Feeding Tube

The tube is in. Holy cow. What a crazy day. But God took care of everything.
We arrived at 10:00 am and I didn't put the tube in until 2:30. I have to say that this hospital is more like a hotel. Waiting around wasn't that bad.



The night before we left.



Bright and early the morning of the appointment.






Oh how he loves this bed! And the giant remote and the ability to move the bed with buttons. He has had so much fun turning lights on and off and turning the tv on and off and calling the nurse when we have a problem.






Quick lunch before the procedure.



Pull out bed that is lime green. My favorite color.


The giant flat screen tv. It also has Internet with a wireless keyboard (I was hoping to facebook on it, but haven't had a chance), and it has movies on demand. Maddox is in LOVE with this tv. He has asked if we could have a room like this at home. There is also a microwave and refrigerator behind those doors. And the lights in the upper right corner are mood lights. There are at least 12 different light patterns to choose from. Of course we had to keep the blue ones on ;)






Wipe off board with all our info.

So our incredible, fabulous nurse Holly trained me in on the tube around 2:00. She had never trained anyone before, and the nurses didn't know I was going to be doing it. I was terrified. So, we got Maddox, he sat on Craig's lap, we measured the tube out and I put it in. Maddox pulled it out before it was all the way in, so I did it again and it went in. I don't even remember putting it in really. Holly said it went in super fast, it felt like forever. Talk about traumatic for him. Then the wire guide that is in the tube wouldn't come out. That was the worst part for Maddox and everyone. The poor boy threw up so much and was screaming and crying. It took him about 2 hours to calm. Then later that evening he was almost back to himself. Playing and singing.



After the tube was put in. Playing with his bat cave castle he got for being so brave. Before he felt like himself, he just sat in my arms all limp and staring off into space. That was horrible.




Before going to bed. His tube was hooked up to the formula around 9:00pm. It wired for him at first, but then he did really well. They gave him his melatonin and Zantac through the tube, but he didn't like that, so we'll continue with the oral way.

Last night went pretty well. Once Maddox fell asleep he. was. out.
They did vitals every two hours, and the feeding pump alarm went off almost as much. Maddox pretty much slept through all of it. When would come in for vitals, he would stick up his little arm while still asleep. They tried to increase his feeding rate to 55ml/hour, but he almost got sick, so I asked them to stop it for an hour. The formula is also refrigerated, so Maddox can feel the cold through the tube. The fabulous nurses this morning were able to fix up his tube on his cheek so he didn't feel it there, which helped a ton.

The dr. came in this morning and they are switching his formula so it isn't so dense and it doesn't need to be refrigerated. They also had to pull the tube out 4 cm because the tube went into his small intestine. So he should do better with a faster rate of feedings now and that is probably why he was so upset yesterday and throwing up so much (not that he wouldnt have been upset).

I am amazed at how well he is doing. He has been afraid to go to the bathroom and last night he said it was too scary to go while being hooked up to everything. He was happy this morning that he can move and it doesn't hurt. So much to get used to. Well, that's about all the time I have to update.


Maddox took this picture last night.

It's Going to be OK

God is amazing.

Today was a hard day for me. I was pretty nauseas all day just thinking about the feeding tube and how I was going to be putting it through Maddox's nose and down his throat into his tummy.

I have been praying about a toy to buy him so he'll have something to look forward to when the procedure is done. I have been leaning towards a certain toy, but it was expensive (for us) and really not worth the price, but it is something Maddox would love.

My parents said they would go in on it. I was so grateful, and yet the price of the toy was bugging me and I kept praying and asking if there was something else we could get him.

Today Maddox's speech therapist told me she saw the toy on sale at Walmart this past weekend. I had been to walmart this past weekend and didn't see it so I figured it had sold out.

All day the thought kept entering my mind to go to walmart and look for it. I finally did after 8:00pm tonight, and I found the toy for 50% off!! I also found one of those wooden shelves with the bins for 50% off (I've been praying for help to reorganize our home).

If God is going to take care of a toy for Maddox, I can rest and trust that He will take care of Maddox during the procedure. I am always so humbled and amazed when God does things like this. He cares about my anxiety and found a tangible way to let me know I don't have to worry, that I can trust Him and that Maddox is in His hands.

I am still nervous about it all, but I have a peace I didn't have before. It's going to be OK.

Aug. 30

August 30th is the day Maddox will have the feeding tube put in. We will be staying at the hospital for 1-2 nights. Hopefully only 1 night.

I have so many different feelings about this. Part of me is relieved that we wont have to stress out about what he's eating or not eating. Part of me is terrified to deal with this. Part of me is so sad that he needs this and a small part of me feels like I failed him. I am not looking forward to placing the feeding tube. At. All.

I know (at least I hope) that once the tube is in the worst part will be over. And once we are all used to it it will be part of our routine.

Mason will be with my Mom while we are at the hospital. He is anxious because we are going to be out of town while he's with my Mom. Usually we are at home.

I still need to figure out what foods to bring for Maddox. I don't know how hungry he'll be, but I don't want to bring too little either.

I still can't believe we are doing this. I have moments of complete and utter peace and then I have moments of complete and utter terror. I have to remind myself to breathe. Just breathe. I know God will take care of everything. He has so far. I am praying, no crying out to Him daily to help Maddox through this. And then I wonder how do I teach such a little guy that Jesus is with him, even though he is going through something very difficult? (a lesson I often need to learn myself)

I feel God is already preparing us. Maddox's GI doctor will be on call the day(s) we are at the hospital. And the nutritionist is the same one we met. I will trust He will take care of the rest. Maddox has not been eating well for the last 4 days. Barely any meat, mainly carbs, and not much of them. It's helping me feel a little better about the feeding tube, because I know how he needs it. The other day Maddox said " Momma, I always so tired. I even tired when I wake up". That's helped to see how good this will be for him.

When I told Mason what was going to happen he felt bad for Maddox. "mom, that's a really big thing for him and he's still little" "he's had so many big things happen already Mom" "when are you you going to tell him? Are you just going to bring him to the doctor and say 'SURPRISE!!' ?!?!? Cause that would be a horrible surprise Mom!". What a sweetie. As much as his little brother drives him nuts, he does love and care about him.

Well, I need to corral these two.

Moving Forward

I talked with the nurse yesterday on the phone, from 5:00-6:00pm. Poor lady. She didn't know what she was getting herself into when she called me ;)

Maddox will be getting the feeding tube next week (as soon as Monday) or the following week. I found out that I will be putting the feeding tube in with coaching. I almost died when she told me that, but it makes perfect sense. I need to learn how to do this because I may have to do that at home if he pulls it out. holy crap.

She also said she is pushing to have us stay overnight a night or two at the hospital once the tube is in. Which I am ALL FOR! I told her to tell the Dr. I am FREAKING out. If he tolerates it well the 1st night, we will be able to go home. Otherwise it will be two nights. I feel much better knowing we will be staying at the hospital surrounded by medical professionals.

Some of the challenges of staying in the hosiptal revolve around .....wait for it...food. (surprise!)
There's a lot of cross contamination in the kitchen, so we will be bringing most of Maddox's food. And the cafeteria doesn't have a gluten free menu, however there is a whole foods place a few blocks away from the hospital, so I should be able to get food for myself, but I don't know that I will be all that hungry.

Because it is being done at the hospital, Maddox will get a kid version of a valium or ativan to help him with the procedure. I asked if they had valium for the moms, but the nurse said no. Maybe I could ask if they have medical marijuannna for the moms.

We tried an appetite stimulant (really just an antihistamine) for most of this week. It seemed to perk up his appetite a bit, but it made him very sleepy. He was taking 3 hour naps (which I admit was a little nice), but then just laying around the rest of the afternoon (so not like him), so I stopped the medicine. And this morning he barely ate anything and a rough start to the morning with screaming and crying. I think once he is getting all the nutrition and calories he needs, he will be less irritable and the screaming will go way down. So, I am feeling a bit better about the feeding tube.

The nurse will call me back today. I think I am feeling better just knowing we are moving forward and not waiting.

I am also PRAYING that God will guide my hand and prepare Maddox and that the whole procedure goes as well as it can. Talk about giving it over to God. I cannot NOT give this over to HIM. When I don't I almost can't breathe. I don't know why this is so hard for me, but I. Am. Freaked. Out. Inserting the feeding tube is not pleasant, and Maddox is going to hate it. I mean hate it.

And yet I know that Maddox isn't fighting any life threatening disease, he doesn't need the tube for life and he is healthy, just not eating enough, and this is short-term. I know parents facing much worse things than this.

well, that's what's going on around here.
We did a week of school this week, and it was so fun. I am getting excited for the fall. Maddox is older now, and it's a bit easier to do some school when he is awake, and he enjoys getting in on some of it, especially the arts and crafts. This is going to be a good year.

Hunger

Well, the adventures with Maddox continue. We met with his GI doc last Tues, expecting to hear that Maddox was normal, just a little guy, but normal. Turns out that isn't the case. Maddox is not eating enough and is showing some signs of malnourishment in his blood work. He won't eat more than 1200 calories and he should be eating between 1500-1800. His white blood count was also low, so they rechecked that. (we haven't heard the results yet).

They are also checking him for Shwachmann-Diamond Syndrome. It has to do with the pancreas not working properly and troubles with bone marrow. But I am not too convinced he has that, and neither is the Dr.If he does have it, it is easily treated with enzymes, although he would need a bone marrow biopsy 1x/year.

The Dr also said that we need to do a feeding tube for Maddox. One that goes through his nose. The reasoning behind this: Because Maddox has never eaten much (because of the allergies and reflux), his body is in an aneorexic type state, so he doesn't feel hungry like he should and he fills up quickly. Which is why he isn't eating enough food. I met with our family Dr and he agreed with the plan, I talked with our nutrionist and she also agreed and has seen very good results with children like Maddox.

My biggest concern is the feeding tube. They don't sedate the children when they place the tube in through their nose and it is very uncomfortable. I also don't know exactly when we feed him with the tube. The Dr mentioned feeding him while he sleeps at night, but Maddox moves around so much at night, I don't know how that would even work. I would be afraid he would pull it out while rolling around and let the food go into his lungs. I obviously have a lot of questions for the Dr. I am waiting to hear from his nurse to see if she can get me in touch with some families who have done this before (Dr.'s idea). As soon as I ask my questions and talk with a family we'll schedule the appt, which I am sure will be right away.

sigh

I was hoping this month would be a nice relaxing month of hanging out at the beach and gearing up for school. next year.;)

So, that is what's going on around here. just tying to feed Maddox and sneak calories in where I can. We did go campling this past weekend. I'll have a post about that soon.

Things I Said I'd Never Say...

Well, it happened. I played the "Do you know there are people starving all over the world who would be thrilled to eat (fill in the blank)?! There are people walking 50+ miles to eat rice and beans. Without soy sauce." card at mealtime.

I am hanging my head in shame.

I swore I would NEVER say that to my children. but i did.

I had just read about the devastation and drought in Somalia and how people were walking 50 miles to get to a refugee camp (I may be combining different tragedies, I am horrible with facts and geography) and was tired of the slumped shoulders of our child and of hearing "sandwiches again?! I don't want to eat sandwiches for lunch again". And then it came out of my mouth. sigh.

Mom, I get why you told us that. ( and yes, my Mom thinks it is hilarious that I said it).

It has lead to some good conversations though. So, maybe it's ok.



















He was sooooo excited to hold the new butterfly