Released from the hospital...5 loooong days

Finally getting a chance to catch up on what all has been going on with our Kenny. On Wednesday, he finally got discharged from the hospital. It was a long 5 days in there. My motherly instinct was right...get him in there...We found out that he had RSV.

(these pictures were after his fever broke)Friday and Saturday nights were bad. His oxygen sats were in the mid 80's. We tried putting a nasal cannula on him (for oxygen), but he wanted no part of that. He ripped it off of him quicker than we could get it on him! So...what did we end up doing? Well, while he slept, we made sure he had a blow by blowing in his face. It helped him so much...but it also kept me up all night with him. The minute I heard his alarm go off, there I was, putting the oxygen by his face. Then we got the usual crazy stuff happen while there...bloody nose from too much suction (cleaning snots), the usual...pulling out the tubing from the IV. Oh...and let me tell you...they got a great vein, those nurses. The one night, he pulled out his IV, so we (the nurses) had to put a new one in...then, on Sunday, he decided to pull the tubing out...blood everywhere...and lots of it! And there you have me holding and applying pressure to the IV site so the blood would stop pouring out...the needle was still in...he just pulled the tube out! And then, finally, you have the puke and the occasional G-tube leak. All in all..it was a pretty uneventful stay...hahaha! His temperature broke the second night (thank goodness), and the cough and boogers are still going strong.

A huge shout out to my niece and sisters. Thank you for helping us out so I could be at the hospital with him. He really hates being left alone there anymore...as I HATE leaving him there..alone. Ugh...it breaks my heart! The nurses and child life were wonderful...with letting him play with toys and keeping him company. By day 4, he was feeling much better (minus the continuous snot supply in his nose) and was back to lining up his cars and blocks.

He also found a new use for those tubs that they use for sponge baths...a hat!We also found out a little bit more of what we are dealing with with him. I honestly thought it was just going to be a "oh, he's just a micro preemie." comment...and really wish it was that...but instead, we ended up getting so much more. I will update when I talk to his neurologist and Comp. Care doctor next week. I want to make sure I understand everything that they have found. There was mention of Microcephaly (which we already knew), a cyst and a small cerebellum, along with him needing hemoglobin transfusions (his body isn't absorbing vaccines and his red blood cell count is low)...but like I said, I'll post more when I know all the details.

I am just very grateful that he's home and back to his old self...minus some coughing. His smile brightens up my world!

Kenny update...Happy Halloween

Whew, what a trying last few days. Kenny is feeling much better. He is still having a hard time with the oxygen saturation, but I really feel its because of his bad cough. He is on around-the -clock breathing treatments so that should do the trick. He is not coming home today like we were hoping. He has been throwing up and not tolerating his feeds at all, so they are starting him on Reglan and he will be seen by his nutritionist tomorrow. I also think they want him to be seen by his neurologist for the seizure as well. So, no trick or treating for him this year...which is fine, as long as he gets better.

Last night, Tony took the kids to the wedding that we were all supposed to go to. They put together last minute costumes that we had here from the previous years...and my creative hubby decided to go as "Crazy Banner Man"! He had the banner material, vinyl and mask so it was easy to put together...and it turned out pretty good!!!! See what you can do with short notice and some creativity?! LOL.

I am so glad Tony took the kids to the wedding. They needed to have some fun...especially after everything that has been going on. When they picked me up at the hospital late last night, they were all talking about how much fun they had. They were saying that it was so much better than a regular wedding...it was actually fun! HAHA!! I really wish I could have gone, but Kenny needed me to be with him...and that was more than fine with me. The bride and groom who put on this really cool wedding

He was smiling and playing with me, so that's how I know he was starting to feel a little better. Please keep the prayers coming.

You know, I always thought that because his Synagis shots stopped when he was 2, that he was immune to the whole hype of how dangerous RSV is in preemies...boy was I wrong! I have learned that because he has chronic lung disease (BPD), that RSV will be a big problem (if he gets it) for a long time. So not only were we on "lock down" during the RSV season for the first few years of his life, it will continue for the next few years (at least). Time to buy stock in hand sanitizer and paper towels!

Happy Halloween everyone!

Please stay safe and remember the kids that are allergic or have certain foods/candies that they cant have....Smarties, Dum-Dums and Pixie Sticks are a perfect choice (thanks to my friend Jen who reminded me)!

tomorrow....the start of Christmas music listening! woo hoo!

Time for another update

A lot has happened since I posted last. Halloween, birthdays, and RSV season! Yes...those 3 little letters that could be very dangerous for my little guy. He got his first Synagis shot last week and will be getting a shot a month until April. In the mean time, no going ANYWHERE with Kenny. Pretty much on house arrest. I am scared to death that he will be getting sick. He is doing SO VERY good now! He is starting to baby babble and smile a whole lot! We are still working on his physical therapy for his tight muscles in his neck, shoulders, arms, hands and tummy. The therapy seems to be helping...he isn't so tight in his hands, but he does still clench his fists every now and then. He is eating every 3-4 hours and sleeping more at night! Gone is his oxygen...but we are still keeping it around him, just in case he gets sick. His beautiful smile just brightens my day! We are being told to expect him to be hospitalized IF he does get a bad cold...so the older kids have to change their clothes when they come home from school, wash their hand and make sure they are not runny nosed before they can even think about holding him! LOL!
On another note....the house and car are falling apart! Try fitting 8 people in a caravan made for 7....does not happen! It's almost as good as fitting 8 people in a 3 bedroom, 1100 sq. ft. home....Baaa Haaa Haaa! Not comfy at ALL! We need another vehicle and house...badly. Maybe Santa will give us a winning lottery ticket for Christmas...(LOL)!
Anyhow, we now have a cute little fox living in our backyard...I finally got a good picture of that little guy! He usually comes out in the later morning and runs back and forth from one yard to another!
Lets see...oh, my 20th Reunion is coming up, but I really don't think I'm going...there are only a few people I really would want to see anyhow...and we can ALWAYS set up our own little reunion. It kinda would be fun, but I have not been in the mood to sit and talk about my life to a bunch of people that didn't care about me way back when, anyhow. What...I'd talk about how I have lived in the same small house for 12 years, had 7 kids, but 1 died, oh and 2 miscarriages...we are in debt up to our eyeballs...to the point of getting sued, our 1 and only vehicle is on its last legs, my youngest child MIGHT have cerebral Palsey on top of hearing loss and god know what else because I couldn't carry them to term...UGH... Now I'm starting to ramble. I'll tell you what, I would not wish my life on anyone. It is SO NOT EASY...but I am trying to deal with it. All I can hope for is that my kids grow up to he happy, successful individuals who have a great sense of morals.
Now off the pity party...My little Kayleigh who just turned 2, is now potty training! Poop and Pee on the potty! Woo Hoo! If I can just get Syd to go, we'd be all set! LOL!I'll be updating more, I've got to make the time...I will make the time! Love you all and miss you too!