Grace, but hopefully Gracie will be home soon.
Friday, February 6, 2009
Quiet is good
Today has been another day of rest for our little Gracie. The paralytic was turned off and she is able to wiggle and move, though it makes her very upset and seems to hurt her. Other than that not much has happened, she is peeing like crazy which is great---at 7pm she was already negative 275cc. Who knows tomorrow we may go in and see her back to her skinny little self.
Her lungs still are a little collapsed, especially the upper right lobe. The hope is that by Sunday she will be close to being weaned off of the vent. They are putting in an NJ tonight and starting her on some feeds and will gradually work up to full feeds. I'm thinking that the earliest we can leave the PICU will be Wednesday, but I guess you never really know.
Sorry for the late posts, while I'm at the hospital I can barely pull myself away from Gracie's side. She loves it when we hold her left hand while she sleeps so it makes it hard to not do so, especially since I haven't held her in over five days.
Her lungs still are a little collapsed, especially the upper right lobe. The hope is that by Sunday she will be close to being weaned off of the vent. They are putting in an NJ tonight and starting her on some feeds and will gradually work up to full feeds. I'm thinking that the earliest we can leave the PICU will be Wednesday, but I guess you never really know.
Sorry for the late posts, while I'm at the hospital I can barely pull myself away from Gracie's side. She loves it when we hold her left hand while she sleeps so it makes it hard to not do so, especially since I haven't held her in over five days.
Thursday, February 5, 2009
She's closed!!!
Gracie is closed, it was a long procedure compared to most chest closures, but it is done and she is tolerating it beautifully. Dr. Kouretas took his time stitching up her chest and it all came together beautifully except for where she had the skin graft, it was really tight. Right now we are all hoping and praying that she heals well and that Gracie doesn't have any compromised healing issues this time around.
Jason was able to pry me away from Grace tonight and come home since she was doing pretty good. The only concern is that her heart rate was really high and we couldn't bring it down for several hours, but after only 20cc of albumin she began dropping. Tonight she will rest and tomorrow they will begin to take Gracie off of the paralytic.
We still are concerned with her lungs--the left lung looks tons better but the upper lobe of the right lung seems like it is still collapsed, so it is going to take some time. We are all optimistic that she will continue to improve, it will take some time, so we won't be going anywhere for several days.
Jason was able to pry me away from Grace tonight and come home since she was doing pretty good. The only concern is that her heart rate was really high and we couldn't bring it down for several hours, but after only 20cc of albumin she began dropping. Tonight she will rest and tomorrow they will begin to take Gracie off of the paralytic.
We still are concerned with her lungs--the left lung looks tons better but the upper lobe of the right lung seems like it is still collapsed, so it is going to take some time. We are all optimistic that she will continue to improve, it will take some time, so we won't be going anywhere for several days.
Here we go
We were just kicked out so that they could close her chest, we are optimistic about it. Hopefully there won't be many complications, if any. It should only take an hour, so we should be able to see Gracie in about an hour and half if all things go well. She had a really good morning, still peeing like crazy which is good because her belly and limbs are still quite puffy.
As we were leaving, Bonnie--the nurse practitioner asked Dr. Kourteaus when she should tell the NICU they will be up for the next surgery, his response, "um, I'm not going to say because I don't want to jinx it." Seriously that is kind of funny, even the surgeons know nothing is routine with our little Gracie.
We'll keep you all posted.
As we were leaving, Bonnie--the nurse practitioner asked Dr. Kourteaus when she should tell the NICU they will be up for the next surgery, his response, "um, I'm not going to say because I don't want to jinx it." Seriously that is kind of funny, even the surgeons know nothing is routine with our little Gracie.
We'll keep you all posted.
Turn around?
Hi everybody this is Jason, I just wanted to give everyone a quick update on Grace. I arrived at the hospital this morning at 9 am after spending the night with Morgan. As I got here the nurse said come see how good she looks and sure enough her swelling has gone down dramatically. her fluid level is at a negative four hundred which is fantastic so as of right now the plan is to close her chest at around 1 pm. We will keep everyone posted thank you for the prayers on our behalf we truly feel blessed to have so much support
Wednesday, February 4, 2009
Not today
The doctors and surgeons decided that today is not the day to close Grace--she still is too puffy and needs to get that fluid off. They have increased her pain meds and her diuretics and hopefully she will just pee like crazy today.
Her lungs still aren't looking the best, but hopefully with the lung treatments she is getting things will improve.
Here are some pictures of Gracie, they were taken after the third trip to the OR on Monday morning...
Here are some pictures of Gracie, they were taken after the third trip to the OR on Monday morning...
Tuesday, February 3, 2009
Sorry for not posting all day
Today has been better and I just didn't have the energy to post, sorry. I know many people are praying for Gracie and looking for an update.
Last night we finally left Gracie's side at 4:30am and tried to get some sleep. I called for an update and she was stable, her pressures still were higher than they wanted but it was to be expected because of how puffy she is. They did put her on nitrogen gas to help her lungs and hopefully lower the pressure the vent has to pump into her lungs, she still isn't as strong in her lungs as they want her to be.
The major task is to get the extra fluid off of her, this morning she was over 300ccs fluid positive---basically all the blood and products they gave her last night is now in her tissues causing her to be extremely puffy. Though the doctor thinks space isn't an issue, he doesn't want to close her chest until she looses some of that fluid. So the plan is to clean her up tomorrow afternoon and hopefully close her too.
Grace's heart function is still looking good so that is good and other than tweaking pain meds and glucose levels it has been a quite day. Hooray. Kind of a cute story...around 5:00pm, I turned to our nurse and said that i needed to go for a walk and literally Gracie's heart rate went from 140 to 190, we increased her pain meds and still no progress, I started singing in her ear, both the fellow and attending came in and finally after 20 minutes her heart rate began to drop. It was like she got upset and mad when I told her I was leaving for a bit. Oh how I yearn for my baby to be back, I miss her so much. It hurts so much to leave her side, to not be there with her....
Thank you so much for your love and prayers.
Last night we finally left Gracie's side at 4:30am and tried to get some sleep. I called for an update and she was stable, her pressures still were higher than they wanted but it was to be expected because of how puffy she is. They did put her on nitrogen gas to help her lungs and hopefully lower the pressure the vent has to pump into her lungs, she still isn't as strong in her lungs as they want her to be.
The major task is to get the extra fluid off of her, this morning she was over 300ccs fluid positive---basically all the blood and products they gave her last night is now in her tissues causing her to be extremely puffy. Though the doctor thinks space isn't an issue, he doesn't want to close her chest until she looses some of that fluid. So the plan is to clean her up tomorrow afternoon and hopefully close her too.
Grace's heart function is still looking good so that is good and other than tweaking pain meds and glucose levels it has been a quite day. Hooray. Kind of a cute story...around 5:00pm, I turned to our nurse and said that i needed to go for a walk and literally Gracie's heart rate went from 140 to 190, we increased her pain meds and still no progress, I started singing in her ear, both the fellow and attending came in and finally after 20 minutes her heart rate began to drop. It was like she got upset and mad when I told her I was leaving for a bit. Oh how I yearn for my baby to be back, I miss her so much. It hurts so much to leave her side, to not be there with her....
Thank you so much for your love and prayers.
Done Again
It is now 3:10am and we just spoke to Dr. Kourteas, he believes that he found the source of the bleed---a small blood clot and some vascular tissue from her first go around. He thinks that going in he may have bumped something that caused her to start bleeding, the cauterized (like saudering) and are very optimistic.
Jason's dad came back up so we wouldn't have to wait alone, Jason fell asleep in one of the empty sleeper rooms and I'm just waiting to go back and see her. If she looks good, we will go to the hotel---we are staying at the University Guest housing, a 5 minute walk from the hospital. Oh how I hope things will look up from here.
She is still open just like after her first surgery, mostly as a precaution and because she has been through enough today and needs to be able to rest. We're hoping to close her in a day or two. Her lungs are still recovering and that will take a day or two, but she is doing better.
Thanks again for all your love and prayers.
Jason's dad came back up so we wouldn't have to wait alone, Jason fell asleep in one of the empty sleeper rooms and I'm just waiting to go back and see her. If she looks good, we will go to the hotel---we are staying at the University Guest housing, a 5 minute walk from the hospital. Oh how I hope things will look up from here.
She is still open just like after her first surgery, mostly as a precaution and because she has been through enough today and needs to be able to rest. We're hoping to close her in a day or two. Her lungs are still recovering and that will take a day or two, but she is doing better.
Thanks again for all your love and prayers.
Three's a Charm?
It is currently 1:54am and Gracie is going back for her third trip to the OR today---she is still bleeding and we don't know where. We are hoping that they will find the source of her bleeding and be able to stop it soon. Right now they are pumping her with fresh frozen plasma, blood, and platelets in an attempt to help her clot and stop bleeding. The good news though is that her heart rate, blood pressure, sats all look good. Even her gases are good, which is remarkable.
I have completely lost it, all I could do was look at my baby, swollen, sedated, and paralyzed and thinking how just yesterday she was playing and kicking and being so cheerful. Normally she would grab the tubes and mouth them, but she just layed there. Occasionally tears would come from her eyes and our hearts just broke.
Please pray for us, pray for Gracie. I'm beyond praying now, I need your prayers to be my prayers if you will.
We will keep you posted.
I have completely lost it, all I could do was look at my baby, swollen, sedated, and paralyzed and thinking how just yesterday she was playing and kicking and being so cheerful. Normally she would grab the tubes and mouth them, but she just layed there. Occasionally tears would come from her eyes and our hearts just broke.
Please pray for us, pray for Gracie. I'm beyond praying now, I need your prayers to be my prayers if you will.
We will keep you posted.
Monday, February 2, 2009
Another Update
the nurse just called---they are done, Dr. Kourteaus is done and should talk with us in 20 minutes. They've decided to leave her chest open so this doesn't happen again---whatever that means. We'll know more after talking to him.
It just helps me to post--it keeps me sane, hence the small update.
It just helps me to post--it keeps me sane, hence the small update.
Nothing goes smoothly
Can I let out a big scream and just freak out?????? We finally went back and saw Gracie at 6:30pm, as we walked back there we saw the all too familiar scene---the nurse going crazy and four or five doctors around her door. Grace's numbers looked good except for the two yellow numbers (I'm so tired I forget exactly what they measure) were higher than they wanted and they didn't know why.
Turns out while in the OR the breathing tube got pushed down into her left lung causing it to collapse. They thought that it re inflated but after taking a stat x-ray they determined that the left lung still looked funny. So the only way to find out what was happening and fix it was to take Grace back to the OR. It is now 8:30pm and she is still in there--we did get an update, they have her open, there is quite a bit of blood in her chest, they were cleaning her out and didn't find anything that was bleeding yet. The OR nurse said that she seemed to be improving---whatever that means????
I'm trying to be strong, I joke and say that nothing with Grace runs smoothly. But it just pulls at my heart to see my baby who I would lay down and die for struggle every time they take her in. Hopefully what they are doing now will help and she will sat above the low 70s like she was doing after the surgery.
Thanks again for your love and prayers.
Turns out while in the OR the breathing tube got pushed down into her left lung causing it to collapse. They thought that it re inflated but after taking a stat x-ray they determined that the left lung still looked funny. So the only way to find out what was happening and fix it was to take Grace back to the OR. It is now 8:30pm and she is still in there--we did get an update, they have her open, there is quite a bit of blood in her chest, they were cleaning her out and didn't find anything that was bleeding yet. The OR nurse said that she seemed to be improving---whatever that means????
I'm trying to be strong, I joke and say that nothing with Grace runs smoothly. But it just pulls at my heart to see my baby who I would lay down and die for struggle every time they take her in. Hopefully what they are doing now will help and she will sat above the low 70s like she was doing after the surgery.
Thanks again for your love and prayers.
Close but still not quite done
It has been 7 hours since we left our Gracie girl with the anesthesiologist and all the repairs have been made. Her tricuspid valve has been fixed and is not leaking much now, the sano has been taken down, and the Glenn has been done. We are still waiting for them to be able to close her, there is still quite a bit of bleeding that they are still trying to control and then they will attempt to close.
Though Annie has been the one giving us periodic updates, I ran into Bonnie and she said that Grace will probably stay longer than most because of how long they have had her in the OR. But ultimately it all depends on Gracie and we all know she does things in her own way and timing.
I am ready to see my baby, it has been too long!!! I'm just hoping that they will be able to stop the bleeding and close her up soon. Hopefully we will be talking to Dr. Kourtas soon and then only have to wait 45 more minutes to see her. All I know is they better hurry because I'll be more than ticked if I can't see her till after shift change.
Thank you all for your thoughts, prayers, and positive vibes, they have been felt so much and though it has been a long day, with several bumps we have felt peace and comfort. We will update again after we get to see Gracie.
Though Annie has been the one giving us periodic updates, I ran into Bonnie and she said that Grace will probably stay longer than most because of how long they have had her in the OR. But ultimately it all depends on Gracie and we all know she does things in her own way and timing.
I am ready to see my baby, it has been too long!!! I'm just hoping that they will be able to stop the bleeding and close her up soon. Hopefully we will be talking to Dr. Kourtas soon and then only have to wait 45 more minutes to see her. All I know is they better hurry because I'll be more than ticked if I can't see her till after shift change.
Thank you all for your thoughts, prayers, and positive vibes, they have been felt so much and though it has been a long day, with several bumps we have felt peace and comfort. We will update again after we get to see Gracie.
First update
After two hours we finally got an update---Gracie is doing well, but they haven't gotten far yet. It is taking quite some time opening her up, the doctors are going really slow because of all the scar tissue. We will get another update around 12pm.
Late start
It was a crazy night, between Gracie waking up and having to deal with the feeding and medicine schedule for surgery I was up every two hours and then up for good at 4am. We got here at 6am for a 7:30am surgery but were left waiting for an hour and a half until we were told that there was an emergency case before her.
I didn't mind being able to be with Gracie longer and holding her, but because she was miserable I was upset that they left us waiting without telling us anything. We will update as we get updated...it will be about 6 hours before we get to see her again. Its amazing how sad I feel knowing she is here and I'm not there with her to protect and hold her.
I didn't mind being able to be with Gracie longer and holding her, but because she was miserable I was upset that they left us waiting without telling us anything. We will update as we get updated...it will be about 6 hours before we get to see her again. Its amazing how sad I feel knowing she is here and I'm not there with her to protect and hold her.
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