The Day our Lives Changed. What I Would Tell Myself to Do Differently.

I’ve decided to take the challenge and answer the question by TheMighty.com: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself?

You’ve just had a baby. You loved when it was just you and Jasmine but now she has a sister, and that’s ok. You can make it work. The past few months have been rough because jasmine has been pretty sick and it has been getting worse. She skinny and she refuses to eat, but you’re doing your best.

As you’re sitting in the doctors office waiting on the results, the doctors are asking a lot of family history questions and you’re not sure what all of this means. You were just discharged from a different hospital yesterday after four days of test after test. You thought you left with just acid reflux medicine- wouldn’t that have been nice…..

The doctor comes in and tells you Jasmine will be admitted on the spot because her ammonia is well over 200. You’re thinking wait a minute she looks fine… He explains normal people with ammonia this high are likely in a coma. What’s ammonia? Don’t worry, you’ll be an expert in just a few short months. 

Wait a COMA? Take a deep breath.

Remember that she is alive and hasn’t suffered serious mental delays. You don’t know it now, but you are so lucky and Jasmine is so lucky that you found out when you did. She could be in much more serious trouble.

Jasmine and her baby sister at the hospital 

The next few hours of confirmations and test will define the rest of your life. Your life is about to change in ways that you can’t even understand right now. Even after months I would tell you its still going to be a hard step learning curve.  Stay strong.

Jasmine being transported by ambulance

First I would tell you, It’s ok, everything will be ok. Cry everyday if it makes you feel better! Don't be ashamed to cry. It’s ok to wonder if she will be able to remain as normal as possible. It’s ok to worry about things like quality of life. Relax because all things considered she should be just fine. It’s going to take a long time, but she’s alive and with a lot of work you can get her healthy.

Next I would tell you to ask all the questions you can and write everything down. Every time she gets hospitalized they ask the same questions and she’s going be there a lot in the next few months.

Educate everyone around you. Make sure early on that all of your family and friends are familiar with her condition and her needs. You’re going to need a break. Knowing you, you will push and push and try to do everything yourself, but you cant.

Try not to compare yourself or Jasmine to other kids and their situation.

As you read through Facebook you are only going to hurt yourself by reading what all of the other kids are doing while yours is stuck in the hospital getting a feeding tube put in. This is your new life, your new situation and you need to own it. The sooner the better cause you are only going to stress yourself out.

Last, don’t be surprised if you feel like you’re failing her everyday. Don’t be ashamed to ask for help and do it as soon as possible. Don’t be worried if she doesn’t get her medications at the exact second that you had planned in your head. Learn to accept that she isn’t going to eat like a normal child. Give yourself some slack cause you have two kids and this is a lot to handle for anyone.

Above all else, THANK GOD that she and you have made it this far. Count each day is as a blessing that you get to help her through this part of her life so she can grow and become a young woman. You will be there for her then too, but right now she depends on you to stay alive (a little more than most) but by the grace of God you’re going to see her through it. You are luckier than most, never forget it.

OH CRAP, The Feeding Tube Fell Out! What Do I Do?

So when you first come home with a g-tube they tell you that if the tube comes out or falls out or breaks you need to “stick something” in the hole and rush to the ER. They tell you this for the first three months. Then after that period they teach you how to put a new one in and your supply company sends you a back up tube.

Jasmines g-tube several days after placement

Replacement tube in hand you feel great! You can put a new one in no problem. But what happens when you run out of the replacement one and your kid pops two tubes in a mater of a few weeks? That’s what happened to us!

So as you know toddlers are busy little bees and constantly on the move. We have a VERY active toddler who unfortunately climbs everything all the time. She is up and down and from one thing to the next all day long. Imagine that your kid has a feeding tube port on the outside of their stomach and just cringe every time they slide off the couch on the stomach to get down.

This is the hole where the tube goes. 

So, what happens when it falls out? The hole begins to close almost immediately. You might be thinking.. big deal, just feed the kid and get a new one in when you can. Wrong, Jasmine’s condition requires her to eat every few hours or her levels could get high and cause her to get really sick. This is why the tube falling out is truly an emergency for us. The reason we have a tube is because we need it to keep our daughter healthy… and alive.

The replacement tube comes every three months and your insurance will not pay for a new one until the next billing cycle. These suckers cost $180!!!!!

THE STUFF THEY DON’T TELL YOU…

First, they don’t tell you WHAT to put in the hole when the tube comes out. I’ve learned that veteran moms get “g-tube saver kits” from Patchwork Peddler. It’s literally a sterile catheter that’s the same size as your kids tube and you put that in until you can get to the ER. (because what else would you shove into the open hole to your kids stomach?) Get one... get 5... keep one in the diaper bag and in your purse and in your car; who carries an extra tube around all the time?

Next, no one tells you to keep the top piece of the replacement tube packaging. It has codes on it. I’ve learned that you’re supposed to keep the codes and write down when the new tube goes in.

Then, no one told me to use the codes above and call the company who makes the tube. I’ve learned that within 30 days the company will replace the tube if it breaks.

Last, you’ve got about 20 minutes without plugging the hole to make it to an ER. Also, you need to call your local emergency rooms to see who carries the g-tube and who doesn’t. I’ve if you’re far away from the big children’s hospitals you may have a local hospital branch. Our local children’s hospital branch only carried certain sizes of the g-tube. Regular “adult” emergency rooms will not carry tubes and definitely will not carry pediatric sizes.

If the hole closes which is likely if you cannot make it in time your child will require another surgery to get it back in. Trust me when I say that 30 minutes to our local branch almost landed us back to the operating room. The emergency staff had to work VERY HARD to get my daughters tube back in. They had to DIG in the hole while she screamed. I don’t mean to be graphic but this is the reality. I told them do what they had to because if they didn’t get it in we would have had to leave and drive to the children’s hospital in the middle of the night.

Jasmine sleeping on the way home

New Years Resolution: More Structure for Jasmine Marie

As you may have read in my last post we were visiting family for the holidays but we have returned home back to “normal life” with all of the same issues we had before we left. Some of these issues are normal for a two year old but most aren’t. If you don’t already know Jasmine has a Urea Cycle Disorder called OTC. Basically she can not process protein the same way everyone else can.

Jasmine celebrating the new year

I’ve been told that trouble with sleeping can be related to her condition. If her levels are high she gets sleepy and that can be dangerous because she could slip into a coma. We have been experiencing the opposite effect ever since her diagnosis and introduction of medications.

Jasmine was diagnosed several months ago now and since that time we have been puzzled by her weird sleeping habits. Sometimes we put her to sleep early only to be frustrated when she wakes in the middle of the night and cannot get back to sleep. So we started putting her to bed a little later. Some nights she wakes and some night she doesn’t. So far we cannot figure out what the cause is.

Getting her to sleep is also an issue so we have started doing a nighttime massage and singing to calm down. This has so far been effective. Right now we also have little sister who is still nursing so nighttime is very hard and mommas going CRAZY! Little sister refuses to drink from a bottle right now so that will also take some work!

Our new plan is to focus on meal times and g-tube feedings at specific times during the day. This is important because we have “eating issues” where jasmine refuses absolutely everything to eat and because of her condition she then needs a feeding by tube to supplement her nutrition.  We are looking into food and eating therapy as well as trying to play with our food to become more comfortable with eating.

Jasmine eating... or making a mess....

I have also asked her to get her sister things to eat and help me feed her little sister as we talk about food. I’m really hoping that even more structure will help us work through some of these things even though we go by a pretty strict feeding schedule already.