Tuesday, July 28, 2009

Milestones

With all the medical drama, it took me until last Thursday to realize that Max was sleeping in a full sized single bed in the hospital (craftmatic style). It took John until Saturday to notice and discuss our options. So Monday morning before Tyler and I took off to pick up John and Max at the hospital, I got Max's new bedding sorted, his new "big boy" bed assembled. No more crib or pack-n-play!

Max was thrilled with his new bed when he got home but after sleeping with his Dad all week, he had a bit of a hard time settling to sleep. So John slept on the floor next to him. Such a good daddy! But Max did stay in his bed and slept all night! Woo hoo!

Tyler also had a milestone slip by us this week. He spent his first night away from home. Overnight at Grandma's house, so I could get one night with my bed to myself. :) He did pretty well, all things considered. Next step...a week with Nanny and Grampy! Be ready, you two. ;)

Whew. Last week was overwhelming. I feel like I will never feel rested or relaxed ever again.

Sunday, July 26, 2009

Not pretty...

So here I sit, at John's laptop here in Max's hospital room. I am currently covered in the remains of runny poo from my chest to my knee. Poor Max has explosive diarrhea from all the antibiotics and his diaper leaked BADLY. Of course I don't have a change of clothes for me. I bring clothes for him, for John but didn't think about me. *sigh* I called home but John hadn't gone to sleep yet. He made the stupid mistake of calling his mother first. She got him all upset and he is too tired to make sense, never mind drive. So I'll just be here for the rest of the day. Poo covered.

Yep. I am feeling a bit sorry for myself at the moment. Max is fine. Doing well. Ready to go home. Rough night tho. His IV stopped working in the wee hours so they had to put in a new one. John got to experience that trauma first hand this time. Glad I was asleep at home with Tyler. I couldn't take it again. I wouldn't let them touch him. They'd just have to find another way to get the antibiotic into his body. No more IV pokes!

I bet I stink. Only so much babywipes can do. Oh well. At least Max is napping. I can sit here and try to dry off in peace. I hope John went to sleep. I will have to kill him if he isn't getting some rest. I can't deal with him when he is that sleep deprived. It just makes me cry.

Thursday, July 23, 2009

Bad news

Max has to stay in the hospital until Monday at least. :( Kidney problems.

Wednesday, July 22, 2009

On the mend...


So the culture has pinpointed the bug as Streptococcus pneumoniae bacteremia (blood stream infection). The source? An undiagnosed inner ear infection (masked by the redness and swelling of his outer ear infection). What leaves me confused is that Max had a prevnar shot which I thought would make him immune to this particular bug. Maybe someone in the medical know can educate me more there.

The broad spectrum antibiotic has been 86'd in favor of something stronger and more targeted. I was told the name of it this morning but of course it's flown right out of my head.

The good news is his lymph node swelling is way down and Max finally ate dinner tonight in a quantity that was close to normal for him. Whew! It's just down right spooky when that kid doesn't eat. He loves just about everything, usually. Unlike Mr. Pickypants Tyler.

So please, nice hospital people, let him come home tomorrow afternoon! Crossing fingers and toes again. He is so totally done with this little adventure. It will be a miracle if he ever allows anyone wearing a white coat to come near him again.

And the food people got his meal right for dinner tonight. Finally! But he didn't want what we ordered. So I had to call and request something else anyway. Figures. I know they must hate us down there. ;) I also just found out that we can get our parking validated since we are the parents of a peds patient. Would have been nice if someone told us that on MONDAY. While parking fees don't break the bank, they aren't exactly cheap either.

Oh who am I kidding. I can't really bitch. I'm just too relieved. I will blame Aunt Flo for my extra dose of cranky over the last couple days.

Honestly, the folks at Morristown Mem are super nice and very helpful. Bless the nurse who listened to Max tonight and took his complaint of pain in his IV arm very seriously. She must have spent over 45 minutes gently trying to pry and swab off all that tape the vampires had wrapped around Max's arm to strap him to that board thingy (to keep his elbow from bending) so she could re-wrap it in a stretchy sleeve thingy instead. Max sobbed the whole time because the tape was just ripping his skin to bits. Add in alcohol swabs to kill the stickum on the tape and ouch! That stings. But he was a much happier camper when she was finally done. It wasn't the IV causing the pain, thankfully. It was where the tape and that immobilizer board thing were cutting into his skin.

Oh! And with his fever officially gone for 24+ hours he was finally allowed to play in the playroom this afternoon. He was in heaven! So many toys in there he flitted from thing to thing, not knowing what he wanted to play with most. That certainly made the day go by much faster too.

ok. Enough with the babble babble. Time for some much needed sleep.

Tuesday, July 21, 2009

Ugh

So we still have no real clue what is going on with Max. Idiopathic fevers? I think that is what one of the doctors initially said. Idiopathic... fancy scmancy for I have no fucking idea. They are growing cultures of the mysterio bacteria they found in Max's blood to try and find out what the heck it is and if that is the ultimate cause for the fevers (they also said if it's staf epidermsomething that some schmuck just contaminated the top of the blood vial, so we shall see.) They discovered blood in his urine today too. That was new.

So he's been poked, stuck, pressed, squeezed, prodded, xrayed, ultrasounded, EKG'd, folded, spindled and mutilated. He's had enough. Let's not forget that he is now seeming a lot SICKER since he arrived at the hospital that he was when he was just hot but playing and having fun at home. I'm just scared this will be one of those "the hospital made him worse" scenarios.

They gave him IV antibiotics today. He is supposed to get another dose tonight sometime too. The parade of doctors all are very friendly and nice, but they have no real information to share with us. The antibiotic must be a broad-spectrum let's cross our fingers and hope it works kind of deal. That's the impression I got.

Meanwhile, the food folks keep losing our menu selections and sending food trays with stuff like pot roast and a cup of tea and lasagna with squash. Hello? He's 2! He was really looking forward to that hamburger patty and tater tots. Or the tuna sandwich he was supposed to get for lunch today. All the kid has to look forward to is the excitement of food in bed (or another ride in a wheelchair to his next procedure). Please try and get it right people! And fruit! Don't forget the fruit!

He's just so pale and small. So sweet, trusting and cooperative too. He holds still and gives them his arm knowing they are probably going to hurt him. He asks in his tiny voice, "Please don't hurt me..." and when they do, he cries, "I need a bandaid!" with heartbreaking sobs. All I can do is hold him and tell him it's going to be ok. I feel like the biggest liar on the planet.

I've never felt this powerless in my life.

My heart goes out again to my friends (Beth/Jeff, Kim, and many others) who have spent so much time with their little ones in hospitals for various reasons. I feel fortunate that this is my first time walking in their shoes. I've been lucky to avoid this for over 8 years now.

I hear Tyler crying. Looks like he will be sleeping with me again tonight. That means no sleep for me. That kid is a blanket stealing Tasmanian devil in bed. I get kicked and smacked all night as he winds himself up in my sheet and quilt in the dead center of my bed, gradually menacing and crowding me off the edge. Then there are the times he just sits up and starts talking in his sleep. Or tries to sleepwalk out of the room entirely.

Off to bed. Wish me luck and continued healing vibes for Max.

Monday, July 20, 2009

More bad news...

Maybe I need to change the name of my blog. When Life Takes You...to the hospital. Again and again. Ugh.

It's Max's turn (AGAIN!) The poor little kid can't catch a break. If it's not big brother caused injury, it's mysterious ailments the doctors are left scratching their heads about. Not good.

And that is where we are now. Max is in the hospital and the doctors are all scratching their heads. We feel so warm and fuzzy. Not. He's had fever spikes for a week now. His hands and feet are peeling. His lymph nodes in his groin and neck are big and headed for huge. He complains about pains in various places in his body. And the icing on the cake, he also has an outer-ear infection...which the doctors assure us would not cause any of the other symptoms including the fever. Good to know.

They have bandied about everything from Kawasaki syndrome to Juvenile Rheumatoid Arthritis. All are freak-out worthy.

So 4 IV stick attempts later, 5 vials of blood, a chest x-ray, other assorted poking and prodding, hospital hamburger and tater tots (eww), peeing in a bag, and a partridge in a pear tree - Max finally passed out in his Daddy's arms and I drove Tyler home for the night. If they keep Max another night, I'll swap with John tomorrow and lather, rinse, repeat.

If you are a praying sort and think it's just a bad idea for adorable nearly 3 year olds to have mystery illnesses that keep them stuck in a hospital, say a few for our little Max? Thanks.

Now it's time to crawl into bed with my clingy and seriously worried 7 year old. Poor kid. At least this time the hospital trip isn't his fault. Guilt has a bad affect on his sleeping patterns. And since he will be sleeping with me tonight, I'd rather not get hit, kicked or pee'd on all night or woken by yelling/screaming. *sigh*

Geeze, worry makes me really bitchy and sarcastic. I need to work on that.