Help the world see you through her.
Amen
Thursday, October 30, 2014
Tuesday, October 28, 2014
5 helpless feelings as Jillian's mom
I am a very independent person most of the time (I hate taking my car for an oil change and when people show up at my house asking for has for their dead car I become a chicken) I am the one who chases mice out of the building at work. I started teaching Sunday school to 3 year olds by myself when I was I middle school. I drove through Chicago trafic frequently as a relatively new driver and did it independently multiple times. While things in life scare me (I don't do haunted anything) I frequently just keep plowing through. The things I dislike to do most are not nescicarilly the hardest things but the most tedious (washing dishes, vaccuming the floor, folding laundry). The past couple of weeks have been hard. We have stayed out of the hospital for the most part the past few weeks however that has not meant health or that it is not a bunch of exhausted people at our house (we are still doing nebs about every 4hrs and just went about a week without poop)
Sometimes the best strength to keep moving forward is to look at what you have conquered before. I have been thinking about the challenging moments over the last two years. Times I have felt so helpless and have plowed forward. For me this is a list of the most helpless times I have had in this medical roller coaster. A countdown list for me to look at when I feel discouraged to look back at and say "we made though that, we can do this."
5. Sleepless nights: I wish I could say the amount of sleep I get a night has changed much in the past year, but it has not and probably will not (feeding pump), I am thankful that my body has adjusted to life with less sleep. Pre feeding tube and NG tube life brought less sleep then there is now. She use to vomit frequently during the night. She would then choke on the vomit. I stopped sleeping for a while because the choking was so frequent during the night. While there are still nights I sit and watch her breathe(a lot since this most recent vaccine) most nights she is able to sleep safely.
4. Waiting for test results: it's funny how slow it feels the world moves while you are waiting for test results. Painstakingly slow. With Jillian it feels like we are always waiting for test results. Right now it is her MRI and her immunology testing.
3. The why: we still don't have an overarching diagnosis for all of this, just a long list of what feels like random things that cause a lot of trouble for our daughter. We see a long list of doctors, and she stumps many of them. It is so disheartening for doctors to look at you like you are nuts when you explain all of the parts to what is going on. It is also frustrating to feel like because we currently don't have a name for all of this that some doctors brush us off. We keep fighting for the best for her though.
2. Watching her struggle to do basic things: people struggle, it is part of how we grow. If life was easy we would stay the same. What is hard for me is to watch her struggle with basic things and not be able to fix it. I can help her up when she falls when walking however when she is not breathing right for days at a time there is only so much I can do. When she stops pooping for days there is only so much I can do. I do what is in my power for her, but there are just some things I can't fix.
1. Watching our child go into the OR: that is the most helpless feeling I have ever had in my life. Watching Jillian go one direction and having to go another is aweful! She probably will need more broch and edg and other such things in the OR but it is still hard. 5 times now and it is not any easier.
Friday, October 24, 2014
Notes to the Doctor
I love that Children's uses an electronic chart system called "mychart" that you can keep track of almost everything on. It shows Jillian's growth chart, has the reports from all of her doctor and hospital stays, lists all of her medications and test results and it allows us to message Jillian's doctors.
This week Jillian's butt is being kicked from the immunization that she got last week. Here are copies of the messages I have sent to the doctor's office this week:
Wednesday's message:
I am writing to update you on Jillian's week after being seen in the ER this weekend.
Sunday: Jillian continued to be lethargic off and on most of the day. We continued to do neb treatments every 4 hours and started the steroids.
Monday: Monday morning she was very lethargic and did not do anything most of the morning but sit. She woke up with a cough again but it was less like a bark then on Sunday. I took her for a follow up with her ped and she said her lungs sounded ok at that point. She was a little more like herself for at the doctors office and for a short time after. We continued to do nebs every 4-5 hours. She took a nap from 1:40-4:20 which is odd for my little girl who normally naps around an hour. She woke up at 11pm coughing and vomiting. We ended up doing a neb early to help her to stop coughing.
Tuesday: She woke up really lethargic again. She only went to day care for 3 hours and spent and hour of if sitting in a chair because she was exhausted. She calmly played the rest of her time there. She took a 3 hour nap in the afternoon. She spent most of the evening resting on the couch. She would get up and play for 10-15min and then she would lay or sit and do nothing for 40 minutes or more. There was a noticeable wheeze as the day went on. We did nebs ever 4 hours
Wednesday: She woke up a little bit happier today however her cough is much more frequent. It is not as barkey however does not sound productive either. She is really struggling to keep from vomiting mucus and even putting toys in her mouth is making her gag. She is doing nebs every 4 hours and starts coughing more and more the farther she gets from taking a neb.
Please let me know if you have any questions. Thank you!
This morning's message:
Wednesday night into Thursday morning, Jillian was up many times during the night crying. We are really not sure why. It was a pain cry however we could not figure out what was bothering her. Her GI system was running really slow yesterday causing her tube to be hard to flush but that got a little better as the day went on. This may have been the cause for the pain. She continued to cough a lot yesterday. It is still a very unproductive cough. We did nebs every 4 hours. She took another long nap yesterday and spend most of the afternoon/evening sitting.
Last night was long. I was up with her until 3am coughing. We did a neb with her at 8:30pm and then put her to bed. When I went up to bed at 10pm she was coughing a little. She continued to cough more and more until she got her neb at 12:30am. She continued to cough frequently until about 3am. It was a really unproductive cough. Thankfully she was able to sleep through most of it and was just really restless but was not up crying.
This morning her eyes are very glossy and her nose is running and she is sneezing some. She has not done much this morning other then sit on the couch to look at books. Last night she got her last dose of predisone.
Currently her largest struggle with this is the cough and how tired she is. We get very short bursts of energy and then she spends most of the rest of the day sitting or laying. While Jillian has low muscle tone in her legs that causes her to sit more then most 22month olds and to get tired much more easily, this is significantly more then normal.
I do not hear a wheeze this morning however there still is some retracting going on and she is still partially stomach breathing.
I am thankful that the cough is not still like the barking she had on Sunday. This just takes so much out of her body and you can tell she is exhausted.
I have not heard back from either message yet so I am hopeful that I will hear something soon. She is in that gray zone that I hate. She is not well (or herself) however there is not a ton we can do right now.
This week Jillian's butt is being kicked from the immunization that she got last week. Here are copies of the messages I have sent to the doctor's office this week:
Wednesday's message:
I am writing to update you on Jillian's week after being seen in the ER this weekend.
Sunday: Jillian continued to be lethargic off and on most of the day. We continued to do neb treatments every 4 hours and started the steroids.
Monday: Monday morning she was very lethargic and did not do anything most of the morning but sit. She woke up with a cough again but it was less like a bark then on Sunday. I took her for a follow up with her ped and she said her lungs sounded ok at that point. She was a little more like herself for at the doctors office and for a short time after. We continued to do nebs every 4-5 hours. She took a nap from 1:40-4:20 which is odd for my little girl who normally naps around an hour. She woke up at 11pm coughing and vomiting. We ended up doing a neb early to help her to stop coughing.
Tuesday: She woke up really lethargic again. She only went to day care for 3 hours and spent and hour of if sitting in a chair because she was exhausted. She calmly played the rest of her time there. She took a 3 hour nap in the afternoon. She spent most of the evening resting on the couch. She would get up and play for 10-15min and then she would lay or sit and do nothing for 40 minutes or more. There was a noticeable wheeze as the day went on. We did nebs ever 4 hours
Wednesday: She woke up a little bit happier today however her cough is much more frequent. It is not as barkey however does not sound productive either. She is really struggling to keep from vomiting mucus and even putting toys in her mouth is making her gag. She is doing nebs every 4 hours and starts coughing more and more the farther she gets from taking a neb.
Please let me know if you have any questions. Thank you!
This morning's message:
Wednesday night into Thursday morning, Jillian was up many times during the night crying. We are really not sure why. It was a pain cry however we could not figure out what was bothering her. Her GI system was running really slow yesterday causing her tube to be hard to flush but that got a little better as the day went on. This may have been the cause for the pain. She continued to cough a lot yesterday. It is still a very unproductive cough. We did nebs every 4 hours. She took another long nap yesterday and spend most of the afternoon/evening sitting.
Last night was long. I was up with her until 3am coughing. We did a neb with her at 8:30pm and then put her to bed. When I went up to bed at 10pm she was coughing a little. She continued to cough more and more until she got her neb at 12:30am. She continued to cough frequently until about 3am. It was a really unproductive cough. Thankfully she was able to sleep through most of it and was just really restless but was not up crying.
This morning her eyes are very glossy and her nose is running and she is sneezing some. She has not done much this morning other then sit on the couch to look at books. Last night she got her last dose of predisone.
Currently her largest struggle with this is the cough and how tired she is. We get very short bursts of energy and then she spends most of the rest of the day sitting or laying. While Jillian has low muscle tone in her legs that causes her to sit more then most 22month olds and to get tired much more easily, this is significantly more then normal.
I do not hear a wheeze this morning however there still is some retracting going on and she is still partially stomach breathing.
I am thankful that the cough is not still like the barking she had on Sunday. This just takes so much out of her body and you can tell she is exhausted.
I have not heard back from either message yet so I am hopeful that I will hear something soon. She is in that gray zone that I hate. She is not well (or herself) however there is not a ton we can do right now.
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| Chilling on the couch |
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| Curled up with her lamb. She has been loving her dolls and stuffed animals this week |
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| I love that even though she does not feel great, we still see little peaks of her smile sometimes. She has read a lot of books this week |
Tuesday, October 21, 2014
Sickness update
Yesterday afternoon brought a really long nap for jillian. She slept from 1:40-4:20. For my child who goes to bed at 8pm and many nights does not fall asleep until sometime after 10, wakes up at 6, and many days we get a half hour to an hour nap a day, a nap like that is crazy! At bed time last night she was wired from a neb (we did a neb in the living room at 8 and then brought her to bed) she was sassy in her crib until 9:30ish. She was just so wired from the meds.
I am so grateful for all of the extra work Brent is having to do right now. He is having to do a lot of the Jillian medical stuff that I normally do but am to exhausted (and shaky) right now to do!
At 11pm I woke up to vomit! It was lung vomit. She would cough and cough and then puke. It was a cycle. Brent gave her a neb a little early to help her through it.
I woke up at 4am to her coughing a lot. I had to be to work at 6am today to cover for someone so I ended up just getting up.
She was pretty sleepy this morning but perked up when daddy brought her to day care today. She rested for an hour while at day care (she was only there for 3hr) On the way home from day care she fell asleep and slept until 3:30! Her body is working hard! Right now she is sitting on my lap wheezing. She is working on getting the junk out of her lungs. She is doing better then Sunday morning though cause she is a lot more allert.
Since getting up from her nap she has sat and read books and cuddled on the couch with me. We are watching a kids sign language movie right now. Some words she retains better with signs instead of verbal words so we have been teaching her signs. I found a sign langue show on netflix today. Yeah! It does not make up for missing therapy yesterday but at least she is getting some exposure to signs this week and I am learning more.
I am feeling better slowly but surely. Today my muscles in my chest and belly are tight and tired. My cough comes goes. I always forget how much heart burn I get from meds for my asthma. I took a nap today while jilli napped which is crazy for me.
Slowly but surely our bodies will keep fighting off the crazy attaches they had this weekend.
I am so grateful for all of the extra work Brent is having to do right now. He is having to do a lot of the Jillian medical stuff that I normally do but am to exhausted (and shaky) right now to do!
Ps. Have I told you this week that I really dislike how Jillian's body reacts to vaccines and how I react to latex?
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| Jillian with a book that came in the mail for her yesterday from Aunt Sandi! She was so happy about it she did not want to look at the camera. It came at a perfect time yesterday on our way to the doctor. |
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| Cuddling on the couch this afternoon. This is what the girls at our house are doing today! |
Monday, October 20, 2014
12 hours... two ER trips!
So we had an eventful weekend!
Saturday afternoon/evening we had a lovely time at a friend of ours wedding reception. Brent was the DJ and it was fun to see a lot of people from the Boy Scout troop that Seth and Brent are a part of.
My night took a turn. I came in contact with latex... I took a neb and a couple of Benadryl and hoped for the best. We gave Jillian a neb because she was not breathing great. My respiratory rate was dropping, heart rate rising, I had hives all over, and I could not walk without coughing. Brent and my dad were still at the reception so mom got Jilli and I to the car and took me to the ER. They did an IV with meds and a couple of nebs (yeah for 3 nebs in an hour and a half) and I got discharged during the night. I went back to my parents and crashed. I woke up around 5 having a hard time breathing and moved to the living room and did a neb. I fell back to sleep around 8am on the couch.
Around 9 I woke up to the sound that makes my heart cry. It was the sound of the horrid cough the Jillian gets after getting shots. She was coughing so hard she could not catch her breath. By the time I got back to the room my mom and Brent were giving her a neb. By the end of the neb the coughing had subsided but she was retracting. We brought her up the the Children's ER.
They did vitals. Her pulse ox was 96 but strangely her rectal temp was 96.9. She was really lethargic. A doctor came in and listened to her and we talked. She decided to call immunology.... they gave her the shot, they could deal with it. They decided to give her steroids and have us continue to do nebs every 4 hours. Since we are use to do all of that at home, they let us go. They also sent a script for a thrush med again. That had been gone for months however her body was not able to keep it at bay with everything else going on.
So we went and dropped off my scripts at Walgreens and went through the Wendy's drive thought to get lunch (it was 2pm at this point) and went and hung out at my parents. Brent went later and picked up our meds and then we went home.
Today Jillian woke up with a cough however it was nothing like yesterday's. She was pretty sleepy this morning and would look at books for a little bit and then would come and curl up with my a rest for a while. We had a follow up today with her ped. She read the note this morning from Children's and she thought it must be wrong because who would give Jillian a vaccine, let alone MMR. When we got there she understood it all better but was still surprised. She had a medical student with her and she explained how this is how Jillian reacts to shots and no one is sure why. She said the steroids are working and her lungs are sounding better. She said to keep doing the nebs as needed.
I am feeling better as the day goes on. I am still coughing but doing better. Mainly just exhausted. We made it through!
Saturday afternoon/evening we had a lovely time at a friend of ours wedding reception. Brent was the DJ and it was fun to see a lot of people from the Boy Scout troop that Seth and Brent are a part of.
My night took a turn. I came in contact with latex... I took a neb and a couple of Benadryl and hoped for the best. We gave Jillian a neb because she was not breathing great. My respiratory rate was dropping, heart rate rising, I had hives all over, and I could not walk without coughing. Brent and my dad were still at the reception so mom got Jilli and I to the car and took me to the ER. They did an IV with meds and a couple of nebs (yeah for 3 nebs in an hour and a half) and I got discharged during the night. I went back to my parents and crashed. I woke up around 5 having a hard time breathing and moved to the living room and did a neb. I fell back to sleep around 8am on the couch.
Around 9 I woke up to the sound that makes my heart cry. It was the sound of the horrid cough the Jillian gets after getting shots. She was coughing so hard she could not catch her breath. By the time I got back to the room my mom and Brent were giving her a neb. By the end of the neb the coughing had subsided but she was retracting. We brought her up the the Children's ER.
They did vitals. Her pulse ox was 96 but strangely her rectal temp was 96.9. She was really lethargic. A doctor came in and listened to her and we talked. She decided to call immunology.... they gave her the shot, they could deal with it. They decided to give her steroids and have us continue to do nebs every 4 hours. Since we are use to do all of that at home, they let us go. They also sent a script for a thrush med again. That had been gone for months however her body was not able to keep it at bay with everything else going on.
So we went and dropped off my scripts at Walgreens and went through the Wendy's drive thought to get lunch (it was 2pm at this point) and went and hung out at my parents. Brent went later and picked up our meds and then we went home.
Today Jillian woke up with a cough however it was nothing like yesterday's. She was pretty sleepy this morning and would look at books for a little bit and then would come and curl up with my a rest for a while. We had a follow up today with her ped. She read the note this morning from Children's and she thought it must be wrong because who would give Jillian a vaccine, let alone MMR. When we got there she understood it all better but was still surprised. She had a medical student with her and she explained how this is how Jillian reacts to shots and no one is sure why. She said the steroids are working and her lungs are sounding better. She said to keep doing the nebs as needed.
I am feeling better as the day goes on. I am still coughing but doing better. Mainly just exhausted. We made it through!
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| We look great! |
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| Curled up taking a neb |
Thursday, October 16, 2014
Imunology
We don't see enough specialists at Children's (hahaha) so yesterday we got to meet a new department...
When we were in Airo Digestive the ENT referred Jillian to immunology because of some suspected allergies, she always seams to be sick with something and it takes her longer then normal to bounce back, and because she struggles so much with vaccines. So, I called and got us an appointment.
On days were we meet I new doctor I have butterflies in my tummy! I told my coworker that it is like going on a blind date. You have no idea if you are going to get along with the person, if they will listen to you or if you will have the same plan. We have had (and still have) some amazing doctors on this journey who have helped Jillian and always wanted the best. They have listened and worked with us. There have been some that stand in the middle that do their job and while I am sure they care, they are not always the easiest to work with or the most open or have the best communication. Then there are the doctors that I would really like to never talk to again.... EVER. There are three specifically that are on the Amanda Crap List. Luckily the likely hood of us seeing one of them is next to none because he started his own practice however at anytime we might have to deal with the other two. It always scares me when we meet a new doctor that they are not going to listen to me or understand what I am talking about. Jillian has no overarching diagnosis. She has a lot of strange symptoms that have yet to make sense to anyone.
So I did what I normally do before we meet a doctor... I look them up on-line to find out about this guy. Everything about him that I read was glowing. He was voted one of the nations top doctors for 2013-2014. He has done a lot of great stuff in medicine. Honestly this made me feel a mix of hopeful that he was as good as the internet made him out to be, and a littler nervous that he was book smart and not talk to parent smart.
I was blown away! He is one of the most child and family centered doctors we have met. The whole clinic was great. The person weighing Jillian understood the need for us to get a good weight on her and they were fine with us undressing her first so we were not weighing her clothes (some clinics get really annoyed by this). Her weight and height are the exact same as they have been for months. She is back under the 5th percentile for both weight and height. She still sits at at 50th percentile for wight for height. Jillian hates the pulse ox and blood pressure and the lady doing those was great (her pulse ox was low for her yesterday... not sure why). The nurse that came in first was really good. Then the fellow came in. She took the time BEFORE she walked in the room to go over Jillian's chart. To me that is huge. I can quickly give someone the highlights of the last 22mo however hashing through it all takes a long time and I end up forgetting parts. There is too much to remember. The fellow talked with us for a while. She looked at Jillian and said that we would probably be doing blood work and that for one of the tests she would need to have blood drawn, get a vaccine, and then have more blood drawn 4-6 weeks later. This I was not expecting (actually this kinda hit me like a train and I did not know I was standing on the tracks). She said we would talk about in more when the doctor came in.
The doctor came in and we talked. He really wanted to hear what we had to say. He said that he agreed with the fellow that we needed to do blood tests and the testing with the vaccine. I loved that he had a conversation with us about the vaccine issues and did not just look down on us for not having her shots up to date. Many medical professionals have judged us for that and she is not up to date on her shots for medical reasons. With him it was a conversation about how he could best help in that area and what was most important. The decision was to give her the MMR shot.
We went down to the lab. They needed a lot of blood. They had to calculate it out to make sure they could take as much blood out of her in one day as they needed. Luckily they could. Jillian was not happy about it all but she was a trooper about it.
Now we wait. Ever feel like you are sitting on a bomb and waiting for it to go off? That is what I feel like right now. We are waiting for this shot to take its affects. It always takes a few days and then by 10 days out she is so sick she can't handle it and we need to see a doctor. So now we wait. We joked with them that they should just schedule us a room for 10 days from the shot. Hoping we don't need it, but reality and the past is very vivid in our minds.
The doctor said the he likely does not hold the magic piece to all of Jillian's problems. He doubts he will be able to solve the big picture stuff for us. We kinda stumped him. He said he has never seen a kid that gets respiratory symptoms from a shot. He told us his plan was to talk about her case with other doctors in the department to see if anyone else had an idea. I am thankful that he is not too prideful to collaborate with others to try to get my child the best care that he can. That means a lot to me. It is always a strange feeling when you stump a really smart doctor, but I feel like he is going to do the best he can for Jillian. Like we told them yesterday, we have a lot of tests that come back "normal," we don't want something to be wrong with our daughter however something is wrong with our daughter and we would love some answers. We always say we want them to tell us what is wrong... just don't let it be something too bad! We watch our daughter's body fail her daily (the fellow touched Jillian's legs yesterday and without us telling her she asked about Jillian's low tone because she could feel it in just touching her legs) and we want some reason why. We want something to point our finger at and say "this is the problem." The older she gets the less likely that I feel that the problem will be easily fixable but we will keep looking. Our goal is to give her the best life possible, God gave her to us here on this earth and that is the least we can do for her, to try to give her the best!
When we were in Airo Digestive the ENT referred Jillian to immunology because of some suspected allergies, she always seams to be sick with something and it takes her longer then normal to bounce back, and because she struggles so much with vaccines. So, I called and got us an appointment.
On days were we meet I new doctor I have butterflies in my tummy! I told my coworker that it is like going on a blind date. You have no idea if you are going to get along with the person, if they will listen to you or if you will have the same plan. We have had (and still have) some amazing doctors on this journey who have helped Jillian and always wanted the best. They have listened and worked with us. There have been some that stand in the middle that do their job and while I am sure they care, they are not always the easiest to work with or the most open or have the best communication. Then there are the doctors that I would really like to never talk to again.... EVER. There are three specifically that are on the Amanda Crap List. Luckily the likely hood of us seeing one of them is next to none because he started his own practice however at anytime we might have to deal with the other two. It always scares me when we meet a new doctor that they are not going to listen to me or understand what I am talking about. Jillian has no overarching diagnosis. She has a lot of strange symptoms that have yet to make sense to anyone.
So I did what I normally do before we meet a doctor... I look them up on-line to find out about this guy. Everything about him that I read was glowing. He was voted one of the nations top doctors for 2013-2014. He has done a lot of great stuff in medicine. Honestly this made me feel a mix of hopeful that he was as good as the internet made him out to be, and a littler nervous that he was book smart and not talk to parent smart.
I was blown away! He is one of the most child and family centered doctors we have met. The whole clinic was great. The person weighing Jillian understood the need for us to get a good weight on her and they were fine with us undressing her first so we were not weighing her clothes (some clinics get really annoyed by this). Her weight and height are the exact same as they have been for months. She is back under the 5th percentile for both weight and height. She still sits at at 50th percentile for wight for height. Jillian hates the pulse ox and blood pressure and the lady doing those was great (her pulse ox was low for her yesterday... not sure why). The nurse that came in first was really good. Then the fellow came in. She took the time BEFORE she walked in the room to go over Jillian's chart. To me that is huge. I can quickly give someone the highlights of the last 22mo however hashing through it all takes a long time and I end up forgetting parts. There is too much to remember. The fellow talked with us for a while. She looked at Jillian and said that we would probably be doing blood work and that for one of the tests she would need to have blood drawn, get a vaccine, and then have more blood drawn 4-6 weeks later. This I was not expecting (actually this kinda hit me like a train and I did not know I was standing on the tracks). She said we would talk about in more when the doctor came in.
The doctor came in and we talked. He really wanted to hear what we had to say. He said that he agreed with the fellow that we needed to do blood tests and the testing with the vaccine. I loved that he had a conversation with us about the vaccine issues and did not just look down on us for not having her shots up to date. Many medical professionals have judged us for that and she is not up to date on her shots for medical reasons. With him it was a conversation about how he could best help in that area and what was most important. The decision was to give her the MMR shot.
We went down to the lab. They needed a lot of blood. They had to calculate it out to make sure they could take as much blood out of her in one day as they needed. Luckily they could. Jillian was not happy about it all but she was a trooper about it.
Now we wait. Ever feel like you are sitting on a bomb and waiting for it to go off? That is what I feel like right now. We are waiting for this shot to take its affects. It always takes a few days and then by 10 days out she is so sick she can't handle it and we need to see a doctor. So now we wait. We joked with them that they should just schedule us a room for 10 days from the shot. Hoping we don't need it, but reality and the past is very vivid in our minds.
The doctor said the he likely does not hold the magic piece to all of Jillian's problems. He doubts he will be able to solve the big picture stuff for us. We kinda stumped him. He said he has never seen a kid that gets respiratory symptoms from a shot. He told us his plan was to talk about her case with other doctors in the department to see if anyone else had an idea. I am thankful that he is not too prideful to collaborate with others to try to get my child the best care that he can. That means a lot to me. It is always a strange feeling when you stump a really smart doctor, but I feel like he is going to do the best he can for Jillian. Like we told them yesterday, we have a lot of tests that come back "normal," we don't want something to be wrong with our daughter however something is wrong with our daughter and we would love some answers. We always say we want them to tell us what is wrong... just don't let it be something too bad! We watch our daughter's body fail her daily (the fellow touched Jillian's legs yesterday and without us telling her she asked about Jillian's low tone because she could feel it in just touching her legs) and we want some reason why. We want something to point our finger at and say "this is the problem." The older she gets the less likely that I feel that the problem will be easily fixable but we will keep looking. Our goal is to give her the best life possible, God gave her to us here on this earth and that is the least we can do for her, to try to give her the best!
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| Waiting for labs. I was trying to distract her |
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| Jillian sleeping on my legs Tuesday night. She fell over with exhaustion |
Sunday, October 12, 2014
A trip to the Pumpkin patch
We had a fun relaxing weekend. Friday night we spent hanging out at home making yummy food. I had been wanting steak and potatoes all week so we grilled out and watched TV. Saturday morning we cleaned around the house and Brent mowed the lawn. Then we headed into Kenosha and met my parents and Mikaley and went to the pumpkin farm. It was a lot of fun and Jillian LOVED it. We then went to Pets and played. The rest of the weekend was spent hanging out. It was calm and I loved it! Here are pictures!
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| Her seeing herself in her Minnie Mouse Costume for the first time |
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| She was "playing" with the baby in the mirror |
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| trying to put her head band on |
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| She has learned how to shrug her shoulders lately. It is adorable |
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| She was trying to put it back on my herself |
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| Minnie Mouse with a feeding tube backpack on! |
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| pointing at Big Bird |
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| Cheese! Isn't she cute! |
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| Looking at the animals. This is as close to animals as she gets (yes even at the zoo... animal allergies...) |
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| Ever seen a cuter Minnie Mouse with a feeding tube... she it too cute! |
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| My pumpkin |
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| She is kinda goofy! We ended up running into another family at the pumpkin farm with a kid with a tube. It is sweet to run into other families of tubies. We have this weird secret club that none of us signed up for but would not trade our kids for the world. It is always kinda weird tho when you notice another tube kid in public because you never know how to start the conversation |
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| One of her daddy's favorite movies |
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| Grandma, Jilli and mommy |
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| Jillian's favorite princess |
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| Tink! She was not too interested in this one |
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| BUBBLES! These are one of her favorite things because she knows how to say "bubbles" clear as day (she substitutes "bubbles" for most words that start with B) |
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| Tube girl and her bubbles :|) |
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| Frozen! She is in love with this movie like the rest of the world |
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| Our little snow man |
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| She wanted so badly to look in there |
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| Jilli and "Bumpa" She brought tears to everyone's eyes this weekend when she called him "Bumpa" It was the first time we got anything more then a "g" sound when she tried to say grandma or grandpa, and it is very rare that she even tries and super rare that she says anyone's name so it was super sweet! |
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| Daddy helping her up the stairs. It was a GREAT PT work out! |
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| She is starting to love slides. Thank you therapy! |
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| Just smash the feeding pump... |
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| Playing in grandma's new Hylander. It seats 8 so everyone fits! |
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| Skirts go on your head right? |
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| Or how about like a lion? |
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| My sweet girl! |
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| Hanging out in her car seat |
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| She was sad because I asked her to take her picture in her cute outfit |
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| She LOVES her coat |
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| Her she was crying because I asked her to take a picture without her coat on |
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| This was as good of a picture I got of her in her new boots. She LOVES her new boots. |
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| Sharing passy. Happy now that she has a coat on |
Sunday, October 5, 2014
Life of a mom with a medically complex kid
As I was talking with Dan and Brent yesterday and venting about something, the comment out of Dan's mouth was "You live a very different life." I don't think that way often. I get up in the morning, drag my butt to the coffee maker, get myself and my child ready for the day, go to work, cook dinner, do the bedtime routine and then start the day over, just like parents all over the world. I don't frequently see myself as any different. My life is just what its. This is the only life I know. I don't know what it is like to be a mom of a kid that is not medically complex because even though we did not know it, stuff was not right from birth. To a degree I am grateful that it was from day one because I don't know how I would have handled it if she was "typical" for may years of her life and then something life altering occurred and changed everything. I have the "blissful" ignorance of only knowing this kind of mothering. While we did not know day one that our road was going to be filled with doctors, we had little clues that stuff was not quite right. From time one she never latched on right when nursing. The vomiting started right away. In the beginning they assured me that some kids swallowed a lot of amniotic fluids and that this was "normal" however I noticed that look on their face as they were bringing fresh linens into the room again that the vomiting should not be this much. Within a few days her weight started to drop off more and more and we were having to go in for weight checks and visits to the lactation consultant. By Christmas eve (she was born December 14th) she had lost almost 2lb since being born and we were coming up with a plan to help her. That was the first day I cried that something was not right. By the 3rd of January Jillian was put on her first acid reflux medication. I could not believe that I was giving my tiny baby medication.
Over the next month Jillian would continue to not gain weight like she should and vomit all of the time. I was nursing her as long as she could (she would become very fatigued and would fall asleep or would have to stop from so much vomiting) I would then give her an once in a bottle so that she would get some "easy" calories and not have to work so hard. The vomit still came with the bottles too. I will never forget the look on my Aunt Sandi's face the first time she witnessed Jillian choking on milk. The sound scared me and so did the look on Jillian's face but no one was really listening to me and I kept hearing "many babies spit up." The look on Aunt Sandi's face that day confirmed that this was not "normal." By the first week of February that year Jillian had her first hospital admission. They checked for a lot of scary things that first day. We spent 5 days there and left with a child who was not puking as much as when she arrived but still was not right. The doctor that we had inpatient pulled me aside on our last night before attending changed for the week and someone else took over our case. She admitted that she was scared that they were going to have to tell us that something was terribly wrong with our baby but she was happy to see that we would be able to go home. A doctor at Children's, and no, not a resident just starting off, a well seasoned doctor was frightened with the way my child presented. I wish that I would run into her again someday. I wish I could tell her what the journey has been like since because she was the first one who really noticed that something more was going on. She referred us to GI for the first time while we were there and was the first person who really looked into why everything was happening instead of just trying to cram more milk into a vomiting child. While that hospital visit did not solve anything in changed a lot of things. Jillian went to having all intake measured (ie: I stopped nursing her and went to pumping all of her milk and giving it to her in bottles) We also then started seeing other specialists to try to help her. We followed up with GI 2 weeks after that first hospital trip and they decided that we needed to start fortifying Jillian's milk with Alumentum to try to help her gain weight (I about fell over at the cost of that... if only I knew then what the price for her to "eat" now would be)
By March we were in the hospital again. That was the visit that Jillian got her first NG tube that was used for food (during her February visit she had an NG tube for 24 hours that just drained into a diaper to get excess air and stomach acid out of her stomach)The doctor on the floor was surprised that GI wanted to put a tube in. He told us it would probably only be for a few weeks (this was a much younger floor doctor then our first one) GI said it would stay as long as it needed to. You could tell by the way he talked that he knew it would be longer then a couple of weeks. We knew we needed to do something to help our kid.
By April she was in the hospital again. This time it was to switch her from a NG tube to a NJ tube because she was still vomiting so much. Before we changed the type of tube Jillian's ped sat me down and told me we all needed to learn CPR because she was afraid we would need to use it because Jillian would choke on her vomit. Back in those days choking on vomit happened often, mainly at night, so I gave up sleeping to watch her breath and help her through the nights.
Jillian has had 9 hospital admissions, each with different lengths. She has had over 70 doctor visits to Children's alone (her ped is not at Children's, she is at Aurora and Aurora's website does not make it as easy to count dr visits) She has been in the OR 5 times since she was 7 months old and in interventional radiology more times then I remember. We see therapists weekly to help her try to catch up to her peers developmentally. Her health history is long and she is just 21mo old.
This is our life and as much as I normally don't admit it, it is different. It just is. There is no way that all of this could go on and our life be like that of a typical almost 2 year old.
Here is just a few differences:
-Last night as when we went out to dinner the waitress brought Jillian a kid's cup with water when she brought our drinks. I smiled and said "thank you" because that was the polite thing to do and because it would just make the waitress feel bad if I told her Jilli could not drink it. She was trying to be nice and I was not in the mood to explain. Mikaley ended up drinking it. The manager did come over and tell us how impressed he was with how well our kid was behaved.
-Going out to eat gets more interesting as she gets older. We have the advantage that she is so tiny so most people think she is younger then she is and are still ok with her not eating. That will change. Sometimes we get odd looks when we say she is not eating. Sometimes I explain it to people. Sometimes I say "she does not eat." That typically gets me odd looks which is not what I am going for but when I am exhausted that is all that comes out.
-Add to it that at this age most toddlers are entertained at the table by food. We don't have that distraction. We have worked hard to teach Jillian that she sits during a meal and once everyone is done eating she can sit on someone's lap. It is too hard to hold her and eat. This means that when we go out we bring lots of toys with us. Sometimes I start to feel like a circus clown pulling toys out of a bag and sometimes we are those parents who lets their kid play on the iPad all of dinner. As she gets older we may end up going out to eat less and less (not that we do a lot now). Right now she does not see that she should be eating too, however someday that may change. One of the blessings that comes from her being born with all of this is that we have not had to take food away when she was old enough to realize it. When she stopped taking bottles she was already only taking a really small amount and when she moved to the NJ tube she went to just water in bottles, which she hated and still puked so those only lasted a short time. Her oral motor skills are still that of a young infant but she has never needed more. She has done oral tastes before (less then a tablespoon) with baby food and can take food off of a spoon but those always went really badly and have never lasted more then a week before she starts to refuse to do it out of pain and a list of large side effects (she has absent seizure like events from reflux anytime she is off of her meds or has anything orally, she also has vomiting, coughing and aspirating too)
-We still don't experience this sleeping through the night thing. Her pump goes off every 4 hours... and that includes 2am every night. I joke that my kid has learned how to sleep though the night but her pump has not. She needs to still be checked on each night at 2am too to make sure she has not tangled herself in wire or it coughing/vomiting. Vomiting is far less frequent these days however it is not nonexistent.
-I want to know when it became socially normal that once you have an almost 2 year old that random strangers would ask you when you are going to have another. This just happened to me again today. I before having Jillian was unaware that this seamed to be a social norm apparently. I'll clear this one up right now... When I was little I always said I wanted 12 children. I am older and wiser now and even before having Jillian I would laugh when I was remind about me saying that when I was little. Before Jillian, Brent and I talked about how many children we wanted and how far apart we wanted them to be. Getting pregnant with Jillian was a lot of trust in God and a lot of months of crying because it was not a quick process. Now I have a medically complex kid and have not slept in 2 years. We still don't 100% know what is "wrong" with Jillian however it looks like she probably has some rare genetic condition. That changes things when you talk about having more kids. It makes you think about things differently. Maybe someday we will have another child but unless God decides otherwise, it probably will not be anytime soon. So for now when random people ask this very personal question I will just smile and say "not now"
-Your mind is different once you have a kid with special needs. I have read other blogs from other moms that talk about how you can't unlearn what you know. All of that time in the hospital changes you. It makes you callus to some things (sorry, it does) This has changed me. It had to. It has made me stronger in ways I did not know I was weak. It has given me a voice in situations I would have normally been silent it (two years ago I would not have stood up to a doctor like I did this week, I know because 2 years ago I left a BAD ob/gyn without ever telling them why I left because I did not want to hurt anyone's feelings...) It gives a new perspective to the saying "in the world but not of it." I have gotten that saying before having been a christian in a public school, however I see it now too in being a special needs mom in a sea of moms without special needs kids. I feel like in some ways I can't relate to them and they can't relate to me. This is why a majority of special needs moms feel isolated from other moms, because the two sides don't know how to relate to each other. I don't get the world of play dates and picky eaters and they don't understand weekly therapy and the weird medical language I speak. It becomes easier to separate. It makes relationships more work in a time when you don't have extra energy.
-As Jillian approaches two soon I have been thinking a lot. Stretches of time when we are at doctors a lot normally gets me thinking. I have been thinking about what I thought now would look like, what now does look like, and my thoughts for the future. Thoughts for the future are different when you have a medically complex kid. Your goals are different and how you go about meeting those goals is different. Developmentally Jillian is not where she should be. She is about 6mo behind in gross motor. Her speech is the largest delay. Jillian learns words and then looses them. We have started the testing for apraxia of speech. This means we will be seeing speech for a llllloooonnnnnnggggg time. Jillian's logic skills however are in the 75th percentile. She is a smart cookie her body just does not do what she wants/needs it to do. She also has many skills that she can do but can not do for long. Jillian can walk. She can not walk for every long. Her endurance is not anywhere close to what it should be. There is a big difference between being able to do something and being able to do it developmentally appropriately. People will see that Jillian is able to walk and say a couple of words (my kid is 21mo old and is just starting to refer to me as moma... that is a huge accomplishment at our house) they think that she is "cured" of whatever was going on when she was little. Honestly her stomach can handle less then it use to and her lungs are not as strong. She is the SAME weight as she was this time last year. She is an inch taller then a year ago however she is falling off the growth chart again. She is 3 inches shorter then she should be and at this age that is a lot. She looks more like a toddler and she is at the 50th percentile for weight for height so she does not look as tiny as she is. Her tube and belt add to that illusion too. They make her look a lot bigger around then she is. This leads to the comment "she looks healthy to me." Honestly, this comment ticks me off... a lot. I know people don't mean harm by it but it feels like they are saying we are crazy when we talk about what is going on with her and makes us not want to talk to that person anymore because it is one of those comments that for me ends a conversation. Sometime I will write a blog post about this to share with the world because I think that most people don't mean for this reaction when they say it but honestly to me when people say it, it hurts a lot.
-I always worry too that people will take all of this that we don't love our life or are grateful for everything we have. We LOVE our life. We LOVE our little girl. Jillian would NOT be the same person without all of this. She is a strong, determined little girl and a lot of that comes out of the circumstances in her life. She is sweet and kind and lights up the world. She brings smiles to doctors and nurses that have a very stressful job. She was put on this earth for a reason. She was put on this earth with all of her struggles for a reason. We LOVE her just the way she is and if I changed all of this health stuff she would not be the same person. That does not mean that I wish her any of the pain that she goes through. I always want people to hear the hope that we have in all of this (even though this is most likely a life long disorder that will not get better). We do have hope. We have hope for our future. We have hope for all of the things that God is teaching us in all of this. We have love and joy and peace. God has given us the opportunity to be the parents to an amazing little girl. We are the blessed ones in all of this because we get to know her.
Over the next month Jillian would continue to not gain weight like she should and vomit all of the time. I was nursing her as long as she could (she would become very fatigued and would fall asleep or would have to stop from so much vomiting) I would then give her an once in a bottle so that she would get some "easy" calories and not have to work so hard. The vomit still came with the bottles too. I will never forget the look on my Aunt Sandi's face the first time she witnessed Jillian choking on milk. The sound scared me and so did the look on Jillian's face but no one was really listening to me and I kept hearing "many babies spit up." The look on Aunt Sandi's face that day confirmed that this was not "normal." By the first week of February that year Jillian had her first hospital admission. They checked for a lot of scary things that first day. We spent 5 days there and left with a child who was not puking as much as when she arrived but still was not right. The doctor that we had inpatient pulled me aside on our last night before attending changed for the week and someone else took over our case. She admitted that she was scared that they were going to have to tell us that something was terribly wrong with our baby but she was happy to see that we would be able to go home. A doctor at Children's, and no, not a resident just starting off, a well seasoned doctor was frightened with the way my child presented. I wish that I would run into her again someday. I wish I could tell her what the journey has been like since because she was the first one who really noticed that something more was going on. She referred us to GI for the first time while we were there and was the first person who really looked into why everything was happening instead of just trying to cram more milk into a vomiting child. While that hospital visit did not solve anything in changed a lot of things. Jillian went to having all intake measured (ie: I stopped nursing her and went to pumping all of her milk and giving it to her in bottles) We also then started seeing other specialists to try to help her. We followed up with GI 2 weeks after that first hospital trip and they decided that we needed to start fortifying Jillian's milk with Alumentum to try to help her gain weight (I about fell over at the cost of that... if only I knew then what the price for her to "eat" now would be)
By March we were in the hospital again. That was the visit that Jillian got her first NG tube that was used for food (during her February visit she had an NG tube for 24 hours that just drained into a diaper to get excess air and stomach acid out of her stomach)The doctor on the floor was surprised that GI wanted to put a tube in. He told us it would probably only be for a few weeks (this was a much younger floor doctor then our first one) GI said it would stay as long as it needed to. You could tell by the way he talked that he knew it would be longer then a couple of weeks. We knew we needed to do something to help our kid.
By April she was in the hospital again. This time it was to switch her from a NG tube to a NJ tube because she was still vomiting so much. Before we changed the type of tube Jillian's ped sat me down and told me we all needed to learn CPR because she was afraid we would need to use it because Jillian would choke on her vomit. Back in those days choking on vomit happened often, mainly at night, so I gave up sleeping to watch her breath and help her through the nights.
Jillian has had 9 hospital admissions, each with different lengths. She has had over 70 doctor visits to Children's alone (her ped is not at Children's, she is at Aurora and Aurora's website does not make it as easy to count dr visits) She has been in the OR 5 times since she was 7 months old and in interventional radiology more times then I remember. We see therapists weekly to help her try to catch up to her peers developmentally. Her health history is long and she is just 21mo old.
This is our life and as much as I normally don't admit it, it is different. It just is. There is no way that all of this could go on and our life be like that of a typical almost 2 year old.
Here is just a few differences:
-Last night as when we went out to dinner the waitress brought Jillian a kid's cup with water when she brought our drinks. I smiled and said "thank you" because that was the polite thing to do and because it would just make the waitress feel bad if I told her Jilli could not drink it. She was trying to be nice and I was not in the mood to explain. Mikaley ended up drinking it. The manager did come over and tell us how impressed he was with how well our kid was behaved.
-Going out to eat gets more interesting as she gets older. We have the advantage that she is so tiny so most people think she is younger then she is and are still ok with her not eating. That will change. Sometimes we get odd looks when we say she is not eating. Sometimes I explain it to people. Sometimes I say "she does not eat." That typically gets me odd looks which is not what I am going for but when I am exhausted that is all that comes out.
-Add to it that at this age most toddlers are entertained at the table by food. We don't have that distraction. We have worked hard to teach Jillian that she sits during a meal and once everyone is done eating she can sit on someone's lap. It is too hard to hold her and eat. This means that when we go out we bring lots of toys with us. Sometimes I start to feel like a circus clown pulling toys out of a bag and sometimes we are those parents who lets their kid play on the iPad all of dinner. As she gets older we may end up going out to eat less and less (not that we do a lot now). Right now she does not see that she should be eating too, however someday that may change. One of the blessings that comes from her being born with all of this is that we have not had to take food away when she was old enough to realize it. When she stopped taking bottles she was already only taking a really small amount and when she moved to the NJ tube she went to just water in bottles, which she hated and still puked so those only lasted a short time. Her oral motor skills are still that of a young infant but she has never needed more. She has done oral tastes before (less then a tablespoon) with baby food and can take food off of a spoon but those always went really badly and have never lasted more then a week before she starts to refuse to do it out of pain and a list of large side effects (she has absent seizure like events from reflux anytime she is off of her meds or has anything orally, she also has vomiting, coughing and aspirating too)
-We still don't experience this sleeping through the night thing. Her pump goes off every 4 hours... and that includes 2am every night. I joke that my kid has learned how to sleep though the night but her pump has not. She needs to still be checked on each night at 2am too to make sure she has not tangled herself in wire or it coughing/vomiting. Vomiting is far less frequent these days however it is not nonexistent.
-I want to know when it became socially normal that once you have an almost 2 year old that random strangers would ask you when you are going to have another. This just happened to me again today. I before having Jillian was unaware that this seamed to be a social norm apparently. I'll clear this one up right now... When I was little I always said I wanted 12 children. I am older and wiser now and even before having Jillian I would laugh when I was remind about me saying that when I was little. Before Jillian, Brent and I talked about how many children we wanted and how far apart we wanted them to be. Getting pregnant with Jillian was a lot of trust in God and a lot of months of crying because it was not a quick process. Now I have a medically complex kid and have not slept in 2 years. We still don't 100% know what is "wrong" with Jillian however it looks like she probably has some rare genetic condition. That changes things when you talk about having more kids. It makes you think about things differently. Maybe someday we will have another child but unless God decides otherwise, it probably will not be anytime soon. So for now when random people ask this very personal question I will just smile and say "not now"
-Your mind is different once you have a kid with special needs. I have read other blogs from other moms that talk about how you can't unlearn what you know. All of that time in the hospital changes you. It makes you callus to some things (sorry, it does) This has changed me. It had to. It has made me stronger in ways I did not know I was weak. It has given me a voice in situations I would have normally been silent it (two years ago I would not have stood up to a doctor like I did this week, I know because 2 years ago I left a BAD ob/gyn without ever telling them why I left because I did not want to hurt anyone's feelings...) It gives a new perspective to the saying "in the world but not of it." I have gotten that saying before having been a christian in a public school, however I see it now too in being a special needs mom in a sea of moms without special needs kids. I feel like in some ways I can't relate to them and they can't relate to me. This is why a majority of special needs moms feel isolated from other moms, because the two sides don't know how to relate to each other. I don't get the world of play dates and picky eaters and they don't understand weekly therapy and the weird medical language I speak. It becomes easier to separate. It makes relationships more work in a time when you don't have extra energy.
-As Jillian approaches two soon I have been thinking a lot. Stretches of time when we are at doctors a lot normally gets me thinking. I have been thinking about what I thought now would look like, what now does look like, and my thoughts for the future. Thoughts for the future are different when you have a medically complex kid. Your goals are different and how you go about meeting those goals is different. Developmentally Jillian is not where she should be. She is about 6mo behind in gross motor. Her speech is the largest delay. Jillian learns words and then looses them. We have started the testing for apraxia of speech. This means we will be seeing speech for a llllloooonnnnnnggggg time. Jillian's logic skills however are in the 75th percentile. She is a smart cookie her body just does not do what she wants/needs it to do. She also has many skills that she can do but can not do for long. Jillian can walk. She can not walk for every long. Her endurance is not anywhere close to what it should be. There is a big difference between being able to do something and being able to do it developmentally appropriately. People will see that Jillian is able to walk and say a couple of words (my kid is 21mo old and is just starting to refer to me as moma... that is a huge accomplishment at our house) they think that she is "cured" of whatever was going on when she was little. Honestly her stomach can handle less then it use to and her lungs are not as strong. She is the SAME weight as she was this time last year. She is an inch taller then a year ago however she is falling off the growth chart again. She is 3 inches shorter then she should be and at this age that is a lot. She looks more like a toddler and she is at the 50th percentile for weight for height so she does not look as tiny as she is. Her tube and belt add to that illusion too. They make her look a lot bigger around then she is. This leads to the comment "she looks healthy to me." Honestly, this comment ticks me off... a lot. I know people don't mean harm by it but it feels like they are saying we are crazy when we talk about what is going on with her and makes us not want to talk to that person anymore because it is one of those comments that for me ends a conversation. Sometime I will write a blog post about this to share with the world because I think that most people don't mean for this reaction when they say it but honestly to me when people say it, it hurts a lot.
-I always worry too that people will take all of this that we don't love our life or are grateful for everything we have. We LOVE our life. We LOVE our little girl. Jillian would NOT be the same person without all of this. She is a strong, determined little girl and a lot of that comes out of the circumstances in her life. She is sweet and kind and lights up the world. She brings smiles to doctors and nurses that have a very stressful job. She was put on this earth for a reason. She was put on this earth with all of her struggles for a reason. We LOVE her just the way she is and if I changed all of this health stuff she would not be the same person. That does not mean that I wish her any of the pain that she goes through. I always want people to hear the hope that we have in all of this (even though this is most likely a life long disorder that will not get better). We do have hope. We have hope for our future. We have hope for all of the things that God is teaching us in all of this. We have love and joy and peace. God has given us the opportunity to be the parents to an amazing little girl. We are the blessed ones in all of this because we get to know her.
Saturday, October 4, 2014
What a week
Ever had one of those weeks that you are glad is almost over? That would be this week.
Last week we got to be a part of my cousin Jessica's beautiful wedding. Jilli loved seeing all of the people and it was nice to see family. Welcome to the family Ryan!
A weekish ago I had anaphylactic reaction to latex. It landed my butt in the ER for several hours. I have not been in the hospital for asthma since a couple of months before my wedding (5 years ago) so I am not use to is anymore (there was a 6 year time frame where I frequented the hospital for asthma issues). I had never had a full anaphylactic reaction before. I am allergic to apples and it cause my throat/lips to tingle however it has never sent me to the ER. It has been a while since I have seen an ER move that fast. My respiratory rate was so low it was making things flash and beep. Within 15min of entering the ER I had an IV started, shot of epi, muscle relaxer and predisone in the IV, start of an hour long run of a run bag of IV fluids, and a neb treatment. Before I went into the ER I did a neb treatment and took 2 Benadryl. Within an hour and a half time frame I had 3 nebs. The doctor said when I arrived I was not moving air however after all of those drugs within a couple of hours I was able to function. I would bet that it I was not a moderate asthmatic that knew what they were doing they would have admitted me however they let me go home. I have been on nebs all week and predisone. Today I am starting to really start to be me again. It has made the week long.
Jilli has been taking nebs this week too. She had a broch on the 23rd. They say that recovery from those are quick however with Jillian it takes a long time to bounce back.
Tuesday I had a follow up with my doctor about my trip the the ER. We decided that it was a good idea that I now carry an epi pen and stay far away from latex (I really want fries and campfire sauce from Red Robbin right now but they have balloons there). After my appointment Jilli and I went and spent time with my grandparents. It was good to catch up with them. Tuesday night was spent trying to get my epi pen. Apparently our new insurance covers only a couple of dollars of the over $300 pen. I found a coupon online for $100 off however it was still a crazy price. I kind of needed to pick it up that night though because I was taking a bunch of 4K kids to an apple barn on Wednesday and wanted to be safe.
Wednesday we went to the apple barn. The parents of the kids in my class probably think I was crazy because I did not touch anything while I was there but the field trip went well. Before I left for the apple barn Jillian's pump decided that it did not want to work. It just kept erroring over and over. We had a problem with it last weekend with her pump turning off in the middle of the night for several hours so she missed several hours of feed. By mid day Wednesday I was ready for her pump to take a flight (this is the one that they switched out for a month ago and honestly I have disliked this new one for a while, it runs slow and the battery sucks and it does weird things) I called med supply as I left work and they said they could switch out the pump. I was on my way to Milwaukee to get one of Jillian's meds anyhow so we went to their main office. We were there for a while. Jilli and I then stopped at the zoo for about an hour to see the elephants, giraffes and to ride the train. We LOVE to go to the zoo and I love that we have a zoo pass and are able to just stop by for an hour and see a couple of things, ride the train and not feel bad about only being there for a short time. We then ran over to Children's and picked up her med. Then we went to the Mayfair Collection. They have a Carter's store. I was looking for a jean jacket for Jillian. We bought her a peach jean jacket on clearance a few weekends ago and she is in love with it. She LOVES jackets right now (almost as much as shoes) Carters had the same jacket in blue on clearance and the kenosha store was out of it. The one there had it in an 18mo so I picked it up however it is still way too big for her right now. Then we went to Mayfair and met Dan and Brent to make Build-a-Bears for Tubie Friends. Then we went to dinner at PF Changs (my meal sucked... don't get their Pad Thai!) Then we went home :)
Thursday night we had dinner with Bren't parents in Lake Geneva and then came home and watched the Packers kick butt!
We also got a call back from the nurse in charge of the aero digestive clinic on Wednesday. She gave us results back from her surgery:
ENT: There is no clef, just that weird thing where there does not look like there is muscle but there is. She said to follow up as needed.
Pulmonology: Her lungs have bacteria and such in her lungs that show that she is aspirating regularly on her own secretions (this is the same as her last bronch last Christmas) They said to stay on our normal follow-up schedule with them.
GI: THEY WANTED TO SEND US BACK TO FEEDING CLINIC. I will fully admit that there was NO nice word in my head when she said that. I then questioned this and kinda said no. Why would we go back to feeding clinic? She is not medically cleared to eat. You just told me that her lungs show chronic aspiration! The nurse said that she would talk to the speech path that works in feeding clinic and get back to me. She called back a little while later to say that the speech path said she does not belong in feeding clinic (THANK YOU!) She said the speech path said to send us back to Dr. Kahn (THANK YOU!) So the moral is, after me throwing a fit, we are going back to the GI dr that I like! Yeah! Sad news... we could not get back in until November.
Jillian's new pump is runs fast. She spent most of Thursday miserable. Her first pump ran fast and we could only get her as high as 58, her second pump ran slow and we got her up to 61. Her new pump is running about 7% faster then it should. We have bumped her back down to 58 and she is spending less time in pain. We are working with her dietitian to work on getting her to grow (her pants from last year are falling off of her)
So this is a catch up on this week :) the best part... Lots of cuddles from my little girl! I love jilli cuddles!!!!!!
Last week we got to be a part of my cousin Jessica's beautiful wedding. Jilli loved seeing all of the people and it was nice to see family. Welcome to the family Ryan!
A weekish ago I had anaphylactic reaction to latex. It landed my butt in the ER for several hours. I have not been in the hospital for asthma since a couple of months before my wedding (5 years ago) so I am not use to is anymore (there was a 6 year time frame where I frequented the hospital for asthma issues). I had never had a full anaphylactic reaction before. I am allergic to apples and it cause my throat/lips to tingle however it has never sent me to the ER. It has been a while since I have seen an ER move that fast. My respiratory rate was so low it was making things flash and beep. Within 15min of entering the ER I had an IV started, shot of epi, muscle relaxer and predisone in the IV, start of an hour long run of a run bag of IV fluids, and a neb treatment. Before I went into the ER I did a neb treatment and took 2 Benadryl. Within an hour and a half time frame I had 3 nebs. The doctor said when I arrived I was not moving air however after all of those drugs within a couple of hours I was able to function. I would bet that it I was not a moderate asthmatic that knew what they were doing they would have admitted me however they let me go home. I have been on nebs all week and predisone. Today I am starting to really start to be me again. It has made the week long.
Jilli has been taking nebs this week too. She had a broch on the 23rd. They say that recovery from those are quick however with Jillian it takes a long time to bounce back.
Tuesday I had a follow up with my doctor about my trip the the ER. We decided that it was a good idea that I now carry an epi pen and stay far away from latex (I really want fries and campfire sauce from Red Robbin right now but they have balloons there). After my appointment Jilli and I went and spent time with my grandparents. It was good to catch up with them. Tuesday night was spent trying to get my epi pen. Apparently our new insurance covers only a couple of dollars of the over $300 pen. I found a coupon online for $100 off however it was still a crazy price. I kind of needed to pick it up that night though because I was taking a bunch of 4K kids to an apple barn on Wednesday and wanted to be safe.
Wednesday we went to the apple barn. The parents of the kids in my class probably think I was crazy because I did not touch anything while I was there but the field trip went well. Before I left for the apple barn Jillian's pump decided that it did not want to work. It just kept erroring over and over. We had a problem with it last weekend with her pump turning off in the middle of the night for several hours so she missed several hours of feed. By mid day Wednesday I was ready for her pump to take a flight (this is the one that they switched out for a month ago and honestly I have disliked this new one for a while, it runs slow and the battery sucks and it does weird things) I called med supply as I left work and they said they could switch out the pump. I was on my way to Milwaukee to get one of Jillian's meds anyhow so we went to their main office. We were there for a while. Jilli and I then stopped at the zoo for about an hour to see the elephants, giraffes and to ride the train. We LOVE to go to the zoo and I love that we have a zoo pass and are able to just stop by for an hour and see a couple of things, ride the train and not feel bad about only being there for a short time. We then ran over to Children's and picked up her med. Then we went to the Mayfair Collection. They have a Carter's store. I was looking for a jean jacket for Jillian. We bought her a peach jean jacket on clearance a few weekends ago and she is in love with it. She LOVES jackets right now (almost as much as shoes) Carters had the same jacket in blue on clearance and the kenosha store was out of it. The one there had it in an 18mo so I picked it up however it is still way too big for her right now. Then we went to Mayfair and met Dan and Brent to make Build-a-Bears for Tubie Friends. Then we went to dinner at PF Changs (my meal sucked... don't get their Pad Thai!) Then we went home :)
Thursday night we had dinner with Bren't parents in Lake Geneva and then came home and watched the Packers kick butt!
We also got a call back from the nurse in charge of the aero digestive clinic on Wednesday. She gave us results back from her surgery:
ENT: There is no clef, just that weird thing where there does not look like there is muscle but there is. She said to follow up as needed.
Pulmonology: Her lungs have bacteria and such in her lungs that show that she is aspirating regularly on her own secretions (this is the same as her last bronch last Christmas) They said to stay on our normal follow-up schedule with them.
GI: THEY WANTED TO SEND US BACK TO FEEDING CLINIC. I will fully admit that there was NO nice word in my head when she said that. I then questioned this and kinda said no. Why would we go back to feeding clinic? She is not medically cleared to eat. You just told me that her lungs show chronic aspiration! The nurse said that she would talk to the speech path that works in feeding clinic and get back to me. She called back a little while later to say that the speech path said she does not belong in feeding clinic (THANK YOU!) She said the speech path said to send us back to Dr. Kahn (THANK YOU!) So the moral is, after me throwing a fit, we are going back to the GI dr that I like! Yeah! Sad news... we could not get back in until November.
Jillian's new pump is runs fast. She spent most of Thursday miserable. Her first pump ran fast and we could only get her as high as 58, her second pump ran slow and we got her up to 61. Her new pump is running about 7% faster then it should. We have bumped her back down to 58 and she is spending less time in pain. We are working with her dietitian to work on getting her to grow (her pants from last year are falling off of her)
So this is a catch up on this week :) the best part... Lots of cuddles from my little girl! I love jilli cuddles!!!!!!
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| Jilli and I at the reception |
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| Jilli dancing with Jess |
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| double nebs! |
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| Jilli and daddy sitting at the top of the stairs |
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| Jilli cuddles |
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| Jilli taking her meds |
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| On the train |
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| She had such a big grin! |
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| Waving with two hands |
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| Jilli stuffing a bear at Build-A-Bear |
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| Jilli took a picture of grandpa during dinner |
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| I also have TONS of these photos on my phone |
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| Jilli watching the Packers |
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| This is a picture from her surgery. This is her throat. This picture is sideways. It shows the funny part if you know what you are looking at... if not... her is a picture of how just above the vocal box should not quite look |
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