You will not be surprised to know???

We are sitting in the ER.  Avery had a miserable night where he was in so much pain that he never went to sleep last night.  Aftter giving him every med. he has ordered and PRN meds he still was miserable.  Finally at 4:30 am I gave him rectal tylenol and that helped him sleep for 2 hrs.  He was so miserable that I thought about taking him in during the night but I was just to tired and his vitals were stable.

They are trying to rule out a few things.  We have already done xray studies on his gj tube, abdomen and hips and they look fine.  I am wondering if it is his gallbladder and I think they will be checking for that as well as kidney stones.  He is still in pain as I type and they gave him IV phentanol which has helped a bit.  Hopefully they can get to the bottom of this soon.  I am just worried that we will have no answers which is often the case and it can be so frustrating. 

I will keep you all posted. 

I did want to say a HUGE CONGRATS to the Romero's on their beautiful baby girl born this morning.  I cannot wait to meet her.    Also Congrats to the Central Catholic boys on winning the Christmas Tourney last night and good luck to the girls tonight.

Happy BIrthday RIck!!!!!!!!

We hope you had a great day today.  We love you.......


I have to say we had a GREAT Christmas.  It felt so good to be home celebrating with the whole family.  It makes you really appreciate the times you are home.  My heart goes out to all the families that celebrated Christmas in the hospital. 

The boys were feeling great until today of course :(     I swear we thought or wished Isaiah's cycles either were done or more distance apart since revamping all his meds.  But no dice..... He started retching today.

Avery woke up at 5am choking and the poor kid was vomitting blood.  Yup, never a dull moment around here.  At this point, I don't even panic about that unless it is copius amounts.  I have seen him do this many times and he gets the full work-up and it turns out to be nothing.  I suspect that it is his gut acting up so we stopped his j feeds for a few days.  He has not vomitted the rest of the day but he did seem to aspirate and now he is so junky today and requiring alot of nebs and the whole nine yards.  We are certainly going to do our best to keep him home b/c I really really really do NOT want to go back inpatient unless he really really has to.  I do think he is ok for now at home. 

The other thing is he looks like he has dropped some weight both me and one of the nurses noticed it :(   They not get a good weight on him inpatient b/c he was in full clothing with shoes and wet diaper.  I had spoken to the nutritionist while there and she said if his weight dropped then we would have to increase his TPN amount :( :(  Sucks, we are supposed to be reducing it not increasing.

So if you can spare a few prayers that Avery starts to feel better and we stay HOME, I would appreciate it.

Thanks all.

MERRY CHRISTMAS TO ALL!!!!!!!

We have been blessed with being discharged just in time to be home with the family and celebrate Christmas Eve and Christmas Day.  Wooooohooooooo

Hope everyone has a happy and safe Holiday

Going a bit stir crazy here

I am just not used to being in the hospital only 2 days before Christmas. Believe it or not we have never been in during a major holiday so I guess I got spoiled. But this is NOT the one to miss. The boys don't know it is Christmas but Janessa certainly does and that is what makes it very difficult. Janessa and I usually go to my friend's parents for Christmas eve and we have been doing that since she was a yr. old and she REALLY looks forward to it and so do I. So we are cutting it really close tomorrow.

Essentially, Avery just has a cold and with the fever yesterday and having this central line they have to do a 48 hr. blood culture rule out. Grrrrrr.. So he has to have two negatives before we can be released. This should happen after 2p tomorrow which is stressing me out b/c I have a ton to do. Don't get me wrong, he is junky and needing alot of suctioning and you can tell he doesn't feel well. But we could manage him at home. So as long as he does not get a fever before discharge then he will go home tomorrow. If for some reason he does have to stay then we have decided that we will spend xmas eve and day with Ness and Isaiah and one of us will come to the hospital on Frid. afternoon. But hopefully that is not the case.

So he is being admitted. He actually looks pretty good aside from the junkiness. Hopefully this will be JUST a 24-48 hr. rule out and we are home by Christmas eve the lastest...

Here we are in the ER with Avery who has a fever and sounds sick with coughing, sneezing and all. I am also worried about a line infection bc he has been having blood from his gut and recent constipation issues so I really hope he gut did not translocate to his line. Butr my gut is telling me he is sick with a virus.

Please pray he does NOT get admitted. Bad timing...

ITS TUES FOLKS.....

The Sickies Decided to stick around for a bit

Now Rick is sick and poor guy has to go to work and a long day at that. At least I was sick on the weekend and could lay in bed all day which seemed to do the trick for me.

Avery has now started with the cough and junky. He was up coughing since 4am this morning. For him, coughing is a good thing as long as it does not hold shop in his chest. Isaiah continues to have the same persistant cough. Janessa and I are fine.

I would much rather get it all out of the way earlier in the week then spend Christmas day being miserable. Just hoping Avery holds his own on this one.

On a funny note, I found Janessa's second draft of her Santa letter. Of course she has changed her mind about everything she originally wanted which is too late :) But here is what she wrote......

"Dear Santa, you always make the holiday so special but why do you use the same wrapping paper as my mom and dad. My friends don't believe you are real but I do" LMAO.......

How funny is that!!!! I guess Rick and I didn't do a great job at changing up the wrapping paper. I suspect this is her last yr. of believing :(

So we all hope to thoroughly enjoy the Holiday and I sure hope everyone has a GREAT Holiday season. Merry Christmas and Happy New Year!!!!!!!

Sorry for the lack of updates. Things have been busy here with half the household being sick. Isaiah has had a persistant cough since earlier in the week. So far it has been manageable and productive. Just hoping it does not progress into his chest. Avery is definetly showing signs are having a cold or just not feeling right. He has been junkier than usual and plain fussy, especially today. I was sick in bed all day yesterday which is so unlike me. Luckily, I feel fine today.

So on Thurs. we had Avery's first IVIG infusion at home with ended up being a total disaster. He is supposed to have four needles placed in his skin and gets 14cc of fluid between the 4 spots. Well the nurse that came was totally confused by the system and spent about an hr. on the phone with the company on instructions. Well she finally got him hooked up a 3:30p (infusion is supposed to take 2 hrs) She had me do it with her. Honestly, I am NOT a fan AT ALL of sticking my kid once a week. I feel like I put him through so much and to do this wkly, it is heartbreaking. So anyway, I did stick him and we got him hooked up and he is ready to go. The nurse decides to leave at 4:30pm (which she really should have stayed for the entire time). Of course a half an hr. after she leaves, he is supposed to be done and the freaking thing stops infusing.

She ended up calling me to check up and I told her the thing just stopped. So I had to take the needles out of him, redo all of the lines and STICK him AGAIN. Needless to say I was NOT happy b/c by this point the poor kid was exhausted, junky and off to bed. I hook him back up and what do ya know.... The freaking thing does not infuse AGAIN. So by this point it is after 8pm and I decide to bag the freaking thing. So basically my kid only got half the infusion. This totally sucks b/c there is sickness going around the house which means he is totally at risk for getting sick b/c his immunities will be down. As you can see he is already starting. UGH!!!!!

Hopefully when they come this wk to do the infusion, things will go much smoother. I will be demanding that the nurse stay for the entire infusion as well. Here is where some of the needles are. Poor kid

As you can see, Mr. Isaiah is back to his crazy self. I'm sure Avery was not missing the wild man steam rolling him. LOL.. It is just so cute to see these guys together. Definetly, brotherly love at its purest.

All of Isaiah's cultures came back negative and he was finally fever free as of Sunday. He remains with a cough but seems happy so I guess it was just a virus. I REALLY hope Avery can stay clear of it. If he gets even the fever then it will require a 2 day hospital stay to rule out a line infection so lets hope he can avoid it. Avery is getting junkier the past couple of days but who ever knows with him. He is getting his first home IVIG infusion at home on Thurs so hopefully this will help keep his immune system strong enough to fight these viruses. It sure seems to have worked so far as we are going on 7 weeks of being hospital free... Wooohooo

Tonight is Rick's first game of the season and me and Ness are excited to see daddy do his thang. I'm excited to see what the team is like this yr. As crazy is our life gets during basketball season, it is also fun for us to be able to go to the games and see daddy in his element.

I wanted to start off by saying HAPPY BIRTHDAY CHUCK!!!!!!!!!! I had a great time last night and I think I want to record your single. LOL :)


Yesterday was a very long day but I think we accomplished some things. Isaiah is still feverish (going on 6 days now). His throat culture is negative and we are waiting on a urine culture (for which we had to do from home and drop it off at Children's lab) b/c SOME dr. never ordered one. It looked like it had some sediments in it but hopefully he doesn't have a UTI b/c I really don't want him to start getting them. He is such a trooper b/c something is clearly bothering him and yet he is still happy.

We saw Metabolism and Neurology (our mitochondrial team), I have been working with both of them for a long time and really like them. It was funny b/c as I was talking to them, they kept looking at Avery in amazement of how good he is looking these days. Of course Avery was being typical Avery (taking attention away from Isaiah) and totally engaging the drs. with all of his cuteness. No worries though b/c Isaiah kept smacking Avery in the face to show his authority like "hey its my turn" So cute and the drs. got a kick out of it.

So we are getting rid of two meds that are not working for Isaiah and I suggested increasing Isaiah's vitamins CoQ10 and adding baclofen so we are trying those. The neuro also wanted to try Imitrex down the road but it is not indicated for kids and can have some major side effects so that and depakote is on the back burner. But it was good to have the drs. in agreement that something needs to be done b/c it is having a huge affect on Isaiah's quality of life. But in all honestly the neuro. felt like we may never get rid of these migraines b/c is could be brain related :( So we will do an MRI down the road with Isaiah as well.

Avery did not need any changes b/c he is really doing well. We discussed the long term implications of Avery's lack of central line access. We are all in agreement that less is more and taking things as they come. I am not about being aggressive with him and they support any decisions we make with him.


Overall is was a long day but productive. I am hoping Isaiah is feeling soon.

It's been a long week

Isaiah as been fighting a 102 fever since Monday. This is so unlike him and it just makes me nervous. I think I take for granted that he is typically healthy other than his cycles so when he gets sick it makes all of us a bit nervous. Before Avery came along, I spent many of nights in the hospital with Isaiah. I cannot even imagine going inpatient with him at this point b/c he would have to be heavily sedated b/c he is such a wild man. Last yr. he needed IV fluids and the pump never infused b.c he was moving so much. So you can only imagine him inpatient.

Frankly, I am finding the boys pediatricians completely useless. They have two different ones and Isaiah's is afraid to do anything with him and Avery's (well lets just say I am disappointed). I called Isaiah's dr. b/c he was on day 3 of fevers and wincing in pain and it seems to be strep. I looked in his ears and noticed he has fluid in the right ear and told the dr. and he confirmed. He did a rapid strep and it was negative and a 24 hrs which we are still waiting on but nothing else (like a urine culture or bloodwork). You really don't understand what it is like to take Zay out for appts. I am surprised I don't have black eyes. First of all, he HATES going to the drs. and secondly he always poops through everything and completely kicks the crap out of me. He sure doesn't mean it b/c he has alot of involuntary movements but boy do I need a few glasses of wine after a drs. visit. And here we are day 4 and he is still running a fever and he seems to be getting worse. And a nasty nurse with an attitude calling me back and talking to me like I am a two yr. old. So needless to say I am frustrated.

We have a long day of appts. with both boys tomorrow and I am totally dreading it. Isaiah doesn't feel well and it is late in the day and it is sooo much work taking both boys out all day long. Especially when they are not getting any enjoyment out of it. But I really have to go b/c Isaiah needs some work on his medications and so resolve on his retching spells.

Avery went for his first Sub Q IVIG (his immune infusions are now being done under his skin as opposed to using his port to cut down risk of line infections) poor kid has to get four needles that run with fluids for over an hr and half. Surprisingly, he did great with only welts on his legs and no other reactions. The good thing is he can now get these done at home weekly and not have to go to the hospital to do it. I swear I should automatically get a nursing certificate for all the knowledge I have with Avery's procedures. Hopefully this will help him to keep up his immune system and keep us home for much longer stretches of time.

So please say a quick prayer that Mr. Isaiah recovers soon and Mr. Avery doesn't get what he has.

I have not posted much these days b/c things have been pretty quite around here. What a nice change!!! I am in awe how well my little man is doing. He sounds soooo good. Meaning he has not needed O2 for quite sometime and does not sound like a lawn mower on a regular basis. He is such a happy little boy these days. I figured out that he was constipated b/c we were pushing his feeds too much. As soon as we put him back to 10ccs he has been so happy, sleeping much better and pooping like normal (gotta love how much poop talk there is around here :) You HAVE figured out who I am talking about right? Mr. Avery, you know the one who commands ALL of the attention around here : ) And look at what grammy got him the cutest lazy boy chair.

Then there is my other handsome guy that has been on my mind alot. My unsung hero. He just cannot catch a break with his cycles. Poor kid was sick all weekend again with his retching. I am getting so worried about him b/c it just seems to be getting worse. I just worry that his GI system is getting worse and if that happens then we are completly screwed. Isaiah is such a wild man and could not have any other attachments b/c he would of course rip them out. I worries me b/c he is now having cycles every other week that last at least 3-5 days. Honestly, when Isaiah is not in a cycle, he is the most craziest, happiest, little stinker ever with that million dollar smile. So it is soooo hard to see him when he is not well. We saw an endocrine dr. last friday and she ran a bunch of blood work on him b/c she is worried about his adrenal glands. One of his levels were pretty high last yr. and she wanted to rerun them as well as a bunch of other stuff. And now this friday we have dual appts. with metabolism and neurology (our mito drs.) and my only goal is Isaiah. Enough is enough. Time to go through his whole medication list and get rid of the things that are not working and start fresh. I get so frustrated b/c I feel that b/c he is not in the hospital anymore that nobody has an investment in really trying to help him. If they could only feel like he does for one day,then I am sure that things would be different. I just wish he could be this happy all the time.


The focus is always on Avery b/c he is the one who is always inpatient and has a chart that is a million pages. When poor Isaiah was the originator of this disease and now he gets the shaft... Well that will happen no longer. Cause momma is gonna put on her bulldog mask and take care of business. I just want my guys to feel good as much as they can b/c that is all they have in life.


I swear when I start typing I never know where it is going to take me and I am sure I am all over the map but my heart leads the fingers :) I was actually going to do a whole different post. But I guess my heart had other ideas today. So stay tuned for the next rant.......

Well its Official!!!!!

We have set a new record........Mr. Avery has bypassed the month of November without being in the hospital. I cannot even tell you the last time he went a month without being inpatient. He did well this summer but messed it up because he was in overnight in July 31/Aug 1st. I honestly think it has been more than a yr or so that he has missed a month in the hospital. So it is something to celebrate for sure :)

He has still been having some issues with constipation which completely baffles me but then again alot baffles me with him. We have made a decision regarding his feeds. He is back to 10cc per/hr. on his j feeds. He has NOT been sleeping at night at all with the 15cc and is just completely miserable. So it is really not worth it. And frankly it if he is struggling at 15cc then there is no way he will get to 30cc which is what he needs to drop a couple of more days of TPN. So in theory it sounds good that we will push his feeds but it is at his cost. Then with a kid with such bad motility and pushing feeds, you risk the chances of his gut spilling infection into his bloodstream which would cause a line infection. So I certainly do not want to risk that. So for now we will just sit at 10cc and let him be happy there and pray that he does not get a line infection.

Onto me: I had my mammogram and ultrasound which ultimately turned out fine. I have dense breasts and they did find clusters of cysts but nothing worrisome. I was pretty confident that things would be fine. I really could not imagine me having breast cancer all while taking care of two boys in wheelchairs and Janessa. Naaaw, my luck is not THAT bad.

We are just gonna continue to ride the good health train for as long as we can because I am sure it is just a matter of time before it has to make a stop.