Morning has Broken

There is just nothing like awakening to the sound of the nurse calling my name at 5:30. I could tell from the tone in her voice that it wasn't a dire emergency, but she definitely needed my help. That's a good start. It's much harder when I'm afraid.

 Maggie's feeding tube broke. All right, I'm up and moving. I was glad it was her g-tube and not her trach and very glad she did it at 5:30 and not 2:30. This way I'm just up an hour early instead of missing a nights sleep. We have to find gratitude where we can.

As I headed downstairs I figured  I must have done something wrong when I changed it yesterday. I change it every few months and it's no big deal. The tube is held in place by a small balloon that is inflated with water. Perhaps I didn't put in enough water.

How silly of me to think I made a mistake. The tube was defective, the balloon was popped. In the 19 years I have been changing g-tubes, that is the very first time I've had one break so quickly. Generally the balloon pops after a couple of months and we just change it. Sometimes I change it and the balloon is still intact.

 No big deal, I'll just switch it out. Then I remembered. For the first time ever, we changed the tube before we received a spare. I don't have another one. I've never changed the tube without a spare available and it has never broken in less than 24 hours. Of course both happen this time.

Unbelievable.

This is problematic. Maggie cannot go without it because she cannot get her meds or eat without it. #@$^(%(%$#!!! More immediate than that, though, the surgical hole will close without something in there to keep it opened.  I don't want to have to go to the ER for this. It's stupid and wasteful.  Think think think.

For starters, we can keep the site open by putting the old one in. The nurse chastised me that it would not stay because the balloon was broken. I said, that's why God invented tape.  Maggie now looks like a football player taped up for the game.  One problem averted, now what to do.

Ahhh.  School! She has an extra one at school. I am going to take her straight to school and meet the nurse there. We will get to school around 7:30, do a quick change and Maggie will just go on with her day.  I will get on the phone to the supplier post haste get a couple more. If this happens again, I am all out of ideas.

Ok. It's 6:30. I have done hard thinking and problem solving. Now I have to get dressed to get her to school by 7:30.  But first I need coffee.

Jeez Mom!!

The nurse that comes on Sunday nights does almost all of the morning routine for me. I love that. I don't have to lift Maggie or fill the oxygen tank, or stuff the dynavox into her bag. She even takes the tray downstairs on her way out. That gives me an extra 10 - 15 minutes in the morning, which is great.

Really all I have to is complete the package. Sometimes that means adjusting a mis-matched outfit, but not today. I changed her scarf, which was already wet and needed changing and brushed her hair and she was set. The last thing I do before we leave is feed Maggie. She is fed slowly overnight, but that stops around 6:30. She's not hungry per se, but she can't make it to the next feeding either.  I give her a bolus of food so she starts out full and on schedule for her day.

This morning I did the finishing touches and said, "All I have to to is feed you Maggie and you can go to school."

Immediately after that I was sidetracked by something. Five minutes later I was in her room drawing a complete blank on what needed to be done. I said, "Maggie I came in her to do something but I can't remember what it is." (All you young people out there, stop laughing. It will happen to you too).

I looked at Maggie and she just raised up the bottom of her shirt to show me her feeding tube. RIGHT! You need to be fed. She was reminding me!!

 I thanked her profusely and she laughed her head off quite proud of herself.

She was laughing WITH me, not AT me. Right?

Inquiring Minds Want to Know

Monday morning. No camp this week, it is just Maggie and me again. She is still a bit blah, but not really sick enough to go to the doctor or anything. We will just take it easy this week with short outings.

The Girls Rock camp last week was great, but it was exhausting. As the week goes on, the girls get more comfortable with one another and with the adults in the room. They also get more comfortable advocating for Maggie even though they do not have a complete understanding of what is happening with her.

Every time I fed Maggie, one or more of the girls would ask what I was doing. Fair enough. It is not every day one sees a person being fed a can of “medical food” through a gastrostomy tube. It is fascinating to watch and a bit difficult to understand, so questions are normal.  Most girls asked once, looked, were impressed and moved on.  A couple of the girls asked the same questions over and over. That is fine too; it is part of this world I live in. If I want them to understand and tolerate Maggie’s differences, I need to be tolerant of theirs.  And I am, but I would be lying if I did not admit to some frustration. Two of them were 

quite insistent that Maggie was not getting fed, despite my patient explanations about how she eats.

 On the last day, there was a party. The girls made the food -- wrap sandwiches and quesadillas. They also made cupcakes and frosted them and we made frozen yogurt. Of course, Maggie cannot ingest any of those things; but Maggie does not care. She is just pleased to be at the party.

That was not enough for two of the campers, though. They asked repeatedly if Maggie could have a sandwich. I smiled and said, “No, she can’t swallow it.” They tried again, “How about a quesadilla?” “ Nope. Besides, she is allergic to cheese." I told them,” you guys remember I just fed her and you asked about it, right?” They would not budge, “That’s was only something to drink. She needs food!”  I said, “You know girls I wish she could, but this liquid food is all she eats.”  They stared at Maggie and then looked at each other (contemplating a call to Child protective services, I am sure.) Variations of this conversation went on for several more minutes. Finally, one of the asked if Maggie could not eat because the trach tube got in the way. Though it was completely incorrect, I said yes.

 Sometimes it is easier to ride a horse in the direction it is going.  

That is right. In this educational camp, giving girls an opportunity to ask whatever questions they want in a safe environment, I lied. I am not proud of that, but the questions stopped. I doubt it will change their lives in any way at all, but I worry about either of them racing in to stop another child with a trach from enjoying a piece of birthday cake or something.  

 School starts one week from today. I am more than ready for a routine to return to this household. The fact that the school routine also gives me an opportunity for solitude after weeks of none is only incidental, I assure you.  I am interested ONLY in my daughter’s education.