Some days I store away thoughts and cannot wait to blog about them when the house gets quiet. Other days I wish you all had telepathy and could sense what was going on in my world or at the very least, that I could have an assistant who could update this mamba jamba each evening. Details can wear a girl plum out in this situation.
But we have neither hired help or telepathy so it's on my tired shoulders to happily share all that has transpired in the last two days. Obviously last night I crashed on my pleather roll out couch way too early to keep you up. No need to be jealous of my comfy set up because I have even better things going on than scratchy sheets and pancake pillows.
Piper continues to thrive. All bp medications remain off and her stats stay within normal range albeit a little low, they have begun and raised her NG feeds as she is tolerating them well, her gancyclovier dose has been halved as her CMV levels are dropping, her redness is mellowing out, her fluid output is normal and she has begun having bowel movements again, this mornings X-ray looks better than yesterdays and her respitory therapist is pleased with how her lungs sound and best of all was the emphatic "yes, she is more than stable" I heard from the attending doctor during rounds.
Despite all the wonderful things that are happening there are bumps we still are running into. Piper was accidentally given a much larger dose of lasix overnight resulting in a magnificent display of urine output and a loss of much of her puffy, swollen self. Two good things in theory but in reality this can cause a lot of pressure and harm to her kidneys...so far her levels look fine but they will be watching them closely. Pipers blood cultures also grew positive for the bacterial infection that set all of this ICU stay off...the doctors chose to begin Piper on Vancomyacin in an attempt to get rid of it and get rid of it well. Other medications are not as strong or effective as Vancomyacin which is why it is the primary antibiotic used when a fever or infection shows itself. Unfortunately, Piper reacted very strongly to in when given it back in September even after trying again a few hours later and at a slower rate. Even knowing this the doctors still felt strongly that they needed to at least attempt another try and explained that there was a good chance she would not react this time since she is post a bone marrow transplant and her allergies would most possibly be her donors not Pipers prior ones... As we saw when she was given IVIG post transplant. And so far, 5 doses in she is handling it normally.
The best news of all is the wean then total turn off of Pipers paralytic medication this morning. Within 45 minutes she was wiggling her toes and shaking her head when I asked if she was a sweet girl. They are continuing the doses of Ativan and Fentynal to keep her fairly sedated and in no pain but this is a good, good step. By this evening she has semi opened her eyes, scratched her right arm with her left and pointed with her left finger to the nurses stethoscope and nodding "yes" when asked if she wanted to be listened to. She is still so very tired and becomes agitated when respiratory has to suction her lungs and when she needs to cough or is uncomfortable but these are all very normal things to have going on. Just having her nod or shake her head to the music I ask if she wants to hear or to watch her point to her diaper when it is dirty is beautiful.
There are still many things that Piper needs to accomplish to move off the floor but every time she is given a new challenge she does it and with the beautiful grace of God, I pray she will continue to do so.
Wednesday, March 21, 2012
Tuesday, March 20, 2012
Update 3/19/12
Piper is being so very Piper. And when I say that those of you who know her and know how she rolls, well...you are rejoicing. Because Piper fights and struggles and thrives when people say she shouldn't be able to.
She is doing better.
A little at a time.
We were warned to take each day here one at a time. And you truly have to. When your day is difficult then you weep often and pray often... When your day is softer you will laugh a little more and remember to praise while praying. It's the only way to make it...an hour after an hour and day after day. There is nothing, I repeat nothing, easy about watching your child breathe on a ventilator. Nothing makes a mother cry harder than seeing tears fall out of your sedated child's eyes and without a doubt, holding your child's hands without them holding you back can reduce one to a puddle of emotions.
But today...today was good.
Today Piper is "stabilized". She is "cresting the hill, we believe". While we are not out of the woods by any means, she has sprinted through the thicket and on towards the sparcest tree line where she (and we) can begin to hope for healing. Yesterday morning she was having bp that would swing from 165/140 down to 55/35 in less than 60 seconds. As a result of this she was on the highest setting of dopamine possible and even a small dose of epinephrine. Her oxygen was constantly dropping due to large mucus plugs clogging her ventilator and her weight had ballooned to 14.6 kilos from 10.8 when she was transported from the BMT unit to here at the PICU. She was still on an decent level of oxygen and her volume was small, down in the 30s and 40s. And to top it all off she looked sunburned and and was still having fevers every 12 hrs or so.
Today she was beautiful. I believe a lot of it is credited to the doses of Hydrocortisone she began receiving and I have mixed feelings about that that I will address after I list the ways she has turned things around. Her bp stays constantly around 105/75 and her heart rate averages 100 bpm. Her oxygen is staying at 97% despite having the ventilator turned down to 38% and her volumes have increased within the perfect parameters. She has had no oxygen stat drops and no need to be "bagged" and helped to breathe above and beyond what they are requiring her to use of the ventilator. She is tolerating her respiratory pt and while she still sounds very "junky" in her lungs she is moving saliva out with the aide of the suction straw. This mornings X-ray looked a slight bit better than yesterdays and the days before. Both the dopamine and the epinephrine have been totally turned off and as her bp has remained stable for almost 24 hours she has been able to tolerate a lasix drip to begin to wean some of this fluid off her little body and thus, the pressure off her lungs. She's been stable enough to be rotated from back to left to right sides every two hours and her stats stayed normal throughout me giving her a bath and lotioning her limbs. We have begun small range of motion physical therapy and she is currently wearing her orthopedic boots to help the muscles on her feet stay in a normal position and not aggregate foot drop any more than we need to. There is still nothing growing on the cultures from her lungs.
The preliminary results from Pipers day 7 chimerism test showed 95% my cells,1% her cells and the rest were her first donors cells. This is good. Unfortunately, she is finished with the IL2 for good and the hydrocortisone is not friendly with NK cells...though less aggressive than other higher doses of stronger steroids. Piper will have another chimerism drawn on day 14 which will be on Wednesday and my prayer is that there continue to be mostly my cells fighting away despite this hurdle. As we wait for her counts to recover, the doctors have multiple plans for each situation... Whether she has blasts still or not. They were very clear that this is not the end of her treatment but that once she is strong again and ready to keep fighting, they will be ready to fight with Piper. The goal is still a stem cell transplant and a cure she deserves.
So our prayers are steady improvement with bp and the gradual weaning off the ventilator, that the NK cells continue attaching bad cells for a while and that her recovering blood work is leukemia free. You are all our support system. We are weary but encouraged when we read the notes you leave on here or Facebook. We soak up the texts and the voicemails and emails that come our way.
Thank you for that... For praying that Piper can indeed fight again leukemia despite this attack on her sweet body.
She is doing better.
A little at a time.
We were warned to take each day here one at a time. And you truly have to. When your day is difficult then you weep often and pray often... When your day is softer you will laugh a little more and remember to praise while praying. It's the only way to make it...an hour after an hour and day after day. There is nothing, I repeat nothing, easy about watching your child breathe on a ventilator. Nothing makes a mother cry harder than seeing tears fall out of your sedated child's eyes and without a doubt, holding your child's hands without them holding you back can reduce one to a puddle of emotions.
But today...today was good.
Today Piper is "stabilized". She is "cresting the hill, we believe". While we are not out of the woods by any means, she has sprinted through the thicket and on towards the sparcest tree line where she (and we) can begin to hope for healing. Yesterday morning she was having bp that would swing from 165/140 down to 55/35 in less than 60 seconds. As a result of this she was on the highest setting of dopamine possible and even a small dose of epinephrine. Her oxygen was constantly dropping due to large mucus plugs clogging her ventilator and her weight had ballooned to 14.6 kilos from 10.8 when she was transported from the BMT unit to here at the PICU. She was still on an decent level of oxygen and her volume was small, down in the 30s and 40s. And to top it all off she looked sunburned and and was still having fevers every 12 hrs or so.
Today she was beautiful. I believe a lot of it is credited to the doses of Hydrocortisone she began receiving and I have mixed feelings about that that I will address after I list the ways she has turned things around. Her bp stays constantly around 105/75 and her heart rate averages 100 bpm. Her oxygen is staying at 97% despite having the ventilator turned down to 38% and her volumes have increased within the perfect parameters. She has had no oxygen stat drops and no need to be "bagged" and helped to breathe above and beyond what they are requiring her to use of the ventilator. She is tolerating her respiratory pt and while she still sounds very "junky" in her lungs she is moving saliva out with the aide of the suction straw. This mornings X-ray looked a slight bit better than yesterdays and the days before. Both the dopamine and the epinephrine have been totally turned off and as her bp has remained stable for almost 24 hours she has been able to tolerate a lasix drip to begin to wean some of this fluid off her little body and thus, the pressure off her lungs. She's been stable enough to be rotated from back to left to right sides every two hours and her stats stayed normal throughout me giving her a bath and lotioning her limbs. We have begun small range of motion physical therapy and she is currently wearing her orthopedic boots to help the muscles on her feet stay in a normal position and not aggregate foot drop any more than we need to. There is still nothing growing on the cultures from her lungs.
The preliminary results from Pipers day 7 chimerism test showed 95% my cells,1% her cells and the rest were her first donors cells. This is good. Unfortunately, she is finished with the IL2 for good and the hydrocortisone is not friendly with NK cells...though less aggressive than other higher doses of stronger steroids. Piper will have another chimerism drawn on day 14 which will be on Wednesday and my prayer is that there continue to be mostly my cells fighting away despite this hurdle. As we wait for her counts to recover, the doctors have multiple plans for each situation... Whether she has blasts still or not. They were very clear that this is not the end of her treatment but that once she is strong again and ready to keep fighting, they will be ready to fight with Piper. The goal is still a stem cell transplant and a cure she deserves.
So our prayers are steady improvement with bp and the gradual weaning off the ventilator, that the NK cells continue attaching bad cells for a while and that her recovering blood work is leukemia free. You are all our support system. We are weary but encouraged when we read the notes you leave on here or Facebook. We soak up the texts and the voicemails and emails that come our way.
Thank you for that... For praying that Piper can indeed fight again leukemia despite this attack on her sweet body.
Monday, March 19, 2012
A Pretty Good Day.
My little sister, Laura, organized a fund raiser for us yesterday along with the Monroe Mason's. It was a huge success and turned out far better than we could have hoped. Although we couldn't be there, we are incredibly grateful to all that came out to support us and enjoy some chicken stew. We want to say thank you to everyone that helped out and donated resources and time to this event. Many of you we have never met and some of you we haven't seen in ages, but you all worked together to support us and that means a lot to us. Thank you.
Now on to PJ. We have had a very good day. Her blood pressure has been her most critical problem the past few days and today, with the help of medication, she seems to be holding her own. She is being weened from dopamine because it has a tendency to constrict blood vessels and aggravate her pulmonary hypertension. She has started epiniphrine, which essentially does the same thing, but at a lower dose and has a lesser effect on the blood vessels. So, today we have seen her dopamine cut in half and the amount of oxygen needed from the ventilator come down about 10%.
Because her BP has been so unstable and will drop dangerously low suddenly, the ICU docs have decided to give her a few doses of hydrocortisone. This is a steroid and as many of you know steroids kill white blood cells. Steroids also kill natural killer cells. Everything we are doing right now has a positive and a negative effect to it and since our goal is to have Piper around to fight leukemia we have to take this chance with the steroids. Our hope is she will get few doses and they will have a minimal effect on the natural killer cells that are in her body to fight that leukemia we can't seem to get rid of.
She is still not labeled as stable here in the ICU, but has improved since yesterday. Her oxygen saturation is staying in the high 90's and her BP, while high from the medications, is not taking as drastic swings as it did yesterday.
We know this is all an answer to prayer and we know that our God is the one that will heal this child. Medicine has it's limits and sometimes those limits are reached sooner than we would like them to be. Piper isn't there yet, but she isn't out of the woods either and prayer and the belief that God can heal her is better than any meds she will get.
Again, thank you to all those that showed your support for us this weekend and thank you to all those that continue to pray for this sweet childs complete healing.
Chad
Sunday, March 18, 2012
Highlight of my day.
Piper fought off the paralytic medication a little earlier. Nurse Karen was fixing Pipers ART line in her left wrist and told me that Piper was jerking a little... When she was retaping her back up, Piper wrapped her fingers around Karens hand and held on. I quickly called Chad and I grabbed the other hand and we all spent about 5 or 6 minutes talking with a semi responsive Piper...it was beautiful. She nodded when we asked if she knew we loved her and was trying to form words around the tube as we sang to her...she agreed to listening to Annie tomorrow as well as watching Barbie with Linley. Her eyes fluttered against the cream they use to keep them moist and we were able to see glinpses of the sweet blue shes been forced to hid. When we told her she needed to take another nap, she shook her head. The entire time we were next to her we were able to feel her fingers grasp our own and we were able to see her body attempt to participate...the girl still has her vim and vinegar.
I'm thrilled to have had this with Piper. The decision to sedate and vent Piper was made so quickly I didn't have a chance to tell her what was going on and I could never have had enough time to feel her respond to my touch. Having this episode, while never the normal and surely not the most safe thing, made me cry anew. We were able to explain that she was getting sleepy medicine, that mommy and daddy were always next to her and that we all missed her dearly. And she was able to show us that she heard our love and that we are still her comfort.
As it should be.
Nothing made my day any better. And despite the continual bad news we receive this moment was given to us. I continue to pray for more moments...for a life together and more chances to squeeze hands and verbalize the fact that we all love each other so very much.
Her paralytic medication has been bumped up, we can't have Piper fighting off the ventilator. But while they can keep her from telling me she loves me no one will be able to keep me from telling her I love her...or take those beautiful moments away.
I praise God for this and I praise God for the one nurse we have had in 5 days here in the ICU who was able to simply say "this is good for you all" and walked put of the room and allowed us this time. Thank you Lord and Karen.
I'm thrilled to have had this with Piper. The decision to sedate and vent Piper was made so quickly I didn't have a chance to tell her what was going on and I could never have had enough time to feel her respond to my touch. Having this episode, while never the normal and surely not the most safe thing, made me cry anew. We were able to explain that she was getting sleepy medicine, that mommy and daddy were always next to her and that we all missed her dearly. And she was able to show us that she heard our love and that we are still her comfort.
As it should be.
Nothing made my day any better. And despite the continual bad news we receive this moment was given to us. I continue to pray for more moments...for a life together and more chances to squeeze hands and verbalize the fact that we all love each other so very much.
Her paralytic medication has been bumped up, we can't have Piper fighting off the ventilator. But while they can keep her from telling me she loves me no one will be able to keep me from telling her I love her...or take those beautiful moments away.
I praise God for this and I praise God for the one nurse we have had in 5 days here in the ICU who was able to simply say "this is good for you all" and walked put of the room and allowed us this time. Thank you Lord and Karen.
Friday, March 16, 2012
Update 3/17/12
Today is St. Patricks day... A fun holiday that once again, like so many others in the last 2 years, gets forgotten about until the day of. When mommy forgets about holidays there are no color appropriate shirts to wear or sneaky leprechauns or elves to leave footprints for my girls. Dinner will not be special and there will be no creative crafts and pictures to document the days festivities.
I get so weary of not only being limited in what we can do for Piper but also for what cancer steals from the entire family...especially the siblings who are drug along this horrible rocky path. It stinks and that doesn't even touch how much. I miss a normal life and even so, I scarcely remember living a life without worry hanging over our heads. I just miss being a mom and I miss my girls...so much. Oh so much.
Piper continues to keep everyone here on their toes. Nothing is staying stable for long. Her bp fluctuates, her heart rate often drop requiring the medical staff to bag her and provide her oxygen that way. They are talking about pulmonary hypertension and her CMV levels in her bloodwork have jumped to 6000, leading them to think that that may be the cause of the infection within her lungs. Whatever the infection within her lungs is, it is spreading and making it more and more hard to breathe. I don't even know what to worry about the most because I am so overwhelmed with just how sick Piper is... Having her ventilated only means she looks so sick and that I am missing out on her hearing her sweet voice and granting her bossy little requests.
I was told yesterday that Pipers chimerism of her DNA was showing primarily my cells. In normal circumstances this would be a source of excitement...at this point even the bmt doctors can't rally up enthusiasm because of how much Piper will have to overcome to even attempt a transplant. We are the lowest we have ever been and this is obvious. Every visit with her team and the ICU doctors leaves me feeling more defeated and they have moved her from "stable" to " unstable".
Rarely since Pipers young diagnosis have I asked "why", knowing that I will
never know the answer this side of eternity. Instead of wondering why this much pain has been heaped upon us, I focused on just being. Being contented with sharing a bed with the whole family and any times spent together. Being contented with taking each day at a time and appreciating each little moment I was able to give to Piper and even more, each little moment that she gave me. Contentment was the only way to survive and now I have such a sick little girl that I ache to make well.
I'm sobbing "why" with every breathe I struggle to take. I have no reserve apart from clinging to God in a way only the desperate do. My soul cannot fathom choosing to turn on Him as He is the reason I have survived this far. Praying is constant...it's my every breath and it's soothing. I know full well that God is capable of healing Pipers weary and sick little body but I also recognize that there is suffering on this earth and His will can just as easily be done when it hurts as when it feels good. I ache to never know this.
"I pray because I can't help myself. I pray because I'm helpless. I pray because the need flows out of me all the time- waking and sleeping. It doesn't change God- it changes me.”
― C.S. Lewis
Update 3/15/12
The human body is such an amazingly well oiled machine. The balance that sustains life is beautiful in its intricacy, I am seeing this. I have a new appreciation for the details that go into our very ability to breathe, thrive and grow, despite the beatings that our physical self may sustain and an even greater praise for the One who creates something so close to perfection.
Especially if this body is a two year old who has been receiving daily and weekly and monthly abuse in an attempt to keep alive and alive so well.
Especially if you are Piper.
She is beautiful... Already a miracle because she has thrived when many said she would never make it to her first birthday. When leukemia has invaded her 25 lb body not once, not twice but three times. When despite having lungs much more sick than she ever let on, she smiled and played and requested our hands in hers while soothing herself to sleep.
Today has brought a good weaning of the oxygen and pressures both which in turn showed her to be stable enough to have the pulmonary doctors get a sample of the fluids found in her lungs. They have found her to be very sensitive to the dopamine which helps control her BP so they are constantly required to manipulate the dosing as her pressure will dip quickly and then rise. Pipers daily lung and chest X-ray showed about the same amount of fluid on her lungs which is actually good (ish) since she had been steadily accumulating. Her Tylenol has been changed from every 4 hours to as needed in an effort to see what the trend is...so far she has done well since her 6:30 pm dose. This evening has been busy with changing oxygen levels and blood pressures as Piper adapts to each new addition of fluids her body requires...again, this intricate dance to maintain her sweet life. Each nurse, doctor and medical staff that walks into her room is attached although any of you previous medical care personnel know this to be impossible to fight...my girl is magnetic.
At this point, most absolutely the most heart wrenching of any season I have been blessed to have with my girl, we are stuck in the crossroads of worry and hope. Will Piper once again amaze the doctors with her resiliency or will the body that holds the sweetest two year old I know simple cease to work together? There is no way of knowing and this land of limbo causes a restlessness that I hate vehemently. In each other instance of bad news and Piper, we have always been able to look over at her little self and be encouraged that she was there... There and strong and smiling and keeping us pushing for her cure. This time she is sick; she cannot request a backscratch or me singing "you are my sunshine" or taking a walk while holding her daddies hands or leaning into Linley while watching yet another Barbie movie.
What she can do is get her heart rate up when I stroke her arm or shoot her blood pressure up when they move her too much and she clearly would prefer to be left alone. And while she smells of saline and betadine and medication, she still feels like my Piper when I kiss her nose or nuzzle her ear.
She is here still and I praise only God for this act of mercy He has handed us.
But oh, I miss her so much. I cling to the promise of God that He never leaves me or forsakes me and most absolutely He is even more close to Piper as she rests and hopefully gains the strength necessary to fight the next battle. And its only after His timeless commitment to me and mine that I hear and cling to the doctors who are encouraged with Pipers progress today.
Especially if this body is a two year old who has been receiving daily and weekly and monthly abuse in an attempt to keep alive and alive so well.
Especially if you are Piper.
She is beautiful... Already a miracle because she has thrived when many said she would never make it to her first birthday. When leukemia has invaded her 25 lb body not once, not twice but three times. When despite having lungs much more sick than she ever let on, she smiled and played and requested our hands in hers while soothing herself to sleep.
Today has brought a good weaning of the oxygen and pressures both which in turn showed her to be stable enough to have the pulmonary doctors get a sample of the fluids found in her lungs. They have found her to be very sensitive to the dopamine which helps control her BP so they are constantly required to manipulate the dosing as her pressure will dip quickly and then rise. Pipers daily lung and chest X-ray showed about the same amount of fluid on her lungs which is actually good (ish) since she had been steadily accumulating. Her Tylenol has been changed from every 4 hours to as needed in an effort to see what the trend is...so far she has done well since her 6:30 pm dose. This evening has been busy with changing oxygen levels and blood pressures as Piper adapts to each new addition of fluids her body requires...again, this intricate dance to maintain her sweet life. Each nurse, doctor and medical staff that walks into her room is attached although any of you previous medical care personnel know this to be impossible to fight...my girl is magnetic.
At this point, most absolutely the most heart wrenching of any season I have been blessed to have with my girl, we are stuck in the crossroads of worry and hope. Will Piper once again amaze the doctors with her resiliency or will the body that holds the sweetest two year old I know simple cease to work together? There is no way of knowing and this land of limbo causes a restlessness that I hate vehemently. In each other instance of bad news and Piper, we have always been able to look over at her little self and be encouraged that she was there... There and strong and smiling and keeping us pushing for her cure. This time she is sick; she cannot request a backscratch or me singing "you are my sunshine" or taking a walk while holding her daddies hands or leaning into Linley while watching yet another Barbie movie.
What she can do is get her heart rate up when I stroke her arm or shoot her blood pressure up when they move her too much and she clearly would prefer to be left alone. And while she smells of saline and betadine and medication, she still feels like my Piper when I kiss her nose or nuzzle her ear.
She is here still and I praise only God for this act of mercy He has handed us.
But oh, I miss her so much. I cling to the promise of God that He never leaves me or forsakes me and most absolutely He is even more close to Piper as she rests and hopefully gains the strength necessary to fight the next battle. And its only after His timeless commitment to me and mine that I hear and cling to the doctors who are encouraged with Pipers progress today.
Wednesday, March 14, 2012
Update 3/14/12
Long story short.
Pipers lungs are very sick. After being on the heavy duty nasal cannula for less than 24 hours, most of those being a very sleepless and fitful night of fighting to breath, the decision was made to intubate her. While this was a horrible thing to hear when waking up first thing this morning, it paled in comparison to seeing Pipers oxygen drop when she pulled the nasal cannula out and she struggled to breathe while turning purple. Nothing can compare and yet, 30 minutes later when Pipers nasal cannula was removed and the tube placed down her throat my very being sobbed as she struggled to breathe. It took a team of 2 doctors, 2 nurses, a nurse practitioner and 2 respiratory therapist to work together for 20 minutes to bring her back to normal...albeit with total dependence on the ventilator. They put a catheter in to allow them to accurately watch her fluid intake and outtake as her blood pressure fluctuates often. There was also an arterial line placed in her wrist to get better readings for the blood gases and a continual blood pressure. TPN continues, an NG tube was placed to for medications, she is receiving fentanyl and versed to ease the pain and keep her sedated and vec as a paralytic.
Since Piper was placed on the ventilator this morning she has been weaned from 100% oxygen to 55% and her pressures have stabilized as well. Small steps but at least they are going in the right direction. Her BMT doctors seem to feel that there is an infection somewhere on her lungs but she is not yet strong enough to pause the vent and send a syringe down for a sample. Instead they are putting her on a fungal medication and a viral medication in addition to the many other types used proactively already. The hope is to have her more stabilized by tomorrow and they can attempt a culture and have some definitive results for a precise medication to treat it. Her IL2 shot was put off today and they said they will take each day and see if and when she is able to continue.
While leukemia is a very real fear, at this point this situation is more frightening. The doctors were very clear that this is a life threatening issue but feel that if we can get a hold on what we are dealing with, they are optimistic that she will pull through. I pray so.
I still cannot believe that we are here. I already miss her little smiles and the none stop request to have her back scratched. Seeing her lying so still and helpless moves me to tears and yet, I have loved holding her sweet hand and seeing her heart rate lift at the sound of my whispers. That she declined so quickly and so seriously shows us the gravity of the situation and fully stressed the fact that her body is weak and is struggling to survive.
Please pray for Piper, I cannot stress how serious this is.
Pipers lungs are very sick. After being on the heavy duty nasal cannula for less than 24 hours, most of those being a very sleepless and fitful night of fighting to breath, the decision was made to intubate her. While this was a horrible thing to hear when waking up first thing this morning, it paled in comparison to seeing Pipers oxygen drop when she pulled the nasal cannula out and she struggled to breathe while turning purple. Nothing can compare and yet, 30 minutes later when Pipers nasal cannula was removed and the tube placed down her throat my very being sobbed as she struggled to breathe. It took a team of 2 doctors, 2 nurses, a nurse practitioner and 2 respiratory therapist to work together for 20 minutes to bring her back to normal...albeit with total dependence on the ventilator. They put a catheter in to allow them to accurately watch her fluid intake and outtake as her blood pressure fluctuates often. There was also an arterial line placed in her wrist to get better readings for the blood gases and a continual blood pressure. TPN continues, an NG tube was placed to for medications, she is receiving fentanyl and versed to ease the pain and keep her sedated and vec as a paralytic.
Since Piper was placed on the ventilator this morning she has been weaned from 100% oxygen to 55% and her pressures have stabilized as well. Small steps but at least they are going in the right direction. Her BMT doctors seem to feel that there is an infection somewhere on her lungs but she is not yet strong enough to pause the vent and send a syringe down for a sample. Instead they are putting her on a fungal medication and a viral medication in addition to the many other types used proactively already. The hope is to have her more stabilized by tomorrow and they can attempt a culture and have some definitive results for a precise medication to treat it. Her IL2 shot was put off today and they said they will take each day and see if and when she is able to continue.
While leukemia is a very real fear, at this point this situation is more frightening. The doctors were very clear that this is a life threatening issue but feel that if we can get a hold on what we are dealing with, they are optimistic that she will pull through. I pray so.
I still cannot believe that we are here. I already miss her little smiles and the none stop request to have her back scratched. Seeing her lying so still and helpless moves me to tears and yet, I have loved holding her sweet hand and seeing her heart rate lift at the sound of my whispers. That she declined so quickly and so seriously shows us the gravity of the situation and fully stressed the fact that her body is weak and is struggling to survive.
Please pray for Piper, I cannot stress how serious this is.
Subscribe to:
Posts (Atom)