G-tube removed. Healing not complete, but so far so good.

Toilet training is also progressing.

I submit offerings to the healing powers and the potty training elves.

Yesterday Little T's GI doctor talked seriously about removing Little T"s feeding tube aka g-tube in three months.   His g-tube is responsible for all his ER visits in the past year.  Little T hates the thing and wants to be rid of it.  With the pump, he has accidents about once every two weeks where we miscalculate the amount his stomach can hold.  The result is traumatic for him and very messy. 

So about three weeks ago we switched to feeding him his supplement of 355 calories of gloopy liquid) via mouth.  We have so far managed to bribe him into drinking it every night.  He seems to be forgetting the pump trauma - good, but bad in that his appetite is slowly picking up, but is still not quite up to meeting his caloric needs to grow.

His GI doctor says Little T needs to get through a cold and not need the g-tube.  I have no idea if this is possible.

Right now Little T is growing, but he has little fat reserves.   He will eat food if I offer it to him, but most days it is a struggle to get him to eat enough.  His dietician's rough swag yesterday was that he was in fact eating under his caloric needs on two in-between days. 

Unfortunately his platelets have dropped to 67. Below 50 is when we need to worry about him pulling up and cruising, but it's a downward trend. Also the clinic is closed on Friday, so instead of going in then as we would normally with a number like that, we have to wait until Tuesday.

The doctors have increased his steroids to 2.7mg/kg, so I expect him to get angrier. Right he flies into 'roid rages 2-3 a day. He already has a "moon face" from the steroids.

Poor guy had 3 sticks today to get an IV in him, because he had to go under general anesthesia for an MRA(an MRI with contrasting dye) to look at the tumor on his left arm. The MRA showed that his tumor is smaller than his last MRA in April. Not too surprising, and that it's not growing into anything important.

He came through much better than we expected. For the first time in numerous times under anesthesia, he woke up before he got to the recovery room. By the time I got there he appeared alert and pointed at me to try and get me to pick him up. Within five minutes he was drinking and then proceeded to drink 6oz over the course of an hour. That's a new drinking record for him. Poor guy he'd been off food since midnight the night before. And usually we give him a 600ml feed overnight through his g-tube.

From akienm blogged:
1. Delve into your blog archive.
2. Find your 23rd post (or closest to).
3. Find the fifth sentence (or closest to).
4. Post the text of the sentence in your blog along with these instructions.

From Grief and not eating "Intellectually I know that he's actually getting all the nutrition he needs via tube and he has large reserves of fat." He's still getting most of his nutrition via tube and most of his fat reserves are gone. Yet he continues to grow. He gets stronger every day.

But to be honest, I still struggle with his eating issues. It doesn't loom as large as it did in May. I no longer fear that he wants to die. "But I still mourn the fact that he no longer breastfeeds." That's still true. But gradually my mourning became less constant. Like any type of loss, I became reminded less often.

And right now he's forcibly telling me that he's fiercely attached to me as he demands that I hold him while he goes to sleep. Gimpy as I am, I oblige. Though no standing and rocking today.

The word probe always conjures images of aliens with mind sucking probes and this probe didn't suck his mind, but it did go down his nose and record the level of acid in his esophagus for 24 hours. Our ped had said we could do the same for Special K when she was an infant to see whether to treat her reflux, but we refused on the grounds it was too invasive. Sadly, for little T, it was just another procedure and a minor annoyance at that.

He had an NG feeding tube down his nose and throat for months, but it was replaced by a feeding tube in his stomach a couple months ago. So yesterday at first he seemed perplexed that a tube was placed down his throat again. Then he remembered to be annoyed, but his protest was loud, but half-hearted. He yelled, but no flood of tears. Though of course he tried to remove it.

In an attempt to prevent little tube ripper from removing the probe, we put a splint over his arm. If he can't bend his arm at the elbow, he can't reach his face to remove the tube. He tried to remove the splint. He managed to remove the splint despite the fact that his right arm couldn't bend at the elbow and his left arm doesn't work. First he slipped it off using his legs. So we fastened the splint with a pacifier clip. He figured out how to wiggle free of the pacifier clip. We moved the clip to his back. Then we used tape and the clip. This arms race continued day and night throughout the 24 hours until finally the ph probe was removed this morning.

I'm sad we had to put in a mic-key feeding tube, but this little battle with the ph probe certainly shows we did the right thing. There's no way a feeding tube down his nose would last the night with his new found dexterity. It also shows that whatever gross motor delays our little boy has, he has adaptive problem solving skills i.e. he's wily like Bart Simpson.

I'm not sure if the ph probe will show much either, because he had a good day with the probe. He only throw up once and it was a minor incidence. Still I guess that's good, because perhaps part of his extreme lack of appetite is too much Prilosec. We'll see what the doctors say. In any case, I'm proud of my little Houdini.

Also my kids love to prove me wrong. I've been telling his therapists that I'm worried because Little T can't eat solids and that Little T doesn't say any consonants and he's started saying dah and bah and kah. He's also started eating solid foods without immediately throwing up afterwards. Go Little T

I got stressed out today, because

Little T had granulation tissue from his g-tube, but at first we couldn't figure out what it was.

Little T cried a lot and refused to be put down for hours from all the poking about from us figuring things out

My sister sent me an email that the top for our bridesmaids' costumes for my brother's wedding is on sale and therefore going out of stock quickly. The web site claimed that a nearby store had it, but when I called, they said they didn't. I'm between sizes, so I need to try two sizes on to see which one fits. Stress stress.

I realised I don't have a dress to wear for my hs reunion this weekend. C said "You have opera clothes." Yes, but these are a) for San Francisco and b) too formal for a hs reunion dinner. More panic and stress.

Clothes shopping stresses me out, because it's never clear that throwing more money, or more time at the problem will achieve the desired result, a me that looks good. I'm 5'8" and have an hourglass figure. Well, okay, I used to have an hourglass figure before two kids. Now I have a figure that looks great in the right clothes, but in the wrong clothes, I look fat, and worse pregnant. Not that being pregnant is so bad, but it's highly embarrassing for both of you if someone says you are and you're not. Most clothes are designed for shorter women, or fatter women, or unreal women like Barbie. I'm not tall enough for "tall women clothing".

So I go shopping in the vain hope I can find something that fits and I like. I wish I knew how to accomplish, except by going to stores and trying things on. I wish there was some sort of Amazon thing for clothes "If you liked this dress, here's another dress you may like." IMO clothes are still in the preInternet era. Some marketing guru figures that women love to shop. Maybe some other women. Not me. If you hate to shop for clothes too, shout it out, sister! Fundamentally, to me, clothes shopping is flailing in the dark. I hate that.

It's stressful. Here's how I react to stress. First my heart starts pounding and my breathing quickens. Then I get a headache. Then my stomach starts to hurt and finally if I get stressed enough, I feel light-headed and nauseated. Under extreme cases, I simply shut down. This is different from remaining calm. I'm far from calm. I'm a soda pop bottle. If you can get me to open up, I fizz all over the place. It's messy and inchoate and quite ineffectual. With C, I don't shut down, I just start yelling at him. Needless to say, he doesn't appreciate it. This time I didn't yell. I just fizzled for a bit until C got me to calm down and decide what to do.

C called the nurse who said that the cream I got from Little T's last GI apt should suffice.

I ordered the two sizes online. I have to pay $10 in shipping, and I have to return the one that doesn't fit, but at least in that case, throwing more $$ and time at the problem seems to have solved it.

At C's suggestion, I called a friend to go shopping with tomorrow. I still may not find a dress, but at least I get to spend time with a friend.

My movement disorder worsens under stress, but a friend from hs commented that it was a lot better when she saw me after an absence of several years. I no longer try to control the amount of stress I experience. After Little T was born, that was impossible anyway. I try to control my actions and take better care of myself.

When I gave birth, waves of pain cascaded over me and sometimes I thought I couldn't handle it, then I'd start to panic and everything would get worse. I learned to try to remain calm and just ride the wave, because eventually it would pass. For me, the feeling that this moment of intense pain will never end is the worse. But all things in life pass. So if I know what I'm supposed to do, I usually remain relatively calm under intense situations or crises. It's when I don't know what to do that I freak out. Fortunately as I get older, I encounter more situations and learn better what to do in each. Or at least I have C to calm me down while I figure things out. I love that man.

Yesterday afternoon was so exhausting, I didn't even want to recap it until now. Little T, Special K and I all went to Little T's CCS OT apt. T's sitting up better and shrugged his left shoulder for the first time in front of the OT. The OT was reassuring about T bouncing back after his G tube operation.

Then we drove to the hospital and parked there. Then we walked to a little sushi box place and ate some sushi. My hand twitched and I spilled my Snapple all over the table. K said "Don't do that, Mommy." I said "I can't help it. I jerked."

Then we walked to Andronicos and bought some grapes at K's request, some teething biscuits and some Tetley tea. K and I ate grapes outside while T sucked on his teething biscuit. He really enjoyed it and made a huge mess. It reassured me that whatever's wrong with his throat or vocal cords, he does enjoy some eating things like a normal baby. Then we walked back to Pediatric Surgery and waited about 20 minutes until our appointment. That wasn't too bad, because they had two kids' movies playing and K made friends with someone and sat with her and watched a movie.

T was weighed at 7.45kg and 66.5 cm long. Yay he's still growing! Then we were shown a exam room and we sat there for literally over an hour. K was overdue for her nap. She was actually really good, considering how tired she was. But T got really bored and tired. He kept fussing. I tried to entertain T with games of peekabo and shake the baby toys. After a while that got old even for T. I also tried to keep K awake, because I knew she'd only have to wake up once the exam was over. If I'd known it was going to be an hour wait, I wouldn't have bothered. Finally she fell asleep with her head and tummy on the chair and her legs on the floor. She was that tired. When the NP finally came in, both kids were asleep.

The Nurse Practioner made no apology that we waited so long nor did she seem to notice Special K. She examined Little T briefly as he slumbered on. She said not asked really "Do you mind if I look at his [left] arm?" I said grumpily "Yes, I do. He's just fallen asleep." She left the room. Then 15 minutes later, the surgeon on duty came by and did notice Special K and gave her a pat on the back. She slept on. He said "Wow, she must be really tired." I said "Yes, we've been waiting here a long time." He apologised. Then a nurse showed me the MIC-GT which will be placed in T's stomach.
This image shows two of them. As you can see, it's small. The surgeon puts an endoscope in his belly button then uses that to place the GT in his stomach. The plug is outside his stomach. The tube goes through the hole in his stomach and the balloon holds it in place. The entire thing comes out once every 3 months when it's changed.

Then we walked over to Hemo and got his (hopefully) last labs drawn through his Broviac. C wanted me to have T's doctor look at his arm. It feels harder now. I think it's probably muscle. C doesn't know. Anyway for the first time ever, she refused to come see him. It made me sad that she said no, but also happy that he's well enough that she can say no.

Then I had to drive through rush hour traffic home.