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.
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