Lumbar Puncture

I will go ahead and warn you that his will be a long post. It will take me quite some time and tears to write this post. Thank you for following and taking part in our lives. We hope that by reading what is going on in our lives that it can help you some where in your life.

Today we went back to the hospital for Evelyn's Lumbar Puncture (LP). Daniel and I are not fond of hospitals, so when we woke up this morning....lets just say we were not excited. While getting ready this morning I found myself remembering our first visit (for Evelyn's MRI). I remember being extremely hot and decided to wear short-sleeves today. Then I found myself tearing up because I actualy knew what to wear. Like we were regulars or something....I really hope we don't become regulars.

So this time instead of being in the main Presby Hospital, we went to Hemby Children's Hospital. We took the special elevator which was really cute and full of mirrors. Evelyn was facinated with the mirrors. Upon ariving we waited for about 30 minutes. At 9:30am we were called back in the Pediatric Inensive Care Unit (PICU). The nurse began to ask questions about Evelyn and family history. Then she began to talk about the medications they were going to give Evelyn when it came apparent that they were going to perform the wrong procedure on Evelyn. I'm not exactly sure what they were going to do but I think it was an EEG or ECG or something. After correcting the nurse, she had to go talk to the Neurologist and get the right orders from her. Of course this took almost an hour.

While waiting on a fax of what was to be performed on Evelyn, the nurse decided to tackle putting an IV in Evelyn. It took two nurses and Daniel and I to hold her down and keep her still enough to get the IV in. They ended up having to do it in the bend of her arm. Unfortantly it ended up being her thumb sucking arm...ahhhhhh. Due to the IV being in the bend of her arm, they had to put a board on her arm to keep it straight. She really didn't like that.

Finally at about 10:30am the doctors new what they were suppose to perform on Evelyn. One nurse and two doctors came in to get Evelyn ready for the procedures. They first hooked her up to some monitors which required her to lay in the hospital crib...she didnt like that. Then they gave her some "happy juice". Last time they gave her it before her MRI it worked great. This time it didn't work at all. Then they gave her some pain medication. Finally they had to start giving her the drugs to put her under so they could get her to calm down before we left. They ended up having to give her four times the emount they had planned to get her to calm down and go to asleep. She fought until the last second....she's my strong little girl.

We went into the waiting room and I was just balling. Its so hard to watch your child to kick and scream while you hold them down. Sitting in the waiting seemed like such a long time. I know it was probably only like 30 minutes, but it was horrible.

They finally came to get us while Daniel had just left to get us a drink. So as I walked back the nurse warned me that they were unable to get me before she woke up. Earlier I had explained to them that last time she woke up without us and freaked out. So of course when I finally got to her she was screaming like crazy. She had just woke up, in this crazy hospital, with people she doesn't know but knows they just made her hurt.

After her crying, screaming, hyperventilating, turning beet red, she finally fell asleep in my arms. She took about a 45 minute nap in my arms before she woke up and had a bottle. Evelyn was finally beginning to recover when the nurse came in and gave us some bad news....the blood they took while she was asleep had clotted. They needed to take more blood. So once again, we had to hold Evelyn down while they drew what seemed to be a crazy emount of blood. She screamed, kicked, cryed...it became unbearable for me and I had to take a step back.

After that we asked for the IV to be removed. All I can say is "Way to much tape". The removed all of the other monitors and Evelyn was free for the first time in 3 hours. We got to hold her with out tangling anything. We were able to walk the halls and get some giggles out of her.

Finally we were discharged around 2pm. We are glad to be home. I really think that was one of the worse days of my life. To watch your child screaming helplessly and all you can do is just watch...its horrible. I just can't do that again....I hope I don't have to do that again.

We should have the test results back on Thursday. We get to wait again. I think that can be the hardest part. You have time to sit and dwell on it. You think about everything....the good, the bad, the worse. We do know that the spinal pressure was elevated. A normal spinal pressure is 10 or 12. Evelyns was 22. The nurse assured us that it wasn't extremely high or they wouldn't have let Evelyn go home. But to me that seem high....its double. So the removed some spinal fluid to get her pressure back to 10. Hopefully we will know more on thursday.

Once again, thank you to all our friends, family, and Kinetic. You all have been amazing. Hopefully we will get some answers from the tests they did today.