My last few posts have been, probably, a little too depressing. With tomorrow being rare disease day, it is probably a good time to share any good things I might have. The hospital we go to is doing shout out to certain rare diseases on facebook tomorrow. I dont know if they will share our story but I will be on the look out! I did send in out story so we will see.
These last few weeks, Sol has been hitting some big marks for him. He has become such a copycat, mimicking your facial expressions. We daily have 'smack' offs where we send kisses back and forth. He is the cutest. But it excites me a ton to see him starting to do these things, things normal babies do. His strength has definitely been improving, this last week he has also been starting to move his shoulders. He has rolled from being half on his tummy to his back, moving his elbows, nodding yes, sticking his tongue out a lot, and the newst thing he has started doing is trying to pull up when holding him in a half reclined position. He throws his head forward and can fall into my chest. Such great things to be doing if he can continue to strengthen it all. The problem we are still having is his swallowing issues. He has at least 7 gallons of drool all the time and he cant swallow it all and everytime we stop to suction, which can be every 30 seconds, we stop working on strengthening games. It gets complicated and frustrating, we have to keep working on this so he can play more.
There is too much for me to be able to say on this day of awareness so I will just share what we wrote for the american family childrens hospital. They posted the story on Lua, but I think we had too much written and half of it got cut off.... so here it is, basically all I can say about rare disease day.
About Sol and Lua
Our children Lua and Sol were both born with such a rare condition that it still remains unnamed,
Lua was our second child, and was born not moving or breathing, we had no idea that anything was wrong with her, she had aspirated fluid during delivery and had to be resuscitated and intubated.
Once she became stable she was transported from our local office to two different NICUS, we learned a little more each day and we found out she lacked skeletal muscle which caused Arthrogryposis, which are contractures in most of her joints.
Geneticists believed she most likely had a neuromuscular disease and due to her weakness it was suspected that she had SMA or Myotonic Dystrophy, which both are progressive conditions where she would continue to get weaker and weaker.
Genetic testing showed she did not have either condition and she remained undiagnosed, Lua was unable to keep a strong, safe airway because of her lack of muscle and needed to have a Tracheotomy and g-tube surgery in order to come home.
Once we were able to bring her home we had part time nursing care for awhile, and went to many therapies to help strengthen her. She was showing signs of growing stronger a very tiny bit at a time, unfortunately Lua caught a cold from her older sister, and without proper lung support, she grew too weak and passed away suddenly even though she seemed to be getting over the cold, she was three days away from being 7 months old.
After she passed away we started to look for more answers with an whole Exome sequence test and muscle biopsy, initially everything came back normal and some months later we became pregnant with our first son.
When I was 24 weeks pregnant with Sol, we found out there was a gene change that showed up in our daughters Exome sequence and that same day we found out our son was affected. The gene change they found is in the Plectin gene, which is a large protein in the cells usually affecting skin but can also affect skeletal muscle.
When our son was born, we requested to be transferred to American Family Childrens Hospital where the genetics team found that his condition is more likely a type of Congenital Myopathy with Arthrogryposis, we still don't know the exact type of Congenital Myopathy because there are still too few cases of people affected by the Plectin gene showing the same symptoms our children have/had.
Today Sol is just about to turn 14 months old, he is double the age his sister was, he still has zero head and trunk control but recently he has been moving his shoulders which showed no movement until now.
He stomps his feet and wiggles his hips and toes. Just this month he has been working hard at talking, getting close to saying "wow" "what" and "how", I think he is preparing to go to parties!
We are still working with Genetics to give us a better idea of his condition but I am confident that our little one wouldn't have gotten as strong as he has without all the help and support from the pulmonary team and all the specialists at American family children's hospital.
https://www.facebook.com/uwhealthkids/photos/pcb.10155950572302178/10155951657312178/?type=3&theater
Special thanks to Hailey Lundborg Photography!
Tuesday, February 28, 2017
Thursday, February 9, 2017
Almost march
I noticed last year, and this year, how this season is very difficult for me. When i see green stuff coming out and all the shamrock stuff, i start to cringe. In 2014 I almost had Lua on st patricks day, ive never cared about this holiday before but now it is a constant reminder and a day I try my best to avoid. I've been in such a bad mood lately and really seeing all my flaws, like how jealous I feel, how ungrateful I can be, and I'm sure there are more but those two stand out the most at times like this. I am very happy for everyone who gets pregnant and go on to have the perfect, happy, healthy families, but there is always a part that hits such a sore spot. I suppose it comes with the territory.
I was watching counting on, or whatever it is called now, with the duggar family, and I realized that I have never experienced that 'second' child. Even though I have birthed three babies, I have no idea what it is like to raise two healthy kids or have two healthy births. I will never experience having that baby put on your chest right after they are born again, and for some reason that really bothers me and hurts the most. I know I've said it before, but it just does, and I hate watching that show for that reason. It really saddens me that this already huge family can just keep having more kids and more kids. I know all the arguments that are out there, they are a good family, they are raising great kids, yeah yeah, I get it, but it doesn't stop the fact that some people out there would love to have just two healthy kids and watching them plan to have as many kids as their bodies will let them, feels like a slap to the face for those who would love two or some who want just one. That is where my ungrateful part comes in, I should be so thankful that I've experienced three kids, but Lua's death really spoils everything. Makes me bitter, as we have covered, and also keeps it in the back of my mind that how long will I have with Sol. Their condition is so severe. I never try to think about this for very long because it is so painful, but there is no denying it. I constantly worry over every sneeze, every weird temperature, every off heart beat, that he is getting worse and will the day that we lose him come soon. I never thought about these things with Lua. I was very ignorant about this. Maybe that is what has gotten Sol to be a year old, is my constant worry over it, regardless it is not a great way to live. It is burning me out lately and it also causes you to want to distant yourself away from everyone that has a baby because seeing healthy baby after healthy baby can break a person. I really hope that this feeling changes, as the kids get older, you stop feeling so angry that everyone in the world can have healthy babies except you (over exaggerating of course, I know) but that is what it brings you to. I am staying hopeful that someday my feelings will change.
If I wouldn't have had such bad experiences with local therapists, I think it would be great to meet with one, probably something I Need to do, but it is tricky to find the right person. We have an amazing therapist in madision I love to see when we are there, but it is a good thing we haven't been inpatient for awhile, but unfortunately, that means this blog gets bogged down with these depressing posts...
I think it is important, though, to be able to recognize these feelings and at least I can pinpoint to where they are coming from, so at times I am able to control them when they get too out of control. It is never easy though. This year I started the 30 days of yoga with adriene, and I absolutely loved it. I feel like I can push through some anxiety and blow ups that I'm so use to having, so I am continuing this practice for the whole year hopefully, and maybe by next year this time of year wont bother me so much. Except I am fully aware we NEVER know what the next day will hold, so I don't plan on saying next year will be better, could be worse we never know.
Anyway the point of all of this is, I really hate the month of march and it isnt even hear yet. Some days I imagine all these things that happened, happened differently and I am sitting at home pulling my hair out because I have three kids that are running and jumping and messing up our house, fighting and yelling, breaking things and throwing food and it is the best day dream ever.
I was watching counting on, or whatever it is called now, with the duggar family, and I realized that I have never experienced that 'second' child. Even though I have birthed three babies, I have no idea what it is like to raise two healthy kids or have two healthy births. I will never experience having that baby put on your chest right after they are born again, and for some reason that really bothers me and hurts the most. I know I've said it before, but it just does, and I hate watching that show for that reason. It really saddens me that this already huge family can just keep having more kids and more kids. I know all the arguments that are out there, they are a good family, they are raising great kids, yeah yeah, I get it, but it doesn't stop the fact that some people out there would love to have just two healthy kids and watching them plan to have as many kids as their bodies will let them, feels like a slap to the face for those who would love two or some who want just one. That is where my ungrateful part comes in, I should be so thankful that I've experienced three kids, but Lua's death really spoils everything. Makes me bitter, as we have covered, and also keeps it in the back of my mind that how long will I have with Sol. Their condition is so severe. I never try to think about this for very long because it is so painful, but there is no denying it. I constantly worry over every sneeze, every weird temperature, every off heart beat, that he is getting worse and will the day that we lose him come soon. I never thought about these things with Lua. I was very ignorant about this. Maybe that is what has gotten Sol to be a year old, is my constant worry over it, regardless it is not a great way to live. It is burning me out lately and it also causes you to want to distant yourself away from everyone that has a baby because seeing healthy baby after healthy baby can break a person. I really hope that this feeling changes, as the kids get older, you stop feeling so angry that everyone in the world can have healthy babies except you (over exaggerating of course, I know) but that is what it brings you to. I am staying hopeful that someday my feelings will change.
If I wouldn't have had such bad experiences with local therapists, I think it would be great to meet with one, probably something I Need to do, but it is tricky to find the right person. We have an amazing therapist in madision I love to see when we are there, but it is a good thing we haven't been inpatient for awhile, but unfortunately, that means this blog gets bogged down with these depressing posts...
I think it is important, though, to be able to recognize these feelings and at least I can pinpoint to where they are coming from, so at times I am able to control them when they get too out of control. It is never easy though. This year I started the 30 days of yoga with adriene, and I absolutely loved it. I feel like I can push through some anxiety and blow ups that I'm so use to having, so I am continuing this practice for the whole year hopefully, and maybe by next year this time of year wont bother me so much. Except I am fully aware we NEVER know what the next day will hold, so I don't plan on saying next year will be better, could be worse we never know.
Anyway the point of all of this is, I really hate the month of march and it isnt even hear yet. Some days I imagine all these things that happened, happened differently and I am sitting at home pulling my hair out because I have three kids that are running and jumping and messing up our house, fighting and yelling, breaking things and throwing food and it is the best day dream ever.
Friday, February 3, 2017
temps.
Things with Sol had been quiet the last few weeks, up until last weekend that is. Until then, he had a runny nose one week but recovered from that with no issues, then he was sick free for a week until last weekend he came down with a fever. I wasn't too surprised as May had a fever for a day the previous weekend, I assumed he would have the fever the same amount of time and then be over it. He was heading towards day 3 with a fever so that day I ended up giving him some Tylenol before bed time. While we were doing his last feed of the night, I noticed his fever had broke and he soaked his clothes. I changed him out of all his clothes and got him nice and dry, then finished his feed. I took his temp again before I went to bed because he was due for some more tylenol and I wasn't sure if he needed it or not. When I took his temp, though, I ended up getting 93.8, I took it a few more times to make sure I was doing it right but I kept getting the same numbers. I decided to take it rectally so I knew exactly where he was and then I still only got 94.8. I, of course, started googling and reading how bad it was to have such a low temp. I decided I would just keep checking it for awhile to see if he was bouncing his temp around or something. at around 1am, and me not getting any good temps, I called the hospital and ended up being able to talk to his pulmonary doctor who had been on call. She told me if he was really that low his heart rate should be getting pretty low too. His heart rate was lower than normal though, he has started this new thing where he stays in the 80s or 70s while he is asleep now, and even dip to the mid 50s now. At the time I was on the phone with her he hadnt dipped into the 50s, so we decided to give it one more hour, bundle him up more, and take the temp again. So I stopped worrying and closed my eyes for an hour where after I went back to check on him and at this point he was so super cold to the touch and a temp of 91.8. I pulled him out of the crib and laid him on me with a blanket over us, trying to warm him up. Thiago checked his bed out, because my thought was that he may be laying in something wet that made him so cold. Sure enough his bed was soaked again and was super cold. I called back to the hospital and we agreed he needed to be seen. After we spent 2 hours holding him trying to warm him up, we packed the car and went to Neenah to the ER.
On the way we bundled him and blasted the heat as high as we could take, by the time we got to the hospital and got him into the ER room, he was already at 97. We decided to run some tests and keep an eye on him for a few hours. All the tests came back normal, the only thing being off was his ear that had a little inflammation going on. They treated it as swimmers ear and after talking to the Madison crew, we were able to go back home, before we left he was already at 98.
Luckily my parents had planned to come watch the kids anyways and met us at the hospital and then came home with us, allowing me and Thiago to get some rest. I had only slept the one hour that night as it was and I could hardly keep my eyes open anymore. We spent the rest of the day monitoring his temps, and at night time too I kept an eye on them. But my thermometer kept getting weird readings off and on, I finally decided to go buy a new one a couple of days after me getting weird reads. After buying the new one, we haven't had those low reading temps again so maybe it was just the thermometers all a long, who knows. I was just baffled with having to deal with this when you are never told what to do if a child has a low temp. Of course I only think of worst case scenarios the whole time, which makes me sick to my stomach.
The last few days have been going better, except now he is keeping a lower hear rate overall and when he sleeps he is setting the alarms off because he goes into the 50s. It looks like we may need to do a sleep study on him and see what is going on.
I guess I left my self to be vulnerable to sicknesses, because come Wednesday I came down with a really crappy sinus cold. I am Sooo hoping this is what sol had those couple of weeks ago and that I don't share this new one with the kids. It has been taking a toll out on me, I can't even imagine what it would do to Sol!
Some days, some moments, it is just so extremely hard to have a medically fragile kid. I wish so badly he didn't have to deal with so many things so often...
On the way we bundled him and blasted the heat as high as we could take, by the time we got to the hospital and got him into the ER room, he was already at 97. We decided to run some tests and keep an eye on him for a few hours. All the tests came back normal, the only thing being off was his ear that had a little inflammation going on. They treated it as swimmers ear and after talking to the Madison crew, we were able to go back home, before we left he was already at 98.
Luckily my parents had planned to come watch the kids anyways and met us at the hospital and then came home with us, allowing me and Thiago to get some rest. I had only slept the one hour that night as it was and I could hardly keep my eyes open anymore. We spent the rest of the day monitoring his temps, and at night time too I kept an eye on them. But my thermometer kept getting weird readings off and on, I finally decided to go buy a new one a couple of days after me getting weird reads. After buying the new one, we haven't had those low reading temps again so maybe it was just the thermometers all a long, who knows. I was just baffled with having to deal with this when you are never told what to do if a child has a low temp. Of course I only think of worst case scenarios the whole time, which makes me sick to my stomach.
The last few days have been going better, except now he is keeping a lower hear rate overall and when he sleeps he is setting the alarms off because he goes into the 50s. It looks like we may need to do a sleep study on him and see what is going on.
I guess I left my self to be vulnerable to sicknesses, because come Wednesday I came down with a really crappy sinus cold. I am Sooo hoping this is what sol had those couple of weeks ago and that I don't share this new one with the kids. It has been taking a toll out on me, I can't even imagine what it would do to Sol!
Some days, some moments, it is just so extremely hard to have a medically fragile kid. I wish so badly he didn't have to deal with so many things so often...
Friday, January 13, 2017
first update of 2017
We made it past the holidays with out a hospital stay! Woo Hoo!!
We had a great Christmas and birthday party for Mr. Sol! He is a big ONE year old now and I am so so so happy to see him turn one! Hopefully many birthdays yet to come, but that first one is a tough one to get to for our kiddos with this condition.
It has been awhile and so much has gone on I'm not even sure where to begin or where to go.
Sol had his first pulmonary appointment of the year where everything checked out fine. He had some granuloma tissue around his trach site that has been causing some issues, but a little silver nitrate and it has cleared up, although another one is sneaking around so we may need to take care of that as well soon. His legs are getting some good stretches with his splints and there is no talk of casting at the moment for that. He is on full foods now and gained 2lbs since December 1st, so that is going well although he is struggling with the new thicker diet and moving his bowels. We don't need to go back to madison until march! Unless we have any unplanned trips, but it is nice to have a little break from going every month. Though, the last few days Sol has continued to get sicker and sicker with this runny nose, if he gets that junk in his lungs we may be headed to madison for an over night stay. Hoping he will be on the upswing though instead of going down hill, by the looks of it this afternoon it looks like it is going to get worse before it gets better still. :(
Before he got sick, Sol had been spending some time on his scooter boards. He is starting to figure out he can move himself on the boards and it is so awesome and exciting! Some more practice and he may be able to get the crawling concept down while using support from the scooters. It is amazing. I never thought we would be so close to seeing him move around when he still cant hold his head up or sit up supported. Yet he is really getting the idea down to move when he is on his tummy, I just love it. I can't wait for him to start feeling better so we can get back at it. Also his switches, that will help with play and communications, should be coming in soon here and we can get started with that. He is understanding more and more. Often I worry how he isnt developing like a normal child would be, but then he does these things that make me see he is understanding words and comprehending phrases. I have been trying to teach him that 'night night' means we close our eyes and go to sleep. Every time I say, night night, now he smiles big at me and scrunches his eyes! He can't give in and fully close them, but he certainly scrunches them. It is the cutest thing. Those things are something I miss so much that we had with may. Teaching everything and watching her become a little person. When you lose movement, you see how hard it can be to learn the simple things, but if we keep up with it, you watch as they learn it a whole new way you wouldn't expect. I hope that we will still get to teach Sol all those things we were able to teach may, crawl, walk, talk, be sassy, in time we will get there. I question sometimes, though, if we will ever reach certain things or if everything we teach him will be different and in a different way. It is still unknown, but I have high hopes for this year and to see where he will go.
May has certainly become an official little person of her own. Learning to read now, being better at math than me already! Wow they learn so fast these days. Sometimes I forget she is still only 5 and she needs to do what 5 year olds do and be a kid and not rush her into adulthood. As we all know, being an adult isn't all it is cracked up to be; at least I know it isn't!
So most days I need to remember let the 5 year olds be 5 year olds, even if they do think they know everything already!
In March Lua will have turned 3 years old. As I watch Sol, I can only image she could have been doing everything he is doing, and more if she had the support. Some days the pain still hits uncontrollably that we have lost her. It is the dumbest thing to be able to say, I lost my daughter. My baby died. Those are stupid, painful words that I wouldn't be able to comprehend if I wouldn't have lived through it. Many days I can feel this sensation of depression surrounding me and some days im surprised I have made it through the last two years with out her and I am able to function as a somewhat typical human being. Most other days I put her way back in my mind because I simply cannot go there anymore, but she always appears, in a picture or in the sky (the moon which May is always excited to point out where 'lua' is at night) or she sneaks up in songs that remind me of her. But it is funny how grief can take unplanned turns like this. I went from looking at her pictures all the time to trying to avoid everything that reminded me of her. I'm sure in a few months things will change again, or at least I hope, but you just never know.
I'm trying to design a little more, or find other things to keep me busy. Like May and Sol don't keep me busy enough, always looking for more. I know that is my way to try to fill the void in our lives, but you do what you have to do I suppose.
Well that is all for now.
We had a great Christmas and birthday party for Mr. Sol! He is a big ONE year old now and I am so so so happy to see him turn one! Hopefully many birthdays yet to come, but that first one is a tough one to get to for our kiddos with this condition.
It has been awhile and so much has gone on I'm not even sure where to begin or where to go.
Sol had his first pulmonary appointment of the year where everything checked out fine. He had some granuloma tissue around his trach site that has been causing some issues, but a little silver nitrate and it has cleared up, although another one is sneaking around so we may need to take care of that as well soon. His legs are getting some good stretches with his splints and there is no talk of casting at the moment for that. He is on full foods now and gained 2lbs since December 1st, so that is going well although he is struggling with the new thicker diet and moving his bowels. We don't need to go back to madison until march! Unless we have any unplanned trips, but it is nice to have a little break from going every month. Though, the last few days Sol has continued to get sicker and sicker with this runny nose, if he gets that junk in his lungs we may be headed to madison for an over night stay. Hoping he will be on the upswing though instead of going down hill, by the looks of it this afternoon it looks like it is going to get worse before it gets better still. :(
Before he got sick, Sol had been spending some time on his scooter boards. He is starting to figure out he can move himself on the boards and it is so awesome and exciting! Some more practice and he may be able to get the crawling concept down while using support from the scooters. It is amazing. I never thought we would be so close to seeing him move around when he still cant hold his head up or sit up supported. Yet he is really getting the idea down to move when he is on his tummy, I just love it. I can't wait for him to start feeling better so we can get back at it. Also his switches, that will help with play and communications, should be coming in soon here and we can get started with that. He is understanding more and more. Often I worry how he isnt developing like a normal child would be, but then he does these things that make me see he is understanding words and comprehending phrases. I have been trying to teach him that 'night night' means we close our eyes and go to sleep. Every time I say, night night, now he smiles big at me and scrunches his eyes! He can't give in and fully close them, but he certainly scrunches them. It is the cutest thing. Those things are something I miss so much that we had with may. Teaching everything and watching her become a little person. When you lose movement, you see how hard it can be to learn the simple things, but if we keep up with it, you watch as they learn it a whole new way you wouldn't expect. I hope that we will still get to teach Sol all those things we were able to teach may, crawl, walk, talk, be sassy, in time we will get there. I question sometimes, though, if we will ever reach certain things or if everything we teach him will be different and in a different way. It is still unknown, but I have high hopes for this year and to see where he will go.
May has certainly become an official little person of her own. Learning to read now, being better at math than me already! Wow they learn so fast these days. Sometimes I forget she is still only 5 and she needs to do what 5 year olds do and be a kid and not rush her into adulthood. As we all know, being an adult isn't all it is cracked up to be; at least I know it isn't!
So most days I need to remember let the 5 year olds be 5 year olds, even if they do think they know everything already!
In March Lua will have turned 3 years old. As I watch Sol, I can only image she could have been doing everything he is doing, and more if she had the support. Some days the pain still hits uncontrollably that we have lost her. It is the dumbest thing to be able to say, I lost my daughter. My baby died. Those are stupid, painful words that I wouldn't be able to comprehend if I wouldn't have lived through it. Many days I can feel this sensation of depression surrounding me and some days im surprised I have made it through the last two years with out her and I am able to function as a somewhat typical human being. Most other days I put her way back in my mind because I simply cannot go there anymore, but she always appears, in a picture or in the sky (the moon which May is always excited to point out where 'lua' is at night) or she sneaks up in songs that remind me of her. But it is funny how grief can take unplanned turns like this. I went from looking at her pictures all the time to trying to avoid everything that reminded me of her. I'm sure in a few months things will change again, or at least I hope, but you just never know.
I'm trying to design a little more, or find other things to keep me busy. Like May and Sol don't keep me busy enough, always looking for more. I know that is my way to try to fill the void in our lives, but you do what you have to do I suppose.
Well that is all for now.
Wednesday, December 14, 2016
viruses >:|
Since we have been home from the hospital stay with the rhinovirus, Sol has caught two more viruses -_-
It has been a long few weeks, poor kiddies. First was hand foot and mouth virus, which I never saw before until the kids got it. Poor May caught it from school and with in a few days Sol was getting a nasty fever and spots all over too. The fever hit him really hard and he looked awful! worse than when he was struggling to breathe with the cold! It was really hard to keep his fever down and his heart rate was really high and he was in pain from the bumps in his mouth, it was really terrible! His fever broke the day before we were headed to get his serial casting done for his knees. Unfortunately his bumps were too bad for them to cast, they worried an emergency would come up and we wouldnt be able to get the casts off, so the doctor didn't feel comfortable casting yet. We are now looking at november 9th to try the casting, we will see.
Pretty quickly after the hand foot mouth cleared up, another cold hit both the kids. Sol is still battling that one but he is looking much better. May still had a stuffy like nose as of yesterday but shes pretty much all better from it, now we are waiting for Sol to be 100% again. He is still needing the vent most the day but the nurse from the hospital told me that we really should keep him on it up to a week after his cold is over, that way he gets the rest and builds up his strength. I think it sounds really reasonable and at least he is doing better.
I started writing this a month ago now i guess, and since then we have had even more sicknesses along with two more admissions to the hospital. One was an overnight stay, a pretty unnecessary stay actually, but because he was throwing up and had a good fever that wouldn't go away, our madison doctors wanted him to be seen just to take some tests to make sure it wasn't something really nasty. Our local hospital wouldn't see him, even though I did make an appointment that they cancelled on me with out even telling me. . . We then had to go to madisons ER to get him looked at. It was pretty annoying, and it turned out to be a stomach bug and he literally just needed to be looked at. We learned our lesson with that one and next time we will just go to neenahs childrens hospital if it is something minor like that.
The very next weekend, although, Sol caught his sisters cold that she had over thanksgiving. It started as a runny nose but by bedtime it was in his lungs, even though we had been doing our best to clear his lungs, by 1am we could no longer support him at home. We called 911 to take us to neenahs childrens hospital to wait for madison to come get him. Last time we were at the ER in waupaca, the doctor told us there wasnt anything more she could do for him so if he took a turn they wouldnt know what to do. I figured we could save them the trouble and just go to an ER that may be a little more prepared for him, and it was a good idea. He was in rough rough shape. He had pneumonia, his left lung was full! He was breathing with basically only one lung. When Madison got there to get him, they said he was too sick to transport so they needed to do some therapies and nebs to get him more stable to travel.
Thankfully he made a fast turn around, after a very aggressive treatment day, his lung looked much better, he then needed to rebuild his strength. We were there 5 days. We really needed to go home a day earlier, May was having her dental procedure where they needed to take her to the OR and put her under sedation, we were hoping to have sol home by then so we could focus on may, but that didn't work out. That ended up being a VERY full day. After may's procedure we were then able to leave the hospital. Up at 5am and leaving the hospital by 5pm. ugh. But it was great to be home.
Thankfully Sol has been feeling better for a week or so now. I am hoping beyond all hope that he will stay healthy for the rest of the year! would be nice, but at least until we are through his birthday and christmas!
Here is hoping!
It has been a long few weeks, poor kiddies. First was hand foot and mouth virus, which I never saw before until the kids got it. Poor May caught it from school and with in a few days Sol was getting a nasty fever and spots all over too. The fever hit him really hard and he looked awful! worse than when he was struggling to breathe with the cold! It was really hard to keep his fever down and his heart rate was really high and he was in pain from the bumps in his mouth, it was really terrible! His fever broke the day before we were headed to get his serial casting done for his knees. Unfortunately his bumps were too bad for them to cast, they worried an emergency would come up and we wouldnt be able to get the casts off, so the doctor didn't feel comfortable casting yet. We are now looking at november 9th to try the casting, we will see.
Pretty quickly after the hand foot mouth cleared up, another cold hit both the kids. Sol is still battling that one but he is looking much better. May still had a stuffy like nose as of yesterday but shes pretty much all better from it, now we are waiting for Sol to be 100% again. He is still needing the vent most the day but the nurse from the hospital told me that we really should keep him on it up to a week after his cold is over, that way he gets the rest and builds up his strength. I think it sounds really reasonable and at least he is doing better.
I started writing this a month ago now i guess, and since then we have had even more sicknesses along with two more admissions to the hospital. One was an overnight stay, a pretty unnecessary stay actually, but because he was throwing up and had a good fever that wouldn't go away, our madison doctors wanted him to be seen just to take some tests to make sure it wasn't something really nasty. Our local hospital wouldn't see him, even though I did make an appointment that they cancelled on me with out even telling me. . . We then had to go to madisons ER to get him looked at. It was pretty annoying, and it turned out to be a stomach bug and he literally just needed to be looked at. We learned our lesson with that one and next time we will just go to neenahs childrens hospital if it is something minor like that.
The very next weekend, although, Sol caught his sisters cold that she had over thanksgiving. It started as a runny nose but by bedtime it was in his lungs, even though we had been doing our best to clear his lungs, by 1am we could no longer support him at home. We called 911 to take us to neenahs childrens hospital to wait for madison to come get him. Last time we were at the ER in waupaca, the doctor told us there wasnt anything more she could do for him so if he took a turn they wouldnt know what to do. I figured we could save them the trouble and just go to an ER that may be a little more prepared for him, and it was a good idea. He was in rough rough shape. He had pneumonia, his left lung was full! He was breathing with basically only one lung. When Madison got there to get him, they said he was too sick to transport so they needed to do some therapies and nebs to get him more stable to travel.
Thankfully he made a fast turn around, after a very aggressive treatment day, his lung looked much better, he then needed to rebuild his strength. We were there 5 days. We really needed to go home a day earlier, May was having her dental procedure where they needed to take her to the OR and put her under sedation, we were hoping to have sol home by then so we could focus on may, but that didn't work out. That ended up being a VERY full day. After may's procedure we were then able to leave the hospital. Up at 5am and leaving the hospital by 5pm. ugh. But it was great to be home.
Thankfully Sol has been feeling better for a week or so now. I am hoping beyond all hope that he will stay healthy for the rest of the year! would be nice, but at least until we are through his birthday and christmas!
Here is hoping!
Friday, October 7, 2016
D day
A couple days ago I had a hard day. Wait, i almost laughed loudly when i wrote that... after last week and the scare that we had with Sol, this week is a day that I had a hard day... it is kind of funny. Anyway, it wasnt because of Sol though. I have another tshirt order i am finishing up and these are hard for me because no matter how hard i try, i always end up looking at pictures of Lua when I go on that computer. This day i didnt even try to see her pictures, but i accidentally ended up seeing some old nicu pics. Oh how my heart breaks and how bad it hurts. It hurts especially bad knowing Sol had the exact same sickness lua had and now, only now two years later, did we learn what needs to be done to help them get past a bad virus. Im so glad Sol was so strong for us, but im so sad we didnt know this for her. So the pain kicks in and it hurts a lot. At that moment i didnt even realize that in a week it will be two years that she passed away. It makes sense now. I have been trying really hard to not think of the day she died, but it hits you no matter if you are trying to ignore it or not. Ive been extremely anxious lately, sad, and only today did i realize the day is right around the corner. We are suppose to go to madison on the anniversary day to get sol casted. I really didn't want to plan anything for that day. I really want to just skip this day entirely. No october 12. Lets just go from october 11 to the 13th, unfortunately it doesnt work like that. Bummer.
I have no thoughts on this day. I dont want to. A lot of people talk about the anniversary days, some only have one day their angels came and left this world and that day is the hard day. Losing a child of any age after their birth, gives you two days . For me both days suck. Her birthday doesnt just remind me she isnt here to celebrate with, it reminds me of how we almost lost her. Reminds me of how i was so clueless that anything was wrong. What seemed to be a perfect pregnancy, was all a lie. On her birthday i feel so naive and foolish for not knowing i wasnt bringing a healthy baby girl into this world. Yet her birthday is a day i want to think about and do something for. Although she is gone, she made it past her birthday and she deserves to be celebrated.
I have no silver lining to the day she died. It is just a bitter, painful, dark day. She should be here. She should just be here.
Im already trying to find a way to disappear on october 12, but that will be hard to do when we have to travel that day. maybe it will be good that we will be preoccupied especially so i dont go on facebook and see any memory from that day. I feel bad that i dont want to acknowledge this day for her, but i think it just comes down to the fact i think she should be here. That we should have done more, i should have known she was struggling and something should have been done.
I know there is nothing that can be done now, of course, but i think it is just a process on learning to beat the guilt.
I have no thoughts on this day. I dont want to. A lot of people talk about the anniversary days, some only have one day their angels came and left this world and that day is the hard day. Losing a child of any age after their birth, gives you two days . For me both days suck. Her birthday doesnt just remind me she isnt here to celebrate with, it reminds me of how we almost lost her. Reminds me of how i was so clueless that anything was wrong. What seemed to be a perfect pregnancy, was all a lie. On her birthday i feel so naive and foolish for not knowing i wasnt bringing a healthy baby girl into this world. Yet her birthday is a day i want to think about and do something for. Although she is gone, she made it past her birthday and she deserves to be celebrated.
I have no silver lining to the day she died. It is just a bitter, painful, dark day. She should be here. She should just be here.
Im already trying to find a way to disappear on october 12, but that will be hard to do when we have to travel that day. maybe it will be good that we will be preoccupied especially so i dont go on facebook and see any memory from that day. I feel bad that i dont want to acknowledge this day for her, but i think it just comes down to the fact i think she should be here. That we should have done more, i should have known she was struggling and something should have been done.
I know there is nothing that can be done now, of course, but i think it is just a process on learning to beat the guilt.
Wednesday, October 5, 2016
home again
Last week Friday we were able to take Sol home from the hospital. We had a week long stay, which is way less than I expected for us to have. On Monday, after we got out of the picu, pediatric intensive care unit, Sols main doctor happened to be on the floor we were at so she popped in to see us. She looked at him for about 2 seconds and told me this isn't aspiration this is a virus. She told RTs what they need to do to help him have better nights, the problem they were having was giving him oxygen and not enough support from the vent. His lungs were collapsed so giving him all the oxygen in the world wasnt going to help open up his lungs, he needed more pressure to pop the lungs open. She gave us a new plan of action and they did that over night the first night in the step down unit. He did much better, he still had some plugging issues around 2 am but they were able to get it out and it wasn't as dramatic as his first few plug issues.
The doctor was right, too, his virus panel came back and he had the rhino virus... the common cold. For a baby that isnt common it can become so deadly!
But, with the new plan in action, Sol was able to start recovering pretty quickly and after one good night of no plugs, they were ready to send us home. The home plan has been to keep him on his extra sick vent settings until Monday this week and start to go back to his norm after that. We are pretty much there now. He is off his sick vent settings and tolerating being off the vent during the day again. Although I think he is starting the teething process again now though, or something, because he isn't as chipper as he was a couple days ago.
As much as I hated going to the hospital because of being scared he was going to die, he made some huge accomplishments while we were there. We were able to hear him giggle! And see him Laugh, most adorable thing in the world. He was babbling A lot while being on the vent and our speech therapist agreed that he is prime and ready to start talking and he should be worked with a lot because he could really start booming now. He also learned how to give kisses when you ask him. He started doing a lot of things with his mouth. These are amazing things to us because we always wonder what will happen to his learning ability when he cant move like a normal baby. He is showing to find his own ways of learning and keeping up with all the other babies his age the best he can. He is really an amazing little guy. He beat this sickness, really showing us how strong he is. I don't think this will make it any easier for the next time he gets sick, which I'm hoping doesn't happen for a very long time, but hopefully if we stick to the plan of action we did this time, he will recover just as nicely.
The doctor was right, too, his virus panel came back and he had the rhino virus... the common cold. For a baby that isnt common it can become so deadly!
But, with the new plan in action, Sol was able to start recovering pretty quickly and after one good night of no plugs, they were ready to send us home. The home plan has been to keep him on his extra sick vent settings until Monday this week and start to go back to his norm after that. We are pretty much there now. He is off his sick vent settings and tolerating being off the vent during the day again. Although I think he is starting the teething process again now though, or something, because he isn't as chipper as he was a couple days ago.
As much as I hated going to the hospital because of being scared he was going to die, he made some huge accomplishments while we were there. We were able to hear him giggle! And see him Laugh, most adorable thing in the world. He was babbling A lot while being on the vent and our speech therapist agreed that he is prime and ready to start talking and he should be worked with a lot because he could really start booming now. He also learned how to give kisses when you ask him. He started doing a lot of things with his mouth. These are amazing things to us because we always wonder what will happen to his learning ability when he cant move like a normal baby. He is showing to find his own ways of learning and keeping up with all the other babies his age the best he can. He is really an amazing little guy. He beat this sickness, really showing us how strong he is. I don't think this will make it any easier for the next time he gets sick, which I'm hoping doesn't happen for a very long time, but hopefully if we stick to the plan of action we did this time, he will recover just as nicely.
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