Stays in Vegas.

(7/8/13) This puts a whole new spin on the what happens in Vegas stays in Vegas...

     

       I am officially frustrated. They essentially promised yesterday that we would be out of here today (pending results). Well, the results today showed a high potassium level in her blood. They took the blood from the heel and said they often have problems with potassium and phosphate numbers with blood drawn from the heel. That the sample they get there is what is called "hemolized", or concentrated,with potassium and phosphate. They need to do another test to be sure it was just where the blood was takes from and not a real result of her potassium. So they had 3 different people come in and stuck her 4 different times to no avail..the only thing they got was a pissed off Abigail..and then a frustrated mommy. After the 4th stick I finally said "how many more times are we gonna try before we look into another option?" So the nurse went to talk to the doctor. After about another 30 mins to an hour of waiting with hearing nothing I called for the nurse and asked her the plan. She responded "they have to figure that out" I asked if they could come discuss it with me and she responded " they have to make the decision first-then come tell you". How does that make any sense? Making plans about my daughter without even asking me?? That bugged me. Then she told me they were on rounds and so he couldn't do anything right then anyway. I kinda freaked out a bit. I didn't yell, but I very firmly expressed my frustrations and concerns and desires. I explained that Abigail has had enough. They have stressed her out enough, it's been too much. I appreciate how thorough and aggressive they are, and if this was a new condition I'd say let's keep at if, but it's not. We came into the ER for a fever and seizure, those are treated, she's back up to speed, let us go home. 

     Before discharge it is protocol for them to check levels each morning. So every morning that she has been here she has been woken up with a stick to the heel. But each morning they seem to find something different. Yesterday her potassium levels were fine and today they are not? We haven't changed a thing. Also, she had 2 more breath holding episode things since yesterday but both times they happened while they were trying to draw blood. The only times she's had those spells while she was here is when they were sticking her. The docs and nurses are all concerned about it-well, THEN STOP CAUSING IT!!!! Dude!  She's absolutely fine until she gets poked. Her vitals are fine, she's eating/peeing/pooping fine, she's actually pretty happy, she looks good, she's acting normal..until they stick her then she throws a fit-can you blame her?

    Like I said, I love how thorough they are being and even aggressive-but we don't need it. We know causes and syndromes and what's normal and what's not. We know her baseline, we know what's healthy and what's not. Abigail is a special case and they are treating her like she's normal. She's very AbiNormal, but they don't know her history so it's hard, I get it. I've tried to tell then several times that if they would just come talk to me instead of leave me in the dark all the time that I could probably give them some good insight as to what's normal and what's not, what tests we've done and what the results were, what to worry about and what to not. I understand they have been through way more schooling than I have, but I know Abigail way better than they ever could. That's the other thing-I have known nothing about their plans or results or where we stand/how much time etc until after the decisions have been made. When people ask what the word is I have to say "idk" because they won't talk to me! I've sat here, by myself, for hours not knowing anything and that is not refreshing. 

    We have done one more heel stick to check the potassium levels again. We put a heating pad on her heel to try to get some better blood flow and decrease the risk of another hemolized sample. However, it took the blood so long to come out I worry it got hemolized in the process. We'll see. If the results come back still high they will have to poke her again venously to rule out it being high due to a heel stick. 

    I'm just so fed up with this hospital right now. Every time Abi falls asleep it's almost instantly they come in to do something -check her temp-give her meds-get a blood pressure reading-take her blood-whatever, it's very frustrating. I feel like they keep pissing Abi off and stressing her out to wits end for no real reasons. She's fine until they poke her then she goes into a breath holding episode--they worry about it, but they caused it! These spells aren't just happening unprovoked-STOP PROVOKING THE HULK! (In case you don't know we joke and say Abigail has baby hulk syndrome..that she's not quite big and strong enough to change into the hulk, so when she tries it manifests as a seizure) -- I think I might prefer her turning green over purple though...

    Anyway, I'm frustrated, Abi is exhausted and stressed. I think we should have been out of here days ago, but alas we are still here..abi finally sleeps again so we just sit here and do what they have us do best-wait. I'll keep you guys posted. 

This is AbiNormal

Abi's jail. 

The floor was turning my feet black-this is what I wiped up..I only care because I already hated being there. Haha

What happens in Vegas...

(7/4/13) I will never remember Las Vegas the same after this trip..but before I get there, let's start from July 1st and recap Abigail's most recent check up visits.
     July 1st - Abigail had a Neurology check up today in Provo and it was AWESOME! I remembered to show him all the videos that I had of Abigail and ask all the questions I've been wondering. I didn't get any bad news, just helpful news. I've written about these spasm things that Abigail does as she falls asleep and I got to show him the videos of them. He agreed that they do look like spasms and got an EEG set up in order to confirm or deny if they are. If they are, then we will start a short-term steroid treatment to get rid of those..so that's awesome that they are treatable! I also showed him the eye things and he agrees with me that they are not a tracking reflex, but indeed is nystagmus but isn't convinced its caused by a seizure, so that is also good, except now she just does this random eye thing and we don't know why...but what's new right? haha All in all the neuro appt was a definite success. After that appt I went and met up with Haley Perry and got to meet little Logan! WHAT A DOLL BABY! He is so fun! He makes the best faces and is definitely a little mover. Abi was being a little booger at first but then we started walking around and she calmed down. I've found this very AbiNormal way to carry her around that works for both her and I-I lay her face down over my arms as I push the stroller- now I still have a stroller to put stuff in and 2 hands to maneuver it..it's pretty neat, and gets lots of attention. I figured this out at Walmart one time and it is the one thing that has consistently worked for her at each attempt. After hanging out with Haley I went to dinner at my in-laws for my birthday...not before I locked my keys in the car though...that was silly. So today was a long busy day for Abigail but overall it was a good day for Abigail - she didn't sleep a whole bunch because every time she fell asleep we stopped and got out of the car, so she was slightly irritable - but still good.
     July 2nd -today is the day of the EEG - she did SO GOOD! she laid still the WHOLE time the lady put the leeds on. Just laid there chillin like nothing - then fell asleep during the EEG so she was still then too! She did wake up once long enough to have a breath holding fit then back asleep - but good news is we got that breath holding fit on the EEG!! If it's gonna happen, that is the best place for it! We were supposed to do a modified barium swallow today too - but the EEG took too long and we rescheduled for the next day. Then Abigail, Olivia, and I went to the Hogle Zoo with Jaclyn and Dash - it was SO HOT! SO SO HOT! but we still had a good time and Abigail was so good, again! Just hanging out looking around..a little cranky cuz of the heat and another day of little sleep - but nothing we couldn't handle..then we left her at Grandma's house for about 2 hours while we went to see a movie and Grandma said she did AWESOME! That she even slept for her a little bit! Another good day for Abigail!
     July 3rd - ENT visit and modified barium swallow - check and check. The ENT visit was lame just because I waited to long on the doctor (he got called in upstairs for a minute - wasn't mad - just waited) the nurse came in and told me he was going to be another while so I started to nurse but as soon as I started nursing he walked in the door, go figure, right? So he looked at her, asked a few questions about how she was doing etc etc then we were out. I waited for the doc longer than I got to see the doc..and I didn't learn anything from the visit but oh, well - protocol is protocol. After that visit Abi and I had a few hours before the barium swallow and so we went all around town and got a ton of errands done - again with her being AWESOME! She slept through the oil change at jiffy lube, which was nice because then I was able to eat the Zupa's I had just picked up before the next appt. But Abigail slept for a VERY long time! I'm not sure exactly what time she fell asleep but she slept through getting food at Zupa's, the oil change, checking in and registering at the hospital and through most of the wait! I got there 15 minutes late so they asked if they could just do the next patient before me and I said sure-little did I know that would keep me waiting 1.5 hours! Abi was still sleeping (thank goodness because she wasn't allowed to eat before the swallow study) and so I fell asleep too! Not on purpose, but I put my head down on her stroller and didn't wake up again until I heard her fussing. haha I woke up, looked at the time and thought..."uh-oh! I hope they didn't try to call us and I slept through it!" --but they hadn't. We actually waited another 15 or so minutes before we got called up. However, the lady came out and did the pre-questionnaire outside in the waiting room because they had to clean and sanitize the WHOLE room...she said "we don't want Abigail getting what this patient had" --- uhm, okay..scary! But we went through the study and found that Abigail has dysphagia -- just a scary word for a decreased eating efficiency. That she is a little disorganized and inefficient at eating which increases risk of aspiration - but she is not actually aspirating - which was the point of the study. So to explain, when we swallow there are 4 phases the food goes through before it passes into our esophagus. Each stage works as a check-point, if you will, for the brain to know food is coming and to shut off the trachea.  If one of those stages, or phases, is off or weak then it effects all the remaining stages. Abigail completely skips phase 1 where the food sits on the back off the tongue and goes straight to the back of the throat.so it takes her brain a little longer to realize there is something there since phase one didn't get triggered. Also, she brings her jaw down so far between each suck that she doesn't get the most out of the suck - so she essentially works harder than she needs to....overachiever - haha jk
 -------  NOW FOR THE [not so] GOOD STUFF - LAS VEGAS. ------
Okay, a little back story first. After the barium swallow was over Abigail and I did a few more errands then headed back to Orderville that night. Before we left I made Abigail a little bottle of pedialyte that I could supplement her on the drive home with...but I accidentally put too much powder in the mixture..didn't think too much about it- just figured it would make it taste a little stronger - like crystal light -- she didn't seem to want it then anyway so, whatever. Halfway through the drive home I stopped to feed her some milk and when she was still fussing I gave her some of this pedialyte also. After that she didn't stop fussing, no SCREAMING, the rest of the way home. These were blood curdling, non-stop screams for 2.5 hours. I thought for sure the pedialyte had upset her stomach. I figured we'd go through the night - let it get out of her system and then she'd feel better. The next day  (now we are at July 4th) she didn't wake up until after 8 am - which is very not AbiNormal - very unlike her. The very first thing I said to Jaren that day was "I'm worried about Abigail, she doesn't normally sleep in this long" (I probably wouldn't have been as worried if she wasn't so upset the night before) but he said "I don't hear anything" and I said "that's the point." So he went and got her from her crib - she was a bit fussy but mostly really warm - it's hot in Orderville and she had't been the most calm of babies that night but I took her temp anyway 98.8 - nothing to worry about. But something still wasn't right with her, she wasn't acting like herself.  I noticed she hadn't pooped all but once all day (which since switching to nutramigen was very unlike her) and she wasn't eating much at all either, and pretty fussy. Liv noticed how warm she was all day too. I figured she was still aching in her belly. So after the day's festivities I had participated in, I went home, finished packing, and off we went for Primm to stay the night for our flight to NJ the next morning..The whole 3 hours that we were in the car Abigail was fussy - really really angry. I attributed it to her not wanting to not be held because she was just fine before I put her in her car seat. But after 3 hours of screaming and watching her I could tell this was not AbiNormal behavior. She was absolutely miserable, and these screams were not her just being ornery - something was very very wrong. I said a little prayer that she would be able to find peace and comfort then looked up tummy aches in 6 month old to see if there was anything I could do - While looking into that I got this STRONG feeling that we needed to take Abigail to the ER. I told Jaren that I thought we needed to go to the ER and he resisted at first saying that she's just being rotten. I fought him and told him no, this is very different from her normal behavior - yes she has been fussy before, and yes she can scream, but she doesn't scream for 3 hours straight, especially like this. And it just kept getting worse and worse, and now she was HOT hot hot. He wasn't going to take me to the ER until she started having a seizure, and even then right at first he said "our daughter has seizures" as if this was okay to be happening. I get his point - yes seizures are common for us, and yes she does have them - but it was painstakingly obvious to me that something triggered this seizure. Finally, after the seizure persisted did he agree to take us to the ER. Abigail seized for 40 MINUTES before we finally got the medicine in her to stop the seizures..thanks for nothing Vegas traffic (also my GPS took us who knows where the first time). I should have pulled over and called 911 and had them come to me, but we were so close, and I didn't really know what to do. We got to the ER and finally her seizures stopped and she fell asleep. I would have to say that was the hardest ER visit for me yet. Just because the seizure was so long, and we were in unfamiliar territory, I had to fight to get her there, it took us so long to find it etc etc. Once everything calmed down it got a little easier. But fun fact - the ER doctor that night graduated from RV High School - which was a local high school back in NJ - one that my high school competed against in sports! So that was neat. But we sat in the ER for HOURS waiting to get admitted into the PICU downstairs. I'm pretty sure I would have gone crazy if it weren't for the neighbor ER patients keeping me entertained with their jokes and stories. haha I heard some pretty interesting stuff though from the ER that night. One lady with like 12 personalities that went anywhere from screaming to talking to herself to singing. And another drunk girl who I guess had gotten in a fight and got her eyebrow busted. (Her mom was there and told me what happened - she didn't speak English very well, but I got the jist). I was able to get some much needed homework done though. So it wasn't ALL bad. But from the very beginning of the day I felt that something was off with little Abigail - Jaren says he will never doubt my suspicions about Abigail ever again - smart man ;). But Abi and I are still (right this minute) sitting in the PICU. One more night here and we should be able to leave tomorrow if all goes well. ((That's what they said last night but then this morning said her blood was pretty acidic and they wanted to run some kidney tests to make sure she is fine - so I stay one more night. The nurse tonight is the same nurse as last night and he said that she had a breath holding episode this morning around 5 when they were drawing her blood for the last cultures before discharge and with the lack of oxygen comes an increase in CO2 (carbon dioxide) and CO2 is essentially acid. (when CO2 is present with no oxygen available it turns into pyruvic acid and builds up in the body) He says "duh she will have acid in her blood" but they just wanted to be sure everything else was okay..can't blame them. They decided to start her on [another] medicine to bring down the acidity in her blood and in 2 weeks am supposed to go see a kidney specialist...another specialist to add to my list! -- I think I've finally passed you up, Stephanie :P --
Anyway, so that's my story for  now. Abigail is doing much better and is acting herself again. I've even seen a few smiles today! - not as many as she used to do, but we'll see if that changes once she gets all unhooked and can go outside again! Hopefully tomorrow!
Side note - did anyone else know that valium is used as a seizure medicine? I just learned that! The emergency seizure medicine that we should have to give her in a time like that is called diazepam -- or valium. Crazy! I have a 6month old daughter and she's already on the good stuff ;)

Anyway...

This is AbiNormal.