A Rough Week

Well, I thought I had fallen behind on blogging a few weeks ago... now I'm definitely behind. With good reason though. The last few weeks of our lives have been complete turmoil to say the least. Over Labor Day weekend Emma had a little fever and was acting crabby, uncomfortable, etc... Just not acting like herself. She then told me that her back hurt, and I didn't like the combination of a fever and her back hurting. (She also threw up her dinner.) So, I took her to an urgent care, being that it was a holiday and her doctors office wasn't open, which actually wound up being a blessing (with trying to beat time once we found out what was going on.) Turns out after several hours at urgent care, getting admitted to an E.R., tests, blood draws, catheters, etc... She did have a blood infection which had also infected her kidneys and the blood infection was quickly spreading and shutting her down. Time was critical. Typically I'm not the type of mom that rushes my kids into the doctor every time they cough or sneeze, but something about this just didn't feel right to me, so I'm glad I made the decision to take her to an urgent care on the holiday. Especially considering she was a totally healthy little girl and had been to the doctors office once outside of her standard wellness visits.
The first day (At urgent care) we were playing around a little bit while we were waiting for the doctor - I was trying to keep her mind occupied. She's not a huge fan of doctors offices.

So, we played with the doctors gloves while we were waiting!
They could only do so much and eventually referred her to the ER.
We went to the ER and that poor little thing was put through a lot - blood draws, catheters (yes, multiple.), tests, etc... and we were admitted. We were moved up to a room on the pediatric floor around 11 pm or midnight.
This is our little princess - with her lamby (her favorite stuffed animal) Daddy's iphone playing one of her favorite Lady Gaga songs, a gatorade and her favorite little blankie.

Making herself comfy,

 
Staring at Daddy <3

Daddy makes everything better.

And... crashed out. Long day.

Within 24 hours of being at the hospital they determined that she needed a higher level of care and transported her (by ambulance) to Lutheran General Childrens Hospital (outside of Chicago) which houses a pediatric kidney specialist. Luckily we recognized it fast, acted quickly and everything was moved along quickly, which ultimately is probably what saved her other organs. She got pretty sick moving into the next 48 hours. She was in a lot of pain with her kidneys and it was heartwrenching to see as a mom. I wished I could do anything to take that away from her.... and you feel so helpless not being a doctor. I think the doctors even felt a little helpless at one point. The antibiotics weren't working, the infection levels were going up instead of down, etc... which is not what they had anticipated after starting her on the IV antibiotics, getting her hydrated, and all of that. It turns out we were working against a few things - not only did she have the blood infection, but it appears she also has urine reflux (where it backwashes into the kidneys and can cause issues) and after one of the CT scans they also found a large mass creating blockage to one of her kidneys, which was creating toxic build up as it wouldn't let it through the filter out. She had a few procedures done, lots of CT scans,
She did lots of sleeping....

That arm is where her main IV line was hooked up initially. They were pumping her full of fluids, antibiotics, occasionally a little something for pain if we were lucky. The problem is that the majority of pain meds have to be broken down by the kidneys and hers weren't functioning well as it was. So adding  more to it would have put more stress on them. Taking into account with little kids you are fairly limited to begin with on what they are able to have... it was really hard. Because she truly was in so much pain sometimes. There were times that I would get really angry. I figured they HAVE got to be able to do something for this poor thing, she is in so much pain. I can not stand to see her like that.

Lamby went through it all with her. She was terrified any time a nurse came into her room (I don't blame her, after the 5th catheter and god knows how many blood draws) They had to monitor her vitals hourly, so most times lamby had to endure the tests first before she would. He even got his own wrist band.

After several days of not eating, they hooked her up to a TPN & lipids IV, which was giving her the vitamins, nutrients, fats, and calories she needed. In order to do that, they needed her IV in a larger vein - so from that point on she had this on her leg:

Now, I don't care who you are... you probably understand how difficult it is to keep a 2 1/2 year old from walking, or standing. So that was a challenge in itself.
We wound up being there for a total of 9 days. Andrew was trying at the beginning to keep as much normalcy in Drews life as possible, so that he didn't feel completely shuffled around, and he would go home at night and spend the night at home with Drew, in as much of a normal routine as possible. However, that wound up being when most of everything went down. That's when the kidney specialist would come around (yes, weird hours... I know. There were nights that he would come wake me up in the hospital room to go over her test results from that day.) And it was hard on Andrew to not be there to hear the news first hand, or be able to ask questions directly to the doctors, etc... They would also come and drag her out of bed at 5 am every morning to draw blood, and after the 4th or 5th blood draw I couldn't emotionally take it anymore. She was terrified, traumatized, you name it. It was heartbraking to have to help hold her down as the nurses did that to her and she would look at me like 'Why are you letting them do this me???' So I had to enlist Andrews help there on out for those things.
She was still a fiesty little thing though. They learned quickly, and always came prepared with a team of 5 or 6 nurses to hold her down for those things, because nothing less would suffice.

Eventually we had a team of specialists working with her (a kidney specialist, an infection specialist, a eurologist, a pediatrician...) and they were able to begin to tackle it.
Things started to look up. She did a lot of coloring and playing with stickers - - and LOTS of movies!

Her brother came to visit and give hugs

And daddy would make her smile =)

listening to some songs on the iphone with dad.

daddy could even get some giggles out of her occasionally.

More visits from Drew

Sleeping with all of her buddies. I would look over at her and she was just surrounded by all of these stuffed animals that were sent to her by people that care about her. This little girl really had so many people pulling for her, and praying for her, and we appreciated all of them!

playing with princesses

beautiful flowers to warm up our room.

They had an outside deck, once she was well enough to go out there, she was able to get some fresh air.

and we planted a little plant!

The child life program was great - they had a huge playroom with every kind of toy imaginable for the kids to play with, they had 'animal therapy' and brought dogs in occasionally for the kids to see and pet, they had different activities depending on what the child is able to do.

Because she was on an IV, everywhere she went she had to have that IV pole/pump. That was a little bit of a drag. But a few days before we went home they did a procedure to put in a PICC line which is more of a permanent IV line so that I can continue to administer her IV antibiotics at home.

She was released a few days ago and can now be at home. Yay!!!

In a few months, once her kidneys have had a chance to heal, we will begin some tests to figure out what needs to be done moving forward. But for now, I'm just happy to have my baby home. And I'm happy that we are all home again... I think Drew is the happiest! =)

Even though I felt bad for him during all of this, I know he was really spoiled, by everyone that had him! He had sleep overs at my parents, went to the store (on a few occasions) to pick out toys, went shopping with Mimi, came to visit his sister, got to hang out with some of my moms friends who spoil him to death... so, he definitely was not neglected. But, I am still glad to have him back.