Lilypie 2nd Birthday Ticker
Lilypie 2nd Birthday Ticker

Thursday, September 27, 2007

Increase o2

So as of today Bryce is now 8lbs. 13oz. We went to his pulmonologist Tuesday and he decided that due to Bryce now having pulmonary hypertension and having the ALTE we needed to increase his oxygen instead of giving him time off every day. Bryce is now on 300 cc's 24/7. And instead of being monitored only at night he needs to be on the pulse ox all day as well to watch his sats carefully. They want to be sure he doesn't go under 95%. His nurse came today and said he is wheezing again... Who wants to bet we end up in the hospital this weekend. Hopefully not, but we'll see. Although Steve and I are still married we have decided that it is only fair for us to split the kids on the weekends like a divorced couple would do since I am in much need of a break, so this weekend is my weekend off! What am I going to do????? The sad part is I probably won't do anything! I will probably stay home with the kids. BUT I won't have to do the dirty work I will just get to play and Steve will do all the crappy stuff! I wonder how long this arrangement will last..Hmmmmmm.... Anyway we also saw Bryce's GI doc, we figured out the Bryce is allergic to Reglan so we will not be taking that anymore, so for now he is on 15mg of Prevacid, hopefully this will help with the GERD, it seems the GERD plays a HUGE part in him having the ALTE's. For now thats about it. Pics coming soon. I am trying to get one of him smiling so everyone can see just how precious he is!

Thursday, September 20, 2007

ALSA, ALTE, PICU GERD, BPD

A.L.S.A=Advanced Life Support Ambulance - what had to pick us up Sunday
A.L.T.E= Acute Life Threatening Episode - which is what our primary diagnosis was.
P.I.C.U= Pediatric Intensive Care Unit - Where we were admitted this weekend.
G.E.R.D= Basically reflux
B.P.D= Broncho Pulmanry Dispaysia - Lung disease that we were diagnosed with.

OK enough with the definitions basically this is what happened......
Sunday sitting home giving Bryce his neb (from previous admission) all of a sudden he goes into a complete back bend in my lap, starts foaming from his mouth, white chunky stuff pours out of his nose, he stops breathing! Call 911, they get here he is finally breathing but not crying and very, very pale.. they decide he need ALSA, so they call in ALS EMt's from Oxford and they bring the biggest most high tech ambulance I think I have ever seen! Next thing I know we are flying down Rte 20, I am being asked so many questions while the EMT's are working on Bryce.... Scariest thing I have been through... we get to UMass brought right into a room, where the begin working on him, checking Sats (which were pretty much in the crapper) trying to take blood, start an IV, Insert a catheter, Chest Xray the whole 9 yards... while in the process of all this my poor little guy turns the darkest blue I have ever seen in my life... not just his face but his ENTIRE body! Can we say PANIC! Even the ER people looked nervous..... So needless to say we are getting admitted again, but this time they want him in ICU, not just the regular floor. We go to ICU and get comfy by this point Bryce was better but now we need to figure out what the hell just happened....By this time it about 11pm, so they just let us try to get some rest and deal with everything tomorrow. Monday we see about a million docs... GI, Pulmonology, Pedi, everyone... They come to the conclusion that Bryce has sever reflux and that must be what caused all of this. We get discharged from ICU and put on a regular floor to be watched, they changed Bryce to NEOkate formula, start his back on nebs every 4 hours, prednisone, Prevacid, Reglan and IV fluids. During the night about 1 am Bryces heart rate is ringing off like crazy he was Tachy at 237... NOT GOOD. The nurses come in Bryce now has a temp of 101.2 where did this come from??? Who knows... SO they take more blood, another chest Xray and belly Xray everything looks OK, of course with the exception of his scarred lungs which he has had all along anyway. They also did an Echo... The echo shows that Bryce has allot of pressure in the right side of his heart and also he has 2-3 ASD, (defects in his heart) mostly all caused from his BPD. So long story short we finally get discharged yesterday, pulmonology sends us home on an inhaler 2 times a day, nebs and prednisone. GI sends us home on Reglan and prevacid and with strict instructions to watch him carefully..... So after 4 days of NO sleep we are home and he seems to be back to himself. He hates his meds so that is a huge battle ad he really hates his inhaler but we'll get through this. So please pray for him that he stays healthy especially now that it is getting to be RSV season. We definitely won't be going anywhere except doc appts. and visitors here will be limited.. I am going to get to know the inside of my house very well! But thats OK as long as he is healthy. On the bright side he is finally smiling at us when we talk to him so that makes me feel really good!

Friday, September 14, 2007

Admitted into the hospital!

Just when you think you are doing all the right things (think is the key word) You end up in the hospital...POssibly because you made a bad decision (bad decision was taking Bryce out even though I sort of know I shouldn't but I needed a break from the house I am going crazy!)....
Well this past weekend Bryce was admitted into the hospital. Starting last week he had a bit of a stuffy nose I didn't think too much of it but I brought him to Pedi anyway... No big deal she said just watch it... So I do.... 4 Days go by and all of a sudden I start hearing what sounds to be a whistling when he breaths.... Hmmm last time I checked that wasn't a "preemie thing" (because thats the answer I always get) SO I watched it again the rest if the day into the next.. Well it wasn't a whistle it was a wheez! Low and behold he is having trouble breathing! I called Pedi they said get him to ER, maybe even call an ambulance (didn't need to take it to that extreme) So just to be safe and by a little advice from a friend I called his pulmonologist as well..... They said if I had a nebulizer I wouldn't have had to go to the ER but because I didn't have one I needed to get him there... So I did. They did all the crappy tests they do and determined it was RDS..... (Basically a chest cold) but that he needed to stay for nebs and observation. Fine with me better safe than sorry. So this was all taking place around 6pm about 7pm Bryce falls asleep, you know the kids that never sleeps.. And don't you know he slept for 8 hours straight with out even flinching, I almost thought something was wrong... Of course though we didn't actually get admitted until 3 am so I naturally I couldn't sleep.... I think he thought he was home when he was in the hospital.. I couldn't believe it! Anyway they did discharge us the next day with a neb and steroids... Well thanks to the steroids my tiny baby is now a HUGE 7lbs. 13oz! HE IS SO FAT! I could eat him! Of course now being on the steroids he is sleeping worse than ever..... I was so desperate for sleep this week that I called my insurance company and BEGGED crying for some kind of help ie., nurse or something, ANYTHING!!!!!! And even though he is on o2 he is not considered "needy" enough! At this point I'm ready to give a homeless person a place to live if they will stay up with the baby! Hell my bed is big enough, I'd even give that up! Sleep is something you can't survive with out........ But some how I am,. OK enough of my complaining... Last but not least we had our barium swallow, upper GI today.... I am a bit nervous though because they called the doc in a few times... Notsure what if anything that means but I will find out next week.
Let me tell you though, Stephanie you'd appreciate this (poopy talk)..... He is pooping WHITE!!!! from the barium, its sooooo weird looking. Not quite as weird as what you found in Beanies food, but weird!

Wednesday, September 5, 2007

Update and New PIctures

Since the last update a few things have changed. Bryce is on O2 24 hours a day now at 200 cc's. We went to the Pulmonologist on the 24th and he decided that Bryce needed oxygen 24/7. He took some blood and a chest Xray, the blood was fine, the Xray was OK has scarring from the vent typical of a 24 weeker. We go back on the 25th of Sept and may be able to come down on the cc's we'll see. He sats between 85-93 which isn't horrible but for a baby that is on O2 it should be better. He does get to 100 but hangs lower 90's. Anyway he is now 7lbs. 4oz. 20.25 inches. He has been gaining weight much better since being on O2, which is good. Also we had a follow up ultrasound for his kidney issue, they confirmed kidney stones, left kidney dilated with fluid etc... Just going to continue to follow I guess. We see Urology in October.
Two days ago he got his first cold. Well I think its a cold, he's really stuffy and I have to suction him 8-10 times a day, he hates it. Pedi said to watch it and see what happens. Knock on wood so far so good, no fever or anything just boogies.... He still does not sleep EVER!!!!! I don't know what to do about this problem, I am losing my mind. I maybe get about 10 hours of sleep per week and I can't function like that. Its so hard. He cries allot too and I'm not sure why. He doesn't seem to be in pain, I feed him I change him and nothing works unless I am holding him and i can't hold him 24/7 .... Can I????Nicole started school last week so I don't have my helper anymore, thats been a bit of an adjustment, but I guess I'll survive. Faythe starts pre-school Friday she's very excited, its 3 days a week half days. It'll be allot of work for me but good for her, she needs other kids to play with... So like I said I have posted some new pictures!

Go Patriots!!!

Go Patriots!!!
Finally Football season!


Cute

Look at my muscles!

Look at my muscles!

No Oxygen!

No Oxygen!
So who does he look like????

VAPO THERM!!!!! Yipee!!!

VAPO THERM!!!!! Yipee!!!
Look at me I'm on VapoTherm now! You can see my fat cheeks!

July 5, 2007

July 5, 2007
First day no oxygen...

Apnea study

Apnea study
On Monday 7/2/07We participated in an Apnea study for UMass Medical School, it is a study to try to prevent apnea in preemies.


Colee holding Bryce

Faythe Holding Bryce

We're home!

Fist time trying out the carseat before going home

Cute!

Cute!



Daddy and Bryce

Daddy and Bryce
Finally I remembered to take a picture!

Sleeping...

Sleeping...

Just to get an idea of how small Bryce is, that is my hand and its almost twice the size of him. This pic is from last week.

2lbs. 11.6oz.

Coming out for my first tubbie!

Coming out for my first tubbie!

My first Tubbie

My first Tubbie
Anne (bryce's nurse) Putting him in the tubbie for the first time

The Mommy Massage!

The Mommy Massage!
Ahhh... This is the life!

Mmmm... Fingers!

Mohawk!!!!

Mohawk!!!!
Anne not only gave Bryce his first tubby, but she also gave him his first Mohawk!

I'm only the cutest baby EVER!

I'm only the cutest baby EVER!

Mad??? What gave you that idea?

Mad??? What gave you that idea?

Peek-A-Boo

Peek-A-Boo
So in this game what comes after you put your hands over your eyes???

Bryce trying to pull out his breathing tube

Bryce trying to pull out his breathing tube
Is this thing really NECESSARY??

Bryce holding onto a toy instead of his breathing tube and pulling it out!

Mom pretty sure you should have someone else take the picture and not try to do it yourself!

Just Me and My Mom!

Just Me and My Mom!
May 8, 2007

Even on bad days I'm still so Cute!

Please NO MORE PICTURES!

Please NO MORE PICTURES!
Would you stop with the camera already!

Clean blankets, clean bum what more can a boy ask for??

Boy am I tired!

Boy am I tired!

Changing my Bed

Changing my Bed
Mom gets to pick me up while my nurse changes my bed

Happy Birthday Mommy!

Happy Birthday Mommy!
First time I ever got to hold Bryce

Best birthday gift a mom could have aked for.