Man I knew it was going to happen it was nice when we were in the hospital, and know were home it is raining..of course..Zachery is doing pretty well he was kinda cranky today, I don't know that little boy doesn't want me out of his sight at all! It's kinda sad we were at my moms today, and I went out to the van to get his suction machine and when I got back inside he was crying like really crying, and I was like bubby what is wrong and as he was pouring tears, he was laughing hysterically...oh what a mommy's boy!! I put some steri strips on his sight last night after the bath and tonight they were cover with all kinds of gunk and fluid I think mostly from him rolling around, so I soaked them with water and cleaned the sight and dried it and I'm gonna let it get some air, for the most part it is closed just a small place leaking clear fluid, so I think we are good. I'm kinda sad for Zacher man, the doc's said he could go back to school but I think that it is best he stays home, his graduation will be May 14th so we will attend that and maybe visit one day, but he is again going to miss the last weeks of school, for some reason April we are always in the hospital last year he missed. Allie is still getting to go, it was weird today having bubby home and not her, when I dropped her off she looked at me like wheres bubby why isn't he staying:( but she was just fine. so all is going well we went for a little walk this evening with my mom and little sister, the kids really enjoyed that, so hopefully it will get really nice so we can spend more time outside. oh and today no pain medication needed thank god!:) I don't know what that stuff wired him up it was crazy that boy didn't go to bed until almost 1 a.m man jokingly I told my mom maybe I need to take a swig of that:) to keep up with him, my luck it would knock me out!:)
So we finally got to come home today, I'm so so so happy, so is Zachery oh boy that little man has been on the go go go. He is scaring me though, his incision is busting the more he rolls around:( I gave him a little bit of pain medication after we got home because he was upset, I figured it was because it took us 3 hours because of the rain, I thought maybe he was in pain from sitting so long, well yeah that crap wound him up, he is begin crazy, he is so happy, but I can't get him to set still. We are still on continuous feeds until tomorrow, but I have been giving him breaks cause he is tired of sitting still. Know he doesn't want to go to bed, so I'm sitting in his bedroom floor so he don't jump out of bed!! I'm worried about his site though, it is oozing all over I have some steri strips I put on it, but still I hope it heals soon cause we DON"T want to go back!!!! Allie is also happy to be home, at least I know she is in her bed and not going to get lost:) so hopefully bubby will go to bed soon, I'm tired and ready to rest in my own bed. I'll keep everyone posted on how things are going, and also Karen again thank you so much for everything that you done for me while Zachery was in the hospital, Thank you Thank you, I'm looking forward when we can get the kids together to play..and oh yeah Zachery will not be getting anymore of the roxicet!! Ibuprofen it is:)
Ohh. I think I'm at the point of going crazy today, Zachery has a pretty rough morning, they were trying to feed him to much to quick I think, but I think we got on the right track this after noon, on top of that the nurse and the RT got into it and put us in the middle of their fighting which you know I have enough to worry about and then the charge nurse came in and it just went on and on all day, then the RT didn't come back to give Zachery his treatment so then that was more crap, but yeah that make me mad because he need those!!! So I'm hoping that he has a good night, I'm ready to go HOME!! Today Karen and her daughter Hunter came to visit and brought us ANOTHER bag of goodies, thank you guys so much!:) it is greatly appreciated all the love and support that you have given us. So with that I think I'm going to call it a night and get some sleep
Well this morning Zachery is doing great, must be all those dandelions Stormy is blowing for him:) I took him off oxygen, and we went for a wagon ride to get him out of that stupid bed and room, he loved that, so were taking steps to getting home soon. Today his teacher Mrs Bridgett came to see him and brought balloons and a card the kids made, he was really happy to see her. he gave her lots of smiles.. We got to meet Karen and Tucker yesterday, and her friend Kim and little Will, they are all such wonderful caring giving people thank you guys so so so much!!! Also to the DSG they have also helped out to... So all is well so far and every day gets a little better and easier for Zachery. I'm ready to go home I really miss my little Allie, she was crying today on the phone and it broke me heart..so keep the prayers going and hope for the best that we will be home soon, Again, thank you to all who have helped and stopped by to see Zachery
Well I'm sitting outside the PICU ANOTHER one of Zacherys I.V's went bad ahh it makes me so mad that poor boy is black and blue all over, they wanted to put in a Central but I dont know they are just going to put one in his groin tonight and do a pic line to marrow, I swear this is crazy, but he has to have it. We are suppose to go to the floor tonight back on 2 Henson so hopefully soon I'm outside cause I can't stand to watch them poke on him anymore I know he proally hates me for that, it it's been an hour and they are still trying to put it in... Other than that he is recovering.
Well Zachery went through a five hour surgery Monday evening..the doc found a bigger mess than he was expecting!! A diaphragmatic hernia repair is all they thought, once he got in there he found also a big hole in is diaphragm, his fundo was undone, and his colon was inside that hole, he said his colon was in bad shape but he said it was pinking up after he messed with it for a while, he has been in pain for so long..it kinda pisses me off that my son laid for 3 days before they did surgery, they didn't think it was an emergency, boy were they wrong...I JUST wish they were a little more attentive too him, but it's over know and he has a road of recovery ahead, on that note, I went home this evening, I was going to bring Allie back with me because my mom came back up but once I packed her stuff and was going to leave I started thinking how much Zachery needs me, it was so hard to leave her, also daddy didn't want to be alone, so i felt kinda bad taking her away from him:( Oh also Zachery's PAT lady Kim came to see him today all the way from Trenton, that was nice and also Tuckers mommy sent him some balloons' boy I know when he feels better he is going to go crazy!!!!:) He was trying to play a little today but he didn't want to move much, I didn't want him to move much!!!! He is suppose to be moved out of the PICU to marrow, on to the floor, so hopefully that will happen, I know that is also another step closer to home, it makes me kinda sad I don't think that he will return to school the rest of this year, he only has a few weeks left so it look like I think anyways, no more school. I don't know what it is about the month of April last April, same time Zachery was admitted for some sickness they still don't know it put him in the PICU. I would love to skip April, but that is my baby girls birthday so we are going to TRY not to be here next year!!!!So on that note I think I'm going to call it a night, and get early and head across the street, I think he was mad at me today also, he cried every time I touched or talked to him but it was OK if aunt Holly did, it's so hard cause he can't tell me so...ohhhhhhhhhh Just everyone prayer for a fast full recovery
well it all started yesterday with a sore throat so I took him to the doctors, and got him some medicine, yesterday afternoon, I noticed that his stomach was HUGE I mean it was freaky, so I took him to the E.R and they did x-ray and shipped him to Children's Mercy, they think he has a obstruction!! Well I got up here around 1a.m. this morning, and about 3 they did another x ray he is starving and can't eat, he's not having bowel movements, so I don't know they came in earlier and think that maybe he has a diaphramatic hernia-I can't spell that! but we will have to see, I;m so tired I haven't been to bed since Thursday night, up all day Friday and Friday night, still up noon on Saturday I think when he sleeps I will sleep I'll keep you posted
Well they kids are sick again!!!:( yesterday after school,i could tell that Zachery wasn't feeling good, and Allie's ears are draining so last night Zachery was up all night crying with his throat hurting so first thing this morning I took him to the doctor, well yep his tonsils are horrid, and big and gross, those stupid things have to come out soooooonnnnn!!!!! they make him sick all the time. Allie is pretty grouchy also, she just wants mommy to hold her. I hate when my kids are sick, poor Zachery is in so much pain, we have to take antibiotics for the next 2 1/2 weeks 3x's a day so hopefully he will be feeling better my next Tuesday so he can go to school, Other than the goal for this weekend is to get the kids feeling better, and hopefully this nice weather will sick around, I'm actually just wondering they had the kids outside at school this week, so that may be playing into the sickness, but I can't have them keep them inside, they need fresh air too. !!
Today all of the kids made it to school, usually I have 4 kids all together.. I have Zachery Allie, Emma, and my sister Stormy, they all go to school in different places, sometime it is so crazy they all go at different times, Emma goes from 8-2:15 Stormy goes 11:30-2:15 Zachery and Allie goes 12-2, and they are all at different schools, it gets hecktic to pick them all up also, but that is daily life for me. A day in our life consists of up and at'em usually at 7 Paul takes Emma to school, Stormy gets here and I get Zachery and Allie up, changed,meds,feedings ready, and feed them, usually after they are done around 9-10 I try to get Zachery to take a nap(haha) so he won't sleep at school, then I have to try to squeeze another feeding in for both of them so they aren't hungry while there at school, then I get them dressed, which is a work out, and get all Zacherys, machines ready to go, we have to leave the house around 11:25 to take Stormy to school, then I have to kill about 30 minutes before I take zachery and Allie to school at noon, drop them off and then it is home to clean or do what ever running I need to do, then before I know it..it's 2 time to pick them up, which they go to school about 3 miles out of town pick them up, head back to town to get Stormy at 2:15 and hall rear across town to get Emma which also gets out at 2:15 ahhh by the time we get home, they are ALL starving so I get Zachery and Allie's pumps going, feed the others usually Zachery falls asleep in the hi chair so I have to stop his feeding and take him to bed hook up his machines and start his feeding again, oh yeah in the mist of getting home change diapers!! it makes me tired just typing it:):) then it is time to start supper, and feed the kids again, then after supper it is bath time which oh Zachery's bath is no just a simple bath it is be careful no water in the trach which he loves water, and also that boy is HEAVY get him cleaned then we have to change trach, ties, all that stuff which he is getting hard to chase to get dressed he likes to roll off so then I have to chase him around the front room:) then about this time it is 9 p.m. and I feed them again , and put them to bed, THEN I clean up supper and finish any household chores, and usually stay up till midnight to start Zachery's continuous feed that will run until about 7a.m. and it starts all over again!! This is just basically how I spend the day with the kids shooooo!!
Today was Allie's first day of school and she seemed to like it well, when me and my mom got there to pick the kids up, she really didn't care to much..but my Zacher Man was happy as always to see mommy!! He gets so excited and happy he starts to smack his lips, which I don't know if it is a kiss of feed me:) but he always has a big smile when he sees me so that makes me feel really good, I didn't get a kid free day though..Paul's daughter Emma came home from school around 9, they said she was sick but...she was playing and running and well not sick anymore, which long story short when she is at her moms' she doesn't make her go to school, and well I think she has figured out how she is able to leave school, so bad for a 5 year old to know that!!!!! Anyways, the day was alright and hopefully tomarrow will be great too..
Well tomorrow will be Allie's first day of school I hope that she will be fine.. She hasn't been around strangers like that, I just hope that she doesn't think that I'm leaving her. I think she will be fine, especially when she sees Zachery is there with her, so not much more really. I think Mr. Zachery is getting sick again, he has been coughing alot and has been kinda lazy and whinny, just bumping his head and crying alot, that usually means that he is getting sick, I hope not but what can you do. The other day they had him outside at school it was really windy, but I know that they can't keep him inside, that is no fun!! This stupid weather needs to warm up and stay warm so these kids can stay healthy and enjoy life, Ahh it makes me so mad sometimes I want to yell at god and ask why, they have been through so much already can't they just have a break for once, I know I shouldn't be that way, but I guess I don;t know who else to blame at the moment. I don't know, mothers that have special needs kids that are sick alot know where I'm coming from, so I will leave it at that, and hope that Allie and Zachery will have a great day at school to marrow
Well it has been awhile since I have wrote but I have lots to say...Yesterday was Allie's 3rd birthday and we had a blast... We had a big blow out for her we had about lots of family and friends and lot of kids!! We had a Easter Egg hunt for all the kids and they had a blast.. The only bad thing was when it was time for cake Allie started not to feel good. She has this problem with being constipated and just at that time she had to go to the bathroom and couldn't' and she got very upset, and well I had to help her:( and after all that she was so tired and ended up getting sick all over my grandma, and then she went to sleep, but other than that we had so much fun. With that aside Tuesday we had Allie's transition meeting and well she will start school with Zachery next Tuesday, yeah yeah I don't know what I will do with myself. Oh boy my mister Zachery , the other day that little boy was on a rampage, he pulled the lamp off the table and it cracked him in the head, and after I got him settled down, he went over to the tall toy box and pulled it over on himself, so I decided that maybe he needed a nap and I put him to bed and well when I checked on him he was hanging out of the bed!!! Some days I don't know what to do with him:) We had a good weekend and ready for the week....
So..the weekend was pretty good..I me actually got to go out with the girls on Saturday night....it has been since last year on my b-day so it was nice to get out of the house and just feel like I have no worries. On Sunday we went to my aunt's house to see my cousin who came home from Pennsylvania with her daughter..we got to meet her for the first time, my cousin actually worked at Children's Mercy on the heart floor, which was so nice to have a family member taking care of both of my kids when they had their heart surgeries, which Karen, I was talking to my cousin about Tucker and she remembers him:) I told her about your blog, and she said yes she remember that little fighter:):) So this week is going to be crazy, Tuesday Zachery gets fitted for a bigger wheelchair and then off to school, Allie has her transition meeting on Wednesday since she will be 3 no more first steps off to school she goes, and then Thursday we are suppose to go to CMH but I think that it is going to be canceled because I have been having some problems myself that I have to immediately get taken care of and then Friday-Sat lots of cooking to get ready for Allie's party/Easter party, we are expecting around 20 people, ohhh I hope I don't go crazy:) So I think I need to call it a night and get rested for this long week
Today was so funny, I was cleaning house today and usually it's the other kids that will drag stuff out right behind me and it aggervates me so much, well first of all the boy is crazy over cords, it don't matter what kind he is after it, I was vaccuming the floor and he was chasing me and so I went down the hall and he was right after me, so I stopped and took him back to the frontroom and went to the bathroom and came out and he was back:) so I decided to quit and I went and cleaned up Allie's room and after I got done and went to his room he was in there taking stuff out of the toy box and I had to giggle about it... and same with the toybox in the frontroom, I guess I'm so amaized of this because he has never gotten toys out himself, I can tell that he is just getting this personality,and well it almost brings tears to my eye, it;s so crazy how the littlest things like getting toys out to me is a step in progress!!! He just really wanted to be behind me today and I love it. Allie is starting to do the same I just wish she would set up more on her own, she can when she wants to. My babies are growing up Allie will be 3 next saturday and we are planning a big bash for her....and I'm going to try my best to stay calm
I'm so tired of this crappy weather, I just know that the kids will be sick again!! I have to get them in and out in and out going to school...the store..I just wish it would warm up. Zachery is at school right know and it's just me and Allie. It is so wierd it's so quiet around here, even though zachery doesn't talk and Allie is usually the loud onen around here, maybe it's just cause I can actually sit down for a few minutes. I've been planning Allie's 3rd b-day party for a couple weeks know, I think that I'm done getting everything for it, we are going to have our Easter Egg Hunt the same day since all the family will be here. I don't know why I plan these crazy events like this, I always get so stressed when my house goes to well to right out say it hell:) oh well I guess it's fun time for the kids. I want to also say to Tuckers mommy, that yes I suppose I do have a lot on my plate but....we like to help when ever we can, I know how stressful it can be when you have to see your child go through so much, you don't want to worry about how are we going to do this, pay for that.. I think that it is so amazing that there is so many people that have reached out to help your family with Tuckers journey, with all the bad news you hear anymore on tv.. you can see how much good is still out there!!