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.

Neurologist

Yesterday we went to see an neurologist and didn't get good news. On Monday Evelyn will have a lumbar puncture. They will be testing the pressure in her spinal cord as well as doing some blood work.

I will be perfectly honest....I'm completly freaked out. Daniel and I feel like we are on a 3 week episode of House. Where is our House? At this point the neurologist doesn't think that the virus caused Evelyn's eye to turn in. She really thinks there is some underlying cause such as to much pressure or a nervous system disease.

So basically we will be doing test after test to start ruling things out. Right now that is the only way to find out what is going on. The doctors just don't know which is really hard on us because you expect your doctors to know what is wrong and to cure it. Not knowing whats wrong with our 1 year old daughter is killing me.

So we ask you to pray for little Evelyn on Monday...I'm pretty sure this procedure will be painfull. Pray for Daniel and I to have the strenght to get through this. And most importantly pray for Evelyns Doctors and that they will be given wisdom.

Crazy Eyes

So I'm finally getting around to posting again. With work and doctors visits, this week has been crazy. I finally got some pictures of Evelyn and her crazy left eye. I have to say the pictures don't due it justice. It looks much worse in person. Lately, Daniel and I have been calling Evelyn Crazy Eyes. Daniel perfers to call her cross eyed, but I don't like that. Below are some pictures of Evelyn this week and her crazy left eye. You will probably notice the rash on her face. Apparently, Evelyn's body decided to go though all the symptoms of a virus...first runny nose, cough, eye crossing, and now rash. Hopefully it will be gone in a couple of days. Lets just pray that she doesn't do this with every virus she gets.

Eye's Recap

Since we are near the end of the week, I thought I would recap on how the last two weeks have gone.

In the last 11 days Evelyn has seen some kind of doctor 8 times. We have visited our pediatrician 3 time (one-year check-up visit, cold check-up visit, and blood testing). We have also visited at ophthaimologist 4 times where she has had lights shined in her eyes, eyes dialated twice, and all kinds of 'fun' eye stuff. And finally, to Presbyterian Main Hospital for an MRI.

The poor thing is just tired of seeing doctors, but there is only more to come. Evelyn is currently taking a steroid and antibotic drops for her eye. She will continue to take these until the redness goes away (which its begining to fade). We have begun patching her eye for short periods of time. The doctor would like for us to try to do this for 2 hours a day.

Next week we go back to the opthaimologist to check on her progress. We also are going to see a neurologist. Hopefully we will also get good test results back from the blood they took today.

Once again...thanks to all of you for praying for us and thinking about. We will continue to update you on Evelyn's progress.

Red Eye

Yesterday we went to see the eye doctor again because Evelyn's left eye is now red in the outside corner. When the doctor stepped into the office and say Evelyn's eye...her reaction kind of scared me. Apparently its red on the eye muscle and she doesn't know that is causing it. Its strange that it became red after her eye crossed.

So we now have evelyn on steroid and antibotic eye drops. She gets it 4 times a day and we get to see the eye doctor every day until it clears up....ahhhhh. I'm getting tired of seeing doctors and it looks like this is only the beginning. The doctor wants Evelyn to have some blood work done to make sure nothing is out of wack. She also wants her to see a neurologist if the redness doesn't clear up.

I though when we found out that Evelyn didn't have a tumor that we were ok...just maybe an eye patch or something. But I guess I was wrong. The eye doctor was so stumpt by her eye yesterday that she called her partner that has been a pediatric eye doctor for 21 years and he said that he has never seen this before. They resorted to looking on the internet.....I can look on the internet!!!!!

So it looks my daughter is going to be a human lab experiment until they resolve the problem. Please pray for Evelyn as I'm sure she is confussed and tired of seeing doctors. Also, pray for Daniel and I as we deal with not knowing whats going on with our precious little girl.

Negative MRI Results

Can you believe it...we already have the results and they were negative.

We had the MRI today and spent a couple of hours in the hospital. Our pastors Daniel Hodges and Joe McGrew had lunch with us and kept us company at the hospital. Thanks Guys! All went well and we are home.

When we were leaving the hospital, the nurse told us that Evelyn would be tired and cranky for at least the rest of the day. Well, that didn't happen. Evelyn fell asleep in the car ride home but woke up ready to go. She played and talked until about a few minutes ago. So she went from 2:30pm to 9:00pm without a nap. Wow! She's done this a few times before but only when we are out at a gig for my husband, not at home. She is finally tired and sleeping.

The Jackson's game over this evening and brought dinner....thanks Jacksons.

It's amazing how much better I feel knowing that our little daughter doesn't have a brain tumor. Now we just have to see what we can do next to help her eye recover. We go see the doctor tomorrow to look at the redness in her eye...hopefully we can get some questions answered too.

Thanks to our family, friends, co-workers, Kinetic, and hospital workers for all your support and prayers. Evelyn seems to be doing fine for now...we will keep everyone posted on how her eye heals.

MRI

Evelyn will have her MRI tomorrow at noon.  We will be at Presbyterian Main at 11:00 am and we should be home that evening (it's an out patient procedure).

Thank you to everyone...family, friends, co-workers, and Kinetic for all your support and prayers. I will keep you all posted on how tomorrow goes and the results.