And the madness begins!!!!

Today is the first day of basketball season which means I am flying solo and boy do I already feel it. Avery is just miserable because he is consipated (has never been a day in his life so no idea what's going on). I can't get Isaiah to stop pooping and Janessa is trying to burn up the house by using the microwave this morning but if she didnt't do then I am sure I would have as I found that I still had a candle burning for last night. Eek.

This week is just going to be busy for all of us full with tests, work, basketball and poop of course. LOL

Other than that I have no complaints about the boys, Avery is doing awesome. He has come a long way from last yr. He has added 8 pounds and has so much personality and is such a chatter box like his momma :) We have not gone beyond 15 cc on his feeds and frankly I doubt we will because he is just struggling with it. So as long as his liver looks great, we just keeping plugging away and pray for no line infections. I am not sure if I posted before but we will be able to start giving Avery his IVIG infusions at home. He is just not maintaining the levels to keep up his immune system so he will get it weekly in hopes of keeping up his levels.

Happy Thanksgiving!!!!

ALL IS WELL HERE!!!! Avery held out for us and is doing well and so is Isaiah who is just recovering from a retching cycle. I am sooooo thankful for so many things in my life.

First of all I am thankful to be able to spend the holiday at home with my family and not in a hospital as so many do. My thoughts and prayers to all those families. I would like to pray for all those families that have lost a love one during this holiday season. God Bless to all.

I have no complaints here at ALL and am just grateful for everyday I have with my beautiful family.


I hope everyone has a great, safe Thankgiving.

Family Update

We will start with Avery as he always seems to be the topic at hand. LOL. He is still struggling with feeds but we have decided to keep him at 15cc p/h and shut him off as needed. I just had to start the process all over again. He is having more output out of his g-tube (stomach that we drain) so we have to keep watch for hydration. And he is back to vomiting with meds again. These are all signs that his gut is not tolerating much but we will continue to plug away slowly at it.

Isaiah, we he started a cycle today which is nothing new. But we were having some issues with his school not doing what they should be doing for him. You all know Rick and I are like bulldogs when it comes to our kids. Like Rick says "they will get everything they are entitled to if we can help it" One of the biggest issues with his dynovox (communication device) which our insurance company paid ALOT of money for and is his sole way of communicating has NOT been used as often as it should be. So Rick attended a meeting with the school on frid and I am confident that ALL issues will be worked out.

Janessa is such a good kid. Got all straight As and the teacher said she is such a respectful and helpful good kid. YAY!!! So proud of her.

Rick, we basketball season starts next week and he is pretty excited. Life will be plenty busy then for us all.

Me, well I went for a complete physical and was a bit shocked to learned that I had to have a few tests scheduled for myself. I like to think I am a pretty healthy person and I am but... I have a pretty big murmur so a ECHO was scheduled for me and the dr. also found a lump on my breast and I am pretty confident and so is she that it is a cyst. But she scheduled me for an ultrasound and a mammogram. I am sure it all will be fine but of course it gets you thinking. I sure better get these done before Obama decides to make it a law that you cannot get a mammo until age 50. LOl

So the usual craziness around here but nothing too worrisome.

Today was the services for my friend's daughter, Just heartbreaking all around. My heart just breaks for the family as they grieve the loss of their beautiful daughter. It is so surreal because I know Rick and I will be there and I try to picture it but just can't. It's not fair to have these babies and know that you WILL bury them way before their time. Yet it is the reality of our situation for all three of us and many more families.

I cannot tell you how much I appreciate my beautiful family and cherish everyday I have with them all.

We decided not to take Janessa with us as we thought it would be too difficult. Now I am kicking myself b/c I think it would have helped her to understand the process and see her friends as only the three of them knows how the other feels. I was also able to connect with some old missed friends. Much love to you guys.

On our family front, Mr. Avery has been really struggling with what I think is his feeds and GI pain. Over the last few weeks we have increased his j feeds from 10cc to 15cc per/hr. (this is a whopping 1/2 ounce an hr, barely nothing) and yet it is too hard on his gut. So frustrating b/c I want nothing more than to get him off TPN and yet the reality is that his body won't let it happen. I just keep thinking "how did we get here?" Just a yr. ago he was at 30cc per/hr and no TPN and now he is 6days of 14hr TPN one day of IV fluids and struggling at 15cc. It seems hopeless. Yet I refuse to do anything invasive on him to get him off TPN. His liver looks great and I guess we will have to take it one day at a time and pray for no line infections. The only acute problem is that he is so stressed with pain that he cries and gets all worked up that he becomes so junky then requires tons of suctioning and tires and then needs O2. A vicious cycle. I feel like he is back where he was 6 months ago pain wise (crying with tears running down his face :( So I don't know what to do, do I drop down 2cc and stay there for wks and start the process all over again or just stay at 10cc and let him be happy and just take whatever comes with that. Hmmmmm tough one huh!!!

With all this I am still grateful to be home as a family and hope Avery decides to bypass the 4wk mark & starts to break our hospital record. Would be real nice :) I am just nervous that I will have to spend Thanksgiving in the hospital. It has not happened yet and I would like to keep it that way. My prayer to all the families that have to spend the holidays in the hospital.

Grateful......

Is what I think when I see this picture :)

Yesterday was a day that I "thought" might come but still was blown away when it came. There are two other women that I share a bond like no other. I met these beautiful strong women when Isaiah was only 7 months old at an early intervention playgroup. The bond we share is that between the three of us we have 6 special needs kids (all wheelchair bound with other significant issues) and we all share a healthy daughters the same age. Which I am so grateful for b/c they had someone that got their situation. Just a unique bond that really helped me and my family through some tough times and also celebrated some great times.

Well one of the friends called yesterday with the sad news that her duaghter had earned her wings. I am so sadden and heartbroken for the family. Although I dont see these women anymore as we have gone our separate ways, they and their families are never far from my thoughts and in my heart.

This is something that also hits so close to home b.c frankly Avery appeared the sickest out of the crew and I sort of thought he would be the first to leave us. Ironically, when Janessa heard the news she was sad and also asked if Avery will be next b/c she thought he was sicker. So sad. This little girl was only a month younger than Isaiah so it also brings the reality that even that he is seemingly healthy, it could happen to him too.

I just ask that you all pray for the family that they find healing and comfort for their broken hearts. We will miss you sweetheart.

So we finally got the H1N1 vax for the boys :) My ped had called on tues saying he could give it to all the kids. I was pretty excited. Then he called on Wed. evening saying that he had a VERY limited supply and could only give it to the boys. So unfortunatatly Janessa was not able to get it. Turns out they ordered over 400k (huge practice) and only got 130 shots and no live nasal sprays. How awful, so needless to say I totally understood and was grateful to even get it for the boys.

Avery just loves to keep us on our toes and has been fine since Wed. morning. I am thinking he may have been a bit dry and coincidently got a full bag of fluids that night which may have been done his body good because he has not had a fever since :)
I swear I am always paranoid he has the swine flu or something and we will end up inpatient again, LOL. I am not even totally at ease that he has had the vax b/c my friends kids all got the vax and still came down with the swine flu 2 wks later. Go figure. So it is not full proof folks.

Things are going to start getting crazy around here as basketball season starts in a couple of weeks. I am actually excited as I love going to the games but it makes juggling the hospital a bit more crazy. so hopefully we can avoid the place as much as possible this winter.

BTW I have video of Isaiah (my big boy :) ) walking with his therapist. Now if I can just figure out how to load it??????

Well Folks, it tues Night

And Avery has a fever!!!!! What do ya know. I have no idea what it is with Tues but he sure is consistent. The thing is, is he sounds very clear in the lungs. So really I have no idea what is up. Could certainly be a virus but with having a central line there is always a concern of an infection. Which I would truely be destraught over. So at this point I am hoping that it is a fluke thing and he will be totally fine in the am and we are back to our somewhat normal life. Ha ha

BTW, we finally got the call for the H1N1 vax for all three kids on thurs. Hmmm the timely could totally sucks.

A Very Pleasant Surprise

Number one: Its not a Tues. night. We know for some odd reason Avery prefers Tues. night admissions. LOL

Number two: Avery likes to wait at least 4 wks. in between admission.

He struggled last night on 4 liters of O2. And today he looks fabulous. Gotta love this kid. So we are able to go home and try some new nebs. and hopefully avoid an admission any time soon.

Thanks all.

Hanging on By a Thread

Literally....

Avery did not have a good day at all respiratory wise. He spent most of the day getting suctioned and was very anxious over. So by the time bedtime comes he is totally crashing which means he has lost most of his tone and ability to move air well. I have tried bipap the last two night and he is desatting over it. The settings are preprogrammed so he is needing more than the machine can give him right now. So he is on the 4 liters of oxygen which is high for him and the concentrator does not go beyond 5 liters. So these are definetly not good signs.

Tomorrow could go either way. I am seeing the pulm. dr. in the morning and he will either send me to the ER to be admitted or hopefully start IV abx and do a sputom culture. Somehow I think the first scenerio is likely, thus why my bags are already packed. I am suspecting that he is developing pseudomonas in his lungs as typical for him. But we really need to come up with a plan b/c this is only 2wk after ending his last IV antibiotics which would cover him for this and only 1 wk after ending his medicated nebulizer which is every other month. It totally sucks as we will only have been out of the hospital for 2 wks.

So I will let you know what happens. Im so hoping he can go home b/c his chances of getting sick with something else is likely when he is going inpatient.

Still frustrated!!!!

And tired. This will do for now. Just a side note, Mr. Avery has been struggling respiratory wise today all day and is requiring alot of O2 right now. So please say a little prayer that he can hold off until we see the pulm. dr. on Monday morning.

Bear with Me

I m trying to change to look of the blog. UGH what a pain as I have no idea what I am doing!!!!

I have missed a couple of posts so this one may be long.

On Wed. I took the boys to see a CCS dr. (Complex Care Services) they are basically a primary care team for the hospital. The purpose is to help coordinate the care for complex kids like mine. Thing is they have not been doing much coordinating for us these days. I got a bit fed up so I switched to a different dr. hoping to get some more carry-over. I always dread appts. with both boys as it is sooo much work and just a long intensive day for all, especially them. Mr. Isaiah especially hates going to any appts and will immediately start yawning and "fake retching". He is too smart, huh...

As soon as I got there the nurse informed me that Avery also had another appt. right after but he will be late b/c this appt. is going to be about 2 hrs. UGH. But since we are already there might as well get it out of the way, right...

I really did like this dr. she was very attentive and interested in helping the boys. We started with Avery which ends up taking up 3/4 of the appt. b/c his history is so extensive. It is amazing when you have to give a history of how much this boy has been through and how far he has come. But my focus with him was better coordination after his hospital visits. What happens typically is that b/c Avery is on bipap he goes up to a special (step down ICU)which I really like them and they know him so well. That is not the issue. It is when we leave there, we have nobody to call for concerns or questions. CCS has a specific floor in the hospital and in inpatient/outpatient team but they SHOULD be following Avery since he is one of their pts. So I really stressed this to the dr. b/c it really is useless for him to be part in the service if they dont follow or know him. She agreed that this will be something she will try to coordinate (we will see).

Isaiah was more my issue. I have so much guilt of his issues that tend to take a backseat to Avery's frequent and chronic acute issues. He really has nobody invested in trying to help him with these migranes. They are getting worse and it needs to be taken seriously as it has a huge affect on his quality of life. So we will also see with this part.

Back to Avery. His second appt. was regarding his TPN. So it is no big secret that I am trying to get him off TPN b/c it is just not good long term for his body. It can cause serious liver damage amongst adding to his anemia issues and a slew of other things. While it has been great for him to get him back to a good nutritional point it also has huge risks in terms of additional central line infections which a major problem right now with his limited access. So my first question to the dr. was "How can I get Avery off TPN" He was thrilled that I was open and being aggressive about this b/c they dont want to see any kid on it long term unless necessary.

He then said, "easy all you have to do it get him formula intake (through his j tube) up to at least 500cc a day"

To which I said "easier said then done" but we will try.

So the plan is to increase Avery's feeds to 3cc every three week until we get to at least 30cc per hr. Now it sounds nice and easy and would be great if we can pull it off but only Avery's body will be the judge of that. But on a postive note we were able to take him off TPN for one night a week. Woooohoooo. Because Avery had such a big weight jump this yr. from the TPN he is okay to come off for one day. Realistically he may only get off TPN a few nights but that is progress and I will take it.

Something is definetly going on with Avery as he is quite miserable these days and only happy unless you are in his face 24/7. He is still junkier than normal so not sure if it is anxiety from pain or what it is but he is seeing the pulmonologist on Monday so if it is respiratory related, hopefully we can nip it in the bud and avoid the hospital.

Still no H1N1 vax for the boys. Not even going there.

Rick and I were able to get away last night for a free night at the casino. We had a blast and it didn't hurt that we broke even money wise.

Hopefully you made it through the whole post. Thanks for reading and checking up on us.

Wow, its been awhile!!!!

You know that means things have been relatively quiet around here...........

Mr. Isaiah just got back to himself after a long week of retching and just feeling yucky. He was not feverish or anything so I assume it is his regular cycles that are just getting worse these days. Poor kid.

Avery has been happy as a clam these days. Only thing is he is already getting respiratory. UGH!!! He has been needing O2 the last 5 nights and frequent suctioning which we all know what that means. He even started to sneeze today.

I am still frustrated as the kids especially Avery has not gotten the H1N1 vaccine. I am pretty convinced that by the time my kid gets it he will already have the flu. There are more and more cases of it closer to us. I totally get that there is a shortage and still a number of pediatrician's offices still have not gotten it, namely ours, but it ticks me off that they dont have Avery and Isaiah on a priority list. Instead I am supposed to call every day to see if they are in and god forbid I forget to call one day and missed the opportunity to get it b/c they have run out. KWIM!!!! I am glad prisoners at Gautanomo Bay have already gotten their though (WTF-pardon my french) just a hot topic with me.

Anyway we will see how things go with Avery over the next week as today and is not so happy. We have alot of up &coming appts. so I will try to update as things come up.

Here are some pictures of Avery in his new chair. So hard to get good pictures of him. Doesn't he look so chubba though?