update on my boy

[geckoed]

Lochlan got out of the hospital today and is doing really well. It was an easy stay. His release xray on his lungs was a good one, we're FINALLY clearing up Septembers pneumonia. He has BOTH ears clear for once as well. They are thinking now that he CAN hear from both ears, not just one, so thats a huge blessing as well. His port-a-cath is still functioning well too. He added some words too He can say mom, dad, shoes, no, hey, vroom (car), nah-noe (Connor, brother), Ewww (Trew other brother), and EEEEEEEEW (as in gross). He'll be 2 next month! He's really growing up.
No real point to this post

[Sweet_Fantasy_Fox]

Thats awesome news mama!! I am so happy to hear everything has gone so well, and WTG Lochlan for all those new words!! What a BIG boy!!!

[titania]

im so glad to hear that wonderful news!! cause for celebration i think! how long was he there? it was a while, wasn't it? i bet its good to be home.

and if you don't mind me asking, can you fill me in on his condition? i hope that doesn't sound rude -the word 'condition'- but i don't know how else to say it.

[triscuitsmom]

YAY Lochlan!

That is such awesome news Mama, keep us posted on his progress!!!

[Leininger27]

So glad to hear that your little man is doing better!

[mom2kailinconnor]

Lochlan!!

[geckoed]

hi Helen this last one was only 3 days. Actually this past month we've only had 6 days in all month. Which, sadly, is pretty good for him. We're in and out a LOT. Its hard to do, with 3 others at home and a baby on the way. But you do what you have to do. We end up home schooling the big kids in the hospital. You should see 5 of us in a hospital room for 10 hours at a stretch
Lochlan has several medical concerns. Most pressing is his immune deficiency. He has Hypogammaglobulinemia, Selective antibody deficiency, complement deficiency, and neutropenia. He doesn't recognize germs or try to fight them. He catches EVERYTHING. When *you* touch a virus and then your rub your eyes the germ gets in. At first, nothing much happens. The virus tries to multiply and your body says "hey! you don't belong here!" your body identifies the germ and begins its attack. Your body turns up the heat to kill the intruder (fever) or tries to flood the germs out (runny nose), or makes you cough them out. Your body works quickly and effeciently. It makes you feel bad, so you rest and your body can concentrate of ridding you of the virus (or bacteria). Your body takes notes, and next time this germ comes in your body will remember what worked and fight it off so fast that you may not even know you contacted the germ again. Lochlans body is "blind". It doesn't know the germs are invaders. It lets them in and allows them to multiply. It doesn't bother to mount a defense. It doesn't recognize previous tresspassers. So if you immunize him with a live virus he will get that virus. If you immunize him with a killed virus he still won't recognize the virus. Vaccines won't help him. We don't KNOW he is sick until he is REALLY sick because he doesn't show symptoms until late in the illness. He has a knack for getting serious illnesses repeatedly. He's had strep throat a dozen times, probably 2 dozen ear infections now, RSV, bronchiolitis, bronchitis, bouts of pneumonia, a pneumothorax, UTI's, klebsiella oxytoca, meningitis (group A beta hemolytic strep meningitis), sepsis 6 times (3 with septic shock), repeated staph, repeated cellulitis, chronic yeast, eye infections, sinus infections, tonsillitis, etc etc etc etc. He gets gammaglobulin infusions every 3 weeks now. He has lung damage from the infections. He has a heart murmur and possible damage to his heart from the infections which they are monitoring him for. He has episodes of cyanosis. He has reactive airway disease. He has seizures. He has torticollis (treated), plagiocephaly (treated with a helmet from 2.5-5 months), limb length discrepancy (hemihypertrophy), he has an ear with a small deformed canal and resulting possible hearing impairment on that side- but nothing definate right now, he has a cystic hygroma/lymphangioma in his neck, he has visual delays, he is speech delayed. He was born without a suck reflex but learned to nurse He has anemia, keratosis pilaris, eczema, strange toenails, and delayed fontanelle closure. (in short, his bones are wacky, blood is wacky, brain is wacky, eyes and ears and mouth are wacky, his muscles and skin are wacky. His insides to his outsides, top to bottom are wacky.
He's FUN, funny, happy and delightful. To know him is to love him. He is a joyful boy. You would not look at him and say "poor thing". You look at him and laugh or smile. He's hardily built with thick longish hair and big brown eyes. He is always smiling. He is social and friendly, snuggly, and playful.

[titania]

thanks kim. i knew that he had immune issues, but had no idea how serious that was. wow. he sounds like a wonderful little guy! i hope he stays infection free and out of the hospital for a long time!!