Legal help; tramadic intubation/self extubations

[max]

My son was trach'd 19mos. Ago as a result of a tramadic intubation and several self extubations while in the NICU. He has severe subglottic stenosis and severe edema. I'm trying to find an attorney to help me file complaint with hospital/doctor. I'd also like to change the rules in NICU where a parent should have the right to restrain their child with "no/nos" to avoid self extubations. Has anyone dealt with this before and could they lead me in the right direction?

[jennymclelland]

Everybody on this board has a complex child, and I'm sure everybody has dealt with some screw-ups by the doctors and nurses taking care of their child.

I'm not lawsuit friendly for medically complex children. Sure, if a doctor shows up drunk to work or amputates the wrong limb, I could be persuaded to sue. But trach kids are incredibly complicated. Doctors and nurses are working with imperfect information under incredible time pressure. I would drive myself crazy if I second guessed every decision that every doctor made on my son.

I also don't think that the mere fact that a child has to get a trach is grounds to sue. Any intubation in a baby or small child can cause the kind of trauma that can eventually lead to a trach. Other than intubating by an anesthesiologist prior to a planned surgery, all intubations are pretty "traumatic." Babies get intubated because they're not breathing. Not breathing is a big deal. Intubation is a big deal, but the alternative is not breathing, so I'm going to go with intubation every time.

I'm willing to bet there is a lot more to your story than what you've posted. What is your child's underlying diagnosis? Why was your child in the NICU in the first place? Was your child a preemie, and if so, how many weeks? Why did your child need to be on a ventilator? How long was your child on a ventilator? Why was your child fighting the vent so much to extubate himself? Why didn't the hospital allow no-nos or similar restraints to be used on your son?

Also, what is the plan to get your son decannulated? If you're sticking with the same hospital, it might poison the waters to start a big lawsuit.

[Cillian's Mom]

When Cillian was in the hospital so much during the first year of his life, plenty of mistakes were made. They didn't hold pressure long enough after a femoral ABG which caused a massive hematoma that lead to an undetected "blood tumor". This blood tumor pushed on his bladder and part of his stomach. As a result, he could not tolerate tube feeds and was left on TPN, which is bad for the liver long term, for all his nutrition for a month. They were doing a routine abdominal scan and found the tumor. He had to have surgery to remove the tumor. Next, when he was being trialed on his home vent at the hospital, the home vent was low min vent alarming a lot. The nurse thought it was just a nuisence alarm and ignored it. It wasn't until he started desatting that she actually checked him. Turns out he had a plug in his trach.He went into a CO2 induced seizure (his CO2 was 120, most people don't live once it reaches 100 and if they do they usually have brain damage). Those are just a few examples. We chose not to sue, however, we did file formal complaints with hospital administration and both incidents were reviewed by the risk management team. We did receive letters of apology. We did have another incident in which our son contracted MRSA from his central line because one of the nurses didn't wash and glove. After that incident, we received a letter of apology as well. Should we and could we have sued for those incidents? Yes and yes, but we really needed to work with the doctors at this hospital to get my son healthy and didn't want to burn bridges. We also had already been through so much, we didn't think we had it in us to fight a big lawsuit. I would say do what you feel is necessary, however, it might be best to file a formal complaint with the risk management team first and see what happens.

[MelissaRyan210]

I know this is almost a year later, but I am curious what came of your desire to pursue the hospital legally?

I am also thinking about doing the same thing for my child. The small hospital he was born in should never have kept him (25 wks). The children's hospital he was transferred to told me that if he had been sent there to begin with it was very unlikely that he would have a trach.

Good luck in your legal battle. Some of these hospitals ARE in the wrong and need to be shown they cant do this without people noticing and standing up for those that come after us.

[MelissaRyan210]

Sorry, new to the message board system. Didnt realize this conversation was just started. Still figuring this thing out.

My child also has subglottic stenois by the way. And there are some very interesting research articles out there with the percentages of children who get it now days - a very very low number.

I feel for you because my child also started out with perfectly fine airway its only the multiple traumatic intibations that caused it. I have tons of pictures of a very loose neobar on my kids face - never knowing that this was a problem. Regular NICU nurses would do the intibation where were were. The stylis would always come back bloody. I just didnt know. I get very angry when I think about what my child and family have gone through because of the trach.

[max]

Thanks so much for responding. It hurts to hear others are in similar situations but helps me know that I'm not alone. I've tried to write down what happened to my son but it's just tooo long to read. It's hard for me to shorten too. Max was intubated for a virus. He has a very small trachea due to DS. First doctor intubated at 2.5 tube and warned us not to go higher to avoid damage to trachea. Next doctor on shift came in and said she wanted bigger tube. Why I don't know because he was doing just fine and co2 was coming down etc. We argued with her for 1/2 hour and finally agreed because she kept saying please just let me take a peek if it doesn't fit I will not push it. After 2nd intubation nurse said there was a ton of blood. They tried to get him off vent and he could not breath on his own due to edema. They gave him steriods for week to lesson swelling and he finally got off vent but never breathed the same again (retratctions, stridor, etc). I took him to ENT after peditricain said he was in respitory distress and ENT scoped him and said he needs trach now or he will not make it. I finally got medical records and it shows that 2nd doctor tried to insert 3.0 tube 3 X's with much diffuclty and blood. It actually says NICU team member did the intubation not her. She flat out lied to my husband and I. If this was an emergeny situation where they needed the bigger tube I would not be so upset but the fact that he was fine with the smaller tube, we stressed our concern about going to a bigger tube and she just igrnored everything. I can only image seeing her jamming that tube down his throat 3X's until it fit. He also self extubated 6X while on the vent. I asked for restraints and they would not give them to me. It's against code policy for develompental reasons. So instead my son had a large balloon pulling through his small trachea six times. I can't image the edema and damage that causes alone. I can only say the developmental delays he has now with a trach for X number of years. Anyway, I want to file a complaint and try and change the laws in NICU that give the parents the option to restrain with "no - nos" My son, also got MRSA in hospital due to dirty phones (that's another story) which I will file a complaint and ways to address this issue at another time so it doesn't happen to other children. I could write a book on this and I"m sorry I'm typing so much to begin with. We've had excellent care most of the time but this one doctor I know pushed the limit and that is why he has a trach today. I know this happens all the time too!!! I've never sued anyone before but I know in my heart it is the right thing to do. Will I win probably not but maybe it will get someone to listen and change their policies. It's taken me a year to review the medical records with attorney. MEd Mal Attorneys don't like these cases because it will end up my word against the doctor. I will definately file a complaint with NICU and state licensing board. I was reaching out to see if anyone had done this before and any suggestions. You've all been such a big help so far. I'll keep you posted with any new status

[max]

Thanks so much for responding. It hurts to hear others are in similar situations but helps me know that I'm not alone. I've tried to write down what happened to my son but it's just tooo long to read. It's hard for me to shorten too. Max was intubated for a virus. He has a very small trachea due to DS. First doctor intubated at 2.5 tube and warned us not to go higher to avoid damage to trachea. Next doctor on shift came in and said she wanted bigger tube. Why I don't know because he was doing just fine and co2 was coming down etc. We argued with her for 1/2 hour and finally agreed because she kept saying please just let me take a peek if it doesn't fit I will not push it. After 2nd intubation nurse said there was a ton of blood. They tried to get him off vent and he could not breath on his own due to edema. They gave him steriods for week to lesson swelling and he finally got off vent but never breathed the same again (retratctions, stridor, etc). I took him to ENT after peditricain said he was in respitory distress and ENT scoped him and said he needs trach now or he will not make it. I finally got medical records and it shows that 2nd doctor tried to insert 3.0 tube 3 X's with much diffuclty and blood. It actually says NICU team member did the intubation not her. She flat out lied to my husband and I. If this was an emergeny situation where they needed the bigger tube I would not be so upset but the fact that he was fine with the smaller tube, we stressed our concern about going to a bigger tube and she just ignored everything. I can only image seeing her jamming that tube down his throat 3X's until it fit. He also self extubated 6X while on the vent. I asked for restraints and they would not give them to me. It's against code policy for develompental reasons. So instead my son had a large balloon pulling through his small trachea six times. I can't image the edema and damage that causes alone. I can only say the developmental delays he has now with a trach for X number of years. Anyway, I want to file a complaint and try and change the laws in NICU that give the parents the option to restrain with "no - nos" My son, also got MRSA in hospital due to dirty phones (that's another story) which I will file a complaint and ways to address this issue at another time so it doesn't happen to other children. I could write a book on this and I"m sorry I'm typing so much to begin with. We've had excellent care most of the time but this one doctor I know pushed the limit and that is why he has a trach today. I know this happens all the time too!!! I've never sued anyone before but I know in my heart it is the right thing to do. Will I win probably not but maybe it will get someone to listen and change their policies. It's taken me a year to review the medical records with attorney. MEd Mal Attorneys don't like these cases because it will end up my word against the doctor. I will definately file a complaint with NICU and state licensing board. I was reaching out to see if anyone had done this before and any suggestions. You've all been such a big help so far.

[angelbaby]

we too had numerous tramautic intubations....self extubations ect...my son is almost 9 yrs old and still has edema of the airway....i too looked over his records, notice certain days where missing, those where the days when things seemed to happen....to be honest i was so overwhelmed with everything, we didn't have the energy to do a lawsuit or even look into it...i just wanted my son home...having been through a due process educational lawsuit recently, i can tell you it is very stressful, time consuming ect...unfortunatly many kids with trachs have gone down the road of traumatic intubations, i was livid when i found out they let a resident practice intubating my son when we had strict orders for ent to paged for intubations, a nurse let it slip after he was trached that the resident intubated him last time, it only took 4 tries, as you can imagine i was extrememly upset, but knew then and there i needed him out of the nicu asap...so if you have the means, financially and emtionally, good luck to you, it is very frustrating when you know your child could have recieved better care...but they use your child like a guinea pig and thier dx as a copout if something goes wrong...it is hard to prove and in the courts, undisputed proof must be presented...good luck

[principe]

Of goodness! Why would two doctors deal with one patient and make different decisions about intubating? My son was on the PICU more than 10 times before he got the trach and once when trached. And I can tell you how well things were done at this particular PICU because of him being there so many times. He was intubated only after laryngeal reconstruction and after laser surgery but they kept him intubated the least amount of days possible. After intubation he was given tranquilizers so that he wouldn't even move because is too dangerous for an intubated child to move, the nurses at the PICU said, because moving can irritate the airway, like in your baby's case. Plus when a child, baby... is intubated at this PICU the nurse has to be there all the time making sure the baby/child does not move. This are the orders the nurses are given. All the time my child was intubated the nurse was there making sure he wouldn't move and when a new shift started and a new nurse would come in she/he would also needed there all the time making sure the child wouldn't move. Every time my kid would move the nurse would hold him and if they needed help to hold the child they would call another nurse. Basically the PICU where Aldo, my son, was at was extremely cautious about intubated kids not moving. If the kid was older the nurse old be very firm and tell the kid not to move, I heard a nurse with a bigger kid telling him that. With babies they would just hold them.

If a pediatric hospital like the one my son goes to takes these precautions why wouldn't another hospital do the same thing! They know babies move a lot and precations should be taken. I hear this stories and I feel blessed my child has been taken good care of at his hospital. I wish you the best in your lawsuit because hospitals/companies always know how to cover their back.

By the way, with my son only one doctor, his ENT, made the final decision about intubation tube size. If changes needed to be about his meical needs PICU doctors would consult with his ENT first, and if it was an emergency situation PICU doctors would consult among themselves. Very unlikely that one PICU doctor would've made the final decision.