Small Talk: The Prayer Closet

[wanderwoman]

I don't know if you were able to get a good answer about the myelinization and how it created seizures, but it means that the linings on the nerve endings haven't been fully made yet, and thus the chances of the brain "short circuiting" (ie, a seizure) are much higher during childhood than any other time in life. As the nerve endings are coated, the brain runs smoother. It's the main reason people grow out of seizures as they get older, and the reason it's difficult to track is that the brain is like a big spider web. Maybe someday Maisie will hold a gavel in her hand! :)

Thank you! That makes sense. I kept hearing "myelin" and thinking of the movie Lorenzo's Oil. I didn't know it was the same basic issue in epileptics.

I actually thought the same thing, and in fact, thought Wanderwoman should consider taking her posts and perhaps write a book. It would be so helpful to other mothers and families who share the same journey. Your posts are so well written with raw honesty and vulnerability.

Thank you for the feedback. I'm not sure I'm a good enough writer and I think it would be at least two years before I could process this journey enough to write about it effectively. I had been thinking of starting a blog, but I'm not a blogger by nature. My husband is in law enforcement so things like Facebook and blogging worry him. As he eloquently stated once, "if I arrest someone, I don't want their friends knowing my wife and child are having an ice cream cone at Ben and Jerry's." Of course, maybe I can get Jessa, the AUTHOR, to ghost write my book? Lol.

Today is my ride along day. I promise I will be on my best behavior and try not to leave the patrol car for donuts and potato chips if the officer tells me to stay in the vehicle. I might get a little upset if I do not get a junior police sticker.

Make sure to you ask if you can illegally use the radar gun and sirens. Make Jim Bob proud!

Maisie is having a good day. I was thinking about it, because it's gorgeous weather today, and I realized my child has never seen the sun. She has never felt it's warmth or smelled the wildflowers. I can't wait for her to be discharged.

I will try to check in later but DH is here for the weekend. FFH (full frontal hugs) to you all.

[msblossom]

Thank you for the feedback. I'm not sure I'm a good enough writer and I think it would be at least two years before I could process this journey enough to write about it effectively. I had been thinking of starting a blog, but I'm not a blogger by nature. My husband is in law enforcement so things like Facebook and blogging worry him.

You're good enough. You have all the right stuff that it takes to author a book about your experiences along with all your well written and poignant posts. Save, them, print them and put them in a safe place and when you're ready you can use them later. You express yourself so well and you've taken us all on a journey with your writing and that's what a good author does, they tell a story and make us feel like we're right there with them. I can't remember who it was, maybe Gilbert Blythe who told "Anne", to write about what you know...and write and write and write. If you can't do a blog then maybe write about your experiences to parenting magazines. I'm not an author, but I am an avid reader and you, Wanderwoman, have a gift. :)

Edited March 14, 2015 by msblossom

[Almost 3000]

DP

It was worth a DP :)

[amitville]

Thank you! That makes sense. I kept hearing "myelin" and thinking of the movie Lorenzo's Oil. I didn't know it was the same basic issue in epileptics.

Thank you for the feedback. I'm not sure I'm a good enough writer and I think it would be at least two years before I could process this journey enough to write about it effectively. I had been thinking of starting a blog, but I'm not a blogger by nature. My husband is in law enforcement so things like Facebook and blogging worry him. As he eloquently stated once, "if I arrest someone, I don't want their friends knowing my wife and child are having an ice cream cone at Ben and Jerry's." Of course, maybe I can get Jessa, the AUTHOR, to ghost write my book? Lol.

Make sure to you ask if you can illegally use the radar gun and sirens. Make Jim Bob proud!

Maisie is having a good day. I was thinking about it, because it's gorgeous weather today, and I realized my child has never seen the sun. She has never felt it's warmth or smelled the wildflowers. I can't wait for her to be discharged.

I will try to check in later but DH is here for the weekend. FFH (full frontal hugs) to you all.

Wanderwomen yor posts about our Maisie come from the heart with every emotion I celebrate every step forward and get all misty eyed on ever step back. I to would like to pre-order also. Enjoy some time with your husband. sending a ffh right back to you and yours

[Wok Chop]

Wanderwoman, it's too bad that you don't plan on broadcasting your full name, phone numbers, and home address like the Duggars have. I was planning on renting a large bus, loading up the gang here, and heading over to your place the moment you bring Maisie home. I can only imagine how blessed you would feel watching my big bus pulling up and honking loudly to proclaim our arrival! ...oh, hey, would your husband let me do a ride along? Oh, just picture the silly hijinks that would ensue!!!

[Wellfleet]

You're good enough. You have all the right stuff that it takes to author a book about your experiences along with all your well written and poignant posts. Save, them, print them and put them in a safe place and when you're ready you can use them later. You express yourself so well and you've taken us all on a journey with your writing and that's what a good author does, they tell a story and make us feel like we're right there with them. I can't remember who it was, maybe Gilbert Blythe who told "Anne", to write about what you know...and write and write and write. If you can't do a blog then maybe write about your experiences to parenting magazines. I'm not an author, but I am an avid reader and you, Wanderwoman, have a gift. :)

 

Agree wholeheartedly with both msblossom - and your husband. I'd say no to the blog - I think your husband's right - but would LOVE to see you do a book someday - when you feel like it. Saving all your posts is key. When and if you ever get it into your head to try doing a book, just re-reading your posts will probably propel you right back to these days in the NICU with Maisie better than anything else. And provide some inspiration too, I bet. I enjoyed your posts here and felt you were very articulate long before Maisie came along... what you've written about your journey with the Little One has just confirmed it. God bless...

Edited March 15, 2015 by Wellfleet

[bigskygirl]

I'm back!!!  I am so proud and impress with the police department, and I am so glad I sign up to be a volunteer. I got to ride with three officers. The first officer was fun, and he has a good sense of humor. Sadly, the first call we went on was for a nineteen year old man who might have been going though meth withdrawals and was at a reported drug house. He did not want medical call in to check him out, so another officer took him to Urgent Care. He put handcuffs on the guy because he was a possible danger to himself and others. His family and adoptive family kicked out of the house and have been trying to get him help. It breaks my heart thinking about him, and I hope he finally gets the help he needs.

 

The officer was able to turn on the camera inside the patrol vehicle so I could hear the conversation he was having with other people and officers, and he showed me the computer system also. Interesting how he was able to look up things with the computer. It was funny to see how people were driving near us when they saw the patrol car. He did one traffic stop for speeding with a warning and no ticket. There were a few minor calls with hardly any problems. He had something to do for a short time so I went to ride with another officer.

 

The second officer look like he just graduated from college. He was nice with a good sense of humor. We drove around a little, and the first call (back up for a possible suicidal teenager) we went to was exciting. There is nothing like going down a busy street and side streets with lights/sirens at a good rate of speed hoping and praying people will yield the right away at lights and intersections. We pulled up at the house, and I was told to stay in the vehicle. The poor officers were having a hard time finding the young man, but within a few minutes the one officer was able to find him. We left the scene, and we had an interesting conversation about drivers and pulling over for emergency vehicles.

 

The next call was a possible fight in progress.  A person called in and said a woman was trying to cause some problems for his mom. Luckily, nothing serious happened, and everyone walked away in a better state of mind after talking with the two officers.

 

The first officer I was riding with came to this call, so I went back to riding with him. We were driving around until the next call came in. This call was intense and scary. A girl called her parents crying and upset over the fact her boyfriend was abusing her. The officer I was riding with told me he was called to the same address before for possible domestic abuse. Once we arrived, the officer talked to the girl on the cell phone. He wanted to try to help her and was concerned for her safety so I was told to say in the vehicle, and the officer was able to use the camera so I could hear him talk with the poor girl. Another officer arrived on the scene and was also talking with her. I was so impressed with the caring and handling of the situation by the two officers. I grew up with domestic abuse so this one hits home with me. The poor girl was scared and did not want to admit she was threaten and abused by her boyfriend. After a few minutes of talking, she started to open up a little. I was trying so hard not to start crying, jump out of the vehicle, hug her and let her know someone cares and understands what she is going though. The scary part was seeing the boyfriend walking up to where the girl and two officers were standing and talking. I think my heart stopped for a few seconds, and I was scared for her and the officers. Thankfully around this time, another officer arrive on scene. After a while, the boyfriend was arrested for PFMA? without the young lady bringing charges against him because Montana law says an officer can make an arrest without the victim doing so. He was not too happy about it. I did not see the guy get booked into the detention center by the other officer, but I am hoping and praying she will seek help and assistance with domestic abuse organizations. I think I may have embarrassed the officer I was riding with when I told him I was so impress with him and the other officers with the way the whole situation was dealt with. He was worried the guy was going to resist or take off running. I also hope her family will be there with her, and she gets away from this creep. Training and experience was certainly at top form with this call. The boyfriend also has a history in another state with domestic abuse and shooting someone in the leg.

 

We went back to the station, and I went to ride along with the third officer. He look like he just graduated from high school, was a little more serious, but nice with a good sense of humor. Today he was doing an eighteen hour shift. *bows to him in amazement* We sat down at a computer at the station where he showed me how they did the reports. It was interesting how he grew an illustration of a rear end vehicle accident on the system. He did pull someone over for talking on his cell phone and did not stop at an intersection where people were waiting to cross. The person did end up with a citation for this since he could have ended up hitting a person at a crosswalk. We went on a few non serious calls before I headed home.

 

I was tired at the end of the nine hours, but I am sure the officers were more tired than I was. We have a great group of officers who love their jobs and want to help others. I came away more proud, impressed, and in awe of these amazing men and women.

[msblossom]

Wow, bigskygirl, that was an interesting experience! What a full day you had, emotional, full of excitement and a first hand account of what your officers do on a daily basis. It's so fascinating to me all that they encounter and how level headed and wise they need to be to take control and diffuse intense emotional situations. I was an executive secretary for the chief of police for 3 years and I really enjoyed working with our police officers and hearing about all the calls they went on. I have so much respect for what they do! Thank you so much for sharing with us! How long have you been volunteering for the police department and what kinds of things do you do, if you don't mind me asking?

P.s. I just have know -- did y'all make a donut run?

Edited March 15, 2015 by msblossom

[Barb23]

Bigskygirl - Thanks for sharing your exciting day with us. If I were you, I wouldn't be able to sleep tonite, my adrenaline would still be pumping. As my mother would say, thank goodness there are people out there that make it their job to want to protect us 24/7. On a side note, I'm glad you stayed in the car when instructed & didn't feel the need to get yourself donuts & snacks.

[Abstract]

I had to post in this thread to let you all know that my place of employment just hired a College Plus graduate. So yes, people do actually finish degrees with it and can even go on to get jobs. (I still think it's a ripoff because figuring out what CLEP tests you need for a given school is not rocket science!)

[bigskygirl]

msblossum, no donut run *lol* The second officer did pull into a gas station/convenience store parking lot to talk to someone about a possible scam on his cell phone. He brought some snacks for himself, and he told me the store had some good snacks (good information to know.)

 

I started being a volunteer last April. I was working on putting trespassing citation information on a excel spreadsheet in the system, but I have not been able to do too much because of medication sensitivity/high dosage and eye damage due to a medical condition. I did meet another officer yesterday, and he ask me about helping the CID (Criminal Investigation Department) with clerical work. I would love to, and I told him I will hopefully get a better picture about what is going on health wise in May. The one thing I do not care for is traffic control. Standing out in traffic on the center line with my hand out is scary. I was hit by a car the day before my fourth birthday and this can trigger some bad memories for me. I did help out with a live shooter training event last December, been out to the Law Enforcement Academy as a role player (watch a video of a crime and be interviewed by law enforcement agencies students,) and a mass casualty plane crash victim last September.

 

Btw, I was reading about other poster's vision results. My right eye is -3.75-3.50 x 004 and my left eye is -6.00 -2.00 x 172 My vision actually have been improving.

[wanderwoman]

It's really hard to watch DH leave on Sundays. I know that it's harder for him. He's such a good daddy already. He said the changes in Maisie are really notable when you spend five days away from her. I believe it. She seems bigger today. More mature or developed. The PT team brought in a bouncy seat today and said we needed to start handling her more. It's such a change from the early days when touching her caused her system to overload. From here on out, we are supposed to start doing her PT and OT and handle her like we would at home. The only problem is that we haven't had her home and we are first time parents. The neoneuro doctor said he sees some slight artifacts from an earlier brain bleed, but he didn't think we were dealing with epilepsy. He said some preemies have seizures due to fevers, autoimmune response issues, or certain stimuli well into their third year. That scares me. I don't want her to have epilepsy but knowing she's a ticking time bomb, with no known etiology, is daunting. On the bright side, he said she has a great pattern of activity and he doesn't see any reason that she will have long term problems. Her weakness should be corrected with physical therapy. Because one day, I hope, I won't remember this, I thought I would document a day in the life of Maisie.

I will do that tonight.

[wanderwoman]

6:00am: Maisie's night nurse comes in to do her vitals and gets everything prepped for her feeding. This requires a surprising assortment of items- some sterile, some not. Usually, this visit wakes me up and I go pump and wash up for the day.

6:15am: Maisie has noticed that the ambient lights have been turned up and starts waking up. She's usually not fussy. Just observant. We talk a little and I change her diaper. Night nurse usually flushes lines or changes her cannula. Maisie gets weighed using the in bed scale.

6:30 find us in a chair trying to work out our feeding. She nurses a bit or gets frustrated because pumping before a feeding means I don't flood her, but it also makes her stay coordinated and work a bit harder. While we are dancing this delicate feeding dance, the nurses change out her bedding and writes the date, the goals, and our schedule on our care board.

7:00 is when rounds start and the next two hours are a blur of different faces. We're at a teaching hospital so there are young and old faces. One young man, on the neonatal team, stops to measure our girl and takes growth notes. Then, there's the pulmonologist, neurological people, and pediatrics. It's busy.

9:00 is about the time tests start and Maisie is, at this point, pretty alert from all of the activity. Masks are still necessary for everyone but her primary nurse, daddy, and I, so I sometimes wonder if she thinks that's what people are supposed to look like.

10:00 roles around and we feed again. This process takes a while.

11:00 in this Nicu is shift change, so our day nurse appears. Massive gets to nap and does so very we.

1:00 is therapy time. OT is first. Her OT works on feeding (again) and usually brings a new toy to look at our music to listen to. They do there thing and then PT steps in and Maisie works out. Today's goal was getting her to grasp objects and stretch her muscles. She got a bouncy seat and everyone waited to see if she would drop her sats while in the reclined position (I'm told this is working up to a car seat). She liked it and promptly fell asleep when it was set to vibrate. Lol.

3:00pm is bath time or changing time. She used to get really cold really fast, so we had to hurry. She's now holding her temp well and self regulating so we get to watch her relax or wig out- however her mood strikes her that day.

4:00pm is feeding time again. She usual goes to sleep after.

5:00-6 is the start of afternoon rounds and her team meeting (every preemie has a primary team that goes over what's needed or what was done, labs, scans, progress). We've started reading after that and trying to do snuggle time. Since she's improving, they want us to hold her and handle her more- no need to ask me twice.

7:00 is a Skype with daddy.

7:15-7:30 is fall asleep on mommy time. Kangaroo style.

9:00 is weighing on the unit scale and changing into nightwear. She likes to have music or tv on. She's really observant at this point, too.

10:00 starts quiet time and we, along with every other family, stand in doorways and violate HIPPA laws with a NICU grapevine review of our days- trials and triumphs. We hope that the night stays calm and we a give each other knowing smiles because, even though we are still HERE, we are STILL here and we've seen others come and go. We hope against hope and the odds that our babies will "graduate". Those who have graduated and are back offer advise or warnings. Those who are still so far from graduation cry or worry and receive hugs or nods of complete understanding.

11:00 is night nurse switch and I usually get a minute to shower.

11:30: feeding again.

12:00 sleep

3am feed

6:00---do it all again.

Edited March 16, 2015 by wanderwoman

[fireice13]

wanderwoman

 

I work in healthcare and as long as it's the families talking and not the healthcare workers then it's not a HIPAA violation. Healthcare workers can't talk with other people about patients if they don't have permission, but family members can talk to each other all they want.

[amitville]

6:00am: Maisie's night nurse comes in to do her vitals and gets everything prepped for her feeding. This requires a surprising assortment of items- some sterile, some not. Usually, this visit wakes me up and I go pump and wash up for the day.

6:15am: Maisie has noticed that the ambient lights have been turned up and starts waking up. She's usually not fussy. Just observant. We talk a little and I change her diaper. Night nurse usually flushes lines or changes her cannula. Maisie gets weighed using the in bed scale.

6:30 find us in a chair trying to work out our feeding. She nurses a bit or gets frustrated because pumping before a feeding means I don't flood her, but it also makes her stay coordinated and work a bit harder. While we are dancing this delicate feeding dance, the nurses change out her bedding and writes the date, the goals, and our schedule on our care board.

7:00 is when rounds start and the next two hours are a blur of different faces. We're at a teaching hospital so there are young and old faces. One young man, on the neonatal team, stops to measure our girl and takes growth notes. Then, there's the pulmonologist, neurological people, and pediatrics. It's busy.

9:00 is about the time tests start and Maisie is, at this point, pretty alert from all of the activity. Masks are still necessary for everyone but her primary nurse, daddy, and I, so I sometimes wonder if she thinks that's what people are supposed to look like.

10:00 roles around and we feed again. This process takes a while.

11:00 in this Nicu is shift change, so our day nurse appears. Massive gets to nap and does so very we.

1:00 is therapy time. OT is first. Her OT works on feeding (again) and usually brings a new toy to look at our music to listen to. They do there thing and then PT steps in and Maisie works out. Today's goal was getting her to grasp objects and stretch her muscles. She got a bouncy seat and everyone waited to see if she would drop her sats while in the reclined position (I'm told this is working up to a car seat). She liked it and promptly fell asleep when it was set to vibrate. Lol.

3:00pm is bath time or changing time. She used to get really cold really fast, so we had to hurry. She's now holding her temp well and self regulating so we get to watch her relax or wig out- however her mood strikes her that day.

4:00pm is feeding time again. She usual goes to sleep after.

5:00-6 is the start of afternoon rounds and her team meeting (every preemie has a primary team that goes over what's needed or what was done, labs, scans, progress). We've started reading after that and trying to do snuggle time. Since she's improving, they want us to hold her and handle her more- no need to ask me twice.

7:00 is a Skype with daddy.

7:15-7:30 is fall asleep on mommy time. Kangaroo style.

9:00 is weighing on the unit scale and changing into nightwear. She likes to have music or tv on. She's really observant at this point, too.

10:00 starts quiet time and we, along with every other family, stand in doorways and violate HIPPA laws with a NICU grapevine review of our days- trials and triumphs. We hope that the night stays calm and we a give each other knowing smiles because, even though we are still HERE, we are STILL here and we've seen others come and go. We hope against hope and the odds that our babies will "graduate". Those who have graduated and are back offer advise or warnings. Those who are still so far from graduation cry or worry and receive hugs or nods of complete understanding.

11:00 is night nurse switch and I usually get a minute to shower.

11:30: feeding again.

12:00 sleep

3am feed

6:00---do it all again.

A day of life of our Miss Maisie and Mommy are just beautiful .   

[Catlyn]

Loved "Maisie's Day," Wanderwoman. So much to go through! Maisie's going to be an observant little thing. I'm glad that everyone else who is going through it are talking with each other, giving advice and support.

 

Count me in on you should write a book about the experience. You do write well, and it would be helpful and even reassuring to others who have or will be going through the same experiences. If you decide not to, you should at least keep your postings.

[Barb23]

Thanks for sharing Maisie's day with us & all I can say is WOW. I esp enjoy reading about her therapy. As I posted before, this just fascinates me what they do at her age. I think it's neat the OT brings in a different toy or music for her to work with & loved that she dozed off in her bouncy seat. Who doesn't want to take a little snooze after working out :)

I know we saw a limited time of Josie's stay in the NICU but somehow they came across as making it look easy. (Not sure if "easy" is the correct word but can't think of a better word.) After reading your posts , we have all learned what is involved in the care of a preemie & how each person's part contributes. Why didn't TLC do this? They could have done "A day in the life of Josie" episode. Instead we got to see the Howlers wreck the rented house.

[Wellfleet]

Thanks for sharing Maisie's day with us & all I can say is WOW. I esp enjoy reading about her therapy. As I posted before, this just fascinates me what they do at her age. I think it's neat the OT brings in a different toy or music for her to work with & loved that she dozed off in her bouncy seat. Who doesn't want to take a little snooze after working out :)

I know we saw a limited time of Josie's stay in the NICU but somehow they came across as making it look easy. (Not sure if "easy" is the correct word but can't think of a better word.) After reading your posts , we have all learned what is involved in the care of a preemie & how each person's part contributes. Why didn't TLC do this? They could have done "A day in the life of Josie" episode. Instead we got to see the Howlers wreck the rented house.

 

An excellent suggestion - and this is not the first time I've read some really good episode suggestions here. So it occurs to me - it sure doesn't say much when "ordinary people" posting comments on Web forums are having better programming ideas than the show's own producers. Too bad 19K&C's producers aren't even smart enough to steal them...

[Sew Sumi]

wanderwoman: Thanks for sharing A Day in the Life. I LOLed when Maisie fell asleep in the bouncy seat. I don't know how you do it! I'm glad that you are able to commiserate with other families who have the same challenges. That has to help you some, but that said, I'm glad that find solace here sharing with your internet family. :) 

[Micks Picks]

WANDERWOMAN it's so neat that you referred to us as if we were there with you.  We think we are there too.  Thank-you.

[amitville]

12am (00:00)/12am (00:00) Love and pray for Miss Maisie and her family. Repeat daily.

I love this .

[leighroda]

Omg people, I don't really know what thread this belongs in if a mod wants to point me in the right direction... BUT... Ok so today was part of my pediatrics rotation for nursing school, and we are in a psych adolescent floor for clinicals... Anyway, I was looking at some charts and there was an actual real life boy with a j name spelled like we spell J'Caleb... I kid you not. Unfortunately I can't post what the name is because it's so individual that I would be breaking HIPAA.

[frenchtoast]

This is the perfect place for a tidbit like that. That's kind of awesome. How did you not laugh? One of the most difficult times I had when pregnant was choosing names. And we didn't find out the sex, so we had to choose a boy and a girl. By the second one, we didn't have an agreed on boys name. Thank goodness she's a girl! 

[leighroda]

I did laugh... But I didn't think anyone would understand why I found it so funny, so I couldn't discuss it with anyone. Luckily I saw the chart before the kid, so I didn't laugh in front of him.

[wanderwoman]

I'm so angry this morning. This may be my last post for a while. Our insurance has decided that Maisie is big enough and stable enough to transfer to an in-network, "more local" NICU. We were warned by another parent with the same insurance that her child was moved at the 37 week mark, but we thought that, since they moved us here for specialized care, this is where we would stay. The word came down yesterday and her doctors here have tried to find an excuse to keep her here. Ultimately, the fact that she's considered a "feeder grower" makes me happy. But, we're going to lose this team that has poured their heart and soul into her. I was told the new hospital has OT and PT, but not NICU specific teams. Our PT/OT team here called the new team to give them our routine and the thinking at the new hospital is that kids like Maisie don't require daily, professional help. They show parents what to do and then you're on your own. Instead of daily therapy, it's weekly. The doctor who will monitor her at Children's is a hospitalised pediatrician, not a Neonatologist. Because she's 37 weeks gestational age, she will be put in a NICU with a nurse-patient ratio of 1-5. I've tried appealing the decision but they aren't budging. We're waiting on an ambulance to transfer her and they're telling me I will not he able to ride in the back with her. The staff here is just as angry. I am so scared. Her new NICU won't even allow me to overnight in her area because it's an open NICU. They expect me to leave her overnight! No. DH took the day off and he's on his way to our new hospital to argue our case for a private room or some concession. This is so wrong.

Maisie looks great today and for that i am thankful. It's the "what if" that has me twisted. I don't know what internet policy will be but I will try to keep in touch here. Please keep us in your thoughts.

[Absolom]

My heart goes out to you.  I hope she's out of there very soon so you can be away from them.

[Wellfleet]

My heart goes out to you.  I hope she's out of there very soon so you can be away from them.

 

Likewise times 10. Good luck with everything, please keep us posted when you can and God bless...

[amitville]

I'm so angry this morning. This may be my last post for a while. Our insurance has decided that Maisie is big enough and stable enough to transfer to an in-network, "more local" NICU. We were warned by another parent with the same insurance that her child was moved at the 37 week mark, but we thought that, since they moved us here for specialized care, this is where we would stay. The word came down yesterday and her doctors here have tried to find an excuse to keep her here. Ultimately, the fact that she's considered a "feeder grower" makes me happy. But, we're going to lose this team that has poured their heart and soul into her. I was told the new hospital has OT and PT, but not NICU specific teams. Our PT/OT team here called the new team to give them our routine and the thinking at the new hospital is that kids like Maisie don't require daily, professional help. They show parents what to do and then you're on your own. Instead of daily therapy, it's weekly. The doctor who will monitor her at Children's is a hospitalised pediatrician, not a Neonatologist. Because she's 37 weeks gestational age, she will be put in a NICU with a nurse-patient ratio of 1-5. I've tried appealing the decision but they aren't budging. We're waiting on an ambulance to transfer her and they're telling me I will not he able to ride in the back with her. The staff here is just as angry. I am so scared. Her new NICU won't even allow me to overnight in her area because it's an open NICU. They expect me to leave her overnight! No. DH took the day off and he's on his way to our new hospital to argue our case for a private room or some concession. This is so wrong.

Maisie looks great today and for that i am thankful. It's the "what if" that has me twisted. I don't know what internet policy will be but I will try to keep in touch here. Please keep us in your thoughts.

My heart goes out to you and every family that has been played by insurance. I will be keeping you hubby and our Maisie in my thoughts.  R ember we are always here to listen . Full Frontal Hugs to you. 

Edited March 18, 2015 by amitville

[GEML]

I'm so sorry. I hope you find excellent individuals at the new hospital even if the overall level of care is not what you and Maisie need. It's so frustrating to live in a world where such decisions are made on a balance sheet and not by medical professionals.

[Micks Picks]

So Geml how do you solve that problem?  I mean the best decision versus the balance sheet problem.  It starts at birth and ends, well, at the end.  My husband's and my mother's last years were so terrible.  In and out of hospitals and rehab and some little time at home.  I was supposed to hire 24 hour help for home but didn't because it would be silly.  They spent so little time there and you are stuck with the contract to pay them even when they are in rehab.  My husband would be in hospital, go to rehab, and often be back in hospital within hours.  I think the hospitals were finally fined 100k for readmission so soon.  Time at home was always so short.  And I've decided I'd rather die than have to go into a home or hospice.  Hospitals won't keep you if you won't get better, and rehabs dump you as soon as you fail to improve.  Then rules state you need I think 90 days at home without a hospital readmission before you get a rehab again after you've used 100 days.  Really impossible to do.  Affordable care act makes it worse all the way around.  So where is the solution.  Fortunately I was able to patch together care for them, but for me, I have to do something when the time comes, and I don't know what.  Like I said, I'd rather die than give them all my money and income to end up in a home.

[GEML]

My mother in laws last two years were very similar. She made the choice to opt for every possible treatment available. It was not the choice that I will make, but I respected her wishes. I hope my own children respect mine, should it ever come to that.

[ginger90]

All the best to you, hubby and Maisie !!

 

Micks Picks, I wish I knew a way around all of the nonsense, and my job is home care.

[Micks Picks]

Same situation, GEML.  Never once did my mom or my husband give any indication that they were tired of the whole thing.  I've never seen such optimistic people, against all evidence.  If they wanted life and weren't willing to give up, so be it.  I made sure they didn't have to go into a home.  I use the term home loosely.  Maybe if you have a lot of money and the patient no longer has a mind, that might be ok.  But their minds were good.  God love them.

 

Ginger I was lucky enough to get someone for 3-4 hours a day when husband was home.  His attendant kept him and the room and equipment nice and clean.  But it is hard to hire out of agency.

Edited March 18, 2015 by Micks Picks

[Barb23]

Oh, those insurance companies!! I get upset when I have to get a new prescription approved by my insurance company. After reading about OUR Maisie, I feel like organizing a Maisie protest at the insurance company. Any joiners?

[GEML]

Micks - sounds as though we did very similar things. My MIL was able to stay in her home up until the very very end, and we knew as soon as we moved her it wouldn't be long. The agencies are no fun to work with, but we did find, over time, a few caring individuals who made a world of difference even if it was only for a selected period of time.

I've learned that medicine is all about the individual. More money and resources DO help, but it's the caring individual that makes the difference in the end.

[jcbrown]

 

I made sure they didn't have to go into a home.  I use the term home loosely.Maybe if you have a lot of money and the patient no longer has a mind, that might be ok.

A mild quibble here. My mom died of Alzheimer's and for the last slightly-over-six months of her life we had to put her in a nursing home. Even though she could no longer interact with us in a way that was meaningful to us, none of us would have felt okay putting her in a place where the care felt anything less than top notch. Fortunately, my parents had long term care insurance (but not a lot of money) so we were able to get her into a very good nursing home. They do exist, though they are not the default.

 

Sorry, but your "no longer has a mind" was kind of a trigger for me.

[Readalot]

I hate insurance Issues like these. I will pray for the best solution possible. If you do have to leave im sending good thoughts for a great team. Maybe the new team will give you some concessions like letting you stay with Maisie overnight. Check your employers and see if they have a company like Health Advocate that will fight the insurance issues for you. All the best! XOXO to our little fighter!

[GEML]

Also, the social worker at the hospital may be able to help mediate between hospital protocols and your needs, such as staying overnight. That person can sometimes be a helpful person to know.

[Micks Picks]

JCBROWN sorry you took it that way.  There are good places for dementia but not many, and the price can be more than prohibitive.  Who was our 1st female Supreme Court Justice?  Name escapes me, but from Arizona.  Her husband had alzheimers and she quit the court.  Had him in a great place.  He fell in love with another resident there, and she (Sandra?) wasn't upset.  He didn't recall her anymore.  But there were people with dementia in the hospital where I was not long ago for a month, and they would scream all night.  Same in the rehab places where my husband was.  It's just the way it is.  It's so horrible and I'm glad you found a great place.  

 

Ha  O'Connor was her name.  Sandra Day O'Connor.

Edited March 19, 2015 by Micks Picks

[fireice13]

I feel like there's all this stigma against "homes," but there are some good ones out there. My grandparents got into a great one and Medicaid is paying for all of it. After my grandfather died, my grandmother did get a roommate but they ended up getting along great and becoming really good friends. My parents had the choice between nursing home or moving my grandparents 2000 miles away to where my parents live. By putting them in a nursing home friends and relatives could still visit and they could still have that social interaction.

 

Everyone needs to do what's right for their family, but also nobody should judge anyone else's choices.

[leighroda]

I had a similar experience with my mom, she passed in early February, but had been in the hospital for about 3 weeks before that, an issue came up because my sister and I both live in Florida, and our mom was in Texas. when she was first diagnosed and given a grim prognosis (we were told a matter of months at that point, it actually only wound up being 5 weeks from her cancer diagnosis to her passing) we made the trip to Texas only to find her house in a unlivable state, she clearly hasn't gotten out of bed in months, and my brother who lived with her is autistic and didn't really come out of his room so he seemed oblivious to the state of the house. So I immediately decided that me moving to Texas for the remainder of my moms life was the only option. When the hospital started talking discharge to hospice I was pushing for a hospice facility, while I was making an effort to make her house livable I was splitting my time between her house and the hospital with a majority of the time at the hospital... I even tried a few days to not go to the hospital at all but inevitably I would get a call from some dr/social worker/ or pt that they needed me to come up there for some reason. Once we were talking discharge we couldn't get her into a facility due to insurance, I begged and pleaded with anyone who would listen but nobody would budge on the decision. It made me so angry because here I was telling them the home was not a safe environment, I even offered to pay out of pocket, but nobody seemed to care it was all about the insurance, not what was best for her. I was also reluctant to be the sole caregiver, I am almost done with nursing school, so I may be a little more prepared than the average person, I have never had any hospice experience and hospice care is very different than routine care. I was terrified at the idea that I was inevitably going to be the one to find her when she passed, but still nobody seemed to care. I did get the house livable, I cleaned up mostly everything and hired a cleaning service to do the final clean up. Anytime I would express that I didn't feel capable of the total care the drs/ social workers would blow it off and say "in home hospice can help" meanwhile the hospice nurse only comes once a week, and a tech comes 2-3 times to help with bathing and stuff like that. All of that to say, it was so frustrating to have have it drilled in my head in school how the patients safety and well being is the most important factor, but in real life to see that ultimately money/insurance wins out over the patient. My story actually did end up ok, I loved my moms hospice nurse, when I expressed to them I couldn't do this on my own and I needed more help she made arrangements for the tech to come out an extra time, and she dropped by a few extra times and even brought breakfast one morning. My mom was only home for a week, and in the last 2 days it was evident she was passing so it switched to 24 hour care, so I was there when my mom passed, but I wasn't alone and I didn't have to make any decisions or wait for anyone to come confirm it.

[amitville]

I had a similar experience with my mom, she passed in early February, but had been in the hospital for about 3 weeks before that, an issue came up because my sister and I both live in Florida, and our mom was in Texas. when she was first diagnosed and given a grim prognosis (we were told a matter of months at that point, it actually only wound up being 5 weeks from her cancer diagnosis to her passing) we made the trip to Texas only to find her house in a unlivable state, she clearly hasn't gotten out of bed in months, and my brother who lived with her is autistic and didn't really come out of his room so he seemed oblivious to the state of the house. So I immediately decided that me moving to Texas for the remainder of my moms life was the only option. When the hospital started talking discharge to hospice I was pushing for a hospice facility, while I was making an effort to make her house livable I was splitting my time between her house and the hospital with a majority of the time at the hospital... I even tried a few days to not go to the hospital at all but inevitably I would get a call from some dr/social worker/ or pt that they needed me to come up there for some reason. Once we were talking discharge we couldn't get her into a facility due to insurance, I begged and pleaded with anyone who would listen but nobody would budge on the decision. It made me so angry because here I was telling them the home was not a safe environment, I even offered to pay out of pocket, but nobody seemed to care it was all about the insurance, not what was best for her. I was also reluctant to be the sole caregiver, I am almost done with nursing school, so I may be a little more prepared than the average person, I have never had any hospice experience and hospice care is very different than routine care. I was terrified at the idea that I was inevitably going to be the one to find her when she passed, but still nobody seemed to care. I did get the house livable, I cleaned up mostly everything and hired a cleaning service to do the final clean up. Anytime I would express that I didn't feel capable of the total care the drs/ social workers would blow it off and say "in home hospice can help" meanwhile the hospice nurse only comes once a week, and a tech comes 2-3 times to help with bathing and stuff like that. All of that to say, it was so frustrating to have have it drilled in my head in school how the patients safety and well being is the most important factor, but in real life to see that ultimately money/insurance wins out over the patient. My story actually did end up ok, I loved my moms hospice nurse, when I expressed to them I couldn't do this on my own and I needed more help she made arrangements for the tech to come out an extra time, and she dropped by a few extra times and even brought breakfast one morning. My mom was only home for a week, and in the last 2 days it was evident she was passing so it switched to 24 hour care, so I was there when my mom passed, but I wasn't alone and I didn't have to make any decisions or wait for anyone to come confirm it.

Dealing with a parents illness is such a trying time. Reading your  post has reminded me all the hurdles i had to handle with own mother/father. 

[GEML]

Just like there are good hospitals, and terrible ones, there are good and caring homes for the aged. And some of them aren't even about the money. As I said, everything comes down to the individuals doing the care.

[leighroda]

I absolutely agree, it's not everyone or every hospital, that was just my experience. In fact the people who do help and do care are part of the reason I want to be a nurse.

[kaleidoscope]

Wanderwoman, keeping your precious family in my thoughts and prayers.  All will go well and you will soon have sweet Maisie home with you ♥

[msblossom]

Wanderwoman, so sorry to hear about this new development with the insurance company inserting itself in the care and placement of Maisie. It sucks. I wish I could be more eloquent, but there it is. Hang in there. We're all thinking and/or praying for Maisie and you & DH. Maisie has come so far and my prayer is that she will continue to develop and get stronger and give this last development of plans "the lip" and fight hard against all odds as she has been doing all along and that her development and progress won't be compromised. Praying for better days ahead and that she'll be able to come home soon.

[ChocolateAddict]

Seconding what everyone else has said, I hope that Maisie will continue to receive the care that she needs and that you and your DH can come to an arrangement with the hospital that works for everyone.  It's disappointing that the insurance company is becoming involved in her care but I have no doubt that you will continue to stand up for her best interests even if they aren't.  She's a fighter and I hope that this change of care won't affect her amazing development so far. 

[Jellybeans]

Maisie is quite the little fighter and I know YOU are too wanderwoman. Hospitals are a PITA to deal with.

[amitville]

Maisie is quite the little fighter and I know YOU are too wanderwoman. Hospitals are a PITA to deal with.

Nice to see you back.

[Jellybeans]

Nice to see you back.

Thanks. Nice to see all is well in Maisieland.