Shedding Light

This article is so very true. Parents of a special needs child (sometimes even whole families) are exhausted almost all the time, mentally and physically and emotionally. Parents of a SN child know more about their child's diagnoses than even the doctors. I have done so much research on Liam's diagnosis than I can even begin to explain to you. Every month or so I re-research everything on the off chance there is new information. SN parents minds are always busy. I know mine is. "What time does Liam need a time feed?" "When is his next dose of meds or breathing treatment?" "What PT aspect do I focus on today?" "What appointments does he have today or comming up this week?" It's never ending. My brain is always consumed with thought on what my son needs. It is so consumed I forget things for myself. Since last Friday I've missed two doctor appointments for myself. Pretty important appointment to get results of an ultrasound and X-ray I had. I forget to call my friends and family back. If it has nothing to do with Liam's SN I forget to do it. He is the most cared for person in this house. And I know that it's not always fair. But it's what it is. The most important one to be (yes even more than being exhausted) is that SN parents are lonely. It's a very lonely journey. I went through 2 years and 9 months so far (that's how old Liam is) without having anyone to talk to. No one wanted to be around and see my son so sick. I understand they didn't want to experience that but did I want to experience that? And did anyone once think how it was for me to sit alone in NICU or any other hospital stay? Did anyone think about the phycological damage it did to me to want my son almost die on many occasions or to have him turn blue the very first time I held him because he wasn't getting enough oxygen? Nope. It never crossed anyone's mind. I'm not whining and complaining but sharing a truth that is so taboo to so many out there. This is the life. My life. Liam's life. I'm shedding more light on this article by sharing my thought, feelings and experiences. The only constant through all this was Liam. He was the only one always there but he was the one who was always sick. I would sit in his hospital room for hours when he's sleep and just stare out the window wondering "why us?" And "why do I have to do this alone?" That hurt almost as much as watching Liam fight for life. Being a special need mom I smile to hide the pain. No one wants to see you depressed, exhausted, or know anything about this. We have more bad nights that someone with a newborn. Emotional we can be unstable. I hold it together with my fake smile daily because when you can't you get criticized. You wear sweatpants out in public to pick up your older child from school, don't have the energy to put on enough make to cover the dark circles under your eyes and the world comes crashing down on you. This is life. Real life. http://m.voices.yahoo.com/5-things-know-parents-children-special-11493864.html

#specialneeds #parent #kid #mom #cdh #chroniclungdisease #gtube #tubefed #failuretothrive #gastroparises #life 

      {photo of Liam today in the car. He took his shoe and sock off and put all his toes in his mouth. Why? Because he was bored waiting for sister to get out of school. This is life.}

Turning Of The Tides

We may be getting our hopes up here BUT we think we are at a crossroads here with Liam and oral eating. It's a turning of the tides. A huge step. 

Liam hasn't been tolerating his continuos for about a week now. I've tried lowering the calorie content and lowering the rate and it hasn't worked. He wakes up screaming in pain and this continues until I stop the feed. After the feed stops he sleeps without waking up at all. 

I tried Milk of magnesia in hopes that it would calm his stomach but it did nothing. I tried Motrin for pain but it only did so much. 

The last couple of days Liam has been making up the calories by eating them! Yes folks I said EATING!! 

So Liam hasn't been gaining it loosing any weight on his formula feeds. I am extremely curious to see if he gains weight eating. I've been packing his food full of calories where I can. Let me share with you what Liam ate yesterday:

(Pic from Saturdays breakfast because I could find Sundays breakfast pic. Sat breakfast was home style hashbrowns eggs and biscuits and gravy)

Sundays breakfast was eggs, sausage, pancakes and syrup. 

When I make his scrambles eggs I add lots of butter. Same for the potatoes. It adds extra calories where I need it to be added and I noticed he eats more when I use lots of butter. 

For snack he ate an entire package of fruit snacks. That's 80 calories in that one sitting. I discovered strapping him I to the high chair he was more. 

Before dinner he wanted apple suace. He ate all this apple suace and a few peices of cereal. 

For dinner we went to Casa Grande. Liam ate lots of chips. I know I gave him 5 and I'm sure his uncle, aunt, grandma, papa, and cousins gave him more. He also ate a French fry, the cheese off 4 tacos (everyone is always more than willing to share their food with him knowing he needs to eat), some taco meat and a few bites of beans. He also tried cutting his meat and cheese. It was the first time he held a knife and I was shocked he knew what to do with it. 

After dinner we had desert at basken Robbins. I shared my ice cream with him. It was called tax crunch and had lots of chocolate in it. He ate 15 half spoon fulls. Every time he asked for more I was more than willing to oblige. 

As you can see yesterday Liam ate ALOT.  I am so proud of him and am praying and hoping that he has gained weight eating and that maybe we can start discussing what to do next with his GI. I know it's always 1 step forward and 2 steps back but still just watching Liam eat brings me joy. 

Feeding Liam: Bolus

Liam's day time tube feeds are done bolus. That means he gets a bigger volume of formula at one time. Liam gets 3 bolus feeds daily of 4 oz in one sitting. Here how it's done:

I hold the button firmly with one hand then insert the extension by making sure the line on the extension is lined up with the notch in the button. 

Then I turn the extension locking it into place. 

Next I connect the 60ml syringe to the large port of the extension. The small port we use for his meds. 

I start his feed by pouring in the first 60mls (2oz) into the syringe. At this point the extension is still clamped so I can get an exact measurement. 

Then hold the syringe up, unclamps the extension and let gravity do it's job. When the formula gets to the bottom of the syringe, I clamp the extension and pour in the last 60mls of Liam's feed. 

I let his feed run all the way then just sit there letting him vent. This allows has to escape. I also do this because sometimes Liam will burp or retch and end up vomiting if not. This way it all goes through the tube and not his mouth and possibly lungs. Liam usually only needs to be vented for 2-3min or so. The while feed process takes us about 5 minutes. Liam has been fighting it lately. He wants to eat by mouth but doesn't want anything. Luckily yesterday and today things started going better. He didn't fight the feeds today and he ate. 

Good news is he's getting high cal stuff. All his favorites. Bad news is it's all empty calories. Well mostly anyway. He loves apple sauce, Doritos, French fries and random other things. He's been refusing actually meals. For lunch yesterday I did get him to eat some top roman noodles. It wasn't much but it was something. He has his moments. His GI said to give him whatever he wants to eat to get him eating regularly then we can start working on types of foods he needs to eat. OT said the same. Me? I decided nothing will ever be perfect and I need to stop trying to make everything perfect and just work on one thing at a time. Gotta keep his tube feeds going and him tolerating them. And I have to continue to offer him food in hopes he will eat them. Like with all thing partaining to Liam, some days are better than others. <3

Attached by the cord

Last night I did a post on how I set up Liam's night feeds. Tonight I want to do one that shows how I get Liam ready. 

He is literally attached to the cord, or in this care tube, all night long. When Liam had a GJtube I had to worry about it getting pulled out because that resulted in a immediate trip to children's ( 1 1/2hrs away) so they could put in a catheter to keep the hole open. He would end up with an IV and have to stay until they could get him in to surgery to replace a new GJtube. Then they would keep him until he tolerated full feeds and gained so many KG per day. This would usually be a week long process. 

To avoid this I started wrapping an ace bandage around Liam's belly to hold the tube in. Yes Liam does have a Gtube now that I can replace myself but we want to avoid stretching the hole. We also don't want it coming out in the middle of the night and leak all over as well as take a chance at his hole closing. Here's how Liam gets ready for bed:

This is the top part of Liam's stoma. It's actually looking really good compared to past. 

And the bottom of his stoma. He just stopped antibiotics for an infection of the stoma. It's a little irritated here because Liam pulled his tube out today accidentally. This is how we start, with a clean stoma. 

After cleaning Liam's stoma I use triumcinolone cream. This help with all that red tissue you saw above called granulation tissue. It's shrunk his in half in just a few days. Sometimes if the stoma looks really irritated and is sensitive ill use neosporin with pain releaver in it. It really does make a huge difference. 

Now tonight I had to use this stoma paste stuff instead of the normal stomahessive. We're still waiting on his refull to get here. This stoma paste seems to burn Liam and it smells bad. Putting the cream around Liam's stoma actually prevents this paste from burning and irritating. I had to figure that out on my own. You'd think they're be a warning on the tube but there wasn't one I could see. Still it's the only stoma anything we can get at our local walgreens or any local pharmacy. Liam's regulate stuff, stomahessive has to be filled by the walgreens at children's hospital (1 1/2 hrs away) and sent to us. They are a specialty pharmacy that deals with the special needs stuff like this and know how to work with CCS. I love the stomahessive because is a powder that when it gets wet turns into a glue like substance. Liam's tube leaks a lot on ots own I apply lots of the powder and it works like a charm. It also is easier to remove than that paste. 

Next comes the split gauze. I prefer 4x4s over 2x2s because they seem to soak up more when needed. I place the gauze between the button and belly. The paste or stomahessive bonds the gauze to his belly. What I didn't get a pic of was how I put in Liam's extension the. Take more gauze and place it under and around the extension but above the button. This braces the extension keeping it elevated and flat. If I don't do this the extension pulls on Liam's button causing the hike to stretch and causing Liam pain. 

Lastly I wrap his belly with an ace bandage. The one shown I had cut in half because it was so long, then sewed it so it was wider and fit his abdomen perfectly. I also used Velcro for a fast way to secure the bandage around his belly. Ace bandaged are pretty cheap these days. You can even find them at certain dollar stores. Velcro is only a few bucks and you don't need much. Your looking at maybe $3 spend to keep in his feeding tube. It's amazing how $3 saved us many many hospital stays and surges when Liam had a GJ.

When Liam was hooked to his pump during the day we couldn't keep him cooped up. Thankfully the ace bandage had given him the chance to realize his tube was being pulled out before it actually happened. He ended up stopping before the tube would come out. Liam's night regimen is pretty straightforward and simple as can be for a tube fed child.