Liams breathing update/ Lanies turning 4

We started Liam's breathing treatment that replaces his QVAR inhailer in the nebulizer on sunday. Before I gave him the treatment I looked at his breathing. Already just being off the albuterol for a little over 12 hours he was breathing so much better. We should get to start his xophanex nebulized today. We've been waiting on them to get the order in. There is still some retraction in the middle of his chest but not on the right side. Im hoping that the xophanex will completly clear it up. Liam's pediatrician is starting to think that this is just how Liam will be for awhile until he grows out of it. He doesn't was to admit Liam into the hospital unless it gets worse or we see nasal flairing or him turning pale then blue. Our pediatrician is worried that if we admit him and he's not sick or needing to be admitted that he will surely get sick since its RSV season and there are a ton of people comming down with phnemonia. We're just super happy that he is doing better. I ordered a pulse ox online even though our pediatrician said he didn't think I needed one at this point. I think it'll give my mind some peace. When he's retracting I need to know if he's getting enough oxygen and Liam smiles through everything so I cant go off his moods. It'll be awhile before it comes in the mail though. Right now Liam is still sleeping in the swing or bouncer so he is upright even though he hasn't been getting sick during the night and only gots sick once or twice thorughout the day. Im playing it safe because his aspiration cause phnemonia once and we dont need it again. Even though Liam hasn't been taking anything longer than cat naps throughout the day he's been in good spirits. He's not as cranky and doesn't want to be held all the time. Lanie has been helping us with him alot. She sits infront of him and talks to him and gets him his toys and plays with him. He thinks is the greatest thing in the world to have all that attention. She gives him his paci and turns on his music. She's such a huge helper. If he needs a diaper she will bring it to me or if his pump is beeping she'll turn it off if thats what it needs. I don't know what I would do without her. She growing up so fast. She will be 4 on thursday. I can't believe I have a 4 year old! I feel so old lol. She's growing so fast, and Im so proud of her. She can count 1-12 and recognizes the numbers when she sees them somehwere. The other day when we went to get gas she told me what pump we were at. She can do addition (1+1 through 7+1 ao far. And even 4+4,5+5 and 6+6). She knows so much already and hasn't even started school. We had thought about putting her in pre-school but with Liam's health being so fragile and the frequent hospital stays we cant risk it. We can't risk her getting exposed to viruses and bringing it home to Liam. We also can't risk getting her settled in pre-school and end up having to pull her out because we had to do another stent at the hospital. So pre-school will be conitnued at home by me. I would love to get her into some sort of activity. She does need the interaction with other kids. For now shes stuck with me and Liam throughout the day. We're throwing her alittle party saturday for her birthday out here at the house. Nothing big or extravagant. Nothing like Ive been able to do the past years. Just BBQing hamburgers and hotdogs and having family over. Not even alot of family at that. Everyone asked what she wanted and I told them shes wants everything but she really needs clothes for spring and summer. I know she'd love getting a ton of toys but we just had Christmas were she got a ton. I had t think ahead and be practical. I just hope she has a good time.

Changes on the horizon

Met the pediatrician at Kaweah Delta this morning. He had to go see another patient and took time to see Liam. He is concerned over Liam's tachypnea but his lungs still sound clear with good breathe sounds. I was telling him that I think it was just the albuteral that Im allergic to it. Everytime I give Liam a treatment my symptoms get worse. The very last treatment I couldnt hardly breathe after and had hives. I told Dr Coverston that these red bumps showed up after we started the albuteral and that he didn't seem to breathe better after the treatments. Liams albuterol was switched back to xophenex but now nebulized and his QVAR was changed to pulmacirt, a stronger steriod preventative med. Hopefully these work and then his vommiting will stop. If not, then we'll have to take it from there. We can try new meds but theres only so many out there. The only other solution would be a surgical procedure where they open up the muscle conecting the stomach to the intestines with a shunt since he had slow motility. Surgeons said he might have to have this done if he was going to continue to vomit. I have hopes that the new breathing treatments will work. Theres no reason to think that they wouldn't. However I am thinking of putting Liam back on the ranitidine (antacid) because I dont think the other antacid ever worked for him. And I want to find a replacement for the Reglan since there are so many side effects and dangers to taking Reglan. Usually Id say "nows not the time to mess with meds" when he's sick but maybe now it the time. Obviously if somethings not working then we need to find something that will work instead of being discouraged by that one thing not working. Liam can handle his nightly continuos feed of 35mls per hour. We tried 8hrs of 43mls per hour today and it didnt work. Tomarrow we'll try the 9 hours of 41mls and hopefully that will work. If that doesnt work he will be on a continuos feed of 35mls per hour for 21hours a day leaving only 4 hours of not being fed via gtube. I hate that were having such a hard time finding things that work for Liam but I am feeling very obtimistic that there are still options out there and that we will find something. Yes I hate that we're going through this and yes I still want my "easy" button but I cant change things. I cant say Ill feel this way tomarrow or even the next day. Some days are harder than others like Im being crushed by the weight of the world. Other days nothing could bring me down. Is weird being on this roller coaster of emotional highs and lows. Im hoping for more days where I feel optimistic and simi-happy, these are days I can handle. I know its going to be a long journey, and my bags are packed (metaphorically speaking), I just hope I packed for everything.

CDH Tornado

It's not easy. I know its not supposed to be easy, thats its not going to just suddenly get easier. There is no magic "cure all" or 'easy" button like in the staples commercials. It doesn't matter how hard I wish there was, there will never be. It doesn't stop me from wishing and praying for a magic "cure all" or "easy" button though. Every day is a struggle, every day holds new obstacled. I can't get comfortable with the now because things are ever changing. I don't mind change, I love change. I feel like i'm in the heart of a tornado that reaking havock and reckage everywhere it goes. I'm not the one causing the dissaray, just stuck in the middle. CDH has turned my life upside down and is continuing to cause it's damage. Liam is taking another turn back down the path that will eventually lead us to another hospital stay. I've been dilagent with Liam's breathing treatments, despite the fact that Im allergic to them. I put on a mask, and deal with the hives, headaches, itchiness and ever increasing symptoms. The breathing treatments aren't working, he's retracting again which means he's struggling. He doesn't sleep but for cat naps during the day then fights it at night. I have to meet the doctor in the morning. Dr Coverston has to go see a patient at Kaweah Delta hospital and wants me to meet him in the ER waiting room so he can eyeball Liam himself and see the retraction. Were changing his feeds, his breathing treatments will change and then we will go from there. Thank God for options. This CDH tornado is reaking havock on my marriage. I'm doing it all. I do Liams feeds, meds, breathing treatments, diapers. If it has to do with Liam, Im doing it. On top of it I get to hear my husband b!tching and complaining every step of the way. He doesn't grasp the concept of Liams condition and him being "special needs". He thinks Liam goes to the doctor too often and that theres no reason to be going and doing all this. His whole theary is that he's fine as long as hes not blue and if Liam shows signs of being in perel or turning color then we take him to the hospital. He doesn't believe in preventative measures. I get the blunt end of it. He gets pissed and complains and raises his voice and I have to hear it like theres not enough stress on me. I feel like he's blamming me for Liam not being "normal" or "healthy". It sucks. It's not fair. It's tearing us apart. The one person that I should be able to run to for help or support is undependable and unsupportive. I have only 1 person I talk to about all of this and even they can't completly know how it feels to be me. It makes me wonder if CDH has torn apart other families or put mountains of stress on them or if I'm the only one. I feel like I'm the only one who feel this way or who is going through this. It's sad because I feel like it would take stress away from me to walk away from this marriage. I feel so confined and alienated. Im stuck out in the middle of nowhere with two kids, two cats and a computer to get me through day to day. I feel like I'm playing a game of poker and the dealer is dealing shitty cards every turn. I know life can be what you make it but all Im seeing right now is meds, breathing treatmants, and hospital stays. The world is sitting on my shoulders and the walls are closing in. I want some peace in my life to replace the depair and anger and feeling of utter failure. I want to believe all the mantra's I repeat in my head or to others. I want there to be no doubts. I want happiness to replace the dissapointment and depression. I want to know that when I tell people "things will get better for us" or "things wont always be this hard" that it's true and not something Im trying to make myself believe as much as others. When I say "I'm fine" or "I'm holding up" I want it to be true and not a sometimes lie or a half truth. I would love to be 100% positive that when I hold my crying son close and tell him "everythings fine, theres no reason to cry" that its true. It seems I lie or tell half truths more than the truth. I spend so much time trying to convince others and myself and reasuring them. No matter how I try to sugar coat the truth its not going to change the situation. Liam is who he is, he will always have issues. I am slowly moving into the acceptance phase of this. I don't freak out and run to the doctor everytime Liam pukes or wakes up have a tiny bit of tachypnea, theres no reason too. What I cant accept is having to do it all on my own and get added stress from the one person who is supposed to be supportive and help ease the stress. I was handed lemons, but i'm not going to make the perverbial lemonaide. Im going to make chocolate cake instead. I don't know how tomarrow will be, let alone the next few hours, but damn it Im going to fight. Im going to be happy, find a way to be happy and deal with the cards I have been dealt. What's done is done. It can't be changed or erased. I will continue to do what's best for my kids, weather they like it or not. I hope and pray for this tornado to dispense, for us to land on steady ground. They keep saying over and over that it gets better after the first year, things settle down to be more normal. The more I read of other CDH cases the more I see that thats not the case. Maybe things don't calm down but we learn to make this the normal or see it as normal. Maybe we just get used to the craziness and frequent health issues, doctor/special visits, hospital stays. My theory is that we either learn to adapt to this life or we will continue to struggle and fight against it and end up crashing and burning in the end. To adapt, i'm going to have to learn to accept this then learn to overcome it. Its hard when the one person thats supposed to be there for you is fighting is to the death and in completle denial. I know i'm supposed to put it in God's hands, all my worries, all my doubts. I pray hard, but my faith is still a bit shaken. I still find myself questioning him, though not quite as often, but I still struggle. I'm still going to wish for that "easy" button that'll "cure all". All it takes is for one tread to be pulled for everything to either fall into place or fall completly to shambles.