Home stretch

Yeah!!! We actually got the surgery today to have a new shunt placed. We had a really really bad (this is an understatment) night last night, but today was great I got here with Nicholas at about 1:05 and within about 10 minutes they were here to transport Ava to the operating room prep area. My mom was a huge help with Nicholas while she got checked in and then me, Eddie, Nicholas, and my Mom were able to have a little time together. After Ava was through with Surgery her Dr. came to let us know it went really well and he wants to follow up in about 2-3 weeks. We are hoping that we can avoid that dreaded "bump" this time by having her at the setting with the most drainage and doing a really good head wrap for the next 24 hours. That would be awesome for her to not have to deal with. Right now, I just layed her down and am waiting for her to stop fighting her sleep. hopefully tomorrow will go smoothly. My mom will come from her hotel room with Nicholas in the morning and me and him will head back to town for school/work. My mom will be discharging Ava and taking her home to her house and as usual, Ava is okay to get back to daycare after that. There are no precautions or changes in lifestyle that need to happen after these surgeries. We are on our way!

Sunday

Wish we were at the party last night, at Church this morning, and at Life Group and Amy and Chad's new place later...that would mean we were done here.


Eddie and Nicholas came to see us yesterday....sooooo AWESOME. Me and Nicholas went out to play on the rooftop playdeck here. We borrowed some movies and a puzzle and then Me, Eddie, and him all went to get some dinner while one of the aides sat with Ava. I was so happy to be able to see both of them.

Ava didn't have a great night last night. She seemed to have a hard time sleeping and was nauseated this morning and then had to have her 2nd IV taken out, which means she will have another one placed this morning (only to be removed and replaced with another during her surgery Monday). I think when they get here I should take a coffee break...I can't stand to watch that again. There are still no further indications of an infection. The Dr. came in this morning to pass that info along and let me know we are on for tomorrow. We should be able to get out of here Tuesday afternoon if all goes well.

Awake...

It's 2:30am and we are awake, this is something new! Im soooo sleepy. Ava is doing alright. She seems to be throwing up in the middle of the night more often than during the day and I cannot figure out why. She is on anti nausea meds as needed which I am staying right on top of. I feel bad for the little peanut. Her nurses/med aides had a blast playing with her today she was really fun and feeling good. Tonight was peaceful and she was asleep at her normal bed time for the first time since Saturday. Ava usually sleeps really well from about 7:30 pm until morning, that hasn't been happening for the last month though. When she isn't feeling as good, she wakes up, usually once. Tonight is special though and she has been up twice and threw up on me just to say hello. :) Anyway, thought she would want everyone to know about that special accomplishment...goodnight(hehe).

Long week is getting longer...

So I just found a draft I was trying to type up Thursday evening and got too tired to spell words. I figured due to what it said, I had better follow up. We found out thursday that the doctor wants to wait until Monday to do the surgery instead of tomorrow. One of the cultures (he very first one) had some growth, which is not great and he wants to rule out infection over a couple more days. I would say more if I weren;t so tired, but since I can't catch some zzzz's and I need to try to, that's about all there is to say about that.

Back again...

Ok, so I didn't post yesterday because there was really no big news. Ava and I got to hang out all morning becuase I had my late day at work. I sure had fun playing with her and she had slept good. She was happy and laughing when I left for work. I came back after work close to her bedtime so that wasn't great. She was feeling a little sick and fussy during the day and then started feeling better in the afternoon. We noticed there was a little drainage coming from her wounds and were worried so we had the doctor paged. Later the nurse let us know not to worry because her external shunt was still getting fluid out as needed.

Ava slept great last night, she went to bed a little after 8 and didn't get up until her nightmare came true and they came in and woke her up to draw blood!!! ARE YOU KIDDING ME...who draws a babies blood at 6:30am??!! I don't know what they were thinking, my poor baby. I was about three minutes behind them. I had left to get some breakfast and came back to them stickin' her. And in the arm with no vein too, so they had to do it again. Seems Ava only has one spot on her body to draw blood and that is her right arm (guess I'm supposed to remember that forever and stick a sign to her:) HA! After that fiasco, her Doctor and his huge team came-seriously, right after. They were concerned about the fluid that had seeped through her dressing and they were upset that they hadn't heard about it (the Nurse had paged and made a judgment call when the Dr. on call didn't call back-but she didn't follow through and page them again). I was a little upset about how all this was going, but they decided to change her dressing and I like the new way it is wrapped better.

That was not a great start to the day and for me, and sitting at work, it just got worse. My mom stays with Ava during the day while Eddie and I are at work, this evening when I saw her she was happy and feeling like Ava had a good day, but from what I learned from her earlier email, it didn't sound like a good time. Ava threw up every time she ate and seemed uncomfotable for a while. Eventually they decided to put her on a anti-nausea medication and she started feeling better. They also made a few changes to how all her stuff is rigged and what needs to happen in order for her to be up out of bed and hangin' out with us. By the time I got back here, Ava was doing great and seemed to be feeling better and BONUS, I still made it in time to relax together, snuggle, and put her to bed. If only I could snuggle with my guys too:( I really really miss them. I can't wait to see Eddie tomorrow and Nicholas hopefully the next day. I haven't seen either since Monday if I am remembering correctly.

Today was terrible for me, I guess it wasn't as bad for them as I thought but I was a broken person, aside from everything else I can't help but worry about all of my other responsibilities. I am already working through my lunches this week to make up for some hours last week and now I found out that I have to get a couple more extra hours in before her Surgery! Really-could this week get harder. Im already commuting to see my littlest baby in the hospital and now I get held up even later. Most people wouldn't even be at work at all--including myself if I had any other option or more days left available to take. Im so glad for all the help we get. Grandparents ROCK!! Both sets help us stay sane with all of their help. I've even been offered meals and cleaning in order to help us cope and that is aside from all of the support, good listening, compassion, and prayers. Thanks so much everyone! Im so glad to have God as my solid rock to stand up under and so glad for all the other solid rocks He's placed in my life. Each of you is a gift. Usually I can do this...I'm on "autopilot" as me and Eddie now say, but right now, I can't do it alone anymore. I need you guys and I need Christ who never leaves us even though we constantly forget to rely on Him.

She's in the clear....so far so good:)

I'm glad I had the time to post some more current pics. If I have time I will post some camping/4th of July pics too.

Ava had a good day today, she was a little bit fussy and is still on pain meds and sleeping a ton of the day. We still don't have our surgery set up so not sure which day it will fall on if she is cleared of any infection this week.

They took blood today and checked her CSF (cerebrospinal fluid) and so far so good!! There is no sign of infection yet (she will be checked the next 2-3 days as well). Her sodium level is a little off now that the shunted fluid is being removed instead of drained into her tummy like when the shunt is internalized. Her little wrists are all swollen and puffy.

All in all, the doctors today thought that Ava seemed to be progressing well and they weren't expressing any additional concerns. We'll keep you posted...

Been a long time...

Hi everyone! It's been a while, I see that our last post was about the same time as I accepted my current job. We're sorry about that. The family has been through a lot since then.

We are looking for a house right now since I am back at work and we sold our first house in preparation for the worst with Ava. I have been at my job since November 24th, please pray for us about me keeping my job. I am not covered by the FMLA until my 1 year anniversary and have already missed a lot of days, almost all of the days that were originally allocated to me...Eddie has taken off quite a bit as well.

Shortly after I started we realized that Nicholas has a very bad peanut allergy and he had two really bad experiences with that within 2 weeks. He also has lots of outdoor allergies/asthma issues like Mom and Dad. Since we have gotten tubes in his ears for ear infections and he is taking meds for allergies/asthma he has been great and only has been sick once since Ava has joined us. This is a tremendous blessing since we are dealing with so much time off for her.

About a month after I started at my job, Ava ended up getting a shunt placed in her brain which is a length of tubing that takes the fluid that collects in her brain that isn't supposed to be there and puts it into her abdomen so she can get rid of it. In June she had to have that shunt explored for a malfunction after noticing some symptoms that she was having. Turns out there was a kink in the tubing and it created some other problems as well so these pieces were replaced and she was sent home. July 6th, she had tubes placed in her ears since here ear is so tiny and makes it hard for Dr.'s to see if she has an infection. (She had 3 really bad ear infections by the time she was 1). This week, she has a lot more of a fluid collection that we could see externally and her Neurosurgeon planned to do another revision Monday July 13th but yesterday (Saturday night) she sprung a leak. There was a lot of pressure from that fluid collection and some of the Cerebrospinal Fluid squirted right out of her head from a pinpoint size area. Actually a lot leaked out. Because of the infection risk we had to get her right in to the hospital last night.

She had surgery this morning to take out her shunt now that it has been exposed to the outside world. In this case, we all have to treat her as if she has an infection. Her shunt tubing is outside of her now for a few days while they check for infection over the course of the next few days. If we are for sure clear of infection, then her new shunt will be placed either Thurday or Friday if all goes as planned. If there is an infection, she will get a full course of antibiotics and have her shunt placed after another week passes. My mom is staying with Ava during the days while I commute to work and I will stay the nights at U of M. Eddie is gonna be mostly in Lansing with Nicholas and his parents are also helping out with Nicholas.

For those of you who don't get to hear about or see Ava much, she is doing really good aside from all of this. She is developing really well and loves to be around people and get attention. She is still seeing a therapist who works with her on development of different skills and is progressing nicely.

We really are hoping that she doesn't get an infection and we can go home Friday or Saturday. Please pray for us, we have a lot going on and always appreciate it. Thanks, hopefully now that I have a little more time on my hands when I am out here, I can update this site a little better. I will see about getting some current pics too, looking through these, we realized that these pictures don't even resemble her anymore:)