Long road ahead.

Thursday seemed like a very typical day. We did our typical things that we have been doing with out our nurse during the day. We had a typical evening. Bath time and bed time all seemed normal. When we went to bed i noticed sols oxygen levels low, 93, which isnt like him so i knew we needed to do coughs and suction. After doing those things he dropped his oxygen even more and it took a nebulizer treatment, many more coughs, and suctioning to get him back up. I called our hospital once this started happening. We had no inclination that he was sick, at that time no fever, cough, or runny nose. But i listened to his lungs and they were not good. The doctor at madison said we could go to the hospital now or wait and see what he will do, he guessed it was a type of aspiration pneumonia. We were both exhausted, both kids hadnt slept really long, i wanted to go to the hospital right away but i was also working on very little sleep so i knew i wasnt going to make the drive. Sol was now staying at 96 oxygen so we decided we could take shifts to see if we could clear this up at home. 2 am came and i went to check on him. He was 93 so i figured id do some coughs. When i took his vent off, though, he wasnt able to breathe at all. We had to do coughs immediately and he was not looking good.
I had already been paranoid and nervous after going to try to sleep and i guess that should have been a clue there that we should have gone to the hospital. I ended up getting sick to my stomach and letting thiago stabilize sol. But it wasnt working. He wasnt able to breathe and needed oxygen. When i talked to the madison pulmonary doctor we made arrangements that if we needed to go to the hospital we would call for an ambulance to transfer us to the nearest childrens hospital and madison would pick us up then and transport him to madison by ambulance. At that point that is what i did. I called 911, told them we needed to go to neenah. The ambulance driver didnt feel sol was stable enough to go to neenah so he took him to our local hospital ER.
It wasnt much help being there. The er doctor didnt really know what to do with him. She ended up asking me, if he gets worse what else do you want us to do because this is pretty much all we can do. You would be better off being at neenah. I knew that which is why i wanted to go there but at this point he was getting oxygen and we were keeping him stable ourselves. I didnt want to keep moving him in and out of these hospitals so we decided to have madison pick us up in waupaca and the pulmonary doctor told them what needed to be done.
At that point may was getting scared, me too, sol was managing so may and i went home to sleep a little before going to madison. Sol arrived at madison around 9:30 friday morning and was put in the pediatric intensive care unit. Xrays were consistent with aspiration pneumonia but i did notice he had a runny nose at the ER. He was treated right away and his day seemed to go ok. His night did not go ok. Around 1am he had low oxygen rates and everything they did didnt bring them up. He was put on 100% oxygen, his trach was changed, he was put on a hospital ventilator but nothing worked. The resident or doctor that was there tried turning down the oxygen and he could tell that it didnt help any so he assumed he had a plug in his lung. They started bagging him with an ambu bag and eventually that broke up his plug and he started to do better. His morning xray did not look good. His left lung had a lot of little collapses going on and his lungs sounded junky. We started doing neb treatments and chest pt on him every two hours to try to clear that up.
The next xray has shown to be better but night time continues to be rough for him. After talking with his pulmonary doctor yesterday she said she thinks it is a virus not an aspiration pneumonia but what needs to be done is to open up his lungs with more support from his ventilator not oxygen. We have gone her route and he did have a better night last night. He did have another plug early in the morning but they were able to get it out.  Today he has seemed to be pretty congested and working hard to break up all the junk in his lungs but he is in good spirits.
We have a long road for recovery here, probably at least a week hospital stay, maybe more, but as long as he improves to be able to come home. I wasnt so sure we would be bringing him home with us, and in still worried he will throw some trick at us but he is working hard to do his best to get better so i appreciate that little mr.

confessions of a trach mom.

It has been a hard last couple of days. I felt very close to having a huge break down on one of the days and trying to find a way to "not do this" anymore. It has been a perfect storm that has been circulating above for awhile and everything came together to unleash. First the no nurse for two weeks, problems with the nursing agency, no other nurse available to even come help, the overwhelmingness of how difficult everything can be, all the medical supplies that came with no time to put them away, and top it off since Monday Sol has needed suctioning every 2 seconds, and that isnt being sarcastic, some times i would finish suctioning and have to start before the suction-er could be turned off! Suctioning constantly drives me mad. Literally drives me insane, the constant noise of the suction-er and having to go at it again and again, it breaks me. I start to wonder if he is getting worse, deteriorating, or what the cause of it could be. Will we have to suction like this forever?? It drives me crazy. Luckily Sol doesn't complain too much about it like Lua did. If she got into suctioning fits she would start crying which made it worse, he doesnt get too mad over it, just me. Then I find myself wanting to not do this anymore. Because I can't. Day after day with no real progress in sight, when you think he is getting stronger and better and you are hoping for great progress one day, and then days like this week where all you do is sit and suction, doing coughs wont work, can't eat anything, cant even go pee, sit and suction. Can't go on.

But then, some moment, I thought of Lua. I remember I said, after she passed, I didn't care if all I did 24/7 was suction, I would do it to have her back. It would be the same for Sol. I should be happy to be suctioning him because that means I still have him. He is actually being able to cough some of the secretions out of his trach, I don't think he has much choice because he has so many of them! But at least he is helping out. And we press on, because we have to, because I absolutely love him, and although I get frustrated and upset I would always do everything for him. I hope all parents have mini breakdowns now and then and it isn't just me.
Eventually we found different positions that stopped all the suctioning, we found certain things that entertained him long enough to be distracted so I could get the supplies put away, we got in a good nap, and he gave me funny faces when he woke up. Then May woke up with a runny nose and sneezing, so maybe this is his cold--- and hopefully wont get anything besides this---- -_- and then we keep moving forward, because we have to. Maybe what that nurse said to me about 'just fix him' hit me hard enough to feel bad that I'm not trying enough things to find an answer to help him out. I've spent a lot of time looking online to find any information on fixing skeletal muscle, maybe one day I will come across something. But until then we will just do the best we can. Some days are really grim and difficult, but I know how the days would be with out him and I would tolerate that a whole lot worse than days of constant suctioning. But don't get me wrong, suctioning all the time is a real huge pain! 

oh boy.

Oh boy, oh boy... This week has started off, well just started off. My hardest struggle with having all of Sols conditions is the fact that it is really needed to have an extra set of hands, nursing. Home nursing is very difficult. With Lua I went through three nurses and I didn't truly like any of them, none of them were good with her and the agency was awful to me. So I left nursing behind when we had Lua. This time we have had two really good nurses, one nurse was someone who only came in for a couple hours, and then we have our regular nurse that pulls more hours. The agency has gone through a lot of changes and making a lot of things difficult for a lot of the workers there. This results in me being with out nursing. I can do a lot of things on my own, I usually do, but right after we get into a good routine something has to get messy to make life even harder. I guess I just got spoiled with having the extra help. I so badly wish I could just do more with Sol, if only he required less suctioning that could make things so much easier. But we have to do what we have to do because we get no other choice. It is only Tuesday, unfortunately, yet the show must go on.

Ugh, ugh ugh... 
But since the show must go on, we started monday off with taking May to the dentist to get a second opinion on what to do with her cavities. She did spectacular at the dentist too! This has always been hard for us, she has thrown many fits, one dental hygienist told me she needs to learn how to behave appropriately at the dentist, when she was three, because she cried while they tried to look in her mouth. We kept trying to tell them that if I go back with her she will do fine, but at first impressions they don't allow that so they end up with May crying and not letting them take a look. Now we are so far behind in treating her problem teeth that we have to go to the O/R to take care of all the teeth. It is so frustrating, and I'm not saying we arent at fault for not brushing better, but they spent three visits of her crying and not looking at her teeth! Yet at our appointment yesterday they let me go in with her and she didn't cry, she opened wide, and let them get everything done that needed to be done. Shocker. I'm not sure when things took a turn where doctors feel like parents don't know what is best for their own children.

I suppose I shouldn't go on, little sleep and lots of frustrations means bad words coming out and bad opinions.

Here is to friday! 

just fix him.

We have had the week this week, and it isn't over yet. Our regular nurse had something come up so we have been on out own since last Thursday. Isn't a huge deal because I've done it before, it just gets a little tricky with picking may up from school. It is nice to have an extra hand for that, but it isn't impossible for me to take sol to go get her. I say that but i only went to get her once this week.. So it is kind of a chore. Id hate to send her on the bus this year, mostly because we are so close to the school and thiagos job is literally right next to her school, but maybe next year we will have to consider the bus. Anyway.... Sol and i went to get her on Wednesday. He did 'fine' but the stares i get is ridiculous. You never feel so low in your life than when you are in a room full of a ton of parents sending you pity because you have a child with so much extra needs. Then there happened to be a lady who had a baby the exact same age as sol and she came running over to look at him, to compare, and it went from "oh look at this little cutie" to "oh my will he survive" super quickly.

I know many people would say that i don't have a problem being open about sols condition... But it just bothers me to be trying to do something normal and everyone making it seem so abnormal. I don't know how i want people to react but i don't want pity. 

Nothing makes you feel more abnormal than having a fill in nurse constantly remind you how not normal your situation is. As if my week wasn't different enough, i had to have this fill in nurse basically ask me, well why dont you just fix him. Just fix him. Whoa! Why didn't i think of that!??? There we go of course ill just fix him. That makes sense. Well because you know there was this girl who was born with no bones and doctors overseas were able to find the problem and give her the missing component and she started growing bones! Surly if they did it for bones they can fix muscle. I wish i could tell that to the other hundreds of parents with kids with muscle conditions and tell them all they need to do is fix their child and go overseas. There are so many problems with this. First i had to remind her what an undiagnosed condition meant... And also i need to see if that story is even real. And lastly if i was a millionaire i bet we could find a genetic doctor to find the problem and fix it. But with out money, with out awareness, a cure is far away. Besides that, i daily am trying to find something i can do to help and im so glad it took two people this week to break me. First, the lady with the healthy, normal baby, exactly sols age making me feel like there will never be a time we could go out with Sol and just have it be normal, and the nurse who is very ignorant to muscle conditions, spewing her mouth. It is my fault too because I asked to have a back up nurse be trained and I should have known... should. have. known. To be fair she actually doesnt have a lot of experience and is not an RN so Im not even sure why they sent her, I guess so she could see something new and rare or something like that. She told me how the other kiddo she watches is going to get his trach out soon and then the family can go back to a normal life. Sometimes we have new normal, but ignorant people will never see that. Black and white that is it.
I was really upset after the nurse left and when I started this post, I couldn't shake it off. But now after a sleep and playing with Sol on the floor, I remember how it doesn't matter. I can ask to not have the nurse back, but it sucks that it is so difficult to find good nursing help. Her opinion simply doesn't matter. I've been too spoiled to meet so many people that are more understanding of the situation and take the time to listen and try to understand the situation instead of just throwing out all their opinions with out knowing a single thing about the situation.

The show must go on though.
But you should have heard the conversation I had with her explaining how it isnt just that easy to "fix" it... I did get her to shut up for a few seconds at least.   

goodbye August.

We have had some busy weeks lately. After we all beat that stomach bug, summer school started and when it ended it left us with another bug floating around. First May, than of course Sol caught it, then even daddy. I was the last to get it, when I thought I would miss out all together but no luck. It has taken Sol the longest to get over it, a 2 day cold bug for May lasted at least a good week for Sol. But this is progress, his first cold took him a month to beat. His stomach bug took 11 days and a hospitalization. So a week-ish, isn't bad. His main symptoms went away around day 5 or day 6 but he continues to have a large amount of secretions and drool and aspirating all of that daily so I am needing to do coughs with him almost hourly or more. He has recovered though and that is what is important. He was suppose to get his shots a couple weeks ago but we pushed those back like three times so today we finally got to them. He is only months behind on all his shots... what are you going to do though if he is always getting sick, ugh... it is going to be a long winter. I probably shouldn't even say that, I said the same thing in my caringbridge site that I had for Lua when she got her first sickness and she never recovered from it, so yes it was a very long winter. :( I'm hoping for a much better winter this time around, but you never ever know.
Speaking of shots... I have been very lucky to be surrounded with doctors and nurses that are very good at listening to me and my concerns, I mean I've had the normal stuff come up while in the nicu about the feeding and gaining weight issues, but I've learned to pick my battles.... Today reminded me, though, how difficult it can be sometimes to advocate for your child. Every parent has to do it, healthy or not, but it is frustrating. sometimes i wish medical staff could put aside the normal go-to routine of things and just listen to the parent. I had a nurse today that i dont think she knows what a muscle disease is.... she kept talking like she knew everything but she wasn't listening to a word of what I was saying and trying to explain to her... This situation isn't a big deal at all really.. It was just the fact that I was reminded that it is difficult sometimes to advocate for your child. It was suppose to be a really easy, fast, simple appointment, but I will always have to explain how Sol is, always. Some days i'd like to not. Or at least say what needs to be said and the person understand instead of telling me what they do for normal kids. I guess it is hard to understand unless being in the situation, but it just annoyed me today. 

Sol will also start casting for his knees at the end of this month. This is such a bitter sweet situation because I'm very excited to see the results from it, yet at the same time it is going to be a pain and he will be uncomfortable and wont get to do a lot of the things he likes, like bath time and certain positions. But we will just have to push through and hope that at the end of the casting he will have more movement in his legs and once they are straight we can start trying out standers for him to do some weight bearing on those leggies of his. A very bitter sweet situation, I just hope we don't end up regretting doing this, by putting him through this if it doesnt work or if he gets too sick or anything like that. One cast at a time. Maybe he will do some more sleeping to catch up on all the naps he ISNT taking anymore... I wasnt aware 8 month olds stopped taking naps already -_- .

Now the biggest problem I am facing is actually with May and the stupid dentist... I am still surprised that they are so into putting kids under to fix teeth, I can't decide if this is a good thing or a bad thing to do. I can't read if it is my ignorance about the issue, or if it really is unnecessary.. ugh and there really isn't a lot of information on the topic, so much going on! Now school being started and then casting starting, A lot to take in.
Facebok does those memories daily, it is where I get my daily dose of Lua. I use to look at her pictures daily, watch her videos daily, but I find now that it is too hard to do it. I have to go awhile with out looking at them and when I do look at them it is really too difficult... I don't know why that is, I know I am disappointed that we didn't take the same route with her as we took with Sol. I can't even figure out why we couldn't have been directed to go the same route... there just becomes too many questions and I have to stop myself. I wish I could still surround myself with her things and her videos and pictures but if I do sometimes I worry my heart will actually break apart. So I stay distracted, it isn't too hard with everything going on.