Quick Update

Yesterday was the day of complications. Avery's left arm on the side where the port is was swollen like a ballon. He has a clot on his arm from the port. So the port was pulled yesterday along with a endoscopy which showed some irritation and bleeding in his stomach. So today he gets a new line in his arm and his gj tube has to be fixed b/c they messed with it in surgery yesterday. Poor kid has been through the ringer. Please keep us in your prayers. BTW he is also allergic to soy so they will have to change his diet around again.

We are BACK in the HOSPITAL

UGGHH. Can you believe it..... We went in for a drs. Appt. on Monday and he (Avery) had been looking pale and puffy eyed all week and running a low grade fever. So into the ER we went. Twelve hrs. later we ended up getting admitted b/c he was dangerously anemic. Then I had to drive home at 1 am to get his formula b/c the pharmacy does not make it up till later the next day and he cannot go anytime without it. So back to the hospital at 3am. Unbelieveable.

So his blood levels were still low yesterday and he ended up getting a TRANSFUSION. This word is just so scary to me. I don't know why, but after all he has been through, this is pretty scary to us. He did well with it. Looked like a whole new kid today.

But we think he was so anemic so quickly b/c he has some kind of bleed in his stomach. SO tomorrow he is getting an endoscopy which is a scope to look in his belly and see where the bleeding is coming from. I feel like we are getting no where fast. We go in for a problem and come home with more issues and still no answers. IT IS SO FRUSTRATING!!!!

This poor baby has had it. When we checked into the ER he was smacking the registration lady. Poor thing. I just don't know when things are going to ease up. I feel like we as a family are so out of the loop of life. I swear I barely know what month it is. And to boot, I have been going to work b/c I actually need to make some money to pay our bills which are so behind b/c of all the hospitalizations. Well this lady who is about 100 yrs. old with one tooth hanging and blind and death was swearing like the dickens at me b/c she does not like her hearing aid and thinks I am killing her with it and yet her daughter wants her to wear it. It is just hilarious. What can you do. But it certainly gives me the laughs I need to get me through the bad times.

Isaiah is feeling great and loving school. Janessa is getting excited for her SEVENTH 7th birthday next week. I cannot believe it. She has planned her whole party, thank god. She even picked the date and the activities. She is too funny.

Thanks for reading. Isn't our life a crazy. I swear it sounds like we are making it up but I wish we were. I would like a normal life for at least one week. Keep reading and make sure you bookmark this site b/c it you never know it could be a book one day. LOL.

We all went to the Mitochondrial Walk today

It was a perfect day. The boys were feeling great and did very well. Janessa had a great time.
Sixty thousand dollars was raised today. Next year we plan to have a big team for the Nault boys and raise a ton of money.

We could so be on a Reality TV Show

I swear everyone must think we are lying or something. But the crazy reality is that we are not. So we were back in the ER tonight with Avery. Yes, I know. With all the new medications he is on that are all a tablet, this very thing is why we were in the ER. His j tube which is gets all of his food and meds. by is a very very small tube and thus clogs very easily. Well it decided that since we had been enjoying home for a few days to act up today. Now if this gets clogged then you have to go to the ER in hopes of getting the radiologist to come in and change the tube. Only the radiologist can do this. UGH!!! Because he is on this new diet, he cannot go too long with out any food and can only get certain types of IV fluids which further complicates things.

So after all was said and done, it turned out to be a record short ER visit. They were all ready for us since I had called in ahead of time (like booking a hotel room. Ha, Ha). Well the radiologist could not get us in until tomorrow. Double UGH!! So a resident figured he would really try with a special pancreatic solution and GUESS WHAT!!!! IT WORKED.... YaY. We are home yet again. Now to figure out a solution for his medications. Hmmm.

Did I say that I am so sick of talking about sick kids. I want to talk about something happy for a change. I do have to say, "thank god for my job" I get laughs all day from the elderly. It really keeps me going. They just say all the things you want to say and but can't. Janessa is also another one that keeps me laughing. She is just too grown. I tell ya. That girl has more drama in school with friends than I do. Now you know that's alot. She is just such a great kid. She was so upset so see me go to the hospital yet again. I guess she was talking to my neighbor about it. That just breaks my heart. I cannot wait to go to NYC with her for her birthday. Just her, mommy and daddy time.

Isaiah is still not feeling well with his spell. He should be better by tomorrow, hopefully. He really enjoys school. Tears just come to my eyes every time I picture his smile. He has the most amazing and infectious smile ever. He is so in his element at school and this gives me piece. I just want my kids to be happy and pain-free.

Is this too much to ask???

Here I go ranting again. I just meant for this to be a quick update.

Avery and his battle scars

The patch near his chest is his port, the ones on his belly are his g and j tube. The bandaid on the leg is from the muscle biopsy and the top on the other leg is where they went up in his groin.

YaY!!! We are Home!!!

Wooohoo, yes it has been a looong few weeks to say the least. Many snags along the way. Avery did very well on the keto diet. Man is this diet alot of work. I feel like a chemist. Everything has to be weighed to the gram. , He cannot have any lotions, toothpaste, and sublocks and even chapsick unless it is ointment based. Nothing at all with any sugars or carbs. All of his meds. had to be converted to pills b/c liquids all have carbs. He had a really difficult start b/c it is so shocking on the body not having any carbs/sugars. But once he got he adjusted, he did really well with it. We were all set to go home on Friday but Nooo.

Avery got this port placed last Friday and it should have work fine but apparently the surgeons had alot of difficulties placing it. This is a central line that is used to draw blood and giving fluids. Well the drawing blood part had not been at all working. The surgeons finally decided to look at the x-rays (thurs. evening) and said it was not in a good place. So they wanted him to go under on Friday for a "fishing expedition" to try to pull down the port in the right place. They put a hole in his groin and put a cath. and went up to the port and tried pull down the port for almost 3 HOURS with no luck. Mind you, they had to starve Avery all day which totally threw off the diet and made his really ill. So basically it was a waste of a day.

But we are finally home and with more craziness. He came home with more equipment and meds. My house looks like a hospital or a medical supply company. LOL.

Isaiah started school and has a nurse. He absolutely loves it. They are so good with him. He could not wipe the smile off of his face all day. Poor guy, started a retching spell today which was bad again so probably no school for him tomorrow.

Janessa is happy to have her family back. It is great to all sleep in the same house again.

Sorry I have not blogged in awhile. Yes it has been draining and crazy. I have been in an emotional major funk this week. I feel like someone has just beat the you know what out of me. I have not been sleeping at the hospital b/c I have to be at the house in early am so Rick can go to work and make some money. For this I feel really guilty. I then in the am sit in horrendous traffic, it takes me 2 hrs which at night it only takes 35 mins. Poor Avery is left all night and into the morning by himself. It is all just really really hard on our whole family.

This weekend Avery pulled out his gj tube which required replacement and a delay in the new keto diet. So he finally started the diet this afternoon. We will see how he does with this. It can be really taxing on the body. He cannot have ANY sugars whatsoever. All of his medications that are liquids have been converted to pill sugerfree form. I had to order a gram scale b/c all of his formula has to be measured exactly. It is really strict and we have to monitor his urine and blood. Not to mention he will be getting nightly IV fluids for hydration. SO lots of changes and more chaos. THis is just a really rough time for us. Pray we will all get through this and Avery will be much more healthier and require less hospitalizations. Thank you. Hope everyone is well.