F had a follow-up appointment with his primary care doctor. I'm really starting to like his doctor. I still miss his pediatrician Dr. Faro. She was amazing, but Dr. Lee is really starting to grow on me more and more. First, I love how he addresses F. He speaks to him directly even though he may not always get a response form F. I think F can be intimidated sometimes bydoctors. Doctor's tend to make judgments about his level of intellect. So F may go into his "safe" mode and that is sit quietly, don't make eye contact. Another thing about F, he is thoughtful and introspective. He tends to absorb and process information slowly before making any decision (I wish I had this quality). We constantly have to verify that he "wants to think about it" and ask again later.
I'm getting off track about how Caroline saved the day. At the ER when they were running labs for Forrest I heard Caroline's voice in my head "repeat the chemistry panel, waiting a month might be too long" so I made the request. Thank goodness she planted that seed. His potassium was slightly below normal 3.2 (3.5 to 5.0 normal range). I had made a follow-up appointment with his doctor after the urgent care visit Saturday night. Then we end up in the ER on Tuesday night. In speaking with Caroline about, "Should I cancel primary if we get into ENT?" She said "you need that appointment with primary care to discuss his potassium." Her theory has been that due to his bowel care routine (he has a cecostomy tube) he's being depleted of valuable electrolytes. Thank goodness she reminded me. I was over focussed on the abscess.
Here's background info on the potassium:
F spent a week on potassium supplements after being a 3.0 after a chem panel when he was sick with fever/cough the few days after the Super Bowl. Again, due to Caroline planting the seed that when he's sick and on that Modified Atkins neurology needs to be contacted because he's blowing ketones. I can't really wrap my head around the "blowing off ketones" concept, but I've learned not to doubt her. I contacted neurology and they ordered labs to check his ketones and his chemistry. I had also made the appointment with another doctor at the office for an evaluation. I like them to get a baseline in case he takes a turn for sicker. He's susceptible to pneumonia because he's immobile, has asthma, and his lungs aren't that great. They did a chest x-ray (it had been over two years since his last!!!!) which was clear.
Later in the morning Janet, from neurology, calls about his potassium. "His potassium is low, please let his primary doctor know so that he can supplement if he needs it." Thank you, Caroline! I wouldn't have called neurology it simply wasn't on my radar. Labs wouldn't have been done low potassium not discovered.
Back to today's visit at the doctor today. He looks at the abscess and it doesn't think it needs further lancing. We are directed to continue with hot compresses and maybe the remainder will drain, but relieving the pressure and some of the pus has clearly allowed the antibiotic to do it's job. So far the cultures are coming back for staph. No shock there. He does want us to get into ENT so that they can excise the cyst, but he states he suspects F is susceptible to them and it could happen again. Bummer :(
Then onto the potassium discussion.
Dr. asks, "Does he have diarrhea often?"
I respond, "No, just his bowel care routine which includes this solution 1100 cc water, 1.5 teaspoons of salt, 10 cc milk of mag, and 40 cc of castile soap."
Caroline says, "You are inducing diarrhea."
Snap to reality! Connection made. I finally get it. I've been wondering why bowel care affects his electrolytes so much. Thinking it all has to do with the salt. When in all reality it's the fact that we induce diarrhea for several hours. Then we do it again in a couple of days. This is part of his care. It's worthy to note that Caroline has been working the electrolyte issue with me since she's been here. I just wasn't getting it until today.
F has had that cecostomy tube since he was around 8 years old. We used to do bowel care every day for years. He'd be so sick afterwards. Upon reflection I realize that he wasn't just sick he was dehydrated and his electrolytes were off. We'd give gatorade and other electrolyte drinks to help with the extreme nausea afterwards wanting to prevent dehydration, not even realizing we induced it. We never made the connection to the nausea and electrolyte imbalance to what the solution did to his body. It also aggravates his seizures. Which of course makes sense.
Caroline finally worded things in a way that connected all the dots. She really just needed to dumb it down for me at that moment. She was also the first person to notice a connection with his seizures the following day after bowel care. I am so grateful. I look at how his seizures have improved so much with the diet. Perhaps adding potassium to his routine will help even more. I am so thankful for her knowledge in so many areas. I've learned so much from her.
Showing posts with label Home Health Nursing. Show all posts
Showing posts with label Home Health Nursing. Show all posts
Thursday, February 23, 2012
And the Decision is... Private School
Finally, we have weighed all options for C. She really wanted to go this private middle school. I have continued to look at alternative curriculum and other on-site charters. Although homeschooling her has been overwhelming this year, I'm deeply saddened by the thought of sending her away from 8 to 3 each day and add swim practice on top of that. My heart is heavy just thinking about her long days.
On Tuesday, C had her one on one interview at the private middle school. She was told that she is accepted. She called F and I as we were loading into the car for our trip to the Capitol. The joy in her voice was unmistakable. She was given many compliments and told that the school "chooses her for her many great qualities." She is SO excited and ready to return to a school campus.
We are thankful she has picked a school that is small and Christian based. They only have 250 middle school students on campus. That is a dramatic difference from a 1,000 or more in the public schools near us. I believe for C, Having faith and sharing it with others brings her a sense of peace. A sense that there is a reason for all that has happened in her family. The school also goes through high school. So if we can make it work she can graduate from there.
This decision is overwhelming and giving me a bit of anxiety. School doesn't begin until August. We do not live close to the school. It will be a commute. I may or may not have a nurse to assist with F. R (the hubby) works nights and doesn't arrive home in time to help in the morning. Without a nurse F would have to go with me each day. The thought of getting him up and out the door to get his sister to school is enough to exhaust me just thinking about it.
Our nurse put the bug in my ear that she may be relocating out of the area. I'm so sad for F, and us. She is a part of our family and we all love and adore her. He gets attached to his nurses, especially the ones who enrich his life so much. I'm sad because he will be at the mercy of our schedule, not his own if we don't have one in place by then. I'm torn about how to handle the situation. I also know that the sooner we start looking for nurses the better our chances are in finding one that will click with us or be trained by then. In home health nursing you sometimes get a lot of nurses you don't want, before you can get one you do want.
This is where I get discouraged in life. Discouraged because these are the moments that I realize I only have myself to count on. Sure I have a husband, but he has to work. Plus, he's accustomed to leaving most everything to me to figure out. He'll give his input on things and offer to help, but when it comes down to it he doesn't follow-through. He'll stick his head in the sand and CHOOSE to ignore a lot of things. He's influenced so many decisions and left me to carry the weight of almost all of them. I'll tell you they get heavy after awhile. Supportive family members... they don't exist. Friends... no one really comfortable or capable of caring for F. His care intimidates people...doctors and nurses included sometimes.
So for now, I will cheer C on. Cherish the remainder of this school year with her. Prepare to send her off in August. While trying to come up with a plan. I need a good solid plan how I'm going to manage this. One that that's good for her and for F. F is 18 and if he says he doesn't want to get up and drive her to school at 7:30 in the am. I really need to listen and figure out how to support him too. Think, think, think...
On Tuesday, C had her one on one interview at the private middle school. She was told that she is accepted. She called F and I as we were loading into the car for our trip to the Capitol. The joy in her voice was unmistakable. She was given many compliments and told that the school "chooses her for her many great qualities." She is SO excited and ready to return to a school campus.
We are thankful she has picked a school that is small and Christian based. They only have 250 middle school students on campus. That is a dramatic difference from a 1,000 or more in the public schools near us. I believe for C, Having faith and sharing it with others brings her a sense of peace. A sense that there is a reason for all that has happened in her family. The school also goes through high school. So if we can make it work she can graduate from there.
This decision is overwhelming and giving me a bit of anxiety. School doesn't begin until August. We do not live close to the school. It will be a commute. I may or may not have a nurse to assist with F. R (the hubby) works nights and doesn't arrive home in time to help in the morning. Without a nurse F would have to go with me each day. The thought of getting him up and out the door to get his sister to school is enough to exhaust me just thinking about it.
This is where I get discouraged in life. Discouraged because these are the moments that I realize I only have myself to count on. Sure I have a husband, but he has to work. Plus, he's accustomed to leaving most everything to me to figure out. He'll give his input on things and offer to help, but when it comes down to it he doesn't follow-through. He'll stick his head in the sand and CHOOSE to ignore a lot of things. He's influenced so many decisions and left me to carry the weight of almost all of them. I'll tell you they get heavy after awhile. Supportive family members... they don't exist. Friends... no one really comfortable or capable of caring for F. His care intimidates people...doctors and nurses included sometimes.
So for now, I will cheer C on. Cherish the remainder of this school year with her. Prepare to send her off in August. While trying to come up with a plan. I need a good solid plan how I'm going to manage this. One that that's good for her and for F. F is 18 and if he says he doesn't want to get up and drive her to school at 7:30 in the am. I really need to listen and figure out how to support him too. Think, think, think...
Wednesday, February 22, 2012
F made it to the Capitol
I'm so proud of F! He was determined to go to the Capitol today to be the face of someone who benefits from home care nursing. He took his new Maestro with him. We left the house at noon and did not return until almost 3:30. Which wouldn't have been possible without the amazing Farrell valve bag to help with his gas problems! (thank you, Caroline!)
We arrived downtown and drove, and drove, in circles looking for an accessible place to park. F has a Dodge Grand Caravan with a Braun Entervan lift. It requires a lot of space to accommodate F and the ramp (probably 8 feet at least). His wheelchair has such a long base. I kid you not, there is hardly any accessible parking downtown.The handicap spaces that were curbside had to be chosen by a moron when they chose the spaces to be designated for handicap parking and then painted. They were placed in front of trees. Seriously, trees! So even if I could park in the space, I'm not quite sure I wouldn't hit the tree with the lift. If I had room I'd then have to navigate F through dirt to the edge of the sidewalk. The other parking spaces near the handicap ones actually had sidewalk near them (Really? What were they thinking?). I finally found a space along another street that was on the end of the row. It wasn't handicap, but it was close to a parking lot and lined off so I could get F out. Then I noticed it was metered. I forgot my meter money! I had one quarter that gives me 12 minutes. I was hoping handicap plates wouldn't require meter money. I wasn't about to look for ANOTHER space!
We unloaded. hooked up F's Maestro. We called Andrew, the GM for our nursing agency. We headed toward the Capitol. We finally met up with Drew (Andrew) near the Capitol entrance. He explained everything to F and I about the interviews. He was also very thankful that we came. F was the only patient to attend on the agency's behalf. We went through security, which is always interesting with F due to the equipment. Security like all bags removed from the wheelchairs, but I'm not about to disconnect F's feeding pump and Farrell bag or his other supply bag. It's time consuming. The security officers were great about it. I'll say this Capitol security is much more kind to the disabled than the security provided by the local Sheriff's department at Family court (rude, unkind, and unprofessional). We head to our destination.
First stop was Assemblymember, Linda Halderman M.D.'s office. We met up with other representatives from other nursing agencies from surrounding cities. They too were here on behalf of their patients. F didn't get to meet the assembly member, only her staff member. I asked what F wanted me to tell them on his behalf. His message was about how much he appreciates having a nurse. How he gets a break from his parents as caregivers. He is more independent with his nurse than with us. He also wanted them to know his nurse has improved the quality of his life with the knowledge she has shared with him. He wishes that she could be paid a more competitive wage for the work she does. He also felt he would have better access to nurses if the wage were higher.
We left and went to another assemblymember's office. Met up with another agency employee who did his initial intake many years before. We again met with the assembly member's staff member. I helped F deliver his message. Then we packed up and headed home.
I couldn't be more proud of him. He was very tired from all the commotion and trying to use his communication device in the process. His select switch was a bit out of range and I forgot the tool to adjust it for him. He was tried and tried to select appropriate comments for the situation. He did really well considering its really his first day out with the device and I see it's potential. He didn't realize that he would get so tired moving around and trying to communicate. He is accustomed to just sitting at home practicing the scanning...not using it in real life situations. That brings another dimension to the device and a whole new level of fatigue.
F and I appreciated all the knowledge he shared with us about the waiver that funds his nursing. F is a part of what is called the EPSDT waiver. The funding for his nursing comes from Med-Cal. This program was set to have reimbursement rates cut last year that would have rolled back the reimbursement rate to 1993 rates. The rate has been the same since 2000. This portion of Medi-cal services only accounts for 1, yes ONE, percent of all Medi-cal funding yet it SAVES our state a lot of money. If memory serves me correctly a facility for F could cost up to $5,000 per day. This program $500 a day. I would like to add that although this program is funded by Medi-cal, we have private health insurance and they do not provide this level of care for F.
Drew walked us back to the car. He wanted to make sure we didn't get a ticket... and we didn't! So metered and handicap plates are covered! Whew! Thank you to Drew for the invite.
F and I appreciated the invite to Capitol. F would LOVE to do it again. I told him next time I'll make him a sign and bring it so that while he's standing (or sitting) in the halls he can advertise to the politicians and their staff walking the halls. This day made me realize why he wanted to retain his right to vote under his conservatorship. There is so much more to him than meets the eye.
We arrived downtown and drove, and drove, in circles looking for an accessible place to park. F has a Dodge Grand Caravan with a Braun Entervan lift. It requires a lot of space to accommodate F and the ramp (probably 8 feet at least). His wheelchair has such a long base. I kid you not, there is hardly any accessible parking downtown.The handicap spaces that were curbside had to be chosen by a moron when they chose the spaces to be designated for handicap parking and then painted. They were placed in front of trees. Seriously, trees! So even if I could park in the space, I'm not quite sure I wouldn't hit the tree with the lift. If I had room I'd then have to navigate F through dirt to the edge of the sidewalk. The other parking spaces near the handicap ones actually had sidewalk near them (Really? What were they thinking?). I finally found a space along another street that was on the end of the row. It wasn't handicap, but it was close to a parking lot and lined off so I could get F out. Then I noticed it was metered. I forgot my meter money! I had one quarter that gives me 12 minutes. I was hoping handicap plates wouldn't require meter money. I wasn't about to look for ANOTHER space!
We unloaded. hooked up F's Maestro. We called Andrew, the GM for our nursing agency. We headed toward the Capitol. We finally met up with Drew (Andrew) near the Capitol entrance. He explained everything to F and I about the interviews. He was also very thankful that we came. F was the only patient to attend on the agency's behalf. We went through security, which is always interesting with F due to the equipment. Security like all bags removed from the wheelchairs, but I'm not about to disconnect F's feeding pump and Farrell bag or his other supply bag. It's time consuming. The security officers were great about it. I'll say this Capitol security is much more kind to the disabled than the security provided by the local Sheriff's department at Family court (rude, unkind, and unprofessional). We head to our destination.
 |
| This is outside Linda Halderman's office |
We left and went to another assemblymember's office. Met up with another agency employee who did his initial intake many years before. We again met with the assembly member's staff member. I helped F deliver his message. Then we packed up and headed home.
I couldn't be more proud of him. He was very tired from all the commotion and trying to use his communication device in the process. His select switch was a bit out of range and I forgot the tool to adjust it for him. He was tried and tried to select appropriate comments for the situation. He did really well considering its really his first day out with the device and I see it's potential. He didn't realize that he would get so tired moving around and trying to communicate. He is accustomed to just sitting at home practicing the scanning...not using it in real life situations. That brings another dimension to the device and a whole new level of fatigue.
F and I appreciated all the knowledge he shared with us about the waiver that funds his nursing. F is a part of what is called the EPSDT waiver. The funding for his nursing comes from Med-Cal. This program was set to have reimbursement rates cut last year that would have rolled back the reimbursement rate to 1993 rates. The rate has been the same since 2000. This portion of Medi-cal services only accounts for 1, yes ONE, percent of all Medi-cal funding yet it SAVES our state a lot of money. If memory serves me correctly a facility for F could cost up to $5,000 per day. This program $500 a day. I would like to add that although this program is funded by Medi-cal, we have private health insurance and they do not provide this level of care for F.
Drew walked us back to the car. He wanted to make sure we didn't get a ticket... and we didn't! So metered and handicap plates are covered! Whew! Thank you to Drew for the invite.
F and I appreciated the invite to Capitol. F would LOVE to do it again. I told him next time I'll make him a sign and bring it so that while he's standing (or sitting) in the halls he can advertise to the politicians and their staff walking the halls. This day made me realize why he wanted to retain his right to vote under his conservatorship. There is so much more to him than meets the eye.
Monday, February 20, 2012
Lobby Day at the Capitol Tomorrow
I almost forgot F has an appointment at the Capitol tomorrow. I'm hoping he will feel up to it since he has that huge abscess on his face near his jawline and ear. It's big enough that it could be pulled up on "Google Maps" as his teacher said today. Good thing F has a sense of humor!
We are supposed to go and talk with some of the legislature about the importance and benefits of home health nursing. I don't think it will be too hard to tell them how much help the nurse is and how I'd become a complete hermit without one. How F's health has dramatically improved because our nurse is smart and knowledgeable about useful things and not what network or channel Jerry Springer is on.
I'm excited to go with F and his nurse, but also very nervous. Usually, I would do these things alone with photos of my children. This time, F wants to go. I hope it is a positive experience for him. If anything it's an opportunity for him to try his new Dynavox. I just pray he feels better tomorrow.
We are supposed to go and talk with some of the legislature about the importance and benefits of home health nursing. I don't think it will be too hard to tell them how much help the nurse is and how I'd become a complete hermit without one. How F's health has dramatically improved because our nurse is smart and knowledgeable about useful things and not what network or channel Jerry Springer is on.
I'm excited to go with F and his nurse, but also very nervous. Usually, I would do these things alone with photos of my children. This time, F wants to go. I hope it is a positive experience for him. If anything it's an opportunity for him to try his new Dynavox. I just pray he feels better tomorrow.
Saturday, February 4, 2012
Home Health Nursing
I don't think many people realize that there is a field of nurses dedicated to only working in patient's homes. They choose this field for many reasons. Some are LVN nurses in school working on their RN. Some are mothers who need flexible schedules and less stress. Some work in this area to dedicate themselves to one patient knowing that they can improve the quality of one patient's life. These are usually the great nurses. There are also a lot of really bad nurse in home care. The ones you don't want working in your home. It used to be that there were more good nurses available, but through the years they are becoming fewer and fewer.
My son has been eligible for nursing care for many years because his health needs are extensive and so is his dependence. We've had MANY nurses come through our home. It will be two years in May that my son's nurse, Caroline, has worked with us. I know my son is thankful to have her assistance. He gets a break from me as the "not so great" assistant/caregiver (because I'm unable to cater to his every whim). He knows that Caroline comes each day to help HIM with all of his needs while she is here during her shift. She helps give him control and independence over his day. She has given input and suggestions that have helped improve the quality of his daily life. She treats him with dignity and respect. They have a nice friendship together and I know that he is thankful to have her.
I am thankful for Caroline, because she does all of those things for my son. She allows him to be him. She supports his interests, his goals, his independence, and she understands his method of communication and they work well together. I appreciate the break I get to do things away from my home that I cannot do when I'm caring for him. My daughter and I can spend time together and we can do things we enjoy doing without worrying about stopping for medications or respiratory care. I've even considered returning to school. Caroline supports us all. She brings something good to each one of us and we are thankful.
What saddens me deeply is that home health nurses are at the bottom of the pay scale. They work for agencies that do not offer retirement plans, sick pay, or vacation time. The hourly wage isn't competitive for their field. There really isn't any incentive for good nurses to work in home care. We have had some really amazing nurses come through our door. The good ones stay about a year , some longer. Eventually, they move on to another phase in their life. These great nurses know that they are providing a service to a patent that IMPROVES the quality of their daily life. They give caregivers and family members much needed breaks to go out and do things that normal people enjoy without even a consideration.
My life would not be the same without our nurse and neither would my son's. I think I'm a better caregiver for him because I get a break during the day. I'm also a better mother to my daughter. My son's care is extensive. I don't regret having him at home or the sacrifices that must be made to have him here with us. He and I just wish our nurses could have the option to have some of the basic benefits offered by many employers. Perhaps then we'd be able to have the same nurse for a longer period of time.
My son has been eligible for nursing care for many years because his health needs are extensive and so is his dependence. We've had MANY nurses come through our home. It will be two years in May that my son's nurse, Caroline, has worked with us. I know my son is thankful to have her assistance. He gets a break from me as the "not so great" assistant/caregiver (because I'm unable to cater to his every whim). He knows that Caroline comes each day to help HIM with all of his needs while she is here during her shift. She helps give him control and independence over his day. She has given input and suggestions that have helped improve the quality of his daily life. She treats him with dignity and respect. They have a nice friendship together and I know that he is thankful to have her.
I am thankful for Caroline, because she does all of those things for my son. She allows him to be him. She supports his interests, his goals, his independence, and she understands his method of communication and they work well together. I appreciate the break I get to do things away from my home that I cannot do when I'm caring for him. My daughter and I can spend time together and we can do things we enjoy doing without worrying about stopping for medications or respiratory care. I've even considered returning to school. Caroline supports us all. She brings something good to each one of us and we are thankful.
What saddens me deeply is that home health nurses are at the bottom of the pay scale. They work for agencies that do not offer retirement plans, sick pay, or vacation time. The hourly wage isn't competitive for their field. There really isn't any incentive for good nurses to work in home care. We have had some really amazing nurses come through our door. The good ones stay about a year , some longer. Eventually, they move on to another phase in their life. These great nurses know that they are providing a service to a patent that IMPROVES the quality of their daily life. They give caregivers and family members much needed breaks to go out and do things that normal people enjoy without even a consideration.
My life would not be the same without our nurse and neither would my son's. I think I'm a better caregiver for him because I get a break during the day. I'm also a better mother to my daughter. My son's care is extensive. I don't regret having him at home or the sacrifices that must be made to have him here with us. He and I just wish our nurses could have the option to have some of the basic benefits offered by many employers. Perhaps then we'd be able to have the same nurse for a longer period of time.
Subscribe to:
Posts (Atom)