I wrote a post a few days back about my baby being in the hospital for whooping cough. I never knew how serious this illness is and how awful it is for infants... anyway, we are going on our 6th day at the hospital. We are here because my baby goes through apnea episodes where all of a sudden she will stop breathing many times throughout the day or go through coughing fits when she can't breathe because they're so strong.
Anyway, since the start of this (5 days ago), I have seen her turn limp and blue 5 times. Tears are streaming down my face as I write this. It's so hard to watch and even harder feeling like there's nothing I can do.
I'm getting to the point of frustration where I can't see it anymore. There has to be something I can do. I need advice on what my options are here at the hospital. This is the longest I've ever stayed at a hospital so I'm not familiar with how they work. But, basically my life has gotten turned upside down. I am running on a total of 8 hours of sleep in 5 days. My husband or I need to be up watching our baby at all times to make sure she doesn't have an episode. She is hooked up to monitoring machines but we can catch the episode before it happens if we watch her by helping her sit up and patting her back. This is getting exhausting. Our other child, almost 2, also caught whooping cough and I'm not able to be with him because I'm nursing the baby at the hospital. I can't stand being away from him while he's sick.
Here's where I'm stuck. The hospital isn't doing anything for us at this point. We could be home doing the same exact things, but be more comfortable in our own bed instead of sleeping on a bench. I'm frustrated because the nurses don't really do anything. She goes through these episodes of turning blue and the nurses just come in and pat her on the back and wait until she comes back. Nothing else is done. And I'm thinking all along, surely there's another option... or, if not, I could be at home with my family right now doing that very thing myself! They don't seem near enough concerned about her condition, so my husband and I are constantly doing their job.
Does anyone know what our options are as patients? She is admitted at a children's hospital. Are we able to request at home care where we bring an apnea monitor home? Are we able to go against doctor's orders of us staying even longer even though no treatment is really being done?
I need help because I am a very emotionally, physically, and mentally drained mama. If I have to see my baby go limp and turn blue one more time I'm going to punch a wall.
1. Her o2 is normal in between episodes. She is a completely normal baby with o2 at 97-100%. The problem is as soon as she falls asleep, she has episode after episode of coughing and not breathing.
2. She was on o2 at 1 liter for about 24 hours and was just taken off to see how she would do.
3. Coughing spells last about 30 seconds. The apnea spells last longer... sometimes up to 1 minute and a half of not breathing and trying to wake her up.
4. We are on the respiratory floor of the children's hospital. The only doctors we have consulted with are pediatricians. All we have been told is that we need to go a full 24 hours without an episode for her to consider us going home. I just don't know if that is possible given we just moved here a month ago and need to get our family back in order since we don't have tons of support here yet.
5. What do you mean by RT?
Sending hugs.
You have some great responses. If you take even on piece of advice, let it be to go home and get some sleep. 'she is hooked up to monitors. They will watch over her.
Before I give you the long answer (because, yes, you have a whole slew of options)..
1) What are her o2 sats (normal not in an episode, and when she's blue)?
2) Is she on o2, and if so at what rate? (liters)
3) How long do these spells last?
4) Are you in a pulmonary wing / ward/ dept. or in consult with a pulmonologist.
5) How often is her RT?
I'm an RN in a pediatric intensive care unit.
I've treated literally hundreds of children with whooping cough. When these kiddos are infants, they typically stay in my unit (the ICU) for about 6 weeks. That's how long it takes to recover enough from this illness to be safe with just family monitoring the situation.
Your nurses may seem like they aren't doing anything, and you may think you could do the same thing at home. And you're right - you probably could pat your kiddo and home she "comes back" each time she has a coughing spasm and turns blue. But the problem is - what if she doesn't "come back"?
In the hospital, your nurses are able to thread a suction catheter down her nose, into her throat, to remove any occluding mucous. The nurses can apply a mask and bag oxygen into her lungs with just the right amount of pressure so as not to pop a hole in those fragile lungs. They can rapidly administer medications via iv, through the nose, through the rectum, or down the trachea, if necessary. And most importantly, they can grab the doctor and assist him to put a tube into your child's airway and breathe for your child, should it become necessary.
You won't get home health care if you leave the hospital against medical advise. So imagine you go home, and your kiddo has a coughing spasm and quits breathing. You pat her on the back, sit her up, and wait, but nothing happens. She just keeps turning blue. What do you do? Do you know CPR? If you do, are you going to start CPR? Will you call 911 and hope they get there in time before irreversible brain damage has occurred? Or will you jump in the car and rush to the neareset ER, hoping the same thing?
Do you want that responsibility? What if you, being so tired from such a stressful experience, fall into a deep sleep and don't even hear your kiddo having a coughing spasm? What if she quits breathing and you are asleep? Don't you feel better knowing someone is monitoring her constantly?
I think the better part of valor is to leave your child in the hospital, where she obviously belongs. The hospital will let her go when she's safe to go. Take a break, go get some sleep. Let the nurses "do their job" for awhile while you rest.
Also, just for another consideration - most insurance companies will not cover any medical care or hospital stay if a patient (or parent of a patient) leaves the hospital AMA. I know I could never afford a 5 day hospital stay without insurance. Can you?
Hope your kiddo gets better soon. Maybe get them vaccinated after this so you won't go through it again. Remember adults need to get revaccinated against whooping cough so they don't spread it to their young children.
What more do you want them to do? They are doing everything they can, when her moniters go off they come in and check on her. I'm sure she's on some kind of antibiotic, and other meds. They can't prevent her from turning blue it's the unfornitunte part of whooping cough. Sorry to sound blunt but your blaming the hospital staff for something they have no control over. I know how hard it is to have a child in the hospital, my son spent 40 days in the NICU after birth and then another 12 days when he was 3months old for a blood infection and phemonia. So I saw him turn blue and limp also, but I never blamed the hospital staff for not doing their jobs. They did. As far as home care what are you going to do for your child if she can't breathe? Call 911? All that will do is delay treatment for her. She's where she needs to be to get better.
Added - Thanks so much, Angioplasty! You have given such valuable advice here!!
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I would NOT go against doctor's orders and take your baby home. You risk the real chance of them calling CPS and you losing custody of your baby. You do not want to go there because they wouldn't let you continue to see her at the hospital, much less sit with her. AND they may take your older child away from you too.
It's not necessarily about no treatment in the hospital. It is about having a crash cart RIGHT THERE to revive your baby if she stops breathing all together. If she she were at home, you would not be able to save her.
They are waiting it out, Audrey. Yes, whooping cough is a terrible disease. That's why people died from it back in my mother's time (she told me how terrible it was and what people went through - she had it as a school-aged child herself.) I hope your older child is faring better - that your infant has caught it is VERY serious. The hospital would be nuts to let her go because they could be liable for a lawsuit if she died. And as hard as it is to be there, you don't want to be at home if she stops breathing...
If I were you, I'd get the hospital's social services and advocacy group involved especially since your other child has caught the whooping cough, in getting you some support. There are things they can do to help you.
And you and your husband should talk to the doctors about whether you two need a booster shot for yourselves so that you don't come down with it. Were you able to determine who your baby caught it from? I would think that the health department would want to know that.
Saying prayers and hoping you get the help you need, Audrey.
Dawn
If you child could not catch their breath the nurses are right there to put tubes in their bodies to help them get their air. They are right there to administer life saving assistance day or night.
I understand that you want to see your other child but if you go home aren't you running even a slight chance that your other child could get sick too? Why would you even think that is okay? That it "won't" happen. It might. Then you'd be right back where you are now but with 2 children in the hospital instead.
I would sit right where I am if I were you. It is hard, even a week of it is hard and you are looking at weeks more. I know this is difficult. Please just keep talking to us and telling us about how hard it is so we can listen and help you bear this burden.
First of all you need to get some sleep....you cannot make good decisions for anyone if you are sleep deprived. So, ask if there is a place where you can sleep in the hospital where they can come get you if you are needed for the baby...that way you are close to her, not all the way home, but away enough where you can sleep.
I have done a lot of reading on whooping cough and really there isn't anything they can to to stop or lessen then coughing episodes....so it may seem like they aren't doing anything, becasue they are doing all they can do. They can however step in with lifesaving measures if your daughter can't start breathing again after an episode...THAT is why you are there if the back patting and sitting her up doesn't get her breathing again.
A RT is a respiratory therapist someone who comes in on a regular basis to administer breathing treatments, back patting, etc. You may not have one for whooping cough as from what I have read there isn't much they can do....but you might. My daughter was in the hospital with RSV and our RT came in every three to four hours and I got more information out of them than the nurses and they were giving great hands on care.
Whooping cough is called the 100 day cough...becasue the coughing can last for one hundred days...about three months...so you need to get a routine set up for your hospital stay becasue it might be a long while yet before it is safe to take your daughter home.
Whooping cough is a wait it out and pray the child keeps breathing disease...which is why it is so important to vaccinate against it.
Don't do anything rash like remove her from the hospital....get some sleep, please ask everyone you can about the best way for you to get some sleep becasue that will clear your head and allow you to function better...
I am sending you a huge hug!! My cousin is a pediatric nurse and she says the whooping cough infants are the hardest for her becasue there is minimal treatment they can give but to be at the ready if they need emergency help.
I'm so sorry for what you are going through. Your fear, anxiety and exhaustion are taking over completely, and I understand that.
What exactly is it that you want the nurses to do? So far, your baby has "come back" every time, but as others have said (especially Angie), you are in the hospital until she stabilizes and there's no need to have her 10 feet away from lifesaving equipment and those who can use it. You're watching her "turn blue" but you want to go home? I understand you want a miracle after 5 days, but it's really unfair to say the staff "isn't doing anything." They are monitoring her but they don't have a miracle cure up their sleeves.
They ARE concerned - they come in every time. They aren't going to show concern and panic, they are going to show competence and efficiency. That's what you want in medical professionals.
What I think you need is more help. You've got to get some friends or relatives involved so that you can get some sleep. If you are nursing, then pump so that someone else can give her a bottle. See if there is a room in the hospital where you can sleep a little without leaving. Doctors sleep there, so maybe you can. Get in touch with the hospital social worker and express your concerns for your entire family. Find out what other resources are available. Sometimes there is a nearby house (often sponsored by a corporation, for example, McDonald's) where families can stay (and even bring your other child, whom you miss) if they live far away. Also get in touch with the lead pediatrician or the lead pediatric pulmonologist to find out what else can be done, and express your fears/frustrations. And have a friend or a family member (besides your husband) right there next to you with a note pad or even a pocket recorder, so you don't miss anything. Having an objective person next to you is very helpful and frequently recommended by hospitals and doctors in cases of serious illness. There's just too much stress on those closest to the situation for them to remember everything. Often the mind is forming the next question before the answer to the last question is fully expressed.
Home care and respite care for you and your husband may be available, but so much depends on her condition, the equipment needed, and insurance coverage.
I don't recommend going home against medical advice until you get some major answers. What in the world would you do at home if you patted her back and she didn't come right back?
Please try to get some sleep and some help where you can express your frustrations.
Do you have any family that can help you? You need to sleep. So having your mom, dad, sibling, mil,fil.. Friends, come and help. They could set up the lotsofhelinghands.com for you. It has a way they can sign up to watch your baby while you sleep r go to your home and stay with your son.
People could bring you food, change of clothes.
Is your baby in the NICU? or in a room? Can they put you all in a room?
See if there is a patient services person you can speak with, about getting your baby in a room, with a bed.
Ask for help from friends and family.
Your baby needs to stay in the hospital. Do not let her leave until she is not having these episodes. They are saving her life right now.
You must stay strong, you must get rest, you must do whatever it takes to get your baby through this.
I am so sorry about all of this. Whooping cough is horrible. It is very frightening for an adult, your toddler and infant, should be the top priority. Do whatever it takes, to get them well.
The problem with this illness, is that it has to get through their system. There is no magic pill, surgery or procedure. That is why they really plead for vaccines, the life it saves is not just ours, but the people we come in contact with.
I am sending you strength.
Oh don't take a chance with breathing. NEVER. Seems like your baby is coming back just fine from these episodes when you pat her back. But that might not be the case always. You feel the nurses are doing nothing. Seriously they see a lot of this happening , and they know when to worry and when it's ok. I don't know about whooping cough , but had a preemie for whom apnea is normal since they are born early. Even my son had 2-3 episodes where he stopped breathing for 20 secs and the monitor would beep(luckily I was never around when this happened) and the nurses told M. all they had to do was rub his back. But I would hear monitors going of constantly for other babies and many nurses and doctors would rush at once. I would know something is wrong and they are all trying to fix it. I used to be so worried about these episodes, and the nurses would explain to M. all about it. Even I felt my baby was fine and I could take care of him at home but they told M. why it's important he stays in the hospital. It's because if an incident happens and the baby doesn't breathe again on it's own , the baby would need immediate attention and believe M. there will be atleast 10 nurses and doctors in your room if that happens. It's very serious. Be glad that's not happening with your baby and I know it's all very emotionally and physically draining on you .But don't take the baby home until they let you. You can never predict when these episodes will strike. And if it does at home , you most probably won't have enough time to get her into the hospital before any permanent damage is done. Better be safe than sorry!
Also, go home and take some rest. If he is hooked to monitors , trust the nurses to take care of him. Or take turn with your husband or family member, let them be with her while you get some rest. It's VERY important!
You need to trust the hospital, nurses, monitors and go home and sleep. If you have to take shifts so that one of you is there, do it. Your child is in a place where she will be cared for right now, and YOU all need to get sleep so you are able to care for her when she gets home. Stop doing their job.
Of course you feel like you are more concerned about your daughter - shes YOUR daughter. They are concerned as well, but it's not the mama-bear level. It is the medical professional level. It's not going to feel the same to you or be the same, but they do care.
Audrey,
I am so deeply sorry you are going through this. I absolutely know your pain with the long hospital stay and not knowing what to do. My advice is to ask to talk to the head doctor in charge of your baby's care. Ask them to please write out a care plan for you of what you can expect for the next several days, what potential options are and what you can do as her mama to help your baby. Then, ask the nurses to speak to the hospital social worker---they can be wonderful assets in getting support for you and how to work through the hospital system. They always have someone available to talk to during business hours and it is soo helpful.
One other thing---don't be afraid to be that mom who asks all the questions. You ask every question you need to until you feel comfortable with their answers. If you don't feel your baby is getting the best care or that you can handle at home, tell them. My feeling on this is though that she is best served at the hospital and until you are able to get her apnea stabilized, she should be there for her health and safety. But don't be afraid to ask, ask ask. They understand that you need to do this and you need answers. They are trying to help you. You are definitely able to request home care and and apnea monitor. I would definitely bring this up to the doctors and tell them you insist on a care plan as soon as they can give one to you---at least something to tell you what you can expect for now. What is normal for whooping cough, what the options are etc.
Remember----get some rest!!! Your baby needs you to be the BEST you that you can be and call that social worker to get support---the chaplain too. They will pray with you or just come and sit and listen to you weep and voice your fears.
Hang in there!!!!
M
I am so sorry. I just wanted to send you a hug, prayers, strength... I remember when my daughter was 6wks and we were in the hospital for RSV. It was so frustrating. I hope she feels better soon and you get to be home as a family.
Ditto the social worker at the hospital. They know the resources you need to get help. Do not leave against medical advise (AMA). Don't make a stink unless you need to but if you have poor nursing care ask to see the nursing supervisor. They are there 24/7. At anytime you can ask to change nurses.
You can ask the social worker if they have patient advocates there. If you don't like the ped doc on call, ask for a different one. If I lived by you I would come help! As it is, I will pray for you. You can also ask for the hospital chapline and they might have resources for some help for you to get some rest and help your other child.
Has your baby seen a pulmonologist yet? Id give that route a try. Going home wouldnt be an option for me at this point, keep her in the hospital where the pro's and O2 are ready if she stops breathing. You also need to breathe mamma. Prayers for you and baby.
EDIT: the website Laurie mentions is http://www.lotsahelpinghands.com/ Do check it out. It looks as though there is an active help group for your area.
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Oh my God you poor thing. I'm here crying for you and your family. And you're going to hate what I have to say... I have no clear answers for you.
I think you need to prioritize a few things before you make ANY decisions. First, remember that no doctor or nurse wants to hurt your child. None. Period.
Second, you need to find some way to get some sleep. There is no way you can make any rational decisions on no sleep. Can you find a friend or family member to help you stay alert at the hospital and send your husband home to your 2 year old, or vice versa? Guilt on top of no sleep is a dangerous cocktail.
From what I know about hospitals, you can refuse care and go home. But if your baby's situation is serious enough to warrant being in the hospital in the first place, I'd stay put and ask all those same questions you posed here, until you get some answers.
It may feel like they're doing nothing, but it's probably because you feel the situation is hopeless and you acutely feel your child's pain. Try to find answers about your options for home care, or what it would cost you to pay a private nurse. But if getting these answers is too overwhelming right now, then stay put. Even if you think they're not doing their jobs well, more people checking on you and your baby is not a bad thing.
Lastly, one random thought. If keeping her upright and patting her back helps, could you hold her/wrap her across your chest and sleep with the hospital bed in a semi-reclined position, so she's stable, but mostly upright? Or are you so sick with worry that you can't really sleep anyway? My best friend's kids had a bad bought of whooping cough and she spent several hours each night "sleeping" in a make-shift steam room (run the shower on hot while you sit in the bathroom) with her daughter on her lap, just so she could breathe.
Hang in there mama, and get some sleep somehow. I know, easy to write, hard to achieve... my thoughts are with you.
Please tell everyone you know to consider getting their booster shots for whooping cough. Adults need to have their boosters in order to help prevent these outbreaks which are dangerous for babies, the elderly, people with asthma, and immune-compromised individuals.
If you and your husband haven't had your boosters ask the hospital if they'll give them to you now. I'd also consider getting your flu shots now through the hospital since your daughter has a weakened immune system.
I'm sorry that your little one is having to endure this. She's in my prayers.
Oh, I am saying prayers for you and your family... I was going to give you the what-for regarding leaving the hospital, but those that posted before me covered it nicely, and much more eloquently than I could ever have.
Your baby is in the right place - keep her there. For all the reasons those below have stated. They are trained to handle such cases, and are professionals. They are not, however, babysitters. They won't sit by the bedside waiting for the episodes. They are hired for their expertise, and to over see a lot of other patients. That is what the monitors and alarms are for. The staff will respond as needed - they are trained professionals. Maybe you could repeat this to yourself over and over.
You could also look into hiring a private nurse to stay with your baby while you get the rest you desperately need. That way your baby will have nurse attendant and you will get some sleep...
Prayers and more prayers! It must be scary - and don't disregard the advice about getting a WC booster shot. You must look into this for your own good - and everyone around you that has babies that could be exposed.
you need to talk to the hospital administration TODAY.nothing says, "do your job!" like talking to hospital administration, and saying the words"LAWSUIT!!"
been there. done that
K. h.
bottom line here is that if you personally see that your child is not getting the same level of care in the hospital as another child with the same problems, then you may need to consider that the nurses may be "nursing a prejudice", doctors and nurses are just as vulnerable to allowing their prejudices to cloud their judgement as every one else. ben and i saw this personally among the doctors , social workers and nurses
while our daughter was in johnston willis hospital
The only advice is keeping voicing your feelings to whomever you can in the hospital. You are a wonderful strong Mother and you and your family will be in my prayers! Hope you all will be better soon!
I think you need to talk to someone, not associated with this hospital. Maybe an instructor at a nursing program in a nearby school. I would want to know if anything else can be done for her. I know the coughing from whooping cough can stop breathing -- I had it as a child. And I remember the hard cough but I am 57, I would think that by now there should be better medicines available. There also should be something that can be done for her to be able to breath easier. Is her head raised up a little?
I would be asking questions. Talking to her private doctor might help but he may simply poo poo your concerns with platitudes. She is your daughter and you need to advocate for her.
