Heartbroken and Not Sure What To Do

[3kidzmama]

Is there any type of medical Childcare facility for children with health problems where you live? If so, I would contact them and then provide the parents with this facility as an alternate resource. They would be better equipped to care for this child. There is a facility in my area that is operated by the children's hospital in our state. This is the type of facility that I would recommend to the parents for Childcare. Hope this helps! Praying for you, the family and the baby!

[JJPlaycare]

I have requested all of the above info frrom the parents. I have talked to my liccensor who is brand new and right out of college. I then contacted our nieghboring county which iis bigger and has a more experienced licensor. The syndrome is still not confirmeed and wont be for a few more weeks. The heart condition is being treated with medicaation and they will need to go in for several apts. to watch the aorta and its size closely. I also told her she needed to talk and bring something in writing from his peditrcian as well as from the geneticisAll of this is new and health stuff I have never dealt with or heard of. I have been on a rollercoaster of emotions and what the best decision for the baby, myself and the rest of the kids would be. I am nervous to care for him, I couldnt live with myself if something happened, I dont think it would be fair or a healthy decision for the child to come here. I however am vert scared of thr discrimination part of this and dont exact ly know what to say other than to be honest and tell her that I am not qualified to care for her child and express my concerns andkeep making it about the child because that is the truth and the main concern here. I thank you for all of your help with this, but I think for now I have decided that all of my attachment and emotions and heartbreak of this situation needs to be set aside and I need to let reality surface and do whats best for the child and helping his parents get him the care he needs and deserves.

[JJPlaycare]

I went and talked to the parents last night at their house and explained to them that I am not qualified to care for their child and that there are better more suitibable places and people out there that would be a better fit for their child and would be better, more experienced and more qualified to provide the care their child needs. Mom is very sad, but understanding. Dad is not happy and very frusterated and grasping for straws..... I agreed to talk to their doctors to see if that would change things, but explained that I didn't think it would change what I have decided and that I am only doing what in my opinion is best for the child. It went exactly how I thought it would. I completely understand all of their emotions as I have plenty of my own, but have come to realize that sometimes emotions have to be set aside and reality has to take ahold. The syndrome (which is still undetermined) is not my major concern it is the heart condition and it is my job to make sure every child here is recieving the care that they deserve and need. If I don't feel qualified or comfortable caring the a child then they can't recieve everything they deserve and need. I ultimately want what is best for this child and know in my heart and my head that I am not the answer. I do have another question just so I can use this in the future as well, but what is the time frame you use when a child is diagnosed with RSV before you let them reenter back into daycare?

[JJPlaycare]

So the childs cardiologist called me back and assured me that he would be just fine in childcare. I was able to explain to her how many children I care for and our activity level. She went on to tell me that they are treating his heart with meds now to prevent problems in adulthood. She said that he wouldn't need special care or extra attention because of it. His syndrome is still undetermined. As far as the RSV she said it is prevalent and you can't tell what it will or will not do as far as lasting effects on a child. His heart condition alone does not put him at any sort of risk of getting sick more often. Does this change your minds on whether you would take this child or not?

[Blackcat31]

So the childs cardiologist called me back and assured me that he would be just fine in childcare. I was able to explain to her how many children I care for and our activity level. She went on to tell me that they are treating his heart with meds now to prevent problems in adulthood. She said that he wouldn't need special care or extra attention because of it. His syndrome is still undetermined. As far as the RSV she said it is prevalent and you can't tell what it will or will not do as far as lasting effects on a child. His heart condition alone does not put him at any sort of risk of getting sick more often. Does this change your minds on whether you would take this child or not?

I guess I can't answer about whether or not this would change my mind about caring for him but I did want to say that I am glad to hear that you were able to talk directly with the cardiologist.

I guess the info can't get any clearer than directly from the person who would know right?

[itlw8]

I would take the child. At this stage caring for him is no different than any other infant.

And if something else comes along you just deal with it.

Truthfully family childcare is one of the best placements for children with special needs or special medical needs. Why? because of one consistant provider.

I think back to my special friend that had a bleed on the brain at birth. Yes it was extra work but I know I made a difference in his life.

[JJPlaycare]

The syndromes they are testing him for are Marfans and Loeys Dietz.

[JJPlaycare]

So we came to the agreement that until things were set up with a clear plan of care they would remain out of care. We decided 2 weeks ago that a start up date for them would be Feb 28. By that day they would know the syndrome and have a pretty good care plan set up. We decided to do a 2 week trial period to see if it is going to be a good fit and I can provide and feel comfortable caring for him. I talked to the cardiologist as well who reassured me that he would be just fine in daycare and that they were treating him with meds now to prevent adulthood issues. She said he wouldn't need any special care from me and there wouldn't be a problem. The parents are going to have to bring him into appointments probably monthly to monitor his aorta which is twice the size that it should be. The medications slows his heart rate, which in turn slows his blood flow to stop the stretching of the aorta. All would be good at daycare and for me and they were taking all these precautions to prevent later adulthood problems is what she told me!
So last Monday he had an appointment and they declared the syndrome was indeed Marfans. They basically were told that no two people are alike with Marfans, so it is going to be a waiting game to watch how he develops to see if or when he needs anything regarding the syndrome.
Last Wed. I get a text that his echo gram came back and showed a little more stretching of his aorta and now he has a leaky valve and if your valve is leaking your heart is leaking. She said no big deal just something we need to keep monitoring.
After talking to the cardiologist I was feeling quite reassured and felt that this was something I could do, but now I am back to feeling like no this is a big deal and back to all my original emotions and now I am questioning what the cardiologist said......

[MarinaVanessa]

Only you know what you alone are capable of handling. If you think that you'll be a complete nervous wreck when this child comes to your DC then maybe you just simply say that. It looks to me like you have handled everything very well and have done extensive research. The only thing that I would require before the infant starts is to have the cardiologist write everything that he told you down. Everything in writing.

Have the parents create that plan of action for you which they will sign which will include everything that could possibly happen during daycare hours (aorta rupturing etc) and have them sign that they understand that this could very possibly be a reality. At least that way you are protected legally. The parents are pretty much saying that they understand that something could possibly happen at any time and at least the liability portion of this issue doesn't weigh on you.

Other than that, if the cardiologist has ensured you that the infant won't need additional attention than any other infant then I personally wouldn't see any reason to say no. If I woudn't need any additional staff, time or equipment and I was given everything in writing I'd have a hard time finding a reason to say no. But that's just me. What do YOU feel? Because that's what's important.

[Daycare Diva]

If your heart is leaking blood how can that not be a big deal? What happens when he gets upset and cries.? For me anything dealing with the heart is a scary situation.

[Blackcat31]

Honestly, if I were uncomfortable in any way, I would just decline to provide services for that reason. I would say that I didn't feel equipped to manage his care.

I know it sounds as though there is no risk and I am not arguing that there is or isn't....just that if YOU don't feel comfortable, then you shouldn't do it at all.

That is a lot of stress and I know I too, would be so worried all the time. What if this? What if that? etc etc etc....

[JJPlaycare]

I just feel that the family is viewing this as "not a big deal". The cardiologist was VERY reassuring in everything she said, but then a week later "oh there is more stretching and oh now we have a leaky valve!" I thought we were treating him for adulthood issues like she said and now here we are a week later with new worsened conditions! Which in turn tells me that they don't have everything figured out like she said!! I have told them I don't feel comfortable and all of it. I agreed to talk to the cardiologist which after talking to her changed my mind a little bit, but now after the worsened state she texted me and said in there "no big deal", "just a little something to monitor", "should be fine" I am back to feeling overwhelmed again and now I feel stuck because I agreed to the 2 week trial period! I guess at the start of the 2 weeks I will say this is your 2 week notice, cause I don't think I can mentally handle this!!

[MarinaVanessa]

Well the beauty of the 2 week trial period is that during that time either of you can cancel childcare at any tome without notice. If you don't even want to begin care then just say so. If you want to try it for 2 weeks then do it and know that at least you have until day #14 to cancel the arrangement with no notice. If you do okay and want to keep trying it out after the 2 weeks you can also always change your mind and give them 2 weeks notice. Just remember that a 2 week trial period is exactly that, a trial period. No committment, no termination notice, nothing. You don't have to give notice of termination during this time. You can tell them on day #3 "You know what, it just isn't working for me. This is your last day."

[Blackcat31]

I just feel that the family is viewing this as "not a big deal". The cardiologist was VERY reassuring in everything she said, but then a week later "oh there is more stretching and oh now we have a leaky valve!" I thought we were treating him for adulthood issues like she said and now here we are a week later with new worsened conditions! Which in turn tells me that they don't have everything figured out like she said!! I have told them I don't feel comfortable and all of it. I agreed to talk to the cardiologist which after talking to her changed my mind a little bit, but now after the worsened state she texted me and said in there "no big deal", "just a little something to monitor", "should be fine" I am back to feeling overwhelmed again and now I feel stuck because I agreed to the 2 week trial period! I guess at the start of the 2 weeks I will say this is your 2 week notice, cause I don't think I can mentally handle this!!

Since they already know what it is (Marfans).....do YOU have a family physician that can give you advice about the condition itself?

Maybe your own doctor could give you some unbiased information and/or advice. I don't mean to divulge any personal details or break confidentiality, just ask him in general what he thinks the risks (if any) there are?

Kind of like a second opinion.

Because the parents keep saying it is no big deal, do you feel like they could be being less than completely honest with you?

[JJPlaycare]

I honestly feel like they just don't know. Its not a question of being honest or not. I have done my research on the heart condition as well as the syndrome. They have not and were honest that they havent researched about the syndrome because they wanted to get a diagnosis first before looking into the syndrome. After talking to the cardiologist myself I think she is the one making them feel and talking about it like its no big deal, because she made me feel that way because she said "they are treating him now to prevent adulthood issues" however I research online on medical worthy pages, his heart has worsened and now I am feeling that she isn't making it seem or sound like a big deal, but indeed it is. I am unsure why she is being so mild about it with the parents as well as me, but I think that is why the parents are acting the way they are and its not a question of being honest.