I have so many things to post and only limited nap time to do it in. We have been busy. For those who don't know, (not sure how that is possible at this point) but Sophie Grace had a few set backs in February. Our girl had her annual check up/CT scan. It was determined that her shunt had failed.
Were there any signs????? Not that ANYBODY noticed. The reason I now know we have a fabulous pediatrician once again? She apologized and called me at home. She asked other docs what she missed? What she could have done better? The answer: Nothing. No one knew. All the quotes of "It will be obvious, mom." Not so much. It is theorized that she went into gradual failure, so her body adjusted. She was probably walking around feeling nauseated, but didn't have the words to say it. She never threw up, except when the entire family had the stomache flu.
So, in February (the 10th, I think)...she underwent another brain surgery. The process for the 10 days prior consisted of CT scans, x-rays, attempts to jump start the shunt...to no avail. Then we waited, and waited for the Doc to get in town to do the surgery. It was a LONG 10 days. So, we ended up taking out the faulty equipment and tried something "new". Sophie had an endoscopic ventriculostomy. (Impressive, you say?)... yeah. SCARY I say. See, this was the first time Sophie was really aware of her situation and what was happening to her. Also, this was the first time mama really
knew what we were up against. Both girls suffered greatly through the process in many different ways, with some lasting effects that linger on today and daily.
The good news is that Sophie is a small, but mighty! She took a little time, but bounced back. We have several "war wounds" to remember the occasion and a real aversion to the "Donut", or CT scan. Also, watching a 3 year old who had already been given a sedative, almost successfully take down 5 grown adults when they took her stitches out.... Yep..amazing.
Prognosis?? Wait and see. The procedure is about 80% effective, meaning that 20% need to either be redone or a shunt needs implanted because the process didn't work. We are in the "wait and see" time frame. To be honest, my mama instinct is kicking in. We had lots of developmental success initially. Speech and gate improved overnight. It was shocking. The girl was under approximately 28mls of pressure. Look it up if you want to see how bad that actually was. She went from being my toddler to my teenager overnight. Clarity was amazing. That has since slowly drifted back to "toddler talk". Now, here are the variables: Sophie was out of school for a month, talking only with adults. Speech retrograde and return to school were nearly parallel. Maturity has been diminishing slowly as well. Again, parallel to being around her peers. The low muscle tone has seemed to stay "corrected", although she is falling alot.
When asked how she is feeling, she says, "Not so good, Mama." but can't really pinpoint how she is feeling. Because it is so nonspecific, they don't want to risk exposure to radiation and/or sedation to find out. Plus, the further away from the surgery, the better chance to see if the process worked. It is not like a shunt, which has an immediate result. It is a slow, natural draining and brain filling in process. Feeling "funny" is also part of the process. When talking to the nurse practioner, I was told that adults with hydrocephalus who undergo this surgery have a long adjustment process and complain of feeling off during that gradual pressure regulating time. It's enough to make a mama lose her flippin' mind.
So, above is what I will affectionately call the "cliff notes" of our last 4 months with Sophie. Sophie's emergency came on the heals of an extended and ridiculous stretch of major sickness in the Lucas home. Sophie and Jack were in and out of doctor's offices for what seems like months...wait, it was
actually months. 10+ times for the little man. It culminated in Mama taking him to the ER and insisting they give him IV fluids. I was "shunned" by the doctors for wanted to stick my kid, but let me tell you, I would not stand back, one more minute, watching my breastfed kiddo dehydrate because he was so sick he couldn't nurse. 24 hours without a wet diaper was the straw that broke this mama's back. When they "attempted" to give Jack ibuprofen to make him feel better and then "see" if he'd nurse, I stated simply, "I am not ignorant. I have done that for the last 2 weeks. Give my child fluids." Their response: "Well, Mrs. Lucas,
most moms don't want to stick their kids with needles." My response: "I have another child who had brain surgery. I recognize dehydration and I have NO ISSUES with making my child better. I won't leave until
you give him fluids."
They gave him fluids. Jackson got better. Hmmmmmm Mama knows best?????
Result of the massive illnesses: Jackson was diagnosed with allergies to 2 antibiotics. Hence, why we couldn't kick the multiple ear infections and illnesses that contributed to his inability to nurse and eventual dehydration. Since then, we have been paired with an immunologist who has discovered that Jack is also allergic to Shrimp, Tuna, and EGGS.. Ugh, eggs.....But that story is for another post. Mama is calling it a "sensitivity" at this point. We are ok to give them in the ingredient form. i.e. in cakes, etc.. which will be very important in just a few short weeks for the boy's 1st birthday.
Mama also went back to work in January. Jack started daycare as well. Transitions are NOT easy for this household. Nothing like returning to work at a new school only to say, 2 weeks in, that I'll have to miss a week +. Fortunately, my new job location also has a new attitude to go with it. A positive, supportive and nurturing environment. They made every attempt to lift me up, not tear my efforts down. I am immensely grateful for that.
Now, back to the Lil' Man. Jack went from doing nothing in the motor skill department to crawling, pulling up and cruising in about 2 weeks. He takes down even the strongest of adults with his constant "getting into things". We are now battling a thrush and/or biting issue with nursing. We've tried all remedies to cure thrush and had NO success, so mama is starting to think it's a biting teething issue. Neither one of us presented with any symptoms of thrush other than excrutiating, curl your toes, hyperventalate kind of pain while nursing. Quit you say??? On my (and Jack's) terms.... not on some stupid weird biting/thrush like stage of nastiness we didn't ask for. Makes me crazy. The kid and I only have this time and then it will be gone. I want to end nursing on a mutual agreement, so to speak. Although, the pain is shutting down the works just by making the experience so "un-natural".
So, let's list our last 4-6 months:
3- 4 ear infections for each kid
stomach flu for the household
Thanksgiving
Christmas
new job
new daycare for the boy
brain surgery
emotional baggage from above mentioned experiences
thrush/biting frenzy
baby crawling and pulling up on everything
Dad had heart procedure (yet another post)
OK...that's just off the top of my head. Now you know why my posts have been lacking as of late.
I now hear the lovely sound of the crib toy playing water music, so I must go and retrieve the little guy for a breath taking bout of nurse, suck, OUCH, don't bite mama, suck, breathe Owww Owww Oww!~ : ) Wish us luck!
