Thursday, February 26, 2009

TJ is HOME!!!!!!!!!!!!!!!

TJ is home, and he's doing well. I'm not going on a whole lot of sleep but what I got was good sleep so I feel pretty rested.
I had to learn how to care for a picc line and was taught in an emergency how to put a new dressing. I had to be taught to clean the port for 30 sec. with an alcahol wipe.
flush w/saline (prefilled syring)
give his first antibiotic,
Flush again,
2nd antibiotics,
Flush again and flush with 2 ml's of heparin (from a 5 ml prefilled syringe)
He's also on some protein poweder and an Oil also.... And they gave me apump to use with his Gtube so we are using it at night, (he has an apnea alarm on, it'll ring if he were to throw up)
and it's already preset.
the REAL hard thing was remembering the A) apnea monitor, and B) how to do the picc meds correctly using protocol.
it turns out that IEHP doesn't pay for dressings for his chest but his nurse (FINALLY One who liked me) ordered a whole lot of gauze and Coban. They gave me a TON of supplies. Give me a bit to find my camera, since it got lost in the madness yesterday!
and I'll post the pics of his last days in the hospital and now here at home! lol Thanks alot for all the prayers!

The journey isn't over tho... it's only begun because he's not out of the woods yet AND he's not grown up!~

Friday, February 20, 2009

Praise REPORT!!!!! TJ's Coming HOME.

This is TJ on 2/19 playing with his feet. He had been trying to reach them all day and had also been rubbing his feet together and pulling them up... so his daddy helped him and he finally grabbed on.... see the look of determination?
Guess WHAT?!?!

After 3+ long months in the cardiac ICU, many tears and heartache.....

TJ comes home MONDAY 2/23! lol. It's 4am here and I woke up and can't sleep because I'm so excited. They have even given him the go ahead to go on our trip to OK/Arkansas. He's gonna be on some medicine pumps for his picc line (Antibiotics) until the 26th and we may be going back to an NG tube because his Gtube is getting infected looking. ( TMI: to me it looks like my belly button piercing did when it rejected the belly ring with a bit of dying tissue)

So they're getting Dr. Golkar (his Dermatologist who has experience with our skin problem) in ASAP to decide if it stays or goes. and they are gonna teach me/hubby/ and my mom how to do the dressing change on his Picc line and wound, etc. They have already begun the discharge process and barring any unforseen complications they are sending him home on MONDAY lol.I wanted to update my blog (can't find my camera to upload my pics... darn it. and thanks so much for all the prayers and well wishes.


Wednesday, February 11, 2009

BIG UPDATE: 2/11/2009 GTUBE!

So TJ's doctor at the hospital called me this morning regarding the Gtube.
She said they DID get his pediatric dermatologist in there to evaluate his risk for infection, and the derm. said that with her experience with the skin condition, that she thinks a Gtube would be alright.She said that it will allow him to get more nutrients, and to grow more efficiently, and that we'll just have to monitor it REALLY closely for any infection.So when they told me that she'd come in and consented also I went ahead and gave consent. They promised me that they'd keep a super close eye on him for infection.
Also, the woman from CPS called me and told me that Next week after the holiday she's speaking to her supervisor to tell her that she reccomends they shut down his case.She said that after her evaluation she sees NO signs of neglect in any way, so she doesn't see any problems.
Turns out also that she didn't know the social worker from the hospital who originally reported us has been asking everyone I know so many personal questions about me and my family. Including about our finances (not even general questions, actual really personal questions about what exactly OUR money goes on. They aren't even questions regarding TJ's care, expenses...e tc)
She advised me to just make sure I don't have any more clashes with the staff and to "keep my nose clean"
She told me that to her, the social worker from the hospital has it out for me, and is just TRYING To find something on me so she can report it. And that's it. She thinks that everything is fine and that they will be closing the case soon as long as they can get the dr.'s records from the hospital.
So all is fine, and she thinks it's great that TJ will most likely be going with us on vacation to meet his grandpa and his great grandparents.
I am pretty happy that things have turned out ok. and as long as TJ's Gtube area heals well he'll still be coming home on the 17th or 18th when his antibiotics are finished.

I'll add more when I get pics of TJ and his new Gtube tomorrow. :)

Monday, February 9, 2009

TJ update 2/09/2009~ Update on TJ coming home!

Ok, This is pretty long, I’m covering a lot, sorry.

So here’s the deal, if TJ weren’t still on antibiotics Via PICC line and being considered for a Gtube, then he’d be home in a day or two.
He’s got until the 17th for his antibiotics to be finished with, and he’s on Vanco given via PICC line. Normally they’d send him home with a picc line, however they haven’t been using the typical dressing so his line isn’t held in by much more than a piece of gauze and some coban.

I personally don’t feel comfortable bringing him home with it because A) it’s not dressed so that it’s watertight, and B) what would I do if the dressing came off or the Picc line came out one night?

So, I’m going to ask that they keep him until the 17th (or 18th.. Depending on if it’s day or night he’s done with the antibiotics) I’m also asking them to consider closing up his chest since it hasn’t healed really over the last 2 weeks. There isn’t any active infection any longer.

Tyler is currently about 4.5 kilos and was very VERY Grumpy today. They are still weaning him on his pain meds so I’m sure that’s why. His nurse did ask the doctors this morning to suspend his weaning for the day due to him being so agitated. Luckily he’s had NO problems with Temps or Desats the last few days.

Here is what’s happened with him today:
I had a consult with his doctors and the Respiratory Therapists.
TJ gets Pulmacord (spelling?) 2x a day just to open up his lungs and reduce any inflammation. I know some of you have voiced that you are worried about me considering bringing him along on our family vacation to Ark/Ok.

And I asked the doctors about it (as was the plan) .

According to the RT, as long as we are fully prepared with his meds, and his other doctors clear him, AND we are prepared for a cold if he gets one, she has cleared him to fly to Ark. With us.
She thinks that because he’s had his RSV shot and is current with vaccinations that he should be just fine. The main doctor on his Primary team has told me that once TJ gets the all clear from Cardiology, and if he gets the Gtube~ Gastroenterology, and his pediatrician that he’ll be ok to go, especially since it‘s only 8 days (7nights).

He said that when they release TJ he’ll be healthy and fine (he’s healthy now, just isn’t eating on his own yet) That TJ should be ok to go on the trip. He said they wouldn’t be releasing him if he weren’t healthy enough to be around other people or outside.
We will have him home for at least 2 weeks anyway before the trip, so we can get him re acclimated to being home before we go. AND if the pediatrician isn’t comfortable with him going, then we’ll have his grandma watch him.

I spoke also to the primary doctor about the G-Tube, and here’s what we decided until I speak with gastroenterology~:
He’s had the NG tube for 6 months off and on. I made it clear that my concern for infection with a Gtube Is MUCH more than with a simple NG tube. Because we know what to expect from an NG tube. We can easily handle a sinus infection or something like that should he even get one. I use sterile supplies when placing his tube, and sterilize the tube itself if I need to Re-place it.

1) They will get a consult from TJ’s Pediatric Dermatologist to get the all clear on a Gtube.
2) They’ll speak to speech to get the OK to train me to begin bottle feeding TJ so that I can work with him on a regular basis.
3) They will consider leaving in the NG tube and having follow up appointments at 1 or two months post discharge so that I’ll have a chance to get him nippling all his feeds by mouth.

If he’s not nippling it all by then, then they will go ahead with a Gtube.

I also left a small page of questions for each, “Dermatology, Cardiology, Gastroenterology, and Endo.” As well as a page of notes and contact information for TJ’s case manager through Regional Center, and Contact information for the people we know with the F.I.R.S.T. foundation (for ppl with Ichthyosis).
And when speaking to his Primary doctor I got a list of his medications, along with the meds they think he’ll continue after discharge.

Now I can make my medication schedule (yay!) and get our “system” set up so that the lady with CPS can see it when she comes by Wednesday.

I waited for 4 hrs to speak with speech, as well as the GI doctors. But they couldn’t make it which I understand. Hopefully the nurse will be able to get answers to my questions.

So everything has been discussed, and of course, we will be speaking to his doctors after he gets discharged before we book it, and if they say no then he won’t go. I’m not going to go against doctors orders, and I really don’t want to end up with TJ having an infection or ending up really sick. (a cold isn’t REALLY sick, kids always get colds……)

But if they continue to clear it before I schedule it, then we’re going to all go as a family, and I’ll just plan for any emergency as best as possible and get a doctor lined up in Ft. Smith or even Ok. City (great hospital there)

So be sure, I’m not asking what people think about us taking TJ along.
I’m simply letting you know that I’m doing all possible to make sure he’s healthy before during and after the trip. As well as updating all of you on how he’s doing health wise.


Sunday, February 8, 2009

TJ's Coming home next week!!! I NEED Flying/Traveling Tips!

Ok, so according to everyone (including CPS) TJ is all set to come home next week! it's great!!

However, other than that, if the doctors give us the go ahead to travel to Oklahoma in March (11th-18th) then we will.

I'll be speaking with his doctor on Monday about it. they also want to place a Gtube but I'm saying no until they can get a consult with his dermatologist simply because he's ALREADY so immunocompromised that he can't just go, get one and go home... our luck he'd get another bad infection requiring CPS to be called AGAIN and for him to go back to the hospital for another 2 months.

Anywayse, he's learning to suck from a bottle with speech when they do therapy. (he WANTS to suck now when he gets hungry. he starts sucking on his lips/hands/my hand...etc, and he'll lick his lips til he gets his feeding thru NGtube)

So, as for the Gtube til they get a consult I'm NOT signing the paperwork... and he's been on an NGtube for a while... I know how to easily handle that. I've been trained (as have my hubby and mom) to place it and check placement and feed and give meds thru it. They trained me before he was released from NICU 5mo. ago.


So far, i've got plans for meds, an emergency doctor if need be. but other than that I'm stumped!

I'm going to call americanairlines about setting up some travel arrangements, and ask some questions... but I need tips from you moms!

What should I pack for emergencies? (other than extra meds)

How much formula should I bring (not mixed...)
What about diapers/wipes?

Extra bibs?



What kind of stroller can I travel with? My own that is Grayco? (it's the fold down type, you twist the handle, push a button and it folds down)

Can I bring my carseat that goes with the stroller?

(I know it has to be FAA approved)

Anything would be helpful!!!


Thursday, February 5, 2009

Support! The hospital called CPS on me for personality conflicts with staff and other stuff...

Ok ladies, I need advice BIG TIME. You may know my whole story if you've followed my blog/pics... etc. See, according to the social worker at the hospital, I've acted suspiciously from side effects of a medication on a time or two while being at the hospital (due to back pain and pain management, they are trying to find something tha'll work before they start shots or something in my back.)I NEVER held or helped with TJ during any time I had any side effects. and according to my dr. I had to take the med at a certain time each day. I've been working to find other meds that work without any side effects and that are safe to take and work in small doses...(so I could get off quickly if need be due to any reason.) Well, the social worker from the hospital has asked for my medical records, and pharmacy records which I got copies of , and signed releases, no problems. I've not done anything bad. But due to personality clashes with a charge nurse and a couple nurses who wouldn't have me help with wound changing (even tho, apparently they are sending him home next week.... IF the do.) *they actually leave me in the room alone with the nurse watching the OTHER baby in the room with him, while sitting outside.... doing NOTHING to help me out or even offering support.
or other stuff, it's caused alot of issues (I've kept my cool and tried to either reason with them or accept what they tell me)they'd told me he'd go home in MARCH or late Feb. it was lies. CPS came by today, with a nurse, and GRILLED me infront of my mom regarding his skin care (for EHK) and his cares for him having down syndrome. welI (Gmom and me) explained everything, and even showed them his medicine preparations (color coded with 2 days worth. a normal day and emergency, with color coded baggies, instructions on time, doseage already prepared... etc.) so anyone could give him a med if I had an emergency and couldn't be home.
The nurse was HAPPY with me and said we've done a D*MN good job at keeping him healthy when he was home. But the social worker even asked me for a friggin drug test where I had to go to a place where addicts from the court systems usually go (not the kind work sends you to) and get WATCHED while I took the pee test! (I have NO issues with former addicts at all.... i'm happy if you've straightened out and I'd be happy to share stories and talk for support as my step dad died of an overdose about a year ago this march....They dont know of that.)
I did it happily, and we got a crib today (instead of a bassinet even tho he's only 10 lbs at nearly 6 months) set it up, and cleaned house. They come out next week and just told me if our house was clean, and his room was clean, and we were prepared for him to come home....we'd be good.
IDK, they make me feel like a bad mom. They consider me either uneducated or unexperienced even at this point in his life where he's been home for 9 weeks total, and we've cared for him for his first 3 months of life DAILY, and nightly.I'ts 4:30am and I can't sleep from the stress. AF is late due to it also (bloated....but day 31...test BFN which is fine at this point)
His nurse, and teacher from the Reginal center (sp?) are behind us because they have observed us in our home on a couple occasions...
They hadn't told me test results, or anything but told CPS he's coming home next week (I've called and asked 2x while cleaning up the house) all while it's cold and the arthritis in my back is HURTING bad. Icy hot, heat pads, ibuprofen, tylenol... the works to treat it. But nothing to really alter me mentally at all.
I want advice. my mom went thru this with me as a baby (similar reasons..young, special needs kid... etc.)and my grandmother was gone after also for me mom (same stuff as MY MOM).
They got me so upset I just cried for about 10 min. in front of them as I told them how we cared for him in the NICU for over a month and the nurses didn't even do anything because carlos and I did EVERYTHING but paperwork.
I'm crying now thinking of it. I need support and advice.........(or just kind words)...