If we are facebook friends you saw yesterday that the letter came in the mail from our primary insurance company denying Jilli's Special Tomato chair for when she has muscle crashes... on the grounds of it being a comfort item!?!?!?!
Its not a comfort thing, its a safety item. It is to keep her safe when her muscles are too low for even laying on the couch to be safe for her. I guess you could say its a comfort item in the fact that part of why we need it is so I can use the restroom when I am home by myself with the girls and Jilli still be safe but I argue that caregivers should be able to pee and not have to worry if their child is safe. Also being at a recline is easier on her heart during these crashes... she has a muscle disorder... the heart is a very large muscle... we need to be careful with it! I spent an hour at a local lending closet yesterday trying to find something that would work but sadly they didn't have anything.
I posted a picture on Facebook with the denial letter. I had been warned that it was likely coming but it still sucked to hold that letter.
And since then I have been in a theological battle in my head.
My heart is broken for the broken American healthcare system. While many of us have different thoughts on how to make it better, most people agree it is broken and has been broken long before ACA ever came along. It is a mess and hurts a lot of people. That is not opinion, just fact. I see the brokenness of the system more then many and it rips me apart.
Several people posted on my picture to start a go fund me. This is not the first time people have offered to do that however we have never accepted having a go fund me set up. We have talked about this a lot in the past almost 5 years and let me explain some of the thinking we have had.
-God has always provided. Sometimes in the craziest of ways. We have one time where an unexpected bill had come in and Brent had just done sound for a wedding at church and was paid for that and the check amount for that exactly covered the unexpected bill. My parents have helped us with several of the things the girls have needed over the years and paid for Jilli's insurance deductible her first year until we got Katie Beckett. We have had bible studies at church and the giving team at church give us gift cards without us asking and amazingly at the exact moments we needed something, often before we knew of the need (like we were given a gift card to Subway the day before Jilli ended up in the hospital unexpectedly and there is a subway in our hospital). God has always provided. Its not that it has always been easy, there has been a lot of prayers and tears over money and bills but it has always worked out.
-America has a very "pull yourselves up by your bootstraps" mentality. Its not Biblical but the American church still preaches it. The thought that if you have to ago asking for help then you are weak. I have no issues asking for people to donate to a charity that helps people with special needs (infact you can see a list here) but when I am the one directly being given money I feel uneasy and asking for money that directly benefits us is very outside my comfort zone.
-I see so many people that need so much. My facebook feed is mainly special needs groups. I have a lot of interactions with kids with special needs. Additionally I have many other causes that break my heart (Syria, sex slavery, poverty, ect) and I see such great needs in those areas too. My heart breaks for the world and often that leads me to feel like there are so much bigger needs in the world then ours.
-I see too many people that have abused crowd funding so it makes me nervous. Too many people have had poor motivation to doing it or poorly used the money. I feel like in our culture at times it is become the first step instead of the last step.
-I feel like if we accepted crowd funding I wouldn't feel right with doing any "fun" things. My first thought when this letter came was to cancel our trip to a water park soon for Jilli's birthday, a trip she has been planning for a year and talks about all of the time. A trip we price hunted for and bought during a sale so the money is non refundable anyhow so cancelling would be pointless for money reasons, but this is my head, if we accept money from others for something that should only happen after all fun and extra things have been cut out of our lives, it should be an absolute last thing... but then my brain also struggles because we try hard to create fun times for the girls when they are up to it. I by no means am a cruise director mom (my children were both told to go find something to do while I wrote this post so Jilli is playing playmobil and Lydia is playing with toys, I didn't tell them what they had to do but that they needed to find themselves something to do) but we try hard to create memories and to cherish the time we have with the girls. We try to make the best out of the time we are in the hospital too. Sometimes memories come without spending anything, but many fun things have a cost to them and my brain says that all needs to be cut before accepting any money in a crowd funding way but cutting that breaks my heart.
-I feel like health insurance is supposed to be the ultimate crowd funding, we all pay in and it helps us all and when people need to crowd fund for medical things on top of that it makes me feel even more like the system is so broken.
-We are a financial peace house and have an emergency fund that has been dipped into a lot this year with cars and teeth (I head to the dentist again in an hour for more work on my problem tooth, once again part of that ways covered in an unexpected way) so we talked about how much was in there and if taking the amount of the chair out of it is our best choice and we are still debating that.
-I don't want people to feel like we are nickle and diming them. There are many things in our world that doesn't end up covered, we have been fortunate that our church and family have been amazing, but we have always worried about doing go fund me for little things incase there was something huge later on that is a desperate need and then we have burned though people wanting to help because we were always asking.
I had someone tell me though yesterday that people are asking to help and wanting to help and that this is something Jilli needs. This isn't a comfort thing but a safety thing. They are right. My heart is so torn over this. I don't want my pride or thoughts on life to stand in the way of something the kids need but I also want to try to make the best choices. My head and heart are really struggling with this today.
We have decided if we do go the crowd funding route that we will not go with go fund me but instead with a program that a website that sells special needs equipment has. They have where you make a "registry" and then people can go on and donate to it until it is fully funded and then they ship you the product so money never goes through our hands. Brent and I still need to decide what we are going to do. When the DME quoted us to buy it from them they said it would be $1,100, but I found it on the site with the registry for $599 (she needs the special tomato seat with floor base with head support) Thoughts on a registry vs crowd funding? Does anyone else have these debates with crowd funding that I do?
Is this how God is trying to provide this time and my pride is standing in the way?
Am I putting God in a box when I doubt that He can find ways to help us and help all those other huge things going on in the world too?
What I do really want to stress though is how thankful we are for all of you. For kind words, for encouragement and for the monetary help we have had over the years. I want to thank you to those of you who have asked how they can help with this, who want to help Jilli get what she needs. I was busy yesterday afternoon with the girls at therapy and then the lending closet and then spending time at the hospital with a friend who is in right now so I was blown away when I opened my phone last night to read so many people offering to help that I struggled to hold back tears. I want to stress how thankful we are for everyone who has come along side us in this journey, you all mean so much to us and we are so very grateful for you and none of our head battle on this has to do with lack of love from you all. Words can never express how thankful I am for our support system.
***I do want to say that if you have had a go fund me we don't think less of you or are judging you. There are many reasons why they are needed and the best choice for someone and that is not up to me to judge, this is just how we view it in our lives***
Thursday, November 30, 2017
Wednesday, November 15, 2017
Count Me In
We are at the point in our house where Sesame Street is some of the most frequent entertainment found on TV. Lydia LOVES Elmo and Grover (am I the only one whos heart strings are pulled when Elmo says he loves you at the end of his segment, maybe its because of my time as a teacher and knowing that for too many children in this world Elmo is the only one telling them that he loves them) and Jilli love to watch any episode where there is someone in a wheelchair.
A frequent song on Sesame Street is one at the end of an episodes called "Count Me In" and it talks about including everyone. Jilli loves this song.
A couple of weeks ago I got a message from someone about a birthday party that we had been invited to. The message asked what they would do to include my kids in the party. I held back tears as I read the message. It was someone wanting to make sure my kids were counted in at this party and as a mom that means so much to me. Sadly do to scheduling conflicts we are not able to go to the party (for some reason lately I have been really bad about remembering to actually put things on my calendar and then double book us) but still the fact that someone asked how to best include the girls means the world to me.
I feel like more I have had to fight for the assumption of competence for Jilli, mainly with the medical community. Not the doctors on her immediate team, but when we are in the ER or admitted to the hospital I often feel people see the wheelchair and oxygen and think she can't do anything. Both of her large hospitalizations this year I had people assume that her laying in a bed staring at a wall is all she does and didn't understand why I was pushing for her to do more before she left the hospital. Its frustrating and it hurts my heart when people don't assume competence.
Often life is little adaptations. All too often we discount people's abilities and don't count them in. Often times all that would be needed to include someone is something small and I can tell you that while it might be something small it is a huge gesture to the family of the person you are including.
Thank you for the people who count the girls in. Thank you to the people who include them. Thank you to the people that understand that it might me doing something a little different but that the act of you including them means so much to us. We might always be able to attend everything and sometimes there are just things that don't work, and we fully understand that, but I am so thankful for the people who choose to invest in others.
A frequent song on Sesame Street is one at the end of an episodes called "Count Me In" and it talks about including everyone. Jilli loves this song.
A couple of weeks ago I got a message from someone about a birthday party that we had been invited to. The message asked what they would do to include my kids in the party. I held back tears as I read the message. It was someone wanting to make sure my kids were counted in at this party and as a mom that means so much to me. Sadly do to scheduling conflicts we are not able to go to the party (for some reason lately I have been really bad about remembering to actually put things on my calendar and then double book us) but still the fact that someone asked how to best include the girls means the world to me.
I feel like more I have had to fight for the assumption of competence for Jilli, mainly with the medical community. Not the doctors on her immediate team, but when we are in the ER or admitted to the hospital I often feel people see the wheelchair and oxygen and think she can't do anything. Both of her large hospitalizations this year I had people assume that her laying in a bed staring at a wall is all she does and didn't understand why I was pushing for her to do more before she left the hospital. Its frustrating and it hurts my heart when people don't assume competence.
Often life is little adaptations. All too often we discount people's abilities and don't count them in. Often times all that would be needed to include someone is something small and I can tell you that while it might be something small it is a huge gesture to the family of the person you are including.
Thank you for the people who count the girls in. Thank you to the people who include them. Thank you to the people that understand that it might me doing something a little different but that the act of you including them means so much to us. We might always be able to attend everything and sometimes there are just things that don't work, and we fully understand that, but I am so thankful for the people who choose to invest in others.
Places to support families with special needs
I posted this on Facebook yesterday but I know that there are people on the blog as well who ask where are some great places to donate to for families with children with special needs. If you are looking to do some holiday time giving here are some great organizations.
As we are headed into the holiday season people's hearts look more for things to give back to others. I am often asked about what organizations hold a special place in my heart and how people can make an impact in the lives of kids with medical needs so below is a list of different organizations and a way you could help:
Ronald McDonald House: RMH is a place for families who have children receiving medical treatment to stay close to their child. (everything donated must be new and in original packaging due to illness prevention) I can help with delivering donations
-Toys for the magic room- these are toys in the $10+ price range. When a child checks into RMH they get a token to the magic room to pick out a brand new toy and book that they get to keep. Many of the black Friday ads are out and there are so many great toy deals that would be perfect for the magic room
-books for the magic room
-small puzzles/sicker books ect- these are placed on the fire place for kids to come and take as they please
-one time use containers for families to bring meals back to the hospital with them (like plastic take out containers)
-travel size toiletries
-breakfast cereal
-art supplies
Tubie Friends: TF takes stuffed animals and sews in the same medical equipment a child has (feeding tube, port, trach, ect) and sends them to children and hospitals around the world. TF only uses Build A Bear animals however they pay full retail cost for them. They also ask families if they can cover the shipping costs however if a family is not able to pay for shipping the funds are raised to cover that as well. There are currently several hundred children on the waiting list for animals. To donate go to www.tubiefriends.com
Gracie's Gowns: Gracie's Gowns makes hospital gowns for medically complex kiddos to wear in the hospital. These make the hospital easier for kiddos getting to have their own gown in a fabric they like to wear. They currently are in need of funding to help pay for fabric and shipping to get gowns to more children. To donate go to www.graciesgowns.org
Tiny Superheros: Tiny Superheros makes capes for children with medical needs to remind them how strong they are. They also have a monthly subscriptions to "missions" that help children learn skills that help them with their illness. The self estimate work that they do with these kids is amazing. Many families don't have money left after paying medical bills to pay for a cape so TS raises funds to gift capes to kids. To donate go to tinysuperheroes.com
Feeding Tube Awareness: This is a foundation that helps families learn about how to take care of a child with a feeding tube. When a tube is placed the hospital can teach you the medical side of it but they don't know the day in and out things of life at home with a feeding tube, this is were FTA steps in. They have so many parent resources to make life at home with a tube easier. They also help to teach medical staff about ways they can help families too. They also lobby for feeding tubes to be included in media so kids with tubes have the opportunity to see other kids like themselves. Donations can be made at feedingtubeawareness.org
Never Say Never: NSN is working to build a playground for everyone in Lake Geneva. Jilli's face lights up when she finds out we are going to a wheelchair playground because it makes it so she can join in too. NSN is selling fence pickets for around the playground that can be engraved with names. They are also looking for sponsors of larger equipment which would be great use of cooperate or large giving. Donations can be made at www.neversayneverplayland.com/
If you have any questions or want more information about any of these groups please let me know.
As we are headed into the holiday season people's hearts look more for things to give back to others. I am often asked about what organizations hold a special place in my heart and how people can make an impact in the lives of kids with medical needs so below is a list of different organizations and a way you could help:
Ronald McDonald House: RMH is a place for families who have children receiving medical treatment to stay close to their child. (everything donated must be new and in original packaging due to illness prevention) I can help with delivering donations
-Toys for the magic room- these are toys in the $10+ price range. When a child checks into RMH they get a token to the magic room to pick out a brand new toy and book that they get to keep. Many of the black Friday ads are out and there are so many great toy deals that would be perfect for the magic room
-books for the magic room
-small puzzles/sicker books ect- these are placed on the fire place for kids to come and take as they please
-one time use containers for families to bring meals back to the hospital with them (like plastic take out containers)
-travel size toiletries
-breakfast cereal
-art supplies
Tubie Friends: TF takes stuffed animals and sews in the same medical equipment a child has (feeding tube, port, trach, ect) and sends them to children and hospitals around the world. TF only uses Build A Bear animals however they pay full retail cost for them. They also ask families if they can cover the shipping costs however if a family is not able to pay for shipping the funds are raised to cover that as well. There are currently several hundred children on the waiting list for animals. To donate go to www.tubiefriends.com
Gracie's Gowns: Gracie's Gowns makes hospital gowns for medically complex kiddos to wear in the hospital. These make the hospital easier for kiddos getting to have their own gown in a fabric they like to wear. They currently are in need of funding to help pay for fabric and shipping to get gowns to more children. To donate go to www.graciesgowns.org
Tiny Superheros: Tiny Superheros makes capes for children with medical needs to remind them how strong they are. They also have a monthly subscriptions to "missions" that help children learn skills that help them with their illness. The self estimate work that they do with these kids is amazing. Many families don't have money left after paying medical bills to pay for a cape so TS raises funds to gift capes to kids. To donate go to tinysuperheroes.com
Feeding Tube Awareness: This is a foundation that helps families learn about how to take care of a child with a feeding tube. When a tube is placed the hospital can teach you the medical side of it but they don't know the day in and out things of life at home with a feeding tube, this is were FTA steps in. They have so many parent resources to make life at home with a tube easier. They also help to teach medical staff about ways they can help families too. They also lobby for feeding tubes to be included in media so kids with tubes have the opportunity to see other kids like themselves. Donations can be made at feedingtubeawareness.org
Never Say Never: NSN is working to build a playground for everyone in Lake Geneva. Jilli's face lights up when she finds out we are going to a wheelchair playground because it makes it so she can join in too. NSN is selling fence pickets for around the playground that can be engraved with names. They are also looking for sponsors of larger equipment which would be great use of cooperate or large giving. Donations can be made at www.neversayneverplayland.com/
If you have any questions or want more information about any of these groups please let me know.
Tuesday, November 14, 2017
Where is Nov going?!
I just looked down at the date and had that realization... Nov is going FAST and it has been kind of crazy! This is going to be a more bullet point form blog post just because there is a lot to talk about and I don't want to try to stick to a timeline
-Brent's birthday was last week. We were rather calm about it. We went to dinner and got ice cream. Nest year is a big year so maybe we will do something more exciting then but this year calm worked.
-I found out yesterday that insurance denied Jilli's Special Tomato chair (click here for the link to the chair I am talking about) for in the house saying it is not covered under plan benefits and from talking to the wheelchair place they have never had the state pay for one. I asked the wheelchair company how much it would cost me to buy one from them and they said around $1,100!!! Dam why are things for people with special needs so expensive? I have been looking online and came find the size she needs for around $400. Now we are trying to figure out our options. Honestly I don't get them not paying for this, because when she has her crashes she is not safe to lay on the couch, she falls off and is going to get hurt, paying for this chair would be cheaper then the ER visit for her falling!
-Yesterday Lydia had her speech eval and she qualifies for speech so they are going to try to schedule that for when Jilli is in PT. Lydia wants to communicate so badly and she is talking more then Jilli did at this age but she is getting very upset communicating which is leading to aggression. Its better to get ahead of things and help her.
-Last week we went to Shriners for leg braces checks for both girls. They said that both of their braces fit fine for now so they didn't get casted for new one. They are lending us a walker for when Jilli has her crashes and needs more stability and if we find it works then we will go through the insurance process (oh joy) for one but I am thankful that they had one to lend us to try. I was also talking with the PT there about Jilli's Smart Drive because it has some issues and she said that she would touch base with the Smart Drive rep to see if they could help us. Sometimes the Smart Drive works great, other days we can not get it to do anything we want it to. I am thankful my brother came with me to Shriners because the drive was long on the way home with traffic so it was nice to have a second adult.
-We did get Jilli's PT upped to twice a week for 6 weeks. With her PT having been out a few months ago we had some extra visits and after a ton of hoops and craziness we got it fixed. It is really helping her.
-Yesterday after speech/PT we headed to RMH. We had several friends that were staying there yesterday so we went to visit people. The zoo came in and did a play about the earth and animals. It was really cute and Jilli and her two friends got to be polar bears. It was fun to spend time with friends.
-Lydia also decided to take care of her lip tie while at RMH. She fell and her face and the floor met. It was really bloody but she handled it well. Hopefully she took care of the entire lip tie because then the dentist will not have to cut it.
- We are working on getting the house ready for holidays. We spent part of the weekend moving things around in the living room. Where to put the tree needs more thought this year with a very active toddler and Jilli wishes the tree was already up but soon we will get to that. Brent's family celebrates Thanksgiving here so we are busy getting the house ready for that and then we will decorate for Christmas. I use to be a no tree until Thanksgiving person but at this point, I am flexible, if it makes Jilli happy to put up the tree sooner then it is really no big deal.
-We are working with our med supply company to get an adapter that we need for the g port of Lydia's tube for a new med that GI is talking about trying but apparently I am the first person to ask for this and it is expensive.
- I got a script in the mail last night for Jilli to have the urine test that she had done in the hospital again. I have read a bunch about it and I get why a baseline is good but it doesn't rule this issue out if at baseline the numbers is fine because how what they are looking for works is it causes evlivated numbers during a crash. We will see.
- School is going well for Jilli. We worked on rhyming this morning. She likes school. We do it first thing in the morning when she gets up.
-Miss Lydia is definitely a toddler! She is into everything and loves to see what things do. She is currently shredding a wipe. She lives to explore everything.
-Brent's birthday was last week. We were rather calm about it. We went to dinner and got ice cream. Nest year is a big year so maybe we will do something more exciting then but this year calm worked.
-I found out yesterday that insurance denied Jilli's Special Tomato chair (click here for the link to the chair I am talking about) for in the house saying it is not covered under plan benefits and from talking to the wheelchair place they have never had the state pay for one. I asked the wheelchair company how much it would cost me to buy one from them and they said around $1,100!!! Dam why are things for people with special needs so expensive? I have been looking online and came find the size she needs for around $400. Now we are trying to figure out our options. Honestly I don't get them not paying for this, because when she has her crashes she is not safe to lay on the couch, she falls off and is going to get hurt, paying for this chair would be cheaper then the ER visit for her falling!
-Yesterday Lydia had her speech eval and she qualifies for speech so they are going to try to schedule that for when Jilli is in PT. Lydia wants to communicate so badly and she is talking more then Jilli did at this age but she is getting very upset communicating which is leading to aggression. Its better to get ahead of things and help her.
-Last week we went to Shriners for leg braces checks for both girls. They said that both of their braces fit fine for now so they didn't get casted for new one. They are lending us a walker for when Jilli has her crashes and needs more stability and if we find it works then we will go through the insurance process (oh joy) for one but I am thankful that they had one to lend us to try. I was also talking with the PT there about Jilli's Smart Drive because it has some issues and she said that she would touch base with the Smart Drive rep to see if they could help us. Sometimes the Smart Drive works great, other days we can not get it to do anything we want it to. I am thankful my brother came with me to Shriners because the drive was long on the way home with traffic so it was nice to have a second adult.
-We did get Jilli's PT upped to twice a week for 6 weeks. With her PT having been out a few months ago we had some extra visits and after a ton of hoops and craziness we got it fixed. It is really helping her.
-Yesterday after speech/PT we headed to RMH. We had several friends that were staying there yesterday so we went to visit people. The zoo came in and did a play about the earth and animals. It was really cute and Jilli and her two friends got to be polar bears. It was fun to spend time with friends.
-Lydia also decided to take care of her lip tie while at RMH. She fell and her face and the floor met. It was really bloody but she handled it well. Hopefully she took care of the entire lip tie because then the dentist will not have to cut it.
- We are working on getting the house ready for holidays. We spent part of the weekend moving things around in the living room. Where to put the tree needs more thought this year with a very active toddler and Jilli wishes the tree was already up but soon we will get to that. Brent's family celebrates Thanksgiving here so we are busy getting the house ready for that and then we will decorate for Christmas. I use to be a no tree until Thanksgiving person but at this point, I am flexible, if it makes Jilli happy to put up the tree sooner then it is really no big deal.
-We are working with our med supply company to get an adapter that we need for the g port of Lydia's tube for a new med that GI is talking about trying but apparently I am the first person to ask for this and it is expensive.
- I got a script in the mail last night for Jilli to have the urine test that she had done in the hospital again. I have read a bunch about it and I get why a baseline is good but it doesn't rule this issue out if at baseline the numbers is fine because how what they are looking for works is it causes evlivated numbers during a crash. We will see.
- School is going well for Jilli. We worked on rhyming this morning. She likes school. We do it first thing in the morning when she gets up.
-Miss Lydia is definitely a toddler! She is into everything and loves to see what things do. She is currently shredding a wipe. She lives to explore everything.
Monday, November 13, 2017
traditions
I wrote a blog post HERE last year about Christmas traditions and I was thinking last night about how much I have grown as a person over the years.
See I was a very crabby person when our church stopped singing Silent Night holding candles on Christmas Eve several years ago. It broke my tradition. How I celebrated Christmas. I am a tradition person.
A couple of weeks ago Jilli was sitting on the couch playing and looked up at me and asked if she was in the hospital for Christmas if we could find her a small Christmas tree to have in her hospital room. This was a very matter of fact thing, like she was asking me to add something to the grocery list.
See Jilli has spent 2 major holidays either in the hospital or just having been sick this year (she missed her therapy Halloween party so in her mind she missed Halloween even though she loved the party at rmh) Jilli has also been very sick on Christmas before. She understands that she might spend Christmas in the hospital, it is not what any of us want and something we will all work hard to avoid, but something that might happen in her world.
Jilli is a planner. And she likes to have things set in place. After hospitalizations once she is better able to communicate again she often tells us things we could do to make the next time better and thankfully each time we are getting "better" at it. Her asking for a Christmas tree didn't really have any emotion behind it, she just knows she likes Christmas trees (she is voting for ours to be up already) and she knows if she is in the hospital for Christmas she would like a Christmas tree in her room, a very practical request. A very small request... she didn't ask if she would still get gifts, she just asked for a decoration.
So to help her feel ready we bought her a little chia like Christmas tree that we could "grow" if she ends up in some year over Christmas. She said she feels better about Christmas know knowing she is prepared.
No two Christmas has been the same in her little world. Traditions change. We have sadly lost some family members since she was born who we use to celebrate Christmas with. She had the flu one year for Christmas. Things have been different every year. That is kind of the nature of our life.
And I realized the other day that I am at peace with that. That traditions changing don't sting like they once did. Don't get me wrong, I still love so many of our Christmas traditions...
But Jilli has really reminded me about the true meaning of Christmas. A baby in a manger... no tradition to that. No one wishing him Merry Christmas. That its not the events and activities that make it Christmas, but the celebration of an amazing birth and sharing that message with others.
I hope we are able to do all of our Christmas plans this year, but even if we don't thats ok. I have learned to let go. I have been given peace about the things that use to stress me out or make me mad. I have learned that my Christmas celebration is not tied to anyone but Jesus and that is a gift.
And I see my girls, and all of the lessons they have taught me just by being them. The ways God has used them to change my heart. The ways I have learned to love more, serve more, stress the ordinary less, and just be content more.
This Christmas I am thankful for that baby, but I am also thankful for the ways God has helped me to let go of things that got in the way of me remembering what Christmas is all about.
See I was a very crabby person when our church stopped singing Silent Night holding candles on Christmas Eve several years ago. It broke my tradition. How I celebrated Christmas. I am a tradition person.
A couple of weeks ago Jilli was sitting on the couch playing and looked up at me and asked if she was in the hospital for Christmas if we could find her a small Christmas tree to have in her hospital room. This was a very matter of fact thing, like she was asking me to add something to the grocery list.
See Jilli has spent 2 major holidays either in the hospital or just having been sick this year (she missed her therapy Halloween party so in her mind she missed Halloween even though she loved the party at rmh) Jilli has also been very sick on Christmas before. She understands that she might spend Christmas in the hospital, it is not what any of us want and something we will all work hard to avoid, but something that might happen in her world.
Jilli is a planner. And she likes to have things set in place. After hospitalizations once she is better able to communicate again she often tells us things we could do to make the next time better and thankfully each time we are getting "better" at it. Her asking for a Christmas tree didn't really have any emotion behind it, she just knows she likes Christmas trees (she is voting for ours to be up already) and she knows if she is in the hospital for Christmas she would like a Christmas tree in her room, a very practical request. A very small request... she didn't ask if she would still get gifts, she just asked for a decoration.
So to help her feel ready we bought her a little chia like Christmas tree that we could "grow" if she ends up in some year over Christmas. She said she feels better about Christmas know knowing she is prepared.
No two Christmas has been the same in her little world. Traditions change. We have sadly lost some family members since she was born who we use to celebrate Christmas with. She had the flu one year for Christmas. Things have been different every year. That is kind of the nature of our life.
And I realized the other day that I am at peace with that. That traditions changing don't sting like they once did. Don't get me wrong, I still love so many of our Christmas traditions...
But Jilli has really reminded me about the true meaning of Christmas. A baby in a manger... no tradition to that. No one wishing him Merry Christmas. That its not the events and activities that make it Christmas, but the celebration of an amazing birth and sharing that message with others.
I hope we are able to do all of our Christmas plans this year, but even if we don't thats ok. I have learned to let go. I have been given peace about the things that use to stress me out or make me mad. I have learned that my Christmas celebration is not tied to anyone but Jesus and that is a gift.
And I see my girls, and all of the lessons they have taught me just by being them. The ways God has used them to change my heart. The ways I have learned to love more, serve more, stress the ordinary less, and just be content more.
This Christmas I am thankful for that baby, but I am also thankful for the ways God has helped me to let go of things that got in the way of me remembering what Christmas is all about.
Friday, November 3, 2017
More Hospital time
This post is mainly going to be like a journal for me because I am trying to keep track of everything that happened in the last two weeks....
10/22- We went to church in the morning. At church I was given a gift from one of the life groups that made me cry and I am so thankful for. As I opened it I was literally thinking, why now, our life is in its "norm" right now, what would cause someone to think of us now. They knew we needed that before I did and I am so grateful! After church we went to lunch with my parents and then up to RMH because we had a week of appointments. Sunday afternoon we took it easy. We rested and went to dinner at the house. There was music therapy that night and Nate and his family came over to join us for that. Jilli enjoyed music and then we headed to the room and went to bed.
10/23- I woke Jilli up and got her dressed. She was tired but not out of the norm tired. I asked her if she wanted to do her wheelchair or stroller over to her GI appointment and she said wheelchair because she wanted to show the doctor (GI is Jilli's favorite doctor) The girls and I headed over to the hospital to grab me some breakfast before our 8:50am GI appointment. As we were headed to the cafeteria Jilli suddenly was getting very tired. I told her she needed to work at her wheelchair because she chose to bring it over to the hospital and I had Lydia in the stroller. We got down to the cafeteria and Jilli started yelling that her tummy hurt and she needed out of her wheelchair because she hurt too bad. I was able to calm her down. I asked her if she needed to poop and she said yes but then pointed up by her tube. I told her we were headed to GI so they could help her tummy. I then pushed a wheelchair and a stroller up to the 7th floor because Jilli said her stomach hurt too much to push. She is still getting the hang of the smart drive and with time will be able to use that in situations like this but she is still just learning the smart drive. We got up to GI and did weight and height (J-33lb, L-19lb) and then headed to the room. Jilli looked worn out. I figured she was just tired. She didn't talk much to the dietitian or nurse which is odd for her. Then she asked me to hold her, that her body was too weak. I held her and she wanted me to hold her like a baby. The GI came in and we talked. She commented that she has never seen Jilli like this (she has known Jilli for most of her life) and that I should keep an eye on it. The appointment mainly ended up being about Lydia (she vomits when she poops and has issues with pooping) so we started her on a med for gut bacterial overgrowth again (she had that earlier in the year) and are exploring some other med options.We then headed back to RMH and Lydia took a nap while Jilli watched TV. I put the girls in the stroller and brought them upstairs so I could eat lunch and while in the stroller Jilli fell asleep which is really strange for her. She slept for 2 1/2 hr! I called my brother and asked him to bring up the big neb because I was worried if she was sleeping like that she might be getting sick and I had the travel neb and a little bit of nebs with me but if she was getting sick I knew I would need more. Jilli woke up and her resting heart rate was 160. You could visibly see she was working to breathe and she couldn't sit up or talk. My mom got to rmh and she and I told Jilli over to the ER. The ER was busy but they got us in quickly. Once we got to a room the dr. and PA met us there quickly. They took a look at her and said she needed to be admitted, she needed labs done and an IV started. The nurse came in and started her IV and took labs and then things screeched to a halt. We got to the ER at 7pm and a few hours later I was really starting to wonder what was going on and knowing the fact that she needed her night time meds and formula. The nurse found the doctor and she came in. She had called the on call neuro and they said they didn't know how being in the hospital would help her!?!?! The ER doctor disagreed and so did we. She asked me how I was feeling and I explained to her why home was not an option. She went back and fought for Jilli. The ER tried to be as helpful as they could with getting some of her stuff but some of it they just couldn't do in the ER. Finally around 1am she was admitted.
10/24- It was after 2am before she was finally settled in the room and I was working out with emd students getting her all of her meds and formula and I went to sleep about 3am. I got up a little before 6am with the first people coming in to talk about what was going on. A lot of people were in and out of the room that day. They paged all of her doctors to let them know she was in and called in OT and PT. In therapy Jilli was able to sit up with help but was so exhausted after she was sleeping. She barely talked most of the day. She wanted to do things but was just so worn out. Her Neuromuscular doctor came up after clinic to check in on her and he came up with more off the wall ideas of tests to run... we have run all the "typical" tests at this point that now we are having to run some off the wall things. Pulmonology also came in... I wish they had looked at her chart a little better before walking in because their brilliant idea was to put her on a med she has been on for years.... They did decided to run blood gasses. The first blood gas was rough and apparently not done fast enough because it clotted so they had to come back and do another one. We also started our issues with nebs, for some reason about once a day her neb med would drop off her med list and then if I was not watching super closely she would miss the dose and start coughing. This night she was over tired and fussing and she made a med student give her the neb... it was kind of funny for the nurse and I.... That night for dinner mom, Lydia and I ran over to RMH so I could shower and Lydia got to do art therapy and play in the play room for a little bit.
10/25- I had an already scheduled thing at RMH for a check presentation with media so I put Brent in charge of rounds that day, especially after the first med student came in at 6am to tell me they had not ordered any of the tests the neuromuscular dr ordered and they were just going to send Jilli home because they were not going to cure her (yes I about went through the roof) and I was hopeful that Brent saying the same things I was saying but out of his mouth might help... it didn't but from his explanation of rounds its probably good I was not there because I might have needed something for my blood pressure. Thankfully the PT and special needs helped us communicate with the team that Jilli was not safe to take home yet. The discharge planner also called our therapy place and our home OT gave them the facts of life about how discharging Jillian with a resting heart rate of 140 and unable to sit independently was not safe. The doctors started talking about how they didn't know how to bill insurance for Jilli being in the hospital so they were worried insurance wasn't going to pay so they wanted her out... I told them the insurance is my problem and theirs is to help her, I get they are worried about patients getting a huge bill and that is a niece of their job but we can't neglect what my kids need out of fear of insurance (tell me again how our system here is amazing because insurance can't dictate care... because let me tell you the insurance companies do so much dictating of care here it is scary but hey, its a free market so that makes it more golden right....) The med students also kept saying they wanted to discharge her and she could do daily outpatient PT and OT but that is not a thing because insurance does not pay for it. Our primary gives her 10 visits a year and we have to fight the state every 6m to get weekly PT... daily just doesn't happen. On top of it this was the last day that the PT place by our house was open so we were loosing that at the same time. My aunt came over after the check presentation and visited with us for a little bit and Jilli slept most of the time. My mom brought us dinner and spent the night to help me (Brent and Lydia would go back to RMH at 8pm). They also in the morning re tested blood gas and in the late afternoon they did the blood tests her neuromuscular dr ordered and a urine test. Our special needs doctor also came in and talked to me and we brainstormed some. One of Jilli's favorite people, Holly the art therapist came in and they decorated Jilli's neb mask.
10/26- She was so much more tired this day. When special needs came in before rounds Jilli could barely look at them and they became worried and said by their assessment there was no way that Jilli could leave the hospital that day. Special needs talked to the team before rounds so rounds went a lot better. She had PT and cried during most of it because her body hurt so much and just sitting was so hard. She rested for a while after PT and we had our minister come up and pray with us and during that time Jilli was able to play on the iPad. Then OT came and they decided to bring her to the 7th floor (she was on the 11th floor) to the gym there to see if getting her out of the room helped. She was able to sit with support but then her body gave out and she almost fell out of the wheelchair coming back to the room. She then took a 2hr nap (we had a friend visit during that and she slept the whole time) and then my brother in law and in-laws came over and she slept most of the time and then when she woke up she wanted the room dark and everyone whispering. Genetics came in to talk to me and there is a brand new muscle test that just came out that they decided to run on her. Her whole exome sequence can be re-run in December so instead of us having an appointment to say to run it they are just going to automatically run it. Around 7:50 at night she was ok with the lights on again and we worked on her sitting up again and she lasted about 7min with support before she fell over and dazed. Later that night we had a nursing student. Every time a nurse goes to leave the room they always ask if they can get us anything and normally Jilli never answers them (most of the time her body is just too tired) but this night the nursing student went to leave the room and asked if we needed anything and Jilli said sheep. It was out of no where. Then when the nurse came in and went to leave Jilli said the same thing. A little while later the nursing student came in and the instructor looked through the window and they gave Jilli a stuffed sheep. They told her it had been running around the hospital and they caught it and needed her to keep it in her room so it wouldn't run around the hospital any more. Jilli got the biggest smile on her face. It was so sweet I was trying to not cry. Her art therapist also stopped by this day and Jilli was too tired to do art... it was sad but Jilli had bought some art supplies for the art room at RMH and I had given them to the art therapist Tuesday night so the art therapists colored her a thank you card that was a purple poop emoji!
10/27- We woke up to a 6am blood draw (those are rough!) Jilli was going a bit better that morning and it was decided after she did everything she needed for the day that she would be discharged to RMH. OT came in and they worked on building Jilli's new playmobil set (daddy got her one and Caroline mailed her one!) and then she rested for a while. The dance therapist came in and Jilli decided she could have us sit the bed up and wave a streamer while music played. She loved the first song, the second song she had me help her wave the streamer and by the third song she was worn out and dazed at a wall. All she was doing was waving a streamer! She wasn't even sitting independently! At rounds they let me know that they have presented our case to the Nelson group at the hospital. This is a group made up of people from every specialty for children who are perplexing the hospital. This group meets twice a year and does a full chart review and everyone talks. They agreed to take on our case to brainstorm at their next meeting but in the meantime they were did a very brief review and suggested a test. I don't know when this group meets next but I hope it is soon and I hope they have some ideas to help us. In the afternoon the art therapists created an amazing moment for Jilli. There is a theater group in the area that is doing Little Mermaid right now and they came to the hospital to put on a little show but with Jilli's needs she couldn't go down for the show so the art therapists got Ariel, Prince Eric and Ursula to come to Jilli's room after their performance! It was amazing!!!! I cried! They love her so much and I am so grateful for all of the expressive therapies! Then we headed down to IR as Jilli and Lydia both had tube changes scheduled before she was hospitalized so we went down for that. It was one of the harder tube changes for Jilli just because her body was worn out and she had been through a lot that week already but everyone in IR was great. We then headed up to the room and had a new nurse who was incharge of Jilli's discharge. At rounds that morning I had asked that since they wanted Jilli to do outpatient therapy Mon-Wed the next week if we could be discharged to RMH to make sure she could handle that without needing to come back to the hospital. Special needs had said that was fine and I said I needed them to put that in writing per RMH rules and at rounds that sounded like everyone was on board with that plan but then suddenly at discharge the team attending said no so then it became a battle because she was not well enough to be over an hour from the hospital and we had no idea how she was going to handle outpatient therapy. The nurse fought for us and RMH helped and we got it sorted out. At the same time the outpatient therapy place decided to be frustrating so the last couple of hours at the hospital was a battle but eventually we got it all worked out and got discharged. We then headed over to RMH and Jilli took a long nap. We had dinner and then rested in the room.
Saturday and Sunday were spent resting, mostly in the room. My mom brought us up more clothes and Annette brought us up our mail. Sunday we went to art therapy which the girls loved.
Monday: We spent most of the morning resting. Jilli had PT in the afternoon and she worked hard. What I didn't love was when she would walk with support her pulse ox would dip into the 60s which is far outside her normal but it would come back up. GI called in the afternoon to check in and we spent most of the rest of the day just resting.
Tuesday: Jilli has OT in the morning and then we went back to RMH to rest. In the afternoon Caroline, Stacy, Nate, Holly and Kirk came over and Brent came from work for the halloween party! It was the girls first time trick or treating. They had non food options. They also had pumpkins to paint. It was very low key and perfect for the girls. At the end Jilli has a pulse ox crash and got very silly from lack of oxygen so we headed back to the room and she rested for a while and then we headed upstairs for dinner. After dinner was art therapy and then bed.
Wednesday: We had a calmer morning and Jilli did school for the first time since getting to RMH. Both girls had PT in the afternoon and they both worked really hard. We then headed back to RMH and the girls and I did music therapy (Jilli stayed in her wheelchair instead of dancing around) and Brent worked on packing and then we checked out and headed home.
Since getting home we have been taking life calm. Resting lots. Right now Jilli is laying next to me on the couch. Her body is tired but she is working so hard and wants to do everything she could before.
So while in the hospital they started her on a 5 day round of twice daily prednisone and did nebs every 4hr. We also ran IV fluids at 51ml/hr and her feeding pump at 58ml/hr. All of our doctors from outside the hospital were amazing as well as all the nurses we had... the orange team that we had in the hospital was rather frustrating many times.
Prayer requests:
-We need insurance to approve a special seat for in the house for when crashes like this happen. Brent got one from a lending closet last weekend but it is too small for Jilli. We are hopeful that since her primary insurance didn't pay at all for her wheelchair that they will cover this seat (we were already told medicaid wont)
-They would like to increase her PT to twice a week. This already has been a big issue and too much stress. Our PT has been working hard to get this worked out but we need medicaid to approve the changes.
-Last night at 9pm one of the tests was automatically released to me and it is rather off and I am trying not to go google crazy. Our neuro nurse is out today so I was not able to hear what the doctor thinks of the results. Pray that Monday we are able to have a conversation about these tests and that maybe this leads us down a road to help Jilli. This wouldn't explain her overall but could explain these crashes she is having. I'm trying hard not to get my hopes up because we have been down a lot of dead ends but maybe this is a way to help her.
Here are some pictures from the week. I only take pictures in calm moments so they tend to catch the "best" moments in the hospital
10/22- We went to church in the morning. At church I was given a gift from one of the life groups that made me cry and I am so thankful for. As I opened it I was literally thinking, why now, our life is in its "norm" right now, what would cause someone to think of us now. They knew we needed that before I did and I am so grateful! After church we went to lunch with my parents and then up to RMH because we had a week of appointments. Sunday afternoon we took it easy. We rested and went to dinner at the house. There was music therapy that night and Nate and his family came over to join us for that. Jilli enjoyed music and then we headed to the room and went to bed.
10/23- I woke Jilli up and got her dressed. She was tired but not out of the norm tired. I asked her if she wanted to do her wheelchair or stroller over to her GI appointment and she said wheelchair because she wanted to show the doctor (GI is Jilli's favorite doctor) The girls and I headed over to the hospital to grab me some breakfast before our 8:50am GI appointment. As we were headed to the cafeteria Jilli suddenly was getting very tired. I told her she needed to work at her wheelchair because she chose to bring it over to the hospital and I had Lydia in the stroller. We got down to the cafeteria and Jilli started yelling that her tummy hurt and she needed out of her wheelchair because she hurt too bad. I was able to calm her down. I asked her if she needed to poop and she said yes but then pointed up by her tube. I told her we were headed to GI so they could help her tummy. I then pushed a wheelchair and a stroller up to the 7th floor because Jilli said her stomach hurt too much to push. She is still getting the hang of the smart drive and with time will be able to use that in situations like this but she is still just learning the smart drive. We got up to GI and did weight and height (J-33lb, L-19lb) and then headed to the room. Jilli looked worn out. I figured she was just tired. She didn't talk much to the dietitian or nurse which is odd for her. Then she asked me to hold her, that her body was too weak. I held her and she wanted me to hold her like a baby. The GI came in and we talked. She commented that she has never seen Jilli like this (she has known Jilli for most of her life) and that I should keep an eye on it. The appointment mainly ended up being about Lydia (she vomits when she poops and has issues with pooping) so we started her on a med for gut bacterial overgrowth again (she had that earlier in the year) and are exploring some other med options.We then headed back to RMH and Lydia took a nap while Jilli watched TV. I put the girls in the stroller and brought them upstairs so I could eat lunch and while in the stroller Jilli fell asleep which is really strange for her. She slept for 2 1/2 hr! I called my brother and asked him to bring up the big neb because I was worried if she was sleeping like that she might be getting sick and I had the travel neb and a little bit of nebs with me but if she was getting sick I knew I would need more. Jilli woke up and her resting heart rate was 160. You could visibly see she was working to breathe and she couldn't sit up or talk. My mom got to rmh and she and I told Jilli over to the ER. The ER was busy but they got us in quickly. Once we got to a room the dr. and PA met us there quickly. They took a look at her and said she needed to be admitted, she needed labs done and an IV started. The nurse came in and started her IV and took labs and then things screeched to a halt. We got to the ER at 7pm and a few hours later I was really starting to wonder what was going on and knowing the fact that she needed her night time meds and formula. The nurse found the doctor and she came in. She had called the on call neuro and they said they didn't know how being in the hospital would help her!?!?! The ER doctor disagreed and so did we. She asked me how I was feeling and I explained to her why home was not an option. She went back and fought for Jilli. The ER tried to be as helpful as they could with getting some of her stuff but some of it they just couldn't do in the ER. Finally around 1am she was admitted.
10/24- It was after 2am before she was finally settled in the room and I was working out with emd students getting her all of her meds and formula and I went to sleep about 3am. I got up a little before 6am with the first people coming in to talk about what was going on. A lot of people were in and out of the room that day. They paged all of her doctors to let them know she was in and called in OT and PT. In therapy Jilli was able to sit up with help but was so exhausted after she was sleeping. She barely talked most of the day. She wanted to do things but was just so worn out. Her Neuromuscular doctor came up after clinic to check in on her and he came up with more off the wall ideas of tests to run... we have run all the "typical" tests at this point that now we are having to run some off the wall things. Pulmonology also came in... I wish they had looked at her chart a little better before walking in because their brilliant idea was to put her on a med she has been on for years.... They did decided to run blood gasses. The first blood gas was rough and apparently not done fast enough because it clotted so they had to come back and do another one. We also started our issues with nebs, for some reason about once a day her neb med would drop off her med list and then if I was not watching super closely she would miss the dose and start coughing. This night she was over tired and fussing and she made a med student give her the neb... it was kind of funny for the nurse and I.... That night for dinner mom, Lydia and I ran over to RMH so I could shower and Lydia got to do art therapy and play in the play room for a little bit.
10/25- I had an already scheduled thing at RMH for a check presentation with media so I put Brent in charge of rounds that day, especially after the first med student came in at 6am to tell me they had not ordered any of the tests the neuromuscular dr ordered and they were just going to send Jilli home because they were not going to cure her (yes I about went through the roof) and I was hopeful that Brent saying the same things I was saying but out of his mouth might help... it didn't but from his explanation of rounds its probably good I was not there because I might have needed something for my blood pressure. Thankfully the PT and special needs helped us communicate with the team that Jilli was not safe to take home yet. The discharge planner also called our therapy place and our home OT gave them the facts of life about how discharging Jillian with a resting heart rate of 140 and unable to sit independently was not safe. The doctors started talking about how they didn't know how to bill insurance for Jilli being in the hospital so they were worried insurance wasn't going to pay so they wanted her out... I told them the insurance is my problem and theirs is to help her, I get they are worried about patients getting a huge bill and that is a niece of their job but we can't neglect what my kids need out of fear of insurance (tell me again how our system here is amazing because insurance can't dictate care... because let me tell you the insurance companies do so much dictating of care here it is scary but hey, its a free market so that makes it more golden right....) The med students also kept saying they wanted to discharge her and she could do daily outpatient PT and OT but that is not a thing because insurance does not pay for it. Our primary gives her 10 visits a year and we have to fight the state every 6m to get weekly PT... daily just doesn't happen. On top of it this was the last day that the PT place by our house was open so we were loosing that at the same time. My aunt came over after the check presentation and visited with us for a little bit and Jilli slept most of the time. My mom brought us dinner and spent the night to help me (Brent and Lydia would go back to RMH at 8pm). They also in the morning re tested blood gas and in the late afternoon they did the blood tests her neuromuscular dr ordered and a urine test. Our special needs doctor also came in and talked to me and we brainstormed some. One of Jilli's favorite people, Holly the art therapist came in and they decorated Jilli's neb mask.
10/26- She was so much more tired this day. When special needs came in before rounds Jilli could barely look at them and they became worried and said by their assessment there was no way that Jilli could leave the hospital that day. Special needs talked to the team before rounds so rounds went a lot better. She had PT and cried during most of it because her body hurt so much and just sitting was so hard. She rested for a while after PT and we had our minister come up and pray with us and during that time Jilli was able to play on the iPad. Then OT came and they decided to bring her to the 7th floor (she was on the 11th floor) to the gym there to see if getting her out of the room helped. She was able to sit with support but then her body gave out and she almost fell out of the wheelchair coming back to the room. She then took a 2hr nap (we had a friend visit during that and she slept the whole time) and then my brother in law and in-laws came over and she slept most of the time and then when she woke up she wanted the room dark and everyone whispering. Genetics came in to talk to me and there is a brand new muscle test that just came out that they decided to run on her. Her whole exome sequence can be re-run in December so instead of us having an appointment to say to run it they are just going to automatically run it. Around 7:50 at night she was ok with the lights on again and we worked on her sitting up again and she lasted about 7min with support before she fell over and dazed. Later that night we had a nursing student. Every time a nurse goes to leave the room they always ask if they can get us anything and normally Jilli never answers them (most of the time her body is just too tired) but this night the nursing student went to leave the room and asked if we needed anything and Jilli said sheep. It was out of no where. Then when the nurse came in and went to leave Jilli said the same thing. A little while later the nursing student came in and the instructor looked through the window and they gave Jilli a stuffed sheep. They told her it had been running around the hospital and they caught it and needed her to keep it in her room so it wouldn't run around the hospital any more. Jilli got the biggest smile on her face. It was so sweet I was trying to not cry. Her art therapist also stopped by this day and Jilli was too tired to do art... it was sad but Jilli had bought some art supplies for the art room at RMH and I had given them to the art therapist Tuesday night so the art therapists colored her a thank you card that was a purple poop emoji!
10/27- We woke up to a 6am blood draw (those are rough!) Jilli was going a bit better that morning and it was decided after she did everything she needed for the day that she would be discharged to RMH. OT came in and they worked on building Jilli's new playmobil set (daddy got her one and Caroline mailed her one!) and then she rested for a while. The dance therapist came in and Jilli decided she could have us sit the bed up and wave a streamer while music played. She loved the first song, the second song she had me help her wave the streamer and by the third song she was worn out and dazed at a wall. All she was doing was waving a streamer! She wasn't even sitting independently! At rounds they let me know that they have presented our case to the Nelson group at the hospital. This is a group made up of people from every specialty for children who are perplexing the hospital. This group meets twice a year and does a full chart review and everyone talks. They agreed to take on our case to brainstorm at their next meeting but in the meantime they were did a very brief review and suggested a test. I don't know when this group meets next but I hope it is soon and I hope they have some ideas to help us. In the afternoon the art therapists created an amazing moment for Jilli. There is a theater group in the area that is doing Little Mermaid right now and they came to the hospital to put on a little show but with Jilli's needs she couldn't go down for the show so the art therapists got Ariel, Prince Eric and Ursula to come to Jilli's room after their performance! It was amazing!!!! I cried! They love her so much and I am so grateful for all of the expressive therapies! Then we headed down to IR as Jilli and Lydia both had tube changes scheduled before she was hospitalized so we went down for that. It was one of the harder tube changes for Jilli just because her body was worn out and she had been through a lot that week already but everyone in IR was great. We then headed up to the room and had a new nurse who was incharge of Jilli's discharge. At rounds that morning I had asked that since they wanted Jilli to do outpatient therapy Mon-Wed the next week if we could be discharged to RMH to make sure she could handle that without needing to come back to the hospital. Special needs had said that was fine and I said I needed them to put that in writing per RMH rules and at rounds that sounded like everyone was on board with that plan but then suddenly at discharge the team attending said no so then it became a battle because she was not well enough to be over an hour from the hospital and we had no idea how she was going to handle outpatient therapy. The nurse fought for us and RMH helped and we got it sorted out. At the same time the outpatient therapy place decided to be frustrating so the last couple of hours at the hospital was a battle but eventually we got it all worked out and got discharged. We then headed over to RMH and Jilli took a long nap. We had dinner and then rested in the room.
Saturday and Sunday were spent resting, mostly in the room. My mom brought us up more clothes and Annette brought us up our mail. Sunday we went to art therapy which the girls loved.
Monday: We spent most of the morning resting. Jilli had PT in the afternoon and she worked hard. What I didn't love was when she would walk with support her pulse ox would dip into the 60s which is far outside her normal but it would come back up. GI called in the afternoon to check in and we spent most of the rest of the day just resting.
Tuesday: Jilli has OT in the morning and then we went back to RMH to rest. In the afternoon Caroline, Stacy, Nate, Holly and Kirk came over and Brent came from work for the halloween party! It was the girls first time trick or treating. They had non food options. They also had pumpkins to paint. It was very low key and perfect for the girls. At the end Jilli has a pulse ox crash and got very silly from lack of oxygen so we headed back to the room and she rested for a while and then we headed upstairs for dinner. After dinner was art therapy and then bed.
Wednesday: We had a calmer morning and Jilli did school for the first time since getting to RMH. Both girls had PT in the afternoon and they both worked really hard. We then headed back to RMH and the girls and I did music therapy (Jilli stayed in her wheelchair instead of dancing around) and Brent worked on packing and then we checked out and headed home.
Since getting home we have been taking life calm. Resting lots. Right now Jilli is laying next to me on the couch. Her body is tired but she is working so hard and wants to do everything she could before.
So while in the hospital they started her on a 5 day round of twice daily prednisone and did nebs every 4hr. We also ran IV fluids at 51ml/hr and her feeding pump at 58ml/hr. All of our doctors from outside the hospital were amazing as well as all the nurses we had... the orange team that we had in the hospital was rather frustrating many times.
Prayer requests:
-We need insurance to approve a special seat for in the house for when crashes like this happen. Brent got one from a lending closet last weekend but it is too small for Jilli. We are hopeful that since her primary insurance didn't pay at all for her wheelchair that they will cover this seat (we were already told medicaid wont)
-They would like to increase her PT to twice a week. This already has been a big issue and too much stress. Our PT has been working hard to get this worked out but we need medicaid to approve the changes.
-Last night at 9pm one of the tests was automatically released to me and it is rather off and I am trying not to go google crazy. Our neuro nurse is out today so I was not able to hear what the doctor thinks of the results. Pray that Monday we are able to have a conversation about these tests and that maybe this leads us down a road to help Jilli. This wouldn't explain her overall but could explain these crashes she is having. I'm trying hard not to get my hopes up because we have been down a lot of dead ends but maybe this is a way to help her.
Here are some pictures from the week. I only take pictures in calm moments so they tend to catch the "best" moments in the hospital
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| the Saturday before |
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| In music therapy before it all started |
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| Lydia excited to see her NAte |
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| Jilli in GI |
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| Jilli when we got back from GI |
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| For some reason this is almost always how she lays in the ER. She was sound asleep in this picture |
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| TUG! |
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| Lydia every once and a while would just need to get on the bed to see Jilli |
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| Candy for our nurses |
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| Room decorations |
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| she spent a lot of time staring at nothing |
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| Jilli with art Holly |
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| her decorated neb mask |
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| Her playmobil set from Caroline. Most of the time she would hold a person in her hand in the bed with her |
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| Her eyes tell the story |
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| Song one |
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| Song 2 |
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| Song 3 |
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