So Friday was a bad day, Casey's nurse pulled out her tube and things were just really stressful. Then Monday came with a new nurse and things just seemed to go from bad to worse. I was so frustrated with the nurses by the end of the day Monday that I didn't even know where to begin to try and correct/better things.
I called the nursing service after the nurse left on Monday and told them the situation and that we were done with her. They started looking for more nurses for us right away. The only good thing that came out of Monday was a new secretion idea. She asked if we had ever used Scopolamine patches. I had never heard of this before. She said another patient she had used them to help reduce secretions and they helped this other patient a lot.
I did some research on Monday into the patches. It is kind of interesting. They are supposed to block/reduce neuro signals from the brain that generate saliva. It seems like the are most commonly used for other things, but if they work and we can avoid a huge impact from the possible side affects they are definitely worth a try.
Casey has 2 appointments yesterday (Neuro and ENT). Nancy was with us so at least I knew I had a nurse that knew Casey and that I trusted going with me. We went to Neuro first. Nancy and I were talking before the doctor came in and I asked her to be sure and remind me to ask about the patches when the doctor came in. It was so funny, the doctor came in and I am not kidding one of the first things out of her mouth was "Have we talked about the patched for Casey". We talked some about possible side affects and decided to go ahead and see how Casey does with them. Tim picked them up from the pharmacy this morning and Casey has one on now. It said it takes about 4 hours to see it work. Her 4 hours is up in about 30 minutes. We will see how she does this evening. The patch is one patch every 3 days. The doctor said I can change it more often if I need to or I can add additional patches (or halves) if I need to.
The doctor also went ahead and got Casey on the schedule for the September Botox rounds. We will be going in on 9/28 for her next round. We are supposed to see what we can do with the patches between now and then. If we can get the patches to help with the secretions then she can use more Botox in Casey's legs. If the patches don't work then she will use the majority of the Botox in her salivary glands again.
After Neuro we drove on to ENT. Casey had to get her Cholosteoma cleaned out. It was not to bad this time. She cried some, but not as much as the past few times. The doctor said it still needs to be watched but that it is stable. So not good, but also not bad.
The only negative from Casey's appointments yesterday was that she has lost some weight. I guess I was not totally surprised. She has been so leaky that I am sure she has lost a decent portion of the food we give her. I was sad that she lost weight, but not shocked. We just have to get this leak fixed and she will get back to putting on weight soon.
Nancy and I were talking about Casey's leaky tube (that is so much worse since Friday's incident). Nancy mentioned another patient of hers has the same problem. The other patient went into the hospital over night to have the tube taken out and an NJ Tube put in to allow the gtube stoma to heal a little. Just like Casey, there is never a good opportunity to take out the gtube since it is almost always in use. This sounded like a really god idea to me. This would be SOOO much better than having to have the entire gtube redone (major surgery). I called her surgeon to talk about possibly doing this.
This morning Casey's friend, Maya, and her mom, Elizabeth, came over to play. Casey loves to have friends come over. They live about an hour away so it is hard to see them often. It is always nice when we can find a way to see them though. We are going to try and plan a weekend trip for them to come over so Jason (the dad) can come too. Hopefully we can do that sometime soon.
After our play date we had a nurse come over for a meeting. She seemed really good, I liked her right away. She has some other stuff going on this week but will hopefully start working with us on Monday. For now they are looking to give her Monday and Tuesday, possibly Wednesday as well. I was so glad that she seemed to be a good fit.
I just got off the phone with Casey's surgeon. She liked the NJ idea for Casey. However before we go tot hat step we are going to try one more step here at home. They are going to send us a Foley Cath tube to use that will be much thinner than her tube. Casey had a Foley for the first few weeks after the Gtube surgery way back when. We will put it in then dam it up with gauze and what not and leave it for 24-48 hours. Hopefully that will help the stoma close up a little so that when we go back to her Gtube the stoma is a much tighter fit around the stem. Then if this is still not enough, then we can look at doing the NJ as the next step. Either way, both of those ideas sound fabulous when compared to having the Gtube completely redone. I am very happy to have some new options to work with.
That's about it for now. I guess that is actually a lot for a post. As always we hope everyone is doing well. I will post more about nurses and Gtube leaks as we go. Hopefully I will have good news to post.
Wednesday, August 26, 2009
Monday, August 24, 2009
Nursing Woes
Oh man, it is so hard to get the right nurse. We interviewed/met a bunch over the past month. Out of them all there was 2 that I really liked and 1 that I was on the fence (just couldn't read her in our meeting). We hired my favorite (Michelle) but sadly Michelle is a school nurse and was only available for 2 weeks then had to return to her main job.
Second was Angela. Angela started on Wednesday and worked Wed-Fri last week. I like her, but she is not perfect. She is a little careless and that scares me a lot. The first few shifts that a nurse is here I am right by their side the entire time to be sure that I show them how things work, what to look for, listen for, etc. On the 3rd day (Friday) I backed off some. I was home, but in the other room most of the time to let her go mostly on her own. Around lunch time I heard the dreaded "Oh, no" coming from the play room. It was shortly followed by a "Marty, can you come quick?" Neither of those phrases are ones I like to hear. I ran to the play room to find that she had not been paying attention and had sat on Casey feed line. She scooted back to get a toy and took the line with her, hence pulling the tube right out of Casey's stomach. UGH!!!! I was so mad. I yelled some about how she needs to be careful and pay more attention. I went on to tell her how important it is so always be aware of EVERYTHING when dealing with special needs kids. A small mistake can lead to huge trouble so quickly. She felt awful and apologized over and over again. I know she did not do it on purpose. However, it was an accident that could have and should have been avoided. We had Casey at home and in our care for over 3 years before I did that. This was her 3rd day!!!! I know accidents happen, but she has to be more careful. I did not send her home. I will give her another chance. If she remains to be careless and inattentive to these things I think we will have to start looking for yet another nurse.
My 3rd choice in nurses was Manuela. I could not get a read at all on her so she was on my maybe list. She was supposed to come for a shift last week (Tuesday) but called in sick on her first day. This was not a good sign, but these things happen. We had a nurse a while back that was supposed to start. She called in sick on day 1 then on day 2 she called the office and said the drive is just too much and she won't be coming ever. Manuela's day 2 is today. I was told she would be here from 8-4. At 8:30 she was still not here so I called the office. They told me there was a scheduling miscommunication and that she would be here at 9. Okay, I don't have the details on this so I won't hold it against her. She got here at 9 and seemed mad to be here, kind of a weird vibe. I went ahead and started showing her how things work around here. She doesn't seem to agree/approve of how we do things. Everything that I show her for Casey she has given me a condescending look after I give her the instructions. She has already started with the tracheotomy questions (not knowing anything about the situation). After she asked about it and I said the simple, no we do not want that for her the benefit would not be worth it for us she gave me this look like she thought I was crazy. I then had to go on with more explanations that still were not enough for her. She forced me to get into the quality of life details and things that are really none of her business. I do not need to deal with this. My original maybe on her is quickly becoming a no. I could not read her before, but the vibe I am getting from her today just is not a good one at all.
I guess for now we just have Angela. I need to keep interviewing more to find someone to fill my other shifts. Manuela is not the person for the job. Just 3 more hours and her shift is done. I am looking forward to the end of this shift. I will be asking that she not come back.
Nancy is here tomorrow. We like Nancy; she was Casey's backup nurse for the past 8-9 months. We just found out that tomorrow is her last day in home health so we lost her too. I need to find another really good nurse to split the week with Angela. If I like the other nurse better maybe I can give him/her the majority of the shifts and have Angela as a backup. Either way, I need to get some more nurses over to interview.
Second was Angela. Angela started on Wednesday and worked Wed-Fri last week. I like her, but she is not perfect. She is a little careless and that scares me a lot. The first few shifts that a nurse is here I am right by their side the entire time to be sure that I show them how things work, what to look for, listen for, etc. On the 3rd day (Friday) I backed off some. I was home, but in the other room most of the time to let her go mostly on her own. Around lunch time I heard the dreaded "Oh, no" coming from the play room. It was shortly followed by a "Marty, can you come quick?" Neither of those phrases are ones I like to hear. I ran to the play room to find that she had not been paying attention and had sat on Casey feed line. She scooted back to get a toy and took the line with her, hence pulling the tube right out of Casey's stomach. UGH!!!! I was so mad. I yelled some about how she needs to be careful and pay more attention. I went on to tell her how important it is so always be aware of EVERYTHING when dealing with special needs kids. A small mistake can lead to huge trouble so quickly. She felt awful and apologized over and over again. I know she did not do it on purpose. However, it was an accident that could have and should have been avoided. We had Casey at home and in our care for over 3 years before I did that. This was her 3rd day!!!! I know accidents happen, but she has to be more careful. I did not send her home. I will give her another chance. If she remains to be careless and inattentive to these things I think we will have to start looking for yet another nurse.
My 3rd choice in nurses was Manuela. I could not get a read at all on her so she was on my maybe list. She was supposed to come for a shift last week (Tuesday) but called in sick on her first day. This was not a good sign, but these things happen. We had a nurse a while back that was supposed to start. She called in sick on day 1 then on day 2 she called the office and said the drive is just too much and she won't be coming ever. Manuela's day 2 is today. I was told she would be here from 8-4. At 8:30 she was still not here so I called the office. They told me there was a scheduling miscommunication and that she would be here at 9. Okay, I don't have the details on this so I won't hold it against her. She got here at 9 and seemed mad to be here, kind of a weird vibe. I went ahead and started showing her how things work around here. She doesn't seem to agree/approve of how we do things. Everything that I show her for Casey she has given me a condescending look after I give her the instructions. She has already started with the tracheotomy questions (not knowing anything about the situation). After she asked about it and I said the simple, no we do not want that for her the benefit would not be worth it for us she gave me this look like she thought I was crazy. I then had to go on with more explanations that still were not enough for her. She forced me to get into the quality of life details and things that are really none of her business. I do not need to deal with this. My original maybe on her is quickly becoming a no. I could not read her before, but the vibe I am getting from her today just is not a good one at all.
I guess for now we just have Angela. I need to keep interviewing more to find someone to fill my other shifts. Manuela is not the person for the job. Just 3 more hours and her shift is done. I am looking forward to the end of this shift. I will be asking that she not come back.
Nancy is here tomorrow. We like Nancy; she was Casey's backup nurse for the past 8-9 months. We just found out that tomorrow is her last day in home health so we lost her too. I need to find another really good nurse to split the week with Angela. If I like the other nurse better maybe I can give him/her the majority of the shifts and have Angela as a backup. Either way, I need to get some more nurses over to interview.
Thursday, August 20, 2009
Latest Updates
What a month it has been. We had a ton of appointments this month but I have rescheduled them all since we have not had nursing in place. Maritza left us the last week in July. We had Michelle for 2 weeks. Michelle had just started to get used to taking care of Casey when she had to go back to her other job with the school. UGH!!! The service we use for nursing sent a few out but none that we loved. Finally last week they sent out one that was a good fit. FINALLY!!! Her name is Angela and she started yesterday. Casey seems to like her. The only thing is that she has another job as well so she can only work 3 days a week. So we still need to find another nurse to pick up at least 1 more day a week. Hopefully we will find someone for that extra shift soon. Next week Angela has some other stuff that she has to do so next week we are back to no one (just for the week though). This week, then starting the week after next we will have 3 shifts (Wed, Thur, Fri) each week. We are trying to get someone to pick up Tuesday. I really miss Maritza and just want to get back to a normal routine. Casey has another nurse that works from time to time to fill in for her primary nurse. She picked up a few shifts each week after Michelle left. She will be here at least 1 day next week. However, I just found out today that next week is her last week. She no longer wants to work home health. I am hopeful that we will find another filler to take Tuesdays and cover when needed.
We start a round of doctor appointments soon. I am sure we will be talking about trying the next round of Botox soon too. I will post updates as we get them. Casey is doing well. As always we hope all of you are doing well too.
We start a round of doctor appointments soon. I am sure we will be talking about trying the next round of Botox soon too. I will post updates as we get them. Casey is doing well. As always we hope all of you are doing well too.
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