The weather is getting warmer here and all this equipment.... two ventilators, two oxygen concentrators, one humidifer..... is creating some serious heat. The electric bill is going to go right back up to what it was when Mike was here. Small price to pay..... just things to make note of. I should have put the air conditioning on way before I did and Mackenzie paid a price for my mistake.
She was having trouble breathing and broke out in a clammy sweat and wheezing and a lot more effort to breathe. I gave her 2 breathing treatments and it wasn't making enough of a difference. I put a fan on her and called the pulmonologist on call and was advised to go to the ED. It was the very last thing I wanted for her, but she is so new to all of this that I took the advise. It meant having to call my brother to come stay with Taylor with no notice.
Kenzie was given 6 consecutive breathing treatments but with a different kind of medicine. Still bronchial dialators but Albuterol and Atrovent. It isn't advised to do that at the house due to cardiac risks. Kenzie responded beautifully but they still wanted to admit her. She was admitted under pulmonary service but in critical care.
Once again, ED was great, but as soon as we got up to the floor.... everything that I tried to prevent as common problems just couldn't be prevented without me guarding her for every second. Once again I am repeating myself..... don't drown her, don't pull her over by just her arm, don't give all of that all at once.....
Even the things that I was able to get written in as physician's orders were being ignored. I knew that they wouldn't get her brand of formula up to the floor until the morning so I asked the doctor to write for just Pediasure because I knew they always had that in stock on the floor. Once we were up on the floor I told them she needed to get her feeds started because she had been without fluids of any kind for over 4 hours. That's 400 ml.... you can't make that up in a day without giving her too much unless it's IV. They tried saying that she has two orders in there and they don't have it on the floor. I had to turn on the bitch mode and insist that they go get the Pediasure and start her feeds.... now. That didn't go over well, of course, but given the last admit when I was nice and apologetic for days thinking that that's what Mike would want me to do and seeing how horrible it all turned out... I went back to being Ann not the new and improved Ann, the Ann that gets shit done.
If you read a previous post I think I wrote that her sodium chloride (for hyponatremia) (not enough salt) needed to be diluted down in her feed bag because giving her the full 30ml all at once in her j-tube made her gag and wretch something horrible. Knowing this, I had the doctor write an order to add it to the food bag. I was relieved to have that issue resolved until I woke up at 8:15 having fallen asleep sitting up at 6am to see the nurse starting to give it to her... in her j-tube.... right after giving her over 30ml total volume of other meds that she couldn't remember what they were. One of them was her Methadone. She is still being slowly weaned from that narcotic. This nurse MIXED her Methadone in with all her other medication in one syringe!! No on in their right mind would mix a narcotic like that. I raised my voice telling her what bad nursing judgement that was and why. She didn't care. She didn't care one bit. She even argued with me about giving the sodium chloride into her j-tube.... "Mom, we give it this way all the time".... GRRRRRR
I slept for maybe 2 hours, was awake for maybe 30 minutes and caught 4 mistakes!
These aren't issues that are specific to Mackenzie, these are general protocols that this nurse and many others choose to ignore, because they can. Because these kids are already in critical care and if something were to go wrong...... well..... sometimes these things just happen.
Luckily, the pulmonary team was the same one to discharge Mackenzie just a couple weeks earlier.They all agreed that Mackenzie was well enough to go home. We went home with refills on medication (it's challenging to get that done without being "seen"), a protocol on what I can do for her if she has another asthma attack, and a repeat xray to see how much her lungs have already improved.
I have been working so hard at keeping her healthy and home. Taylor too. Taylor was still on antibiotic during all of this and needing more attention. I'm beginning to wonder if this "more attention" is just going to be our new normal. I wonder if I can keep doing all these hours myself? Right before Kenzie got sick, I had fired one nurse and another quit unexpectedly. I am doing their shifts along with the required "Mom" hours (8 hours a day gratis due to the State needing me to take responsibility for my own child even though she isn't a minor anymore). I requested that the nursing hours be granted for 20 hours a day since that is what we used to have for Taylor until they changed waivers and reduced it with no appeal since it was a new waiver. They approved 18 hours a day, which is only 2 more. And I need to hire another nurse. That is going to be so difficult. I'd rather just provide the care myself right now. I think it's the only way that I can keep them out of the hospital is being more direct care.
But I'm tired. I get dizzy easy. My legs buckle underneath me at weird times. Anytime I sit down, I fall asleep. The stress of all of this is getting to me and I haven't figured out a way to make it better yet. I'm working on it.
Along with all this stress, I'm also feeling a lot of guilt. I feel guilt because I know that if Mike were still alive that there is no way I could do all of this by myself. When he was alive, I literally begged anyone... family, friends, his trust.... anyone for help and received nothing. Mike would have felt more guilt than I do now if he were alive and knew that he was the reason I couldn't be with my kids in the hospital. Kenzie would have likely died without me there. I miss him horribly, especially with all this going on.... and yet, I am relieved that he isn't here for me to have to care for. .... talk about feeling like shit.
Thursday, March 30, 2017
Thursday, March 23, 2017
"Everyone is doing their best" their best at times was pitiful
Being the only parent around for your kids has it's pluses and minuses. One minus is that when you are a mother with your child in critical care, eventually you will be outnumbered. There will come a time when so many mistakes have been made and even though you have tried to correct them as they occur with a smile on your face, eventually, you will be labeled and you will be messed with. This would not happen if I had a husband standing beside me, I can assure you.
Being a nurse and yet not in charge of anything including your very own child is beyond frustrating. Knowing when procedure is broken, mistakes are made, mistakes are covered up, lies are being told and yet there isn't one damn thing you can do about it is as much a hardship as worrying about your child. Not having Mike to talk to is still so difficult. He lived it too, not just because he literally lived with us, but because his life depended on the medical staff too. That kind of understanding is hard to find. It's something that we could always take comfort in each other with knowing we both know.
Here we are in a major medical hospital, one that is awarded for it's safety as they are quick to tell you, and yet so many mistakes.... some minor, some major.......... but it doesn't matter. The phrase that I heard with Mike and his Harvard cohorts is "we take care of our own".... that's an ICU staff in a nutshell. They will even have it so turned around that you will feel guilty for speaking against them, afterall..... they are saving lives. There are other sick kids in the hospital, not just yours...... speak up anyway.
There is a patient advocate available to you, but they don't report to anyone outside of the hospital. If you try going outside of the hospital for a resolution, you need to wait until your child has been discharged.... just trust me on that one.
I list just some of them for you here:
- I always slept in a recliner by her bed so that they would have to move me to do anything with her. So knowing that nothing was done to her, remarkably their charting still reflected Medicaid rules.
- When nitric oxide was trialed in an effort to keep her body oxygenated, I was told that it was too expensive to continue and they wouldn't be wasting resources.
- In order to feed her it was necessary to put the food and meds into her intestine instead of her stomach. The tube became clogged and they couldn't use it. They wouldn't do anything about it because it was "the weekend" and they would have to call the Intervention Radiologist oncall. They refused and kept her on IV fluids instead.
- while getting nutrition in her intestines (the hole is made in the stomach but they pass a tube through the stomach into the intestines), they started at just 10ml per hour increasing by 10 every 4 hours. She made it up to 40 when I noticed the nurse preparing to give her her medication. They had switched from IV meds to "oral" meds after seeing that she was tolerating her feeds. However, the total volume of all the meds the nurse was giving was 120ml. The nurse gave 120ml into her intestine within a 2 minute time frame at most. She could not understand why this angered me. I kept hearing from the nurse and her supervisor "she needs her meds, Mom". No one except the dietician could understand my complaint of bolusing a volume greater than she was received over an hour all within 2 minutes. Consequently, Mackenzie was gagging and coughing .... they refused to see the connection.
- when attempting to give her food into her stomach instead of straight to her intestines, the nurse started the food going into her stomach and wanted to leave the tube for her intestines open to drain. When I complained I heard "we need to keep her intestines open to release the gas, Mom. You wouldn't want her gagging and throwing up". Once again, nurse and supervisor failed to see that opening up the intestines which are BELOW the stomach would essentially be getting rid of all the food they are putting in.
- while changing her adult diaper for stool they like to just throw the dirty diaper on the floor instead of using a trash can. This can lead to all kinds of problems, but this one time it was on the floor when her ventilator tubing fell to the ground. The nurse picked up the tubing and turned to me and asked "what do you want me to do, Mom?". I had been talking to Mackenzie's physical therapist at the time and caught off guard I said "she needs to breathe". In my mind that meant don't just stand there, get the ambu bag and breathe for her. Instead, she reconnected the ventilator tubing that had just fallen to the ground right next to the diaper full of shit
Being a nurse and yet not in charge of anything including your very own child is beyond frustrating. Knowing when procedure is broken, mistakes are made, mistakes are covered up, lies are being told and yet there isn't one damn thing you can do about it is as much a hardship as worrying about your child. Not having Mike to talk to is still so difficult. He lived it too, not just because he literally lived with us, but because his life depended on the medical staff too. That kind of understanding is hard to find. It's something that we could always take comfort in each other with knowing we both know.
Here we are in a major medical hospital, one that is awarded for it's safety as they are quick to tell you, and yet so many mistakes.... some minor, some major.......... but it doesn't matter. The phrase that I heard with Mike and his Harvard cohorts is "we take care of our own".... that's an ICU staff in a nutshell. They will even have it so turned around that you will feel guilty for speaking against them, afterall..... they are saving lives. There are other sick kids in the hospital, not just yours...... speak up anyway.
There is a patient advocate available to you, but they don't report to anyone outside of the hospital. If you try going outside of the hospital for a resolution, you need to wait until your child has been discharged.... just trust me on that one.
I list just some of them for you here:
- I always slept in a recliner by her bed so that they would have to move me to do anything with her. So knowing that nothing was done to her, remarkably their charting still reflected Medicaid rules.
- When nitric oxide was trialed in an effort to keep her body oxygenated, I was told that it was too expensive to continue and they wouldn't be wasting resources.
- In order to feed her it was necessary to put the food and meds into her intestine instead of her stomach. The tube became clogged and they couldn't use it. They wouldn't do anything about it because it was "the weekend" and they would have to call the Intervention Radiologist oncall. They refused and kept her on IV fluids instead.
- while getting nutrition in her intestines (the hole is made in the stomach but they pass a tube through the stomach into the intestines), they started at just 10ml per hour increasing by 10 every 4 hours. She made it up to 40 when I noticed the nurse preparing to give her her medication. They had switched from IV meds to "oral" meds after seeing that she was tolerating her feeds. However, the total volume of all the meds the nurse was giving was 120ml. The nurse gave 120ml into her intestine within a 2 minute time frame at most. She could not understand why this angered me. I kept hearing from the nurse and her supervisor "she needs her meds, Mom". No one except the dietician could understand my complaint of bolusing a volume greater than she was received over an hour all within 2 minutes. Consequently, Mackenzie was gagging and coughing .... they refused to see the connection.
- when attempting to give her food into her stomach instead of straight to her intestines, the nurse started the food going into her stomach and wanted to leave the tube for her intestines open to drain. When I complained I heard "we need to keep her intestines open to release the gas, Mom. You wouldn't want her gagging and throwing up". Once again, nurse and supervisor failed to see that opening up the intestines which are BELOW the stomach would essentially be getting rid of all the food they are putting in.
- while changing her adult diaper for stool they like to just throw the dirty diaper on the floor instead of using a trash can. This can lead to all kinds of problems, but this one time it was on the floor when her ventilator tubing fell to the ground. The nurse picked up the tubing and turned to me and asked "what do you want me to do, Mom?". I had been talking to Mackenzie's physical therapist at the time and caught off guard I said "she needs to breathe". In my mind that meant don't just stand there, get the ambu bag and breathe for her. Instead, she reconnected the ventilator tubing that had just fallen to the ground right next to the diaper full of shit
-housekeeping bumped her
nitric oxide tank and it alarms. The nurse in the room pages rt then
leaves the room. She continues to alarm and desat with no one in the
room but me. The interface display shows the nitric oxide is not getting
to her. 12 minutes pass before anyone comes in the room. The RT assumes
it's a superficial alarm until I tell him that she's now sating at 75
and the nitric oxide isn't getting to her. He fixes the connection and
gives her 100% oxygen. The nurse never did come back into the room.
-
Kenzie's midline was red. My sister was here with her during the night
and alerted the nurse. The nurse said it flushed fine (as a midline
likely would) and used it to give her 4am Vanco. I arrived at 0830 and
after seeing her red streaked armed and asking her nurse to have it
looked at is when I hear of the night events. Her access was pulled and
treated for thromboflubitis (sp?). The nurse who dosed the vanco did
not report off of the redness. 3 days later it's still ropey and red.
-
the nurse removed her silver impregnated foam dressing from her cvl
infected site to apply the clindamycin instead of applying it to the
staph on her cheek.
- her blood pressure cuff is
never removed or rotated. I have been taking it off for skin integrity
but a nurse hasn't for days.
- she had an EEG, the
next day I felt a hard lead still attached to the back of her head. I
removed it an mentioned the redness to the nurse.
-the
nurses had offered to get me a parent tray, the food trays pass by me,
but Nuanna at the desk has literally chased me down the hallway twice
now to tell me that the covered container of pudding from the cafeteria
is not allowed.
- while on a cpap trial, she went
down to 85% and was alarming. No one responded for 15 minutes. The
nurses response was to change the parameter so it wouldn't alarm. I
asked her not to during a cpap trial her response was "doesn't matter to
me, your the one going to have to hear it." She changed it anyway after
I fell asleep.
-
3 hours spent arguing with Eddie as ANP regarding bipap resulting in my
requesting blood gas since we were at an impasse. Her ph was 7.22 she
went back on bipap.
- when Dr. Karsies counseled me
on ECMO, my parents drove 10 hours to try to see her thinking she
wouldn't live. They were denied coming up due to the flu restricted
visitor list (That's also much longer story). It was resolved by a nurse
allowing them only to be written up for it.
- moved to H02B to continue monitoring for ECMO. First few days all care was excellent.
-
the visitor list continued to be a problem and things were exaggerated
and I contacted the patient advocate for help. For 2 days nurses and
supervisors were not allowing our Pastor to visit.
-
she was eventually not monitored as closely resulting in preventable
problems. Such as an unmonitored temp resulting in my confrontation with
the charge nurse. Kenzie's temp was inaccurately being measured and
when I corrected their method she was 102.2 not 100.2. Big difference
considering I was also complaining of redness at the cvl site.
- it took 3 days of elevated temps and my complaints until the cvl was pulled after an ID consult.
-
Picu attending denying an infection until my picture of the puss at the
insertion site. I don't believe the ID doctors would order Vanco for a
superficial skin infection.
- staph infection on
her face was also something I spent days trying to get addressed by the
nurse until I asked during rounds if we could switch to clindamycin
since it was getting worse. ID physicians felt it was connected to the
cvl infection.
-any complaints I am making are
resulting in retaliation. When I complained of the temp method, the
charge nurse instead complained about my not wearing a gown even though
she was droplet and not contact precautions. She was not friendly.
-
after taking over a week to get the visitation list modified, the
charge nurse not only refused to make the changes, she slapped my list
down on doc station in the room and sternly said "we're not doing this.
Someone will be in to talk to you". My friend was currently waiting to
come up, she went home.
- cpap sprints were
ordered as 3 a day, in 24 hours she received none. Her breathing
treatments were every 6 hours, they were consistently given up to 2
hours late. When her xray showed worse, I made a complaint. Mackenzie's
care did not improve from my complaint. But the diffuser that I had been
using for 4 days after being encouraged to bring it in from her nurse
and rt last Saturday, became their focus and they told me the RT
complained that it was making her asthma worse. Instead of reassigning
her I was told we couldn't use the diffuser. If lavender was irritating
her asthma, I find it difficult to believe that she can do her job here
with all the disinfectant that irritates me.
-Dr.
Fitch wanted Kenzie up in her wheelchair. PT was consulted and kenzie
was improving with her tidal volumes. Today, Dr. Estrada doesn't want
her in her chair because you don't put an intubated patient in a
wheelchair.
- Dr. Fitch said if Kenzie continues
on this trajectory she could be evaluated for being extubated. Dr.
Estrada told me that she is weeks away from being extubated and that she
needs a trach tube. That if she were in an adult hospital they would
have already done it.
- then there are countless
episodes of the nurses literally drowning Kenz because they neglect to
drain her circuit before moving her. This results in not only immediate
distress, but it sets her lungs back needing a higher fi02.
-then
there are countless episodes of the nurses repositioning Kenz without
untying her vent circuit from the bed rail resulting in the ET tube
being displaced.
-then there is the autonomy of
the nurses with regard to peri area care resulting in a horribly
involved yeast infection resulting in a wound care consult only to have
those orders also ignored resulting in another consult.
-then
there are some nurses documenting things that they are not doing, such
as position changes and diaper changes. I know of the false documenting
because the charge nurse tells me what they write.
-the
autonomy given to the RT has me witnessing them providing treatments
without listening to her lungs at all, let alone before or after. And no
suctioning even being attempted because they are told during report
that she hasn't had anything out of her ET tube.
-an
RT told my sister (she stayed awake all night so I could go home) that
it is because of me that she isn't getting anything out of her lungs
because I won't let them use a Yanker (bite reflex) and that I am
suctioning her all wrong. (Hard to believe I've kept Taylor alive for 8
years if I were so incompetent).
-being told "it's
too expensive to continue" and "we can't do that on the weekend" or "I
dont care, Mom. How do you want to do it" are other statements that
don't belong in any PICU, in my opinion.
- RT comes in the room to switch her cpap sprint over to
support. It was 5:15. I asked when it was started and she answered
11:55. When I said it was 20 minutes late she said it was only 10. It
took almost 10 minutes to explain to her why it would be 20 minutes late
with me pointing to the clock and counting by 5. Considering math is an
important component of her job, I didn't feel confident in her skills.
-
an RT was standing bedside checking the vent. I told her I could hear
an air leak and I thought it was coming from the MDI adapter. She
insisted it was from her mouth since "that's where air leaks". Before I
could stop her, she was putting air in her cuff. I could still hear the
air leak she went to put more air in but I was able to stop her. The MDI
adapter was open. I told her that risking the integrity of her trach
(ischemic pressure) by increase the cuff pressure instead of recognizing
the difference in sound was the wrong decision that she almost made
twice. (There is a distinct difference in sound between oral cavity and
circuit)
- rt was bedside while mackenzie was
coughing multiple times. Even with me and the nurse asking her to
suctioning her airway she didn't. The nurse went over and did it herself
while explaining to the RT that it is best to assist pulmonary
clearance while kenzie is already coughing.
-
while waiting in the hallway to speak to the charge nurse about the
assignment of her night nurse (complaints from the night before I've
already mentioned) I heard an alarm. I went in to see the nurse who had
been wiping her butt, now suctioning her airway. When she saw me she
started saying how much she was getting out of her and how "good" that
was. You could clearly see that it was all the water that she had just
dumped in her. Shortly after, Kenzie started running a temp again. I
suspect that this is a strong suspect for an etiology. If not, it's
still pretty gross.
-
infectious disease wanted to test quantitative for flu by nose and et.
Kenzie coughed and for the first time we had a decent specimen. I asked
the nurse to see if they wanted to run cultures off of it too. She told
me that they wouldn't run cultures on it because it wasn't sterile. It
was sterile.... I asked them to change the Ballard first. She also said
they would have to go deeper for a culture. This isn't my
understanding.
- nurse Stephanie
came in the room at 835 for the first time her shift. Mackenzie had
been coughing and I was clearing her airway as t nurse walked in. An
appropriate response would have been ... here let me do that for you
followed by a reminder of how I shouldn't have to or offering to get the
respiratory therapist. She did neither. Instead she attacked me
verbally by saying she is documenting every time she sees me suctioning
her. She went on to say that everyone is talking negatively about me out
there, she isn't the only one who had a problem with me. She argued,
she raised her voice, she tried to bully me argued and threaten me, and
when I spoke to the charge nurse there was absolutely no apology given.
It is appalling that she is being allowed to speak to me that way. Also,
she was in the room only to give meds after that. She spent at most 30
minutes cumulative in the room on a 12 hour shift.
-
right at shift change it was decided to move kenzie to a different
room. Because everyone wanted to be somewhere else, Kenzie's coughing
spells were ignored and her sats hung around 89 -91 for the next dew
hours even though she had been above 96.
- due to
the set up of this new room, the parent area is to the right of
mackenzie. Mackenzie is not able to turn her head to the right and I
cannot see her face. Given that she is non verbal and unable to express
herself, seeing her face is essential. It also means her vent circuit
has been laying across her body. I spoke to the charge nurse of these
concerns and was told that we could not be accommodated. I've been told
today by Karla that we can be moved, it's been almost 24 hours in this
room and we are still here
Imagine being all alone for 52 days having had all this happen and being completely ignored and bullied and retaliated against. That's what it was like. All of this bullshit on top of being scared out of my mind that my daughter might die.
Wednesday, March 15, 2017
Days to follow
It would be hard to remember everything exactly over a period of 52 days. I remember events clearly, I just don't always recall their order.
Once Kenzie was back on the bipap after her blood gas showed that she was in respiratory acidosis, I was still not in fear for her life. We had done this before where she just needs some support for her lungs while waiting on the virus to run its course. But I guess after having done it before a number of times, it made this time harder for her. They had tried a few things to help improve her oxygenation such as a mag drip and some continuous bronchial dialators but she wasn't improving. They told me that they would give her a couple more hours to respond but that they would likely need to intubate her. This is something that we've been through before too, so again, I wasn't in fear for her life. I mean, I knew it was possible because of the severity, but I didn't feel it could happen. Because I wasn't fearing her death, I didn't feel like Adam should make the drive all the way from South Carolina. I knew he would want to be with her, but I also thought that he should keep working and trust that I would let him know if he needed to come home. He was able to video chat with her before she was intubated, but she was not responding to anything like normal.
I think it was the following day when I started to suspect that this time was different. I called Adam back and told him that I though he should come up. I had already called her Dad. Even though Jason (Dad) isn't a part of our lives on a day to day basis, he is usually willing to come to the hospital. He mostly comes only when I need to leave, but this time he came just to see her.
They called the anesthesiologist up to do the tube insertion. They feared that her severe scoliosis would make it difficult to place the tube. The anesthesiologist are the ones who you call for scary placements. They were able to place her ET (endotracheal tube) without difficulty, thank goodness. They let me stay with her for this procedure, that was helpful for me. I know too that they are more willing to let me stay if I can demonstrate to them that I won't be an issue they need to deal with by either passing out, crying hysterically or asking a lot of questions. Parents of special needs kids tend to learn that lesson early.
Now that the tube had been placed they were able to get better volumes in her lungs but her body wasn't able to oxygenate very well. She was on high bipap settings and about 60% oxygen just trying to keep her body oxygenated in the 90s. Adam made it up, he and his girlfriend drove straight through the night after work, it's an 11 hour drive for them. He made it just in time. Kenzie was having more and more trouble and her body was failing. It's never a good thing to see the attending physician just hanging around the doorway. This attending physician is someone we knew from previous hospital stays while he was still in his residency. He told me that he was "running out of his bag of tricks". When I heard that statement that was the first time I have ever thought that she would likely die. I am just so glad that Adam was there. Even though I am his mother and he was worried for his sister, I took comfort with having him there.
They had an idea to turn her over onto her stomach. I didn't know this was a thing they tried sometimes and Mackenzie would never normally tolerate being on her stomach, but they had at least 8 people bedside to move her. The goal is to give the lungs as much space as possible, they are bigger in the back so to speak. She immediately dropped her pressure and her oxygenation to a dangerously low level. Adam was in the room at the time but I ushered him out. I now know firsthand how hard it is to watch someone you love die. I still have nightmares after seeing Mike receive CPR for a half hour with all the blood coming out of everywhere.... ears, nose, mouth, trach stoma, g-tube stoma.... it's a horrific sight and I wanted to spare Adam the possibility of having to see it with his sister. Jason was there so I had him stay with Adam outside the room so that I could go back in for Mackenzie. They needed to quickly position her back to laying on her back and I needed to try to make sure they didn't break any bones while doing so. Her bones are brittle.... it was now a lower priority but I still felt like it was necessary.
After she recovered from the position change, the attending took me aside and told me that it was looking less likely that she would live. He started talking to me about a procedure they do there called ECMO. I had never heard of it before but he said it is what they do when there is nothing left to do. He said that she currently meets the criteria but it would be up to me to approve the procedure. That I could instead chose to just let her die.
This is where it gets strange for me. I determined later that his questions were trying to get me to decide if her life was worth saving but since that question would never cross my mind, I didn't understand his questions. He asked me "what is Mackenzie like?". I thought it very strange given the circumstances that he wanted to get to know her. My best guess was that he was preparing me for the possibility that she would have severe brain damage with all this and may not be the same girl. I was caught so offguard by his question that my answer now seems to be just as odd..... I said "she will definitely let you know if you picked the wrong movie for her to watch". That was my answer.... that my child will tell you when she is pissed off. I know I was trying to give him proof that she had a quality of life and a desire to interact and be happy...... but I explained her entire existence to this man by saying how she gets pissed off.
With the ECMO procedure, they explained to me that they would be bypassing her heart and lungs and doing all the work for her until she could do it herself. That the success rate was maybe 70% for kids who had come in typically developed. For Mackenzie, her odds were closer to 40%. That's if she could survive the placement of the tubes. They speculated that the tube placement itself might kill her due to her scoliosis.
I am very fortunate to have some highly intelligent medically trained friends. I messaged them and decided that I would not consider the ECMO procedure until the ventilator settings had been maxed out. There is some research saying that waiting could decrease the odds of survival, but 40% was lousy enough that I thought it best to avoid it at all costs.
Mackenzie was moved down to the second floor ICU from where we were ..... 8th... since that is the floor that ECMO is done on.
As a testament to the prayers of all the friends on facebook and extending to their friends and a testament to the incredible strength and will to live Mackenzie has... she did not need to have the ECMO procdure done. She was on their radar for 3 very long days, but was finally cleared. Once she was cleared was when I realized that she was even on a watch. One of the nurses who had been assigned to her came back in just to check on her and she told me that she wasn't really her assigned nurse that day, she was an ECMO nurse and was watching her.
While we were there I know of at least 3 other children who had to have ECMO done. I don't think they lived.
Thank God Mackenzie avoided that same fate.
Once Kenzie was back on the bipap after her blood gas showed that she was in respiratory acidosis, I was still not in fear for her life. We had done this before where she just needs some support for her lungs while waiting on the virus to run its course. But I guess after having done it before a number of times, it made this time harder for her. They had tried a few things to help improve her oxygenation such as a mag drip and some continuous bronchial dialators but she wasn't improving. They told me that they would give her a couple more hours to respond but that they would likely need to intubate her. This is something that we've been through before too, so again, I wasn't in fear for her life. I mean, I knew it was possible because of the severity, but I didn't feel it could happen. Because I wasn't fearing her death, I didn't feel like Adam should make the drive all the way from South Carolina. I knew he would want to be with her, but I also thought that he should keep working and trust that I would let him know if he needed to come home. He was able to video chat with her before she was intubated, but she was not responding to anything like normal.
I think it was the following day when I started to suspect that this time was different. I called Adam back and told him that I though he should come up. I had already called her Dad. Even though Jason (Dad) isn't a part of our lives on a day to day basis, he is usually willing to come to the hospital. He mostly comes only when I need to leave, but this time he came just to see her.
They called the anesthesiologist up to do the tube insertion. They feared that her severe scoliosis would make it difficult to place the tube. The anesthesiologist are the ones who you call for scary placements. They were able to place her ET (endotracheal tube) without difficulty, thank goodness. They let me stay with her for this procedure, that was helpful for me. I know too that they are more willing to let me stay if I can demonstrate to them that I won't be an issue they need to deal with by either passing out, crying hysterically or asking a lot of questions. Parents of special needs kids tend to learn that lesson early.
Now that the tube had been placed they were able to get better volumes in her lungs but her body wasn't able to oxygenate very well. She was on high bipap settings and about 60% oxygen just trying to keep her body oxygenated in the 90s. Adam made it up, he and his girlfriend drove straight through the night after work, it's an 11 hour drive for them. He made it just in time. Kenzie was having more and more trouble and her body was failing. It's never a good thing to see the attending physician just hanging around the doorway. This attending physician is someone we knew from previous hospital stays while he was still in his residency. He told me that he was "running out of his bag of tricks". When I heard that statement that was the first time I have ever thought that she would likely die. I am just so glad that Adam was there. Even though I am his mother and he was worried for his sister, I took comfort with having him there.
They had an idea to turn her over onto her stomach. I didn't know this was a thing they tried sometimes and Mackenzie would never normally tolerate being on her stomach, but they had at least 8 people bedside to move her. The goal is to give the lungs as much space as possible, they are bigger in the back so to speak. She immediately dropped her pressure and her oxygenation to a dangerously low level. Adam was in the room at the time but I ushered him out. I now know firsthand how hard it is to watch someone you love die. I still have nightmares after seeing Mike receive CPR for a half hour with all the blood coming out of everywhere.... ears, nose, mouth, trach stoma, g-tube stoma.... it's a horrific sight and I wanted to spare Adam the possibility of having to see it with his sister. Jason was there so I had him stay with Adam outside the room so that I could go back in for Mackenzie. They needed to quickly position her back to laying on her back and I needed to try to make sure they didn't break any bones while doing so. Her bones are brittle.... it was now a lower priority but I still felt like it was necessary.
After she recovered from the position change, the attending took me aside and told me that it was looking less likely that she would live. He started talking to me about a procedure they do there called ECMO. I had never heard of it before but he said it is what they do when there is nothing left to do. He said that she currently meets the criteria but it would be up to me to approve the procedure. That I could instead chose to just let her die.
This is where it gets strange for me. I determined later that his questions were trying to get me to decide if her life was worth saving but since that question would never cross my mind, I didn't understand his questions. He asked me "what is Mackenzie like?". I thought it very strange given the circumstances that he wanted to get to know her. My best guess was that he was preparing me for the possibility that she would have severe brain damage with all this and may not be the same girl. I was caught so offguard by his question that my answer now seems to be just as odd..... I said "she will definitely let you know if you picked the wrong movie for her to watch". That was my answer.... that my child will tell you when she is pissed off. I know I was trying to give him proof that she had a quality of life and a desire to interact and be happy...... but I explained her entire existence to this man by saying how she gets pissed off.
With the ECMO procedure, they explained to me that they would be bypassing her heart and lungs and doing all the work for her until she could do it herself. That the success rate was maybe 70% for kids who had come in typically developed. For Mackenzie, her odds were closer to 40%. That's if she could survive the placement of the tubes. They speculated that the tube placement itself might kill her due to her scoliosis.
I am very fortunate to have some highly intelligent medically trained friends. I messaged them and decided that I would not consider the ECMO procedure until the ventilator settings had been maxed out. There is some research saying that waiting could decrease the odds of survival, but 40% was lousy enough that I thought it best to avoid it at all costs.
Mackenzie was moved down to the second floor ICU from where we were ..... 8th... since that is the floor that ECMO is done on.
As a testament to the prayers of all the friends on facebook and extending to their friends and a testament to the incredible strength and will to live Mackenzie has... she did not need to have the ECMO procdure done. She was on their radar for 3 very long days, but was finally cleared. Once she was cleared was when I realized that she was even on a watch. One of the nurses who had been assigned to her came back in just to check on her and she told me that she wasn't really her assigned nurse that day, she was an ECMO nurse and was watching her.
While we were there I know of at least 3 other children who had to have ECMO done. I don't think they lived.
Thank God Mackenzie avoided that same fate.
Tuesday, March 14, 2017
Lucky to be alive
I haven't written on this blog in quite some time. Last week I was fortunate enough to bring my daughter Mackenzie home from the hospital after spending 52 days in critical care.
She went in to the hospital with a fever of 106 and with having a seizure. I had been out to dinner with a friend and was still 30 minutes from home when the nurse called me. I tried to make it home before the squad arrived so that I could be sure to ride in with her, but I was maybe 2 miles from the house when they arrived. I turned around and went straight to the hospital.
This isn't the first time I have had to go alone to the hospital to meet one of my kids coming in by squad and it never gets any easier. My mind races a thousand different directions and all of them ending in the nightmare of her dying before I can get to her. You'd think dying would be horrible enough, but for some reason knowing she would be passing on surrounded by strangers is worse still. Luckily she and I made it there roughly the same time and I was able to quickly assess her and see for myself that the seizure had stopped. Her previous seizures, which had been over 12 years ago, have been irretractable (status) and they have had to intubate and induce a coma in the hopes of stopping them. So seeing that the seizure had stopped on its own was a relief. Seeing her respond to me was another relief. Prolonged seizures can sometimes cause brain damage and I didn't know how long she had been in one. We spent quite a few hours in the emergency room and she even seemed to stabilize some on her own with a few breathing treatments and some more Motrin. Her chest xray was even clear. But her fever was not coming down fast enough and because of the meds to stop her seizure were given, her breathing was slowing down. She needed to be admitted.
A few hours later and we are being admitted into the critical care unit. The nurse practitioner and the attending physician were just outside the room speaking with me as Mackenzie was being assessed by the nurses and respiratory therapist. The NP told me what all she planned on doing for her and then the attending spoke up and said that she needed to be tested for the flu. The NP had not included that test in her plans because they had yet to have anyone test positive this season. The attending wisely said "there is always the first". Mackenzie was tested and found to be positive for influenza A. I was glad to have something identified so quickly and was hopeful that this meant she would have a short stay.
She was put on a bipap mask since her breathing was so diminished from the antiseizure medication. She did well while on the mask and the next day the new NP gave the order to take her off of bipap and put her on just a nasal cannula. She seemed to be fine at first but then she started struggling. I asked to speak to the doctor and the same NP came in the room. The Advanced Nurse Practitioners are seen as being the equivalent to a Fellow there, something I don't agree with at all. This NP did not examine her or listen to her lungs or anything but still ignored my request to put her back on her bipap. I got the normal "she only needed it because of the Versed, Mom. She's doing fine". I didn't agree so I asked to speak to the Attending. It was close to 3 hours later before the same NP came back in and said that it was decided to keep her on the nasal cannula. I hated that our stay was going to start this way. I hate arguing with the so early in the "game" because I know that just means that we will be treated like shit the duration of our stay. But sometimes you just have to. I had to. Eventually he responded to every request I made with "we just aren't going to do that, Mom". Finally I got him to agree to getting a blood gas since we couldn't agree and he refused to let me speak to anyone else. A blood gas was obtained and even though I don't remember all of the numbers, I remember one.... her pH..... her pH was reading 7.22. Mackenzie was in respiratory acidosis due to the ego of this NP who would not listen to me and my assessment. She went back on bipap.
I was doing my very best to channel Mike and what he would have me say when I needed to speak for him to get his needs met at the hospital. My was of communicating before Mike was very curt and exact, after Mike, I am more "do you think we could consider?"..... It is exhausting to me, but he is right..... it usually works.
At this time, Kenzie was stable enough that I could reflect back on the last time she was there. The last time she was there was just a couple months after Mike had passed away and I was not in the best mental state. I didn't seem to be this time either.
In order to keep this blog shorter, I'll stop with this. It also never gets any easier to see people approach your child who is sick and scared, and not even address her at all. Not one little acknowledgment that she is a person with any thoughts or feelings. They just start doing things to her without one f-ing word. I try to gently coach them by talking to Kenzie on their behalf telling her what they are doing and that she's ok. But what I really want to do is hurt them..... every single one of them who show no respect for my daughter's life, I want them to have to experience everything they are doing to her without any ability to communicate or stop anyone. Don't worry..... I never have. I never will. But telling them isn't enough. In order for them to change how they treat my daughter, they will need to experience something personally traumatic. And that is a damn shame.
She went in to the hospital with a fever of 106 and with having a seizure. I had been out to dinner with a friend and was still 30 minutes from home when the nurse called me. I tried to make it home before the squad arrived so that I could be sure to ride in with her, but I was maybe 2 miles from the house when they arrived. I turned around and went straight to the hospital.
This isn't the first time I have had to go alone to the hospital to meet one of my kids coming in by squad and it never gets any easier. My mind races a thousand different directions and all of them ending in the nightmare of her dying before I can get to her. You'd think dying would be horrible enough, but for some reason knowing she would be passing on surrounded by strangers is worse still. Luckily she and I made it there roughly the same time and I was able to quickly assess her and see for myself that the seizure had stopped. Her previous seizures, which had been over 12 years ago, have been irretractable (status) and they have had to intubate and induce a coma in the hopes of stopping them. So seeing that the seizure had stopped on its own was a relief. Seeing her respond to me was another relief. Prolonged seizures can sometimes cause brain damage and I didn't know how long she had been in one. We spent quite a few hours in the emergency room and she even seemed to stabilize some on her own with a few breathing treatments and some more Motrin. Her chest xray was even clear. But her fever was not coming down fast enough and because of the meds to stop her seizure were given, her breathing was slowing down. She needed to be admitted.
A few hours later and we are being admitted into the critical care unit. The nurse practitioner and the attending physician were just outside the room speaking with me as Mackenzie was being assessed by the nurses and respiratory therapist. The NP told me what all she planned on doing for her and then the attending spoke up and said that she needed to be tested for the flu. The NP had not included that test in her plans because they had yet to have anyone test positive this season. The attending wisely said "there is always the first". Mackenzie was tested and found to be positive for influenza A. I was glad to have something identified so quickly and was hopeful that this meant she would have a short stay.
She was put on a bipap mask since her breathing was so diminished from the antiseizure medication. She did well while on the mask and the next day the new NP gave the order to take her off of bipap and put her on just a nasal cannula. She seemed to be fine at first but then she started struggling. I asked to speak to the doctor and the same NP came in the room. The Advanced Nurse Practitioners are seen as being the equivalent to a Fellow there, something I don't agree with at all. This NP did not examine her or listen to her lungs or anything but still ignored my request to put her back on her bipap. I got the normal "she only needed it because of the Versed, Mom. She's doing fine". I didn't agree so I asked to speak to the Attending. It was close to 3 hours later before the same NP came back in and said that it was decided to keep her on the nasal cannula. I hated that our stay was going to start this way. I hate arguing with the so early in the "game" because I know that just means that we will be treated like shit the duration of our stay. But sometimes you just have to. I had to. Eventually he responded to every request I made with "we just aren't going to do that, Mom". Finally I got him to agree to getting a blood gas since we couldn't agree and he refused to let me speak to anyone else. A blood gas was obtained and even though I don't remember all of the numbers, I remember one.... her pH..... her pH was reading 7.22. Mackenzie was in respiratory acidosis due to the ego of this NP who would not listen to me and my assessment. She went back on bipap.
I was doing my very best to channel Mike and what he would have me say when I needed to speak for him to get his needs met at the hospital. My was of communicating before Mike was very curt and exact, after Mike, I am more "do you think we could consider?"..... It is exhausting to me, but he is right..... it usually works.
At this time, Kenzie was stable enough that I could reflect back on the last time she was there. The last time she was there was just a couple months after Mike had passed away and I was not in the best mental state. I didn't seem to be this time either.
In order to keep this blog shorter, I'll stop with this. It also never gets any easier to see people approach your child who is sick and scared, and not even address her at all. Not one little acknowledgment that she is a person with any thoughts or feelings. They just start doing things to her without one f-ing word. I try to gently coach them by talking to Kenzie on their behalf telling her what they are doing and that she's ok. But what I really want to do is hurt them..... every single one of them who show no respect for my daughter's life, I want them to have to experience everything they are doing to her without any ability to communicate or stop anyone. Don't worry..... I never have. I never will. But telling them isn't enough. In order for them to change how they treat my daughter, they will need to experience something personally traumatic. And that is a damn shame.
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