Monday, June 27, 2011


7:45 am: Wake up and relieve the nurse. That's right. Holler! We got a night time nurse. From 12am - 8am I can sleep!! Well, I can sleep NOW. Let's just say the first nurse was not up to our standards. Actually, she shouldn't have been up to anyone's standards. I don't really consider almost overdosing a baby 4x over as really a very good start. I wonder if she went to work that night thinking, "Hey, lets see if I can get this baby to stop breathing." Thankfully, Ben was awake and downstairs and happened to see it so he was able to stop her. If that wasn't enough for us to ask her not to come back (but it was most definitely enough) she constantly messed with Rambo throughout the night despite our multiple requests to leave him alone. She didn't understand a lot of his issues nor did she believe he fell into the 'grey' in some of his care. To her there was only black or white. Needless to say, even though the nursing company tried to send her back again we made it very clear she should not make a second appearance. So we tried out a few more nurses and finally found one we felt was capable of handling him. Which, honestly, shouldn't be that hard to do. He's sleeping. But apparently, it is. Anyway, I digress. The point is that we have a nurse. So, Rambo is usually awake at this time. I make some coffee and try to lay on the couch anyway because bless the nurse, she has already done Theodores 8am meds. This becomes pointless however because -

8:05 am: The other three kids are now awake and downstairs. They can usually make their own breakfast of some sort. Syrup over cereal - I don't care as long as I don't have to do it. And usually I don't, but some days we have NO food in the house because a grocery trip has been impossible and I have to come up with something semi-breakfastlike. Oatmeal cookies, ramen noodles, whatever. If it's consumable then it counts. On days that I don't have to create something edible, still, I'm awoken by hot breath on my face and a little voice saying "Mommy, can you turn on SpongeBob?"

8:20am: Turn on SpongeBob.

9am: Realize that more sleep is impossible. Administer Rambo's respiratory treatments. This requires a nebulizer, 15 minutes of chest PT and then suctioning. As well as an inhaler. If the nurse hasn't given him a bath and changed his trach ties then this is when I do that. However, bless her again, usually she does.

9:30am: Give med. Rambo usually falls asleep for a nap around this time.

10am: Vent, prime the line, feed Rambo.

11am: Feed done. Disconnect and flush the line. Squash complaints of "starving!" and "bored!" from the other kids.

12pm: Give med.  Find something for the others to eat and actually eat something myself. Rambo wakes up.

1pm: Give med.

1:30pm: Give med.

2pm: Vent, prime, feed.

3pm: Feed done. Disconnect and flush.

4pm: Give meds. Respiratory treatment again. However this is done when he's awake so anywhere between 3 and 5.

5pm: Again, listening to complaints of the other 3 starving. Again, ignoring them.

5:30pm: Give med.

6pm: Vent, prime, feed. Start making dinner for the rest of the family.

7pm: Feed done. Disconnect and flush. Eat dinner.

8pm: Give meds.

9pm: Meds, Respiratory treatments.

9:30pm: Give meds.

10pm: Vent, prime, feed.

11pm: Feed done. Disconnect and flush.

12am: Nurse arrives!!

And, all throughout we're suctioning (which is pretty constant), doing Rambo's occupational and physical therapy exercises. Actually trying to treat him like a baby and be part of the family so we'll move him into the living room. Play with him. Do housework. Laundry. Dishes. Homeschool. Play with the other 3. Doctors appointments. Maybe step out in the sunshine for a minute or two. Take a deep breath. Break up a fight amongst the kids. Find a movie on Netflix for them. Refill, replace equipment.

This is not for pity.(Maybe a little) Just useless information for the community at large. We're thankful for the help our family and friends give. Who would have thought that a trip to the grocery store could be so exciting and liberating?

It's time for me to tend to Rambo but I leave you with this thought: Suppose two sisters live 240 miles apart. One sister has three young children who are planning to visit their aunt for a week. To prevent driving so far, the sisters agree to leave at the same time, drive toward each other, and meet somewhere along the route. The sister with the three children tends to drive carefully and obey the speed limit. Her average rate of speed is 70 mph. The other sister drives too fast, and her average rate of speed is 80 mph. How long will it take the two sisters to meet each other to transfer the children?

Sunday, June 5, 2011

M-O-O-N that spells play time

This makes me happy :) He has been looking at those toys for 6 weeks. Just watching them dangle inches from his body with no desire to reach out and get one. And suddenly, one day, he just did it. He thought "I'm gonna get you, seahorse." And he did! He happily played with that toy for 15 minutes. I love that little boy. :) :)

Wednesday, June 1, 2011

Grease is the word, is the word that you heard.

Actually, 'busy' has been the word. 

It has been awhile since I've given an update - except in person to those I have seen. My apologies. We have been busy. But before I get to that I'd like to steal a moment away from Rambo because Ben and I celebrated our 8 year anniversary yesterday!! (And lets face it, guy, without us you would not be here) :) And thanks to my wonderful mother in law and sister in law (AND NO THANKS TO A NURSE, WHATSOEVER!) we were actually able to get out for several hours. We debated not coming back, but our natural parenting instincts wouldn't let us stay away.Correction, MY natural parenting instincts wouldn't let us. If it were up to Ben we would have run for the plains of Arkansas. Sometimes, I wonder if it wouldn't be nice to be a little more heartless..... ;)

Anyway, this is called "Rambo's Rampages" for a reason. I'll get back to the star of the show: Weight has been the issue. Thankfully he seems to be back on the right track, but after a stomach bug Rambo lost several ounces. He then proceeded to either continue losing weight or not gain any back. So after adjusting his food and calories a few times we seem to have hit the nail on the head. And at last weeks appointment he had gained 7 ounces. One ounce away from 11 pounds. Yay!

Then there was the time my dad almost killed me with a rolling stool. 

We also had our first experience where his G-tube jumped ship. Yeah, you can probably imagine my surprise when I saw it laying on the bed next to him as opposed to sticking out of his belly. Of course Ben wasn't home. Of course we were told just about nothing in reference to his g-tube. Of course my other son wants to stand right in front of my face and ask me repeatedly if he can eat the candy in his hand while I'm in the midst of trying to reinsert it back into Rambo's body. Thankfully, with the help of my good ol' neighbor we got it on the second try. 

And the story should end there, but let's be honest, this is Rambo and nothing is that easy. It's ALWAYS something. We started noticing dark brown coming back up into his tube. We weren't too concerned at first but thought we would keep a close eye on it. Then when we went to flush his tube it leaked all over his belly. Now, this couldn't have happened during doctors office open hours. No. Of course not. So we had to take him to an emergency center. It was decided to flush the tube and then pull back to see what we get out from his belly. It appeared to be just some dried blood and small clots which is not abnormal with the reinsertion of the G-tube. However, reference the first line of this paragraph again and you'll see that it couldn't have stopped there either. The nurse was happily removing the blood clots so they wouldn't clog the tube and suddenly the entire length of the tube is filled with fresh red blood. 

So now everyone is slightly more concerned wondering where the active bleed is coming from. Then the tube starts to leak around the stoma (site where it enters the body) and now his belly is all bloody. We do a dye test to make sure the tube is in the right place. It is. (It's a good thing, Rob!! :)  ) JHH tells us to watch the bleeding for a day or so and make sure it doesn't get worse. The conclusion was that the trauma of reinserting the tube twice and stretching the stoma some caused the bleeding. Well, today is one week and a day and the bleeding has stopped as has the leakage around the stoma. Yay!

Of course, just as we're getting back on track from that, the seal inside his G-tube broke and everything leaks back out of it. So we had to ghetto up a solution using an old feeding tube, hair bands and a q-tip. It's a good thing we're resourceful.

We also had occupational therapy and physical therapy visit him. They will be coming every two weeks. He is obviously developmentally behind from being so sick but almost every week he's doing something new. :)

 So that's where we are. Little man keeps us on our toes but at the moment (yes, I just checked on him) he is doing well. Not sure what's gonna happen later today or tomorrow but right this second he's good so I'm good.