Now my daughter was so on the last day held at the school in the University Hospital of Essen, hovering, thanks to sedation, liver biopsy contrary.

03.-07.05.2014 Hospital

This stay was a trip for learning patience. And I must say ... My daughter and I would actually now be Zen master ...

When we arrived, we were transferred from the Gastro on the cloud formation and climate change, because everything was tight. No matter where we sleep, we thought along main thing. Then we were taken to a gorgeous room with a balcony, where I the "trunk" only once cleaned out and was subsequently settled completely. Half nothing, change bed linen, had to be done yet, and I beamed .... It was not a normal folding bed with wheels, but a very nice Murphy bed.

No sooner had we done that a family came to with a little girl and I went only once to the balcony, to make way and let arrive the family.
Since the nurse had to feed the girl, both parents came to me on the balcony and we started talking. Incidentally then fell "suspected meningitis ..." and I stood there, staring at her ... I had heard correctly now?
I went to the sister and asked if the diagnosis should definitely exist and whether they would be there realized that my child is held immunosuppressive because of AIH. (Immunosuppressive means the immune system is deliberately slowed down and going down to make it the liver not attacking) The sister was pale and disappeared immediately to the doctor ... after a short time then my daughter and I move had to move ... In a small cubbyhole with a Lebanese family unit. So everything back out of the closet, bed and pull off in the other room. There the fellow patient was a 9 month old baby hanging on as many tubes as I have never seen it.
Now the obligatory cot came to me where I asked myself all the time, where in God's name I should set it up to be able to sleep? In the hallway? Edgewise on the wall?
The day passed, I had good company by the parents of the girl from the first room and we were tired. My mouse dare to take anything more after 10 and after 2:00 a.m.  nothing to drink, since the next day the biopsy was performed.
We applied and exhausted tired there early and were hoping for a quiet night ...
I say it this way ... My daughter had at least sedation to sleep the next day .... The whole night was fair in our room ... All nose long came a sister and had zuppeln to the poor baby, only antibiotic , then food via catheter, then flush anything other drugs, then rang the heart monitor ... And every time the baby saw the white clothes, it started screaming ... No wonder after already 2 months KRH ... to the little mouse then was reassured and slept again came the next sister shaking it... that night the baby should get drugs through the CVC (central venous catheter) and it get blocked ... so this poor worm got a new one 3 times that night
... and that did me already hurting from listening ...... so we all came to sleep only at 6:00 a.m.  ... but after our eyes hardly closed the morning shift of the station came and introduced herself, then came the cleaning lady and immediately afterwards we had to keep ready, because we do not know exactly when it was our turn.
The puncture itself went very quickly. I have been with my mouse, until she was sedated and allowed less than 5 minutes later, right back to her, where she slurred told me she was hungry and could already eat.
Then we went back to our room and my angel had to remain lying on their sides, with lead pad on the puncture site. She slept three hours the "noise" from begging barely awake after eating and drinking. Of course, you spend the day awake beside the bed of your child as mother, which must not get up. Employed blood was taken, heartbeat checked, changed drip, measured blood pressure ...
Completely exhausted, we prepared ourselves for the second night. And again we were disappointed. Sleep? No chance ...
I think they left us home only the next day, because they felt sorry for us.
I told the doctors my mouse could also lay at home, I would maintain, nurture, bloodwork would be okay so far, that we do not have to fear any internal bleeding after puncture ... And we were allowed to go home ... 3 days without sleep behind us ...

GOT 22
GPT 50
GGT 182

At home my girl was not allowed to ... Save was announced. No sports, no movement, best lie, otherwise it could cause them to bleed after the biopsy again.

16/07/2014 hospital

On 15.07.2014 we made a trip to Steinhuder Meer, so my girls at least from time to time came out in the summer holidays. The day was great and we had a lot of fun driving an eElectric boat. Then we went out to eat and gone home because our girl was totally exhausted after a short time.
In the night of 15 to 16/07/2014 at 3am was suddenly my child by my bed. "Mom, I have so stomach pain" So I got up, gave her Iberogast, always assuming that is once again their normal problem.
I brought her back to bed, stroking her forehead and measured fever (36.8 ° everything Okay)
and then walked around 4 am back to my bed.
At half past 5, a cry of "Mama? Please come over" so I went back to the child room, where my girl was writhing in pain. The stomach pain had now become even abdominal pain and nausea and she got worst diarrhea. I measured fever (37.8 °) and was not sure if we would get well alone under control ... At 6:30 then was added vomiting and I realized it is serious. Fever (38.9 °) I called the children's hospital in the neighboring town and said, that we would come, put on my girl and she shook my arm to the car. My man with the bucket in her hand tightly behind us.
In the car she leaned exhausted to the frame and said no more sound. Halfway through the journey they squirmed miserably together and could no longer stand upright, those she had colic.
Hardly arrived at KRH I helped her out of the car. Deep hunched over she made 3 steps and then collapsed in my arms. My husband ran and got a wheelchair and we were told  to go into the treatment room immediately. The doctor and the nurse would lay her on the couch, but it was was not possible for 30 minutes because she just curled sitting in a  wheelchair and nobody was allowed to touch her because of her pain. Eventually we got her on the couch and realized their consciousness a tarnish.
Immediately there was a drop of fluid and painkillers. Fever was measured (41 °) and she got to a monitor. Many tubes with blood were immediately sent to the laboratory and my girl got the infection station in isolation.

Since her fluid and painkillers were massively administered stabilized her condition minute by minute and she only wanted to sleep. We said goodbye around 9 am and were briefly resting a bit ourselfes, because the night was a bit short indeed. At 12:00 p.m.  I was back on station since first blood results were back again and was told that my girl should be driven by ambulance to Essen in the University Hospital the next day. The GGT had risen from 182 to 397th

The next day we went by ambulance to Essen. Of course, I stayed with my girl. Nothing again was free, we came back to the cloud formation and climate change and everything was fully there, my girl had to lie on the floor for 4 hours. At least she was stable. Then the doctor came and examined my mouse said "Actually, she should have a private room", but of course, due to the overcrowding it was not possible. Finally we came to a 4 person bedroom and, although yes was suspected gastrointestinal virus. After a night without sleep (thank to the nice other mother in this room who yell her child the whole night) we could go home the next day, as they demonstrate the Adenovirus and EBV (Ebbstein-Barr virus) with mononucleosis could and contrast anyway can do nothing.
So we shook our child who was still completely exhausted homeward. Glad not to have one more night to stay there.

GOT 119
GPT 240
GGT 346

At home nursing and ward was announced again.

On 22/07/2014 new blood control doctor

GOT 35
GPT 93
GGT 268

Apparently struck the high cortisone at last, the values ​​decreased slowly.

Until 04/08/2014 I used my mouse healthy and brought her back on her feet, because of the 08/04. was her birthday and a trip to the Phantasialand was planned.

We left early at 9 am and went to the park. The mood was good, being apart from the usual pain and even so it was a great day driving with laughter, sweets and lots of carousel.

On 08/06/2014 my girl then began to sniffle and cough, cold welcome ...
Of course, she was thus only times again not good and I had to maintain healthy again. On 0908/2014 we took a trip to the Wolf Center Doerverden because our girls (cold or not) wanted there necessarily indicate. So she came up with pillows and blanket on the back seat and rested until we arrived 2 hours later. Then we ran with a lot of breaks and sit about 3 hours around there and then packed our snoozing girl completely done again with pillow and blanket on the back seat for the ride home.
So the summer holidays went by.

On 08/20/2014, the first day back in shool, a visit to the outpatient clinic.
On 08/19/2014 I received a letter from the Health Department "Congratulations, your child has salmonella" * irony *
Salmonella? Great, THAT we did not have before ...

In the check-up in the outpatient clinic time extremely much blood was taken because they wanted to investigate whether our girl has a genetic defect of the immune system. Even with immunosuppression it is easy to often sick and vulnerable.

Now we sit here and wait for tomorrow. As our lives will change from tomorrow? Will it change at all?
If this diagnosis still happen? Or is this at least spared?
What does this mean for us? And if it is not like THAT, why our child is constantly sick?

Questions, questions ...

We use cookies on our website. Some of them are essential for the operation of the site, while others help us to improve this site and the user experience (tracking cookies). You can decide for yourself whether you want to allow cookies or not. Please note that if you reject them, you may not be able to use all the functionalities of the site.