Monday, December 3, 2012

The Great (small town) Debate

This weekend was spent straddling the invisible line between a sick, need to stay at home Jack, and a sick, need to go to the hospital Jack. These are the moments that I desperately wish Jack could tell me what is hurting, what is wrong.

Jack has such a complex medical history that Jon and I have to become detectives out of necessity, trying to investigate a multitude of theories, try different remedies, and pray to God that we are making the right decisions regarding Jack's health. He was very miserable for three days and I was praying that it wasn't a shunt malfunction. That is always the scare, underneath it all.

The first year after being discharged from the NICU, at the sign of anything suspicious, we took the better safe than sorry approach and just went in. No questioning. No debating. It's just something you do. There is absolutely no compromise with those little, at-risk immune systems. But now that Jack is three, I find myself constantly debating what we should do.

There wouldn't really be a debate if we lived somewhere else. Unfortunately for Jack, we live in a town that is sorely not meant for pediatric care. It is always the big debate - to take him in or not. It is the single hardest thing for us about having a former micro preemie - where we live. There is no pediatric neurosurgeon, no pediatric anesthesiologist, no pediatric anything, really, besides Jack's "vaccine doctor" (pediatrician) as we affectionately call him. Basically we try to keep those visits to when Jack gets his flu shot or any vaccine that he needs. We try to take his care anywhere else (at least to a town two hours away)... unless we are in a bind. Jack has about ten specialists spread across our state. It's just the way we've had to do it, living where we do.

When we bring Jack in to our small town hospital, they immediately see his thousand pages long medical records, and for lack of a better term, freak. I don't want to subject Jack to a bazillion different tests and useless pokes and prodding when he doesn't need it. They act like they are searching for a needle in a haystack. That is so traumatizing to an already hospital-ed out kid.

So I find myself setting up ultimatums. Little markers for myself to decide the next step. "If Jack isn't acting better by noon, then we will go in". Do you find yourself doing this? The constant weighing of the pros and cons is enough to send this micro preemie mama's blood pressure through the roof.




We were definitely in a bind this weekend. Jack was lethargic. We just held him for hours and hours. We kept him hydrated. Thank God for feeding tubes or else we would have had to go in for an IV, I'm sure of it. Yesterday morning, after a good night's sleep, he turned a corner. When he ate a few bites of breakfast yesterday morning, I knew he was feeling better.

Thank God. This preemie life is just hard sometimes.
Pin It!

15 comments:

catchupdaphne.com said...

I am so glad he is feeling better. I live about 20 mins from the hospital where Daphne was in the NICU, which is also where she had open-heart surgery, and where she will be getting a kidney transplant. I cannot imagine the thought of having to take her elsewhere. For us, the situation is a bit more clear cut. She doesn't have a tube, so if she is at all dehydrated, we go in. Her specialists are all there and they have immediate access to her mile-long record in the computer. In fact, my worst nightmare is being away from home and needing a hospital. Again, I am glad Jack is better and at home.

mouse said...

We have had a very similar weekend, and again it is only having the feeding tube that kept us out. I'm lucky, our nearest hospital is a dedicated paediatric hospital that is renowned in the north of the UK, but at a time full of bugs, unless it's absolutely necessary, sitting in a waiting room for hours with other sick kids puts a hard spin on things if you can 'just' manage at home! Hope Jack is feeling better now x

Amanda @ Understanding Prematurity said...

We are so lucky to be close to medical care. I don't know what we would do!

Bethany said...

The shunt is always foremost in my mind... is this fever bc of a shunt malfunction, or is it JUST a fever? I constantly feel like I'm on eggshells when Logan's sick... is he sick or is it MORE? I feel for you, and am so glad Jack is feeling a bit better... it lets you exhale that breath you didn't even know you were holding. Wishing you a healthy holiday season!

Kristi DeLeurere said...

Even being close to medical care doesn't necessarily help. We live 5 minutes from a large hospital, but they refuse to directly admit pediatric patients so we always have to go through the ER. This means having an IV placed by someone who is not a pediatric IV specialist (unless I am able to convince them to call someone from peds), which means that he will be stuck at least 4 times to get an IV started. It also means people repeatedly asking the same basic questions that are in my son's 5 inch thick chart. For instance
Them:"He was a twin?"
Me:"Yes"
Them:"How is his twin developing?" Me:"He died at birth"
And on and on with the lovely questions that are so fun to answer.

Then doctors who are not familiar with my son's history start making assumptions about what is wrong with him. They are almost always incorrect and he just gets admitted and placed on a bunch of medications until our pulmonologist can see him and make a true diagnosis with treatment plan. So even though we only live 5 minutes from the hospital, we always try to treat him at home to avoid this mess. My wish is to have a doctor who is as good of a doctor and as knowledgeable about my son as the pulmonologist, but who is as accessible as the pediatrician.

Becky P said...

I panic with every little thing. I think it drives my husband, who is a nurse crazy. Our pediatrician in a moment of insanity gave me his cell phone number.....what was he thinking. So now if I have a question, I just text him. We are also on a email basis with her neurosurgeons... AAHHH the life of a micro-preemie.

Tatum said...

Glad you're feeling better, Jack. Jessi, I relate for sure!

Christi O'Brien said...

You're certainly not alone is these agonizing decisions and ultimatums. So glad that Jack has turned the corner and is feeling better now. Prayers for continued swift improvement!

Rosie Keisha said...

Is moving to a larger town with a pediatric specialty hospital an option for you? I would imagine part of your stress is the distance you have to travel for any medical emergency. Would that give you some relief to move considering the ongoing medical situation with Jack? You are in our prayers and I'm glad Jack is feeling better.

Jessi said...

Yes, we have thought about moving and are open to it, if the right jobs/situation came around. It's something that is continually on our mind.

Michelle said...

We have made many trips to urgent care or the ER because I wasn't sure and wasnt about to risk waiting until the pediatrician opened on Monday. They always seem to get sick on the weekend. I always think what's one more co-pay when we've already spent thousands on their medical care/therapies. , but we live in town. I can imagine the panic I would feel if we did not.

Our Beautiful Family said...

We feel your pain. We live in a place that knows nothing about what Owen needs. We have to travel at least 3 hours away to get decend medical care for him. We used to freak out when Owen was younger. Fortunately (or unfortunately depending on how you look at it), Owen has had sooo many hospitalizations in the last two years that we have a routine, a system. We always have enough in our savings for at least 1 week hospitalization per month because that was the norm (up until 6 months ago - yay!) We just try to remember to trust our "gut" (or Owen's) for lack of a better word. If something feels like it's not right, it's probably not.
hang in there

Jackie said...

We can so relate. While we're not 2 hours away, we are 1 hour. That 1 hour sucks and can be SO scary. So glad Jack is feeling better. That picture of he and Jon is both precious and pitiful.

Anonymous said...

We learned the hard way how much they freak! We took our son to a Children's Hospital ER a few months back because he slept 14 hours overnight and then was completely lethargic...wouldn't eat...just wanted to sleep. We decided to be safe rather than sorry...we're newer micro-preemie parents....Anyways...with his medical history being what it was...they tested him for things we were 100% sure he didn't have! It ended up being a 5 hour ER visit to find absolutely nothing wrong with him. We struggle with ever wanting to take him back to an ER again. Always hard when he gets sick on the weekends and his pediatrician isn't available. Good question...does it ever get easier?

Anonymous said...

I should add....our son was born 9 hours from home, so his original doctors that were with us that really know his history and such aren't really accessible to us.