A Day In The Life…

We’re in our last week of being in the hospital for this cycle of antibiotics, so I thought I would share with you some of the good times and some of the bad times this trip so far.

Here and There
Patti and I have both had our BlackBerries die this year and it happens to be a contract renewal year, so we opted to move up to the iPhones. I did it because I am a Mac geek and Patti did it because of the 5 MegaPixel camera (shes all about the photos).

Patti decided to start sending me Hipstamatic photos of everything going on around the house, and asked if I would do the same, so we traded a lot of photos. It was fun and helped us feel a little bit closer together.  Here are some of my favorites:

Cooking
Gelica doesn’t really like the hospital food. Its a lot better than any hospital food you would get at an adult hospital, but still, it isn’t home cooking. When we found out that we were staying for 2 weeks, we set to work to “suggest” that they give us a room on the ward with an actual kitchen, borrowed a mini-fridge, made a menu plan and sent mom a shopping list.  The end result was a nightly parade of nurses coming to see where the smell of heaven was coming from.  So far we have had, among other things: roast chicken with steamed veggies, gravy, and mashed potatoes, quesadillas with seasoned chicken and sauteed veggies, home-style spaghetti… I think we are finally having crepes with fresh blueberries tomorrow am.

Cooking our own food, helps to pass the time, gives us exercise going to get the groceries, gives us better nutrition and it has flavor (which the hospital food doesn’t)

Cousins
In the absence of Patti and Alexandra and Jeremy and Siah and Judah, Aunty Michelle and Aunty Debbie and the cousins came in to make sure we had visitors.  Its always nice to be with family, and missing our own family made their visits even sweeter.

Gifts and Surprises
I know that people are praying for our family and there are a lot of people that have done so much over this almost 8 months so far. But it never ceases to amaze me when we receive cards, or balloons, or gift baskets from unexpected places. It is such a huge reminder of how surrounded and covered we are.

Separated
As you can read in my other post, I like to be with my family and we function well together. Being apart just really sucks! I hate sitting here, feeling somewhat bored and hearing about Patti having a bad day and not being able to do anything about it.

Consoling over the phone
It was a shock to my kids when they heard that we needed to head into the hospital right away. It was more of a shock when they heard that we needed to stay and get further treatment. It was more of a shock when they found out that we were here until the 18th.

Add to that, that they were going to come in and visit on the first weekend… but someone was sick, so they would come in on the Wednesday… but someone else was sick, so they would come in on the Friday… but someone was still sick, so Saturday, or Sunday for sure… but now someone else was sick… so maybe we could just send Xan in for a sleepover on the Monday… but someone was sick.

Each one of these changes in plans has been an emotional event for Xandra and each one compounded on the others. I have had many conversations with my daughter now, where I talk to her on the phone and let her cry.  I don’t like that…. at all.  She is a precious girl and REALLY loves her family and wants us all to be together; she draws life from it. Having us apart leaves her gasping for air. Definitely bad times.

Nausea, Nighttime Vitals and Over Analysis
Coming into the hospital means IVs and medicine. It means that Gelica was sick, is about to get chemo (which normally means she is about to feel sick), or is going to have to at least smell the hospital food (I think there is some kind of conditioned response to the food cart from when she was really sick in here before, cause it doesnt small that bad, but she dry heaves every time it comes close). I don’t like watching my angel have to deal with nausea… its too much and it just ain’t fun.

Another thing that we are guaranteed during each visit is vitals about every 4 hours. that means temperature, blood pressure, etc. at midnight and 4:00 am.  Add to that a bunch of machinery that clicks and beeps and has bright lights… its never really a restful sleep in  here, so we might be bored and have time on our hands, but we are still living with that over-tired feeling. (I won’t complain too loudly cause I think I’ve had about 100 times that amount of sleep that Patti had.)

Over Analysis is when you are constantly being checked, everything goes under the microscope and everything is a potential problem, or requires a conversation with a nurse, or could be a set-back to recovery. At home we wouldn’t have known that her temperature fluctuated by more than a degree during the day, and that would have saved us the conversations about whether there was a secondary infection and, and, and… its exhausting.

Reality Checks
On this ward, it is somewhat easy to focus on our own road ahead. Its not an easy road, but we will all be together, healthy and happy in the end. When you run into other parents here, some are on a similar road and so you compare stories.  Some have children with incurable cancer, or severe complications, or you find out that a kid that you met a couple months ago has died. This is a reminder of what we fight and what we are beating.

This week a teenage boy was brought in that has been in and out of the hospital for the last few months with undiagnosed illness. They have thrown every test imaginable at this kid and they have no idea.  He went home a few days after we got here, but then had to come back.  He is currently in a coma on life support.  I got to pray with and encourage the mother.  But these “reality checks” are hard and humbling.

We are thankful for how far we have come, but this is a day in the life of a children’s hospital.