Aidens Surgery

Heyy Everyone!! It's been a really long time since I've posted anything on here!! I am really sorry...it's alot of work taking care of Aidens, working, and having family time :) Its very tiring at the end of the night. Yesterday, we did come back to Cincinnat for his surgery. They wrapped the top of his stomach with his esophagus. This will help reduce the risk of him refluxing his formula. They also changed his feeding tube, to a button. Now it is flat to his skin, it just sticks out a little bit, but he does not have that long tube anymore!!! (( i am verry happy about that, sometimes he would pull on it, or it could get stuck on something..its wayy better this wayy!!)) The surgery went veryy good!! The doctor said he did have some trouble getting the old tube out, but he eventually got it out!! Aiden is very cranky. he is definitely in a lot of pain. They made 3 small incisions in his stomach. They also cut acrost his belly button, and around his feeding tube to make the hole bigger. I think where they cute around his tube is really where it is bother him. They gave him some tylenol and another pain medication so he was doing pretty good when I left the hospital tonight.
When they did the surgery, they had to put him on a ventilator. When they first told me that, I kept crying. For a normal kid, thats fine. They can breath on there own and be fine later. For Aiden, he has respiratory issues as it is, so I try to keep him off oxygen as much as possible. His little body will get lazy and let the ventilator do the work for him, in just a short period of time. This was my biggest worry yesterday and all night.
Today, at 12, they pulled his vent. He is now on high-flow-nasal-cannula, basically its just pushing air into his lungs to make it easier for him to breath. He is doing wonderful with it, although he is working a little harder to breath! You can see it alot in his chest movement. Tomorrow they are going to start using his bipap again. They want his stomach to heal a little before they put to much pressure into his lungs. They also started his feeds back up today, he hasn't ate since 5 am yesterday morning!!! UGhh, that is soo frustrating for me. Aiden only cries when hes hungry and in pain. You can only imagine how cranky he was today being in pain and being hungry!!! He tried to nap from 1-4 pm today, all he did was whine. He is now eating, and getting more pain medication soo tonight he should sleep pretty good!!
I hope everyone has a great thanksgiving!!! Spend all the time you can with your family and just be thankful for what you have!! I know this year, I am looking at everything differently!! I have never been able to take help from others very well, now I embrace it and try to just help others in return. I am very thankful for Aiden, Kendra for telling me about Cincinnati, my family, friends, all the support we have, and just having a good life. I have so much to be thankful for. I think of everyone who helps us, and loves us everyday..we really couldn't ask for anything better than that!! Thank youu for keeping us in your thoughts and prayers, we will do the same for everyone in return :)

Finally Home

Sorry it's been a few days since I've posted anything!!! We got home Thursday night.. it felt WONDERFUL to be home again!! that first night, I did not sleep at all..&& on Friday we had lots of nurses over to see how Aiden was doing. That day all I did was dragg!! I wanted to sleep soo bad! Aiden did WONDERFUL the first night home. I put him in his bed and he fell RIGHT asleep!! He must have really missed his crib! lol. He did awesome on the ride home. He slept all but an hour. The last hour all he did was talk. He really enjoyed his car ride!!
His grandma is offically his nurse!!! That makes me comfyy because I know her and I know Aiden will be well taken care of. Also, the insurance company approved us for 56 hours of nursing care a week! That was the best news I've heard (( besides going home)) all week!! I am going to use a nurse at night a few days a week, and the days that I am working. I will have his grandma, and another nurse come in! Aiden's care is veryy time consuming. He has to have something done to him almost every hour. It is very tiring.
The only thing that I am really concerned on is, when I was suctioning him, he was having A LOT of formula come back out!! Which means, he is refluxing, and its VERYYY bad!!! I am going to call the doctors in the morning and see what they want me to do. Aiden goes back on the 23 to have his stomach wrapped, so I'm hoping they don't want us to come back already!! I guess if it's what he needs, then that is what I will have to do. We wil be there through Thanksgiving..sorry everyone.. :(
Othe than that, Jeff and I are doing okay. We are just cleaning up the house. We had to reorganize EVERYTHING so we could get aidens machines all in his room!! which meant taking alllll the toys out!! lol.. but thank you for your thoughts and prayers!! take care everyone!!

Pictures

No Changes Here

Aiden is doing wonderful today!! He is soo happy and alert! He is yelling at me everytime I go to talk to someone else! lol he is verryy funny today!! He was going to have a GJ tube put in. Basically the tube goes from the outside of his stomach, to the small intestines. Aiden already has a G tube in, just from the outside of his belly to inside his stomach. Thats how he eats.
Well, they took him down to surgery and after looking at his tube they realized they could not change his tube. There is a disc on the inside of his stomach, they would have to pull that disc through the opening in his stomach and the doctor realized that it was going to cause to much trauma to his body and skin so they didn't touch it! I guess we will just have to come back this month sometime to have his stomach wrapped. He should be okay until then.
Other than that, he is good. I talked to the equipment company and they should have all his equipment home and working tomorrow. The doctors said we should be home on Thursday!! UGHhh..home just sounds tooo good to be true, so im not going to get my hopes up!!! thank u everyone for the thoughts and prayers! Jeff, Aiden, & I are so thankful, and lucky to have such a great support system!

Great Dayy

Today was a great day!! Aiden is doing wonderful!! He is laughing and talking like crazy.. it is great to see him back to his happy baby self!! When Jeff and I got to the hospital this morning, he was sitting in the doorway, in his swing, talking to all the nurses and people that were walking by!! He has the whole hospital staff loving on him every second of the day! He was supposed to get his GJ tube put in today, but they didn't have everything they needed for his tube to put it in. Tomorrow morning they will be getting everything and putting it in!! Wendseday, is the day that we are finally going home!! Yayy, we cannot wait to get back to everyday life!!!
Aiden's getting verryy bored in the same hospital rooom all the time, so Jeff and I put him in the wagon and took him around the hospital!! He LOVED that!! Can't wait to get him goin home and back to normal life!!

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Finally..HOPE!

Yesterday, I talked to an equipment company and they FINALLY agree'd to give aiden his bipap machine, along with his cough assist, special formula, and oxygen!!! YAYYY.. that felt great!!! I was soo excited!! We get to go home on Wednseday!!! YAYYY.. Aiden will be soo happy to go home to see all his friends and family. Other than that we are doing wonderful!! He is needing to be suctioned alot, but that is something I can handle! lol.. He is spending the dayy with daddy watching football, and melissa is coming to see me :) we are going for girls day!! Thank you for all your thoughts and prayers. :)

Unsure

So, not a whole lot got done today. Aiden still doesn't have his Bipap machine in order to go home. Although, I did talk to a company that "thinks" they should be able to give us a bipap as long as I signed a waver for him being to small. He needs this machine so I will do what it takes to give him life! I want him to fight, to be a strong happy baby, I know in my heart, he is not ready to give up his fight just yet!! If this does not get Aiden what he needs, we are talking about sending him back to Toledo Hospital until we can get what he needs. We wanted him to go to St. V's, but our insurance won't pay for it. So, we have to see if the equipment company will be able to get the machines, if not...then we have to call Toledo to see if they can take Aiden back. I hope tomorrow, everything will fall into place!!
On the non-medical side, Aiden was very good today!! He was a little cranky today. I think he just needs to get used to being off his bipap for the 6 hours a day!! His chest x-rays have come back wonderful!! Soo the only thing we are doing is waiting for him to be ready to be off his bipap for 8 hours a day! lol if aiden can't go home, i am hoping toledo can give him the care he needs, then i can come back home to go back to work. Aiden will also be around his family and that is what he needs. He has his fun baby personality back!! He talks and is always trying to play with something.. I could not be happier for the treatment Cincinnati is giving him here, but we are readyy to go home once hes ready to be off the bipap for 8 hours a day!! :) Thank you everyone for your love and prayers!! :)

PICTURES

Almost Time To Go Home

Okay, so about 20 minutes ago a lady from early intervention called me and said she knows a company that should give aiden the bipap machine. So, I called and the lady says she does not think that there will be a problem getting us a machine!!! yayyy... I am going to keep my fingers crossed. HOPEFULLLY IT WILL COME THROUGH THIS TIME!! But if this does not work, Dr. Reddy said he would continue Aidens care at St. V's. So, if we do not have any luck getting a bipap machine, we will have aiden sent to St. V's on Monday!!! It does stink that Aiden will have to be in the hospital longer, but he will be able to be close to home and by family. I will then go to work again!! yayyy :) keep your fingers crossed please!!

Stuck

So today we have been working like CRAZYY to get company to do the bipap machine. We have not had any luck yet. Aiden is not quit ready to go home yet, but he should be soon. The only thing that is holding us up is the bipap machine. I hope something comes through..Only one equipment company accepts the insurance that we have. They will not give aiden a bipap machine. The supervisor called me today to "explain" why they will not let aiden have a bipap for home...here are her reasons...
Sup: The FDA has not approved that for children of aidens age, it is not safe.
Me: Well, they do it here in the hospital and hes fine with it. They have companies here in cincinnati that will give children the machine, whats different about Toledo?
SUP: They are making parents signing a waver, taking resposibility if that machine would harm there children. We will not do that.
We then go on arguing about how she thinks it is not safe for aiden to be using the bipap and if i buy my own im going to harm him..She also tells me how " I just dont understand"
Me: Okay, so how does your company let children breath?
Sup: Put him on a ventilator.
ME: so your telling me to trec him then put him on a ventilator?
Sup: If thats what he needs to breath.
Me: I AM NOT DOING THAT! HE DOES NOT NEED THAT!!
Sup: Well then, thats your choice. Have your doctors figure it out then.

Okay, so she thinks aiden needs to have a trec put in, and put on a ventilator to breath. I cannot believe her. The bipap does not breath for him. It just helps with a little pressure in his lungs, to help keep them open, to help him breath easier. If we put him on a ventilator, he will not breath on his own at all!! That lady need to come to Aidens unit. She needs to suction a few trecs, clean them up after a child has thrown up out of them, and just care for a child with a trec. She will think twice next time she tells someone to do that!!
Other than that, the lady trying to help me go home is going to try to get us straight medicad for aiden. Then there is another company that will give him both machines to go home.. Its going to take sometime and paperwork. In the mean time, i am going to try to get him switched to st. v's. He will only really need to be there until we get the bipap, but atleast we could be closer to home!!!

SO PLEASEEEE....LEAVE ME YOUR COMMENTS ABOUT THE LADY AT THE EQUIPMENT COMPANY..WHAT SHOULD I DO?? DO YOU THINK ITS RIGHT FOR HER TO BE TREATING PEOPLE THIS WAY..WHAT IF A PARENT DIDN'T KNOW ANY BETTER AND DID THAT TO THERE CHILD? ...it is just not far to these babies that get the end of this shit!!

Frustrated

I am at a complete loss for words. I dont know where to go from here, or what to do. I have called every single equipment company to get aiden a bipap machine and no one will give it to him. Now, on top of that, the insurance company doesn't want to pay for one because its not FDA approved. I feel like im at the end of my rope!!! I dont understand how someone can deni a child the ability to breath!! If we don't find one by Friday, I will probably have to go home with week to work. I will be saving the money to buy one myself. Aiden will not live forever, and I have come to that understanding- But the time he does have, I dont want him in the hospital any longer than he has to be!! The machines go from 800-5000 dollars, depending on the machine. I am going to go back to the hospital to ask the doctor which kind he needs. Hopefully not one thats TOOO expensive so he can come home soon :)

Nothing But Smiles Here

Todayy is a very good day!! Kate & I have been up at the hospital since 830 this morning and he was all smiles soo far today!! I actually made it up to the hospital before the doctors did rounds!! They basically said they are going to increase his time off the bipap.. 2- two and a half hour windows a day!! Yayyy we just have to make it to 8 hours a dayy and we are readyy for home!! Nothing has really changed, they are trying to toy with his feeds, so he can have some time off his feeds to do his bipap so he doesn't throw his food up when they do the cough assists..that is going pretty well..
Also, the bone doctor also stopped in yesterday and again today. The Respitory doctors have been doing x-rays to make sure Aidens lungs are staying open and not colapsing due to the amount of pressure he is losing from the bipap. In a few of those x-rays, they said it looks like aidens arms is out of socket up where it meets the shoulder. The bone doctors said they think it is okay, but they are going to send in the head doctor to double check it!! We will have to meet with him when we come back every couple months for aidens check ups, to make sure its still doing okay!!
Aiden is now napping. He has had his bath, played with Kate & I all morning, and yelled at everyone whos come in his room! lol so he is pretty wore out right now!! I will get back on later tonight to post another blog with all the medical stuff that happens today!!! The dayy is young and I am faithful, SOMETHING will come upp :)

Meeting With The Doctors

Today, Jeff and I had our meeting with the doctors. They went over all our options with Aiden. Basically they started out really by telling us he is doing really well responding to all his treatments. They then asked what our goals for Aiden were, and how far we really wanted to push his care, ( or his life span i guess I'm trying to say). Dr. Wong told us it wasn't something that we had to decide at the time, she just wanted to know so she could plan for long term care, or short term care and she would give us over the next few months to see how much care Aiden is going to require. She said after taking care of Aiden for a few months, we will realize if we are able to take care of his every need, or if that's the kind of life we want aiden to live. WIth all that being said, Jeff and I decided to go ahead and have a JG tube put in, to help prevent the risk of aiden refluxing his formula. He will then decrease the risk of damage and catching pneumonia. We will then make an appointment to bring Aiden in to get his stomach wrapped. This will also reduce the risk of him refluxing alot too. This will require surgery, but it will not be hard surgery for his body to handle. Basically thats pretty much what they are afraid of his him refluxing his formula. Other than that, the doctor said frequent suctioning is normal and they expect that. Today, he had a few choking episodes. He was choking on his own spit and turned purple, that was veryy scary but i guess good for me to see before i go home and have to deal with it all on my own. We will continue to come down to cincinnati every 3 months for atleast a check up. They have to watch closely to see how he is handling his secretions and how his disease is progressing.
On the non-medical side of today, Aiden was veryy happy. He spent a lot of time with mommy && daddy. He also got suckers to eat, and he was happy most of the day. He is developing a temper!! He gets mad soo easy, I think its kind of funny. His heart rate goes up and he cries. He has slowly but surely been getting his personality back. Its funny to hear him yell at the doctors and nursing all day!! He watches them like a hauk when they come in the room. He also decided he would close his mouth when u try to suction in it, and keep his jaw locked down so you can't get in! lol this is just funny for me to see him get strong like that!! Yesterday i was clipping his nails and he was pulling his hands away from me, this is all new to me. He has never done anything like that before. Everyone keeps telling me, he is strongg for an SMA 1 baby!! I just dont want to give up on him, if he still has a fighting chance in him!! ((WHICH I KNOW AS MOMMY THAT HE DOES))
Yesterday, Jeff and I traveled to ikea to get him a bed tent. They didn't have the one I wanted, but they had one that looks like a leaf. He LOVES to pull the blanket over his head so I thought this would be right up his alley. Other than that, everything is going okay. We are having trouble with our medical equipment company getting all the proper machines to go home with. They think Aiden is to young and doesn't weight enough to use either machines they are using here, the bipap and cough assist. The doctor here on Aiden's unit is going to call the equipment company to see if he can get him what he needs. He says they just dont want to be held reliable if anything were to happen to him. He also said that the hospital would take that liability, so hopefully with all that they will get them for us!! Thank you everyone for your thoughts and prayers and hopefully tomorrow I will have wonderful news for everyone!!!

Sundayyy

WOW!! I cannot believe it is already Sunday! I feel like I have been in the hospital for months now!! (( its really only been just over 2 weeks)) Oh well, Aiden is getting the proper care he needs down here in Cincinnati. Children from all over the world are here getting care. I truely agree that this is the best hospital for a sick child to be at.
We had a great Halloween over all. Aiden was very cranky by the time we left last night. --I stay at the Ronald Mcdonald house at night. He is not used to people being in his room while he is sleeping, so he thinks it is still play time..that makes for ONE CRANKYY BABY in the morning. haha.
I dont expect much more to happen today, with it being Sunday and all. Aiden will do his 4-one hour windows off his bipap today. The doctors will continue to do x-rays to keep a close eye on his lungs. They want to make sure his lungs can tolerate being off the bipap this much.
By the middle of last week, Aiden really started showing his "happy baby" face. He is talking and smiling. I cannot be happier to have my baby back. I swear, when I seen how miserable he was on that ventilator, my heart was broken. I didn't think I could stand to EVER see him like that again. I'm just sooo THANKFUL to kendra for sending us here..SHE saved Aidens life. I hope once I get home, Aiden and I can meet her and Ricky. (( her son has sma 1-just like aiden)).. I think she can really give me useful advice about taking care of Aiden. Her son will be 5 this year, so she has probably been through it all!!! I am hoping to get involved in the SMA community. I think, they are going to be an important part in taking care of Aiden. They have been through all of this that we are doing right now. So they will be able to help guide me in the right path.
I am asking everyone to save there pop tabs for the Ronald Mcdonald house. They have been WONDERFUL to us. They have given us everything we need and more!! I hope once I get home I can volunteer at the Toledo Ronald house. I want to give back to others, the way they have given to us here.
I will probably post another blog later today if we talk to a doctor or if something has changed. Tomorrow is our big meeting with all our doctors so we will know EVERYTHING tomorrow..I will be sure to keep everyone updated!! :)