The dog ate it, wait, no that was Carmen

September 29,2009
At 1pm my daughter Carmen called me into her room where she was supposed to be napping. She told me that her necklace was giving her throat “owwies”. I looked for marks that she had it on too tightly but couldnt find anything. I asked her where her necklace was right now and she pointed to her throat. I quickly looked over her bedroom to find said necklace without any luck. She had indeed eaten the necklace.
Now this was at least 18 inches long and held 40-50 beads on it. The thread was a thick woven style designed for making the ever fashionable friendship bracelets. The beads were the cheap plastic kind found in any kids grab bag of beads. This interesting appetizer started out as a prize Carmen had earned on day. She and I had sat down and created it together.
As we return to the story I was calling Jim, the clinic, and finally making the desicion to head to the local ER. A german ER. Carmen was chipper and excited to go for a car ride, daddy included. I had called and asked if he could come with.
So the first doctor we see says essentially if it was a smaller item or metalic they would just let it pass, but since it was a lengthy piece we were to go out to Nuremberg and see what they could do out there. The run down was, they would take an x-ray and see if could see the plastic and or knock her out and go in with a light scope down her throat and pull it out. Now that is only possible if she hadn’t digested it.
The trip out was an intense one. Jim and I were tense and flaberghasted at our situation. Carmen and Rosemary played, laughed, and sang the 45 minutes it took to get to Nuremberg Hallerwiesse Hospital.
Fast forward, they take an x-ray which of course shows nothing. It was a slim chance but one still worth taking. They admit us and let us know it will be hours before there is an opening and we will be spending the night. Yippee. Now keep in mind most of these doctors dont speak good english or any at all. So explaining Carmens whole medical history, including the current situation was rather sticky at times. All of this ended up being communicated through guesses in languages and an incredibly large amount of sign language.
Jim leaves with Rose to head home and Carmen and I settle in or a long wait. Sooner than expected they call us, and downstairs we go. Carmen enjoyed the “bed ride” and was even cool about them putting numbing gel onto her hands. That would be the extent of Cool Carmens interaction for the next 24 hours.
I sat there praying for a safe procedure, a quick one and for this nightmare to be over. But a certain prayer crept into my thoughts, if this is the last time I get to see her on this earth, I pray that she would know that I love her with all my heart, and I did only what I thought was best for her.
They gave her a drinkable medicine to help her fall asleep. It didnt do much, she was on full alert the whole time. When she wouldnt let anyone put a hair cap on her they brought in a syringe, handed it to me and told me to squirt half up each nostrile. I was shocked, I had never done more than hold and help calm her. But I tried and she totally flew off the handle. I tried again and again, finally after a few moments I managed to get most of it up there. She freaked to a new level involving 4 adults and myself to keep her on the table.
I hugged her tight, talked to her and watched as they unsuccessfully poked her hand twice and then went to her thigh for another try to get an iv going. I was started to protest but she lifted us all in her own protest and they backed off deciding waiting for the medicine to take full affect would be best. (duh)
For the next 4 minutes she sat cradled in my arms crying to go home, and for me to save her. All I could do is tell her I was there and that it was going to be alright. As she was slipping under I got first hand account of what it must be like for the parents of Autistic children, a truly blank stare, I knew she wasnt focusing on me, she kept calling for me but looking right at me. She only recognised my voice. What a horrible moment. She moaned and cried for me for a few last time, even mouthed it and then she was asleep. I untangled myself and gave her to God and to the sea of doctors in green before me.
They repeated a montra I have heard manytimes since having a kid. “its worse than it seams, she wont remember any of this, its gonna be alright” At that moment in space and time there are not reassurances of anything, only my belief that God was watching over my little girl, whether we be in the USA’s or in Germany.
I let a few tears escape as I headed back upstairs to wait it out. A frazzled American crying wandering the halls of a German hospital is not a pretty sight. I’ve been there, last month actually, done that.
So once in my room I took my phone and headed to the balcony. We were sharing a room with an older teenager and she was sleeping.
I called Jim, filled him in and made a few requests. Please put the chicken I was thawing back in the fridge. Call my mom and let her know what is up and call our Tricare liason to coordinate for the next day. (Ironically we were scheduled to be at this particular hospital the next day for a routine EEG for Carmen and they needed to know that we were already there.) He did, and asked me how things were progressing. I informed him that she was in surgery, it was horrible but I couldnt expand more on that for the time being. I needed to keep what threads I had left tightly wound for Carmens sake. I couldnt fall apart just yet.
I sat down and started writing (as my form of therapy) and waited. It was an hour later that the doctor came in and told me she was OK. He kept going on about what the procedure was like and all I wanted to hear was that she was alive and well. She was (deep breath), unfortunately the necklace had already passed into her bowels/intestines and they were unable to retreave it. I asked about twisting up her insides and he said it wasnt likely because the part they worry about the most is at the opening of the stomach to the bowels, if it makes it past there then we are in the clear, so to speak. She should eat alot of fiber and fruit and I get to go on poop patrol. Fun times. She was still sleeping and would wake up downstairs in an hour or two. I immediately asked to go and see her, he agreed and down I went.
Finally seeing her was a huge relief. Like I couldnt believe anyone, I had to see her with my own eyes that she was alright and breathing. She was out, drooling on the bed. She was hooked up to various machines with her hair plastered to her face but a more beautiful cherub ever? Nope, plain and simple the best site in the world. With my last concerns and questions taken care of by the unlucky nurses passing by our room, all is well for the moment.
There I sat, two stories under the earth listening to my little hellian snoring lightly, harmonizing with the machines and closing of doors. Seven hours into this adventure and many more to go. Praise God, my little one is safe and with me. ~Sept. 29, 2009 at 8pm

Sept. 30, 2009 at 12:30pm
A peaceful evening is all one can ask for, whether that wish will be granted or not is hugely dependant on people known of for their lack of judgement. Last night that request was far from answered.
Carmen came out of sedation around 8:30pm but wasnt coherant enought yet to be moved back to our room till about 9:30pm.
She was happy to be wheeled back up the elevator, but unimpressed that she still had to have an IV in her arm. That particular struggle would last the rest of our time in the hospital. She was crabby and awake, unfortunately for everyone around her. She wasnt coaxed back to sleep till midnight and then it was a rough sleep. She kept crying, moaning and calling for me. I spent half of the night on my cot in the corner and the other half laying beside her in comfort mode.
At 5am her internal clock turned on and we were awake. Fully awake, with all the giggles, talking and sqwirming that goes along with it.
She wanted to chat, read books and talk about everything, including a serious discussion about whether she had lost daddy or not. She wouldnt take it from me that he was home watching Rosemary, she was certain she had lost him.
As the morning progressed we found out that Carmen would go in for her EEG early, we were already there anyways. We needed to do bloodwork and an iron check. They sent a poor solitary soul to take her iron. I tried to warn her that Carmen wouldnt sit still for this, or even make it easy. She ignored me and went ahead. I ended up laying across Carmen trying to keep her from ripping out her IV in her persuit to stop the nurse from getting any blood from her. Not surprising, it was unsuccessful.
The next event was around 10am, we went for the EEG. This being her 4th one, you would think she would be cool with everything that goes into this, not so. She cried, whined and eventually ripped out half of the electrodes that were attached to her head. We finally got what we needed, but it took twice as long to get it.
Once back in our room, she gets settled down and they call us in for the blood work. Again I warn them she will fight, scream and do anything she can manage to get out of this. They bring in three nurses, really these people just dont listen, not nearly enough body weight to hold her down. I end up on her again, they didnt get a clean sample and I am sure I will have ringing in my ears for days.
In walks daddy and all is better. (I wish I had a little of that magic) they sit down for a chat, we set up a much needed movie and chill to wait for the appointment time to see the neurologist.
While we wait we are informed that they will have to take another iron sample along with a clean sample to compare it to the bloodwork to make sure everything worked out ok. I looked at Jim and told him that its time to jump in. He has never had to hold her, listen to her scream, or deal with the real terror that is on her face. From what Jim reported back, they new of her “issues” with needles and so surprised her with it before she could work herself into a lather. She still screamed after the fact, because it wouldnt be Carmen if a few ear drums werent damaged. But they got what they needed and for once I didnt have to be the bad guy.
We met up with our patient liason (translator), Helga, who I just feel in love with. She is funny, nice, understanding and fluent in both english and german... She was truly amazing, she jumped right in and even made plans to help me with the next steps in Carmens care. With her standing beside me we met the neurologist and discussed results and plans. We are going to up Carmens med twice in the next two weeks and if that doesnt get her seizure free we are going to try some new tactics. A little scary, but after what we have been through so far, its worth it to get her seizure free.
So come 2:30pm we were on our way out of the hospital heading home. Jim had to head to work, so he sped most of the way... I was too tired to put much fight into it and just gave up and closed my eyes. The girls slept most of the way, they needed it.
Well, another chapter has been written in the life and times of the Lawson Girls. Not a pretty one, or even a quiet one, but still some day it will be a funny side note. Oh, speaking of funny outcomes. Jim pulled me aside at the hospital and informed me that he had found the supposed necklace that Carmen had eaten. Yeah I know... I dont think she is a complete liar because I heard her gag right before she called me into her room and was actually on my way in there to check on her. So what does she actually have in her? Well, I am still on poop patrol so I should be able to tell you next week... not that you will want to know, not that I really want to know. kids.....

German Doctors

As you all know, Carmen has some issues. Well we finally met her primary physican the other day. She said the the first neurologist we met was close, but not a pediatric neurologist, which is what we really need for Carmen so she switched us. No big deal right? They just did a German EEG last month, simple deal.
Not really, the new guys wanted their own one and they wanted Carmen to fall asleep.. well you know her, she freaks out at the EEG's and she sleeps.. well never! So they said to expect to spend the night. I told them that I had another child and they were like... can you leave it at home? LOL... yeah... sure why not?
So, Monday morning I get a call that they want me in at noon for an EEG for Carmen and prepare to spend the night in case it doesnt work well and they have to sleep deprive her. Fun times.. let me tell ya. So I through her paperwork, my trusty gps and a change of clothes and off we go.
Now the new guys are in Nuremberg which is about an hours drive away, its in the east side of the oooollllddd downtown. So I got lost a couple of times, this is where I love my gps, it didnt yell at me this time, it just treated me like a stupid person and kept recalculating my directions everytime I took a wrong turn.
We get there and do the first EEG, of course she didnt sleep so they call upstairs and order us a room. After dealing with wiggly screaming kids, trying to understand broken up english with thick german accents, following nurse after nurse around an NON-AC'ed hospital I was ready to cry by the time we made it to our room. I called Jim to let him know we would be staying the night and he got to hear the whole thing through my tears (poor guy). The german mothers that we shared a room with where staring at me when I hung up and turned around.. Germans are totally cool with getting nosy in your business... so I learned... and they were probably wondering what was wrong with the freaky american in their hospital.
After things settled down I took a short video of our room and situation, its below.

The afternoon was rather uneventful. Other than my bright idea to bring my laptop so the girls can watch movies.. I forgot that my power source is an USA power source and doesnt work in german outlets.. so they got to watch about a movie and a half.

That night we settled down and I tried to get the girls to sleep. Unfortunately there were people in and out of the room, monitors beeping and it was 87 degrees.. no wind.. oh and i packed for cold weather because it was chilly when we left the house and in US hospitals its always on the cool side.. yeah note to self, plan to sweat when at the hospital.

The next morning we were woken up at 3am. Carmen and I played "go fish" for two hours before Rose woke up, we had breakfast and then Carmen went off to have her bloodwork done. That is a whole nother blog unto itself... lets just say that it got done. :0)

So Rose finally fell asleep while watching "Bob der Brewmeister" and yes that is pronounced how it is spelled... hahaha its the german version of bob the builder.

Carmen did take her EEG and she slept, I was so releived when the nurse told me she actually slept that I teared up.. (now remember i had been up since 3am, stressed out from trying to keep my kids under control so the other truly sick kids could rest, and the whole situation at large, oh and the language thing) We waited around for the results and our "consult" with the head doc of the hospital.

All in all, its the same prognosis that we had in the states. We keep doing what we are doing and hope that it helps. There is a 30-40% chance that she will never get rid of her seizures, that she will continue to try to control them, but for now we are just gonna pray that it will all work out.

So long long story short, we made it alive through that adventure. And if any of you write me and tell me its all an adventure and to enjoy every minute, I might have to get on a plane, come home just to slap you!! ;0) The last two days was not an adventure, it was a nightmare that I dont wish to repeat anytime soon. We got through it because we had to, but it doesnt mean I have to like everything that happens to us out here. But please enjoy my moment of zen.. I sure did.... (aka, the picture below)

Silly Hats, Sing Alongs, and EEG's

This isnt one of those funny, upbeat blogs. It's actually one of the harder ones to write. But I believe Carmens story in all its highs and lows needs to be told.

As you all know she has been diagnosed with Absent Seizures, it was actually a little more than a year ago this saga began. Well on Monday we had an appointment to meet with our German Neurologist. Unfortunately, the doctor was unavailable (something to do with his family, I didnt get it all because of the language barrier). We were "told" that we would have to come back next week to meet with him. The receptionist got into it with another woman... than another. It seemed they were arguing about when we had to make the appointment, or if we needed one. I wasnt sure. As it ended up, one of the ladies arguing was a tech and she wanted to give Carmen an EEG. Now, this wasnt part of the original plan, and Im not sure if its routine to go about doing this. Either way, we got dragged into a back room for just that purpose.

Now let me take you back about a year ago and you might remember Carmen getting her first EEG, it was terribly difficult on her, she had a seizure while in the EEG process. She screamed, cried and well.. it was tramatic. We were told first off that she was going to be sleep deprived, than no, we will just put her under, then no, lets just go for it. What a mess that was.

Now you can imagine what I was invisioning in this office after I figured out what they were wanting to do. I was unprepared (as you can imagine) for this kind of procedure. I didnt have time to prep Carmen as I usually do when we start one of these things. And well, honestly, I was in shock myself that they were going to do this in-house. With a child. I tried to explain that we had just one done last year. They asked where... OHSU, Dornbeckers... USA. When I said the states she rolled her eyes and said we had to do another one. Ok, I get that Germans think they can do things better than Americans, but isnt an EEG, and EEG no matter what language its translated into?

So we start this, Carmen screams her head off right off the bat. I convince her that the lady is going to make a silly hat for her and that mommy is gonna take pictures so we can show daddy how silly it really is going to be! Yeah that worked for about 3 minutes. Long enough for me to get these tragic pictures and then she started to cry again.

The EEG itself lasted about 15 minutes,. Applying the cap, then the electrodes lasted about 20 minutes. You can imagine why it took so long.

When they had her hooked up and where monitoring her, I showed her the computer and all of the wavy lines, and told her that her brain was doing that. That it was talking to the computer. I asked her what she thought it was saying, and she told me that it was saying that she wanted to get ouf of the chair and go home. Oh and that it wanted Gelato (at this point I had bribed her with anything I could think of, and we were downtown Ansbach so that would be easy enough to get for her). I truly thought she was a trooper at that statement, only a kid can give that kind of answer!

I was concerned that she would indeed have another seizure during this screaming event, as it was around the time for her normal dose of medication, and she was stressed. If she has a seizure the clock for her recovery sets itself back to zero. But she did great no seizures, and all in all she is getting better with dealing with these stressful situations. She still screamed her head off and could be heard blocks away, but she sat for the whole thing (last time we had to restrain her), and she was able to be distracted for moments in time by what I had to say (last time she was in her own little screaming, crying world and nothing I did or said helped).

The pictures are tragic, I know. And she does look a little funny with the cap pulling her skin back, there was a chin strap too, so that didnt help. But the single tear down her cheek just kills me, hopefully one day this will all be a blur and she will understand what she had to be put through.




she was placing electrodes in these pictures

Carmen was actually trying to smile in this one, how sad does she look?

Giving Thanks

Thanksgiving has come and gone, thank goodness. I love the holiday but the lead up to it is always daunting and all consuming. As I was scrubbing toilets Thanksgiving morning I was thinking of what I was thankful for. Home, Family, Friends... all the typical ones.. you might ask, what about health?

Thats a touchy subject since last summer. Carmens health is always foremost on my heart. She is doing much better, her blood work shows that we arent at the level they want her at yet, but she has stopped having the "leak through" seizures and her all around mental issues are getting better. She still struggles with her areas, but as we are recognizing them its easier to work with her to improve them piece by piece.

Since the middle of April she has not gone more than two weeks without a siezure of some kind. It dawned on me that its been a while since I had had to write her her siezure journal, so I pulled it out and checked. Carmens last seizure was in the middle of OCTOBER!!! Its been over 6 weeks! what a blessing. I was so excited to see that. God has his reasons and his timing, praise Him for all his blessings.

Rubber Gloves

So while at the Neurologist's this morning (we were there to get some much needed answers and reassurances that we were still going down the right road in Carmen's health) I discussed that she has a seizure every time we draw blood. They were surprised to here that.

Now from a Mom's point of view it isn't unreasonable to think that a three year old would have issues when she KNOWS that she is going to get poked in the arm and that will hurt. The poor thing has had her blood drawn at least 6 times in the last 4 months add to that an MRI which she was put under for AND an EEG that, well it was traumatic for everyone involved.

So keeping that in mind, whenever she see's someone "glove up" she starts to freak out... surprised? I'm not.. I haven't taken her to the dentist for just that reason, its gonna be awkward enough for her the first time, but add a phobia of rubber gloves to the mix... fun times...

Anyhoo, they recommended that I try desensitizing her. SO they gave me a handful of gloves in a rainbow of colors to wear around the house so she can see Mommy wearing gloves and it isnt scary. To top it off they handed her a nifty pair of purple ones!! Excitement filled the air, she held them as if she was holding a scorpian, too funny... but by the time we made it to the car she wanted to wear her cool new pair of gloves. I put them on her and she yelled at the top of her lounges "HA HA I AM A DOC-TOR, WEEJEE, WEEJEE" she smiled sweetly at me and decided that the cars out the window were more exciting, crossing her arms on her lap... still gloved.

Somewhere on the way home the gloves were removed but once in the house she insisted on putting them back on. She happily ate her "chickin nugget n jo-jo's" with them on. I left to get PJ's for Rose, and came back down to see Carmen slap Rose with her gloved hand yelling "No, my doctor gloves, not yours!"

Well there you go... a phobia fixed!!! at least I hope so. We will find out late next week...