Still sick

Ugh. X is still sick. And now N is and the hubby. At least I now know that the nausea and throwing up is probably more related to the virus than the feeding tube. N and the hubby aren't eating much and they say their stomachs don't feel all that great.

That is the hard part with X. We don't know if he's throwing up because his motility slowed down, or he isn't tolerating the formula, or he has a stomach bug. At least now I know, so today I am giving him a 24 hour break from his formula. So far he has eaten 3/4 of a Popsicle and drank water. Tonight I'll try formula again. If he can't tolerate it by the end of tomorrow we will need to see the doctor. Hopefully not down in the Cities though. Oh man, I do not want to do that.

X definitely has more energy today though. Of course he isn't hooked up to his feeding tube. Yesterday he perked up after I turned off his feeding tube. I really wish we knew what was going on with him. I feel like we need another opinion, but I don't even know what to ask at this point. We were told he has had all the testing done he could have.

I've been reading Facebook pages related to feeding disorders and it makes me feel like a horrible Mom because I don't know as much as these other Moms do and I haven't flown all around the country to see every specialist. I haven't been researching his stuff as much either. Talk about Mom guilt. It's bad enough struggling with the comparisons regarding house keeping, parenting, etc..., but throw in medical stuff and it takes the guilt to a whole new level. I know this is all in my head and I need to work it out and ask God what He thinks and just rely on what He says, but that isn't easy. At least not for me. Just another area to grow in.

Today we are hanging out with Christmas movies, fuzzy blankets, and Gingerale. X us getting a bit bored, so I will need to start getting creative. Hoping everyone is getting illnesses out of their system before Christmas. And that I get some sleep tonight. Oh, how I miss sleep after just a few days without it.




- x on Thanksgiving. He was so ill. My sis sat with him the whole day, Jack the Dog snuggled up with him and my Mom took care of the puke bucket. I am so thankful we had the meal at our house.

Posted using BlogPress from my iPad

Thankful and Other Things

I am thankful for many things.

X went 8 weeks without being ill. 8 weeks!
We reached the goal of 4 200ml blouses a day. Each bolus takes only a half hour.
X is hooked up to his feeding pump for only 5 hours at night. I remember when he was hooked up for 20+ hours a day.
X is getting his night feeding at a rate of 100ml/hr. I remember when we couldn't get past 55 ml/hr.
X continues to grow and his growth hormone is much higher than it was 6 months ago, which means he does not have a growth hormone issue.
X is eating 250-350+ calories a day on top of his feedings.
X has extra weight to spare when he does become ill.
X has been blessed with an amazing speech and occupational therapist who have helped X eat. We would not be where we are today without them.
X has slept in his own bed for over a month and I have gotten 6-7 solid hours of sleep consistently for a month. I don't think I've had that kind of sleep for that many nights in a row since before I was pregnant with X.
My Mom emptied out X's puke buckets on Thanksgiving for me.
My sister sat with X all of Thanksgiving while he wasn't feeling well.
My family understands that X cannot eat certain foods and does not try to make him eat (I've recently read horror stories about family members sneaking food the children, trying to force children to eat, etc..)
My family enjoyed our gluten, dairy, egg free Thanksgiving meal.
We have health insurance and it has covered everything X has needed.
My husband is healthy enough to work and works overtime so I can be home with N and X and homeschool.
I have a job that allows me to work casual (sometimes ultra casual) and I love the job. Love it.

And there are hundreds more things to be thankful for.

I have needed to remind myself these things the last couple days. X became ill the night before Thanksgiving. I could tell he was fighting something. Wednesday evening he started throwing up. Boo. He barely has a cold, just some congestion, but nothing that bad. I didn't get to bed until 4:30 Thursday morning (and we hosted Thanksgiving) because X was so miserable. He was on straight pedialyte all Wed night. We tried a bolus Thurs morning because he seemed to be getting better, but he threw up most of that. He had straight pedialyte all day Thursday and Thursday night. He did, however, eat 2 large pieces of turkey and some pumpkin pie. That was amazing. He never eats anything when he is ill. Today he is getting a continuous feed into his j tube for 6 hours. That will be almost 50% of his calories. He has thrown up a few times today and he has very low energy, but he is doing okay. I am sure that once I stop the feeding he will perk up.

I have to admit that it is hard not to freak out. I sometimes feel like my mind and brain are not connecting. I can tell myself that he is doing okay and this won't last forever, etc..., but my body reacts in panic. The thoughts, "it's starting all over again", "we are going back to the hospital", "you wont be getting sleep again", etc..start up again. It is a huge mind game for me to not go there and just stay in the moment, although I am getting better at it.

I also get angry and sad. The questions also start up again. Why won't he eat? Why does he throw up when he has just a little cold? Will we ever know what is going on with him? Will he ever get off the feeding tube? And on and on. I don't ask "Why X?" or "Why us?" because if it wasn't X it would be another child and another family. I do ask "Why children?". I know we are not unique and I'm very aware that there are other families with far greater struggles than we have.

Yesterday was a good day even though I had very little sleep and X was sick. When I got up in the morning I wanted to call off the dinner, but I am glad I didn't. It was a fun and relaxing day.

X was weighed last Friday. He gained 3.4 pounds in 2 weeks. And grew another 1/4 inch. He now weighs 43.8 pounds and is 42 inches tall. I emailed the nutritionist because she was concerned about how quickly he was gaining weight (and yet she still increased the calories he receives with the feeding tube). I haven't heard from her yet, so I decreased the amount of calories X receives to 1300 from 1400 a day. He is getting 4 boluses of 200 ml over a half hour. I would love to be able to give him 4 boluses of 300 ml a day. He would only need 100ml over night. We would probably sleep all through the night and his body would be on a normal schedule.

One incredible thing I've noticed is that X is asking for food when he is due for a bolus. His body is definitely starting to figure out how to be hungry. He is also eating larger quantities of food. I think we have stretched his tummy a bit. Even though seeing X ill is discouraging, I am hopeful.

That's what's going on here. It has been a blissful 8 weeks. Pure bliss. After this little setback I am looking forward to more bliss.

Steady Progress

Things have been going well. Today we got X up to 200ml/hr over an hour for all three bolus feeds. Tomorrow we will slowly work on increasing the rate so he eventually gets the 200 ml over half an hour. There is so much math involved in this process, and I completely suck at math, so it's been fun.

However, he is on the feedings at night for just over a little 9 hours now. I remember when he used to be on that thing for 20+ hours a day! Life is good and peaceful at the moment.

The ultimate goal, of course, is for him to be tube free and eating on his own. The goal below that is for him to be getting 800 calories during the day divided over four half hour feedings and 700 calories at night over 7 hours. Then, after a while we will begin decreasing the day feedings by 10% and see if X picks that up orally.

That's where we are at.

He is refluxing a little during the day, but he says it doesn't hurt, so I'm not going to get concerned yet. All of this is such a huge step for X. When we tried this last year, that's when everything went to hell and he basically threw up for 4+ months every time he got a feeding. We had puke buckets in every room of the house along with wet wipes, sippy cups of water, towels and diapers to vent his tube into. We even had a bag we had to bring with us that was packed with puking items. It was like our American Express card. We didn't leave home without it.

Now, all of that stuff is put away. Well, almost. I do have a bucket hidden under X's bed and one in our room. It's an amazing feeling having more freedom with out the puking and a little nerve racking as well. Part of me is just waiting for all of this to go bad, but most of me is really enjoying it.

The other night X woke up upset and when I checked on him his shirt was soaked as well as his bed. I was sure he puked, but he said he didn't, then I was sure his balloon that holds his feeding tube in place Burst and stuff was leaking around that. Turns out it was just a cap that popped off a port. I was completely freaked for a few minutes though. Thankfully, it was nothing.

Our doctor's office called Monday to check on X's energy level because he had lost a pound the week before (but grew half an inch in 2 1/2 weeks). Good grief. X is nothing but energy. That boy is non stop motion and talking and exuberance and noise from the minute he gets up to the minute he passes out at night. I sometimes wonder if he is hyper active. But I do not worry about his energy level. Not at the moment anyway.

So, that's it for now. Things are going well. X is moving along with the feedings and we are increasing things at an incredibly slow rate. We could probably go faster, but if I've learned anything with X, it's that he needs small, slow changes.

Another big event over here is X is sleeping in his own room. Can I get a hallelujah!!! This is h-u-g-e. Momentous! Since Aug 29, 2011 I have been sleeping in X's room or he has been in our bed. It has been over a week since he started sleeping in his own bed. He will wake up to pee and will sometimes be afraid and want me to hum (usually for 15 minutes at 3:30 in the morning), but then he stays in his room. I am actually getting sleep. Beautiful, amazing sleep. And my body is craving more and more of it. I still can't wait until the day my sleep is uninterrupted, but this is the best sleep I've had since before I was pregnant with X. During the pregnancy I had insomnia and restless leg syndrome so I did not sleep. Then, about 2 months after he was born he was so miserable with the eczema, hives, reflux, and allergies, he didn't sleep for more than an hour at a time (and that's being generous) until about a year. After that he didn't sleep for more than a few hours at a time until he was about 2 1/2. I remember almost starting several fires in our kitchen while cooking because I was so out of it and I had too many near misses while driving.

But now, I have energy and can think straight, and function. It is good.

Lots of good stuff happening here and I am taking advantage of the peace ( well, as much peace as I can get with an energetic X ;))


- Posted using BlogPress from my iPad