Friday, November 12, 2010

All that, and a UTI, too.

Wow. I need to blog more often. I just noticed tomorrow it will be a month since my last post. I should realize that nothing in life is certain, and know how much can happen in the blink of an eye. But a lot has certainly happened since my last post (when I was advocate, strong, soldier mom) A lot has changed.

They say writing (really any art form) as expression is cathartic. Honestly it's kind of painful to write all the things down that go on in my head, which is probably why I don't. Then I just see it in black and white, as opposed to the swirling incessantly in my head. But I do admit I feel better usually once I've pounded out a post, so here goes.

All was peachy in the month of September and beginning of October. Or so I thought. I had noticed things. Things that anyone other than me probably would never notice. She's a little more cranky than usual. Her tone seems a bit more increased. Is it just me or is she tipping her head to the left a lot. She doesn't want to eat Nutrigrain Bars anymore, or yogurt melts...what's with that. She doesn't want to eat food at all. Hmm. All seemingly benign things. Individually. But add them together...

As October came to an end I noticed that her head tilt had become more obvious. She wasn't wanting the bottle as much. The day I took her to the pediatrician she was having a constant head tilt, didn't want to eat at all, and was not attending or able to look at anything for a period of time. She was having a few seconds lag time when she was looking at something. Danielle noticed almost immediately that something was wrong. Or maybe it was the horrified look of panic on my face. Dr. Brand noticed almost instantaneously. She hardly responded to him at all. It wasn't long into the appointment that a CT was recommended, and the fastest way to obtain that was to go thru the ER. A bit of urgency I think was behind his message of apology (he knows I HATE going to the AMC ER...and avoid it at all costs). So off we went. SEVERAL hours later after being in the C overflow hall, we got moved to a room. Several hours after her CT we got word that she had a right subdural hygroma and a midline shift. I knew the hygroma. WTH is a midline shift. I should've just been oblivious and not Google'd it on my phone. It all started making sense tho. The sudden over reactions to when you touch her right arm, the hypersensitivity issues, why even in the pool Tuesday night she didn't want to splash, her left sided tone was ridiculously high. A big pocket of fluid was compressing the right hemi from not only the top but had pushed the middle off to the side. It all clicked. Unfortunately for me..I was right. It was a shunt malfunction. It was hyrdro. I just didn't know how bad it actually was.

So Wednesday the 27th they went in to do the shunt revision. All was well at first. Until the valve grew staph. Localized thankfully. But staph none the less. Atypical presentation of bacterial meningitis they said. IV antibiotics were started. (which sounds like it wouldn't be that bad...but as they said in ICU to the STAT nurses when calling for another line she is a "vascular nightmare". I'm not entire sure why she seems to have the smallest vessels ever. Not sure if it is a tone/small vessel issue. All I know is that since NICU, and the countless amount of lines and scans with contrast we've had one thing has been determined...this kid has NO ACCESS. So it was nothing short of a miracle when the line that Cliff put in went in on the first shot. (They are STAT nurses, after all. Essentially the best of the best for sticks) It was another miracle that it stayed as long as it did. It was, however, also not surprising when her left foot line came out, and when they attempted to put it in her left AC it infiltrated within 6 hours. Her arm was so swollen it was hard. She couldn't bend it at all. The STAT nurses were all busy, so they brought in the best of the best on the floor. 2 tries (right foot, right arm) and nothing. So they went for the jugular vein. I thought it was pretty horrid the first night in AMC when they put a line in her head (when she was 6 months old) the line protruding from her little neck was definitely more traumatic. For all involved. She left it alone for the most part. And it stayed (by the Grace of God) til we left. Even tho we had almost lost it two times before that. So Vanco on board, we started combating our other issue. Constipation. For those of you with kiddos who have had strokes you all probably know decreased peristalsis is part of the package. So our kiddos aren't necessarily regular, and it isn't ever an easy process (at least for my kiddo). So, the main goal was seizure meds and miralax when she decided to go on food strike. From previous hospital/constipation mom experience I knew we needed an NG. Not a fan, but the only way to sneak fluids into a kid that doesn't want a bottle. So in it went. Content with the way things were I decided to wave my flag and go home for the night and sleep. Dad was on night shift. I walk in to a baby with no NG and a staph infection result. Huh. Why do I never leave the hospital... So Dr. Greek Resident decided that because he didn't know why there was an NG in place (because it had been ordered by Peds Attending nice guy) he decided it didn't need to be there. So three seizure med doses and much yelling later we put ANOTHER NG in. Can I just mention that I was already at my breaking point by now.

Flash forward a few days (9 actually) and we are seeing the light at the end of the tunnel. One week of Vanco almost coming to a close. Home in our sights. Thursday (after a poop and some bottle eating finally) I decided it would be a good time for some food and Starbucks. An hour or so later I walk in to my sleeping baby and my mom watching TV. She had scooted to the bottom of the crib, so I lowered the crib side and went to scoot her back up top. I stopped, silently stared, raised the crib side, walked into the hall and asked Heather to please come in our room for a minute. She said "is everything ok?" to which I shakily replied "Not at all". A stain had saturated the bed sheet she was on. Her head wet. Actually dripping from her suture site. CSF...all over the place. The next few hours were quite a blur of pacing and caffeine. We caught it at 8p, by 1115p she was smiling at her two favorite neurosurgeons as I walked out of the OR to go and contemplate what the hell I had done in a previous life that would warrant my child to pay so greatly. I must have pillaged towns of children and women for sure. Because how can this much possibly happen in 5 months, much less a little over a week. Around 145a Dr. A came out and sat on the chair next to me...looking very clean shaven and a bit perplexed and a lot exhausted. It was, their speculation, that while pooping a good poop, the abdominal pressure was slightly reversed or possibly blocked the shunt and the shunt malfunctioned. Pooping = spinal fluid leaking from head. That was pretty much all I heard. Sometime a little before 3a my very tired and disoriented baby came up from PACU crying. I've never seen her handle anesthesia so poorly. They said she had a freak out in PACU, and wasn't much calmer in PICU. After playing her song, finally getting a gown on her, and giving her the blankie back she fell asleep. So much for that last Vanco dose at noon on Friday and discharge on Friday afternoon. Saturday (after the cultures came back clean from second surgery on prelims) we rolled out of there. Soooo very happy to go home. Blissful almost. I finally started my hospital PTSD decompression by the beginning of the week. A bit depressed, a lot of crying, tired beyond all comprehension. Tuesday brought respite (literally). Now, I have been on probation with respite because I never use them. It's hard to leave your constantly seizing child with someone. Anyone. Much less random respite worker. Things were somewhat more stable now...so I decided ok, I'll go shop. When I walked in and saw my extremely pink faced kicking happy baby on the floor, I thought huh, this is why I never leave the house. A quick temp revealed not much of a temp.. but one to warrant a call to the peds and nsurg offices. NSurg nurse called and I could tell as soon as she took a hesitant breath before speaking we were going. So I started to pack. Kind of mindlessly. Throw some stuff in my hospital bag "in case!!" we have to stay. Not thinking I would need it. They called ahead and told them we were coming so it was right back, and nice ER 3 year resident guy from last time came in. Another quick temp revealed a rising temp now. Still not really high, but high enough for 3 year resident guy. Work up for fever of unknown origin. First thing.. tap the shunt. (I forgot to mention the shunt tap on our last hospital stay..) The first needle she rocked. She didn't even move except her eyes in the direction of Dr. Jey.. like "hey. what you doin, Willis" The second one wasn't well received. Then come the STAT nurses. Cultures needed, CBC etc. Talk of a UA. As the night progressed and talk of admission started I had "UA/UC" in my head. I think I muttered "if they did the UA I bet that'd be it" at least a dozen times. I'll try to shorten this extremely lengthy diatribe as best I can. Admitted to floor. WBC's elevated, total protein in CSF elevated (indicative of infection, however non specific) WBC's in CSF. She was only a few days post op...of 2 surgeries I kept thinking. I felt better when Dr. A said the same thing. He didn't seem convinced that this was the same bacteria we had been battling. The 48 hour culture results at 5p yesterday proved him right. They were clean. However, her urine, that we finally collected Wednesday afternoon..had growth. Not just growth..but Pseudomonas. For all you non micro peeps.. bad bacteria. Not necessarily uncommon in UTI, but not really common either. I already had my bags packed, sleeping baby in the crib unaware our walking papers were on the way..and I get socked with a UTI diagnosis that could've been found in the first several hours of our ER visit. Sigh. While I applaud the dr's for their aggressive and cautious approach, REALLY!!?? A freakin UTI. Off we went Cipro script in hand. Which brings us to now I guess. After a visit with Dr. Brand today to pick up U bags, clean catch containers and a VCUG script (to make sure ureter reflux isn't an issue so we don't have any possible surprise bugs at a later date) the baby is safely and antibiotically sound (I'm pretty sure that isn't a word) with her dad for the weekend..and here I am. Blogging about the ridiculousness that has been the last few weeks. I'm not really sure what I hoped to accomplish by unleashing this on the interwebs...but I guess I feel slightly better. Maybe not so bogged down by the time line of it all. Slightly in awe that I am actually still awake. And as usual realizing how incredible my little girl is. Her strength and determination know no bounds. She will never cease to amaze me..that much I know is certain. And I think a good portion of the neurosurg and infectious disease dr's are pretty impressed with how much of a trooper she is. I think she won a few of them over in the end. I mean, come on.. who couldn't fall under the spell of this little miracle? She is quite the mighty monkey.

1 comment:

happy's mommy said...

Girl...when you pound out a post you pound out a post! ::wink::

I'm glad you released it all. I do think it's good for the soul. And the other seizure parents who are out there trolling for every bit of information they can find. Perhaps I'm morbid. But I think it helps...knowing the good, bad and uber ugly!

I've been watching your FB updates and just feeling SO helpless. Like, seriously, what can I do other than offer cyber support. Which really seems pointless. Praying at least (selfishly) makes me feel like I've contributed in a tangible way. But overall...just felt helpless watching from the outside. And just wanting it to be over for you girls! Hopefully you've maxed out your drama quota for the foreseeable future!

I called a close girlfriend...my college roomie actually...while Trevy was sleeping in his hospital issued jammies this week. And I told her...I swear if someone else were telling me all the stuff I "say" happens in my life. I swear I'd think they were a liar. Obviously in need of attention. And then I started bawling...cause every word of it is true. These hell days. And these glory days. I emphasize the struggle part a lot. But I've been thinking lately...that I think I do that because if I minimize it - then it strips the amazing away from the good days we have. If Trevy's not fighting an uphill battle - than so what if he says "mama". If Charli's not waging war on the Seizure Monster - than big deal if she smiles as she stands up. Ya know.

Anyway...

All that to say...we've lived through some drama! The hell kind. AND the amazing sweet glory kind!

Hoping the tide turns in the amazing sweet glory kind from here on out!

xoxo

...d