In other news....
We are getting pretty excited about Easter around here. We are doing all the usual things like egg hunts, egg decorating and picking out cute Easter dresses and outfits. But more importantly, we are remembering the Resurrection story, talking about Jesus and trying to keep the Real Reason for Easter the top priority.
But holiday or not, there is regular life that must be tended to. Today we took Lucy BACK to the hospital about her G-tube. I'm ready to pull my hair out! She's got the granulation again around her entry site and its very painful and bleeds. She is also having trouble tolerating her feeds past a certain rate of infusion. So we got some great minds together and tried to come up with a game plan. As with most things along this journey, Lucy is the first patient at St. Jude to have this granulation issue. Many patients have had the granulation, but none have had the recurrance like Lucy. It is so frustrating!
The real answer is that Lucy needs to start eating, gain 10 pounds and then we can remove the tube. Easy peasy, right?! I only wish......While we were at the hospital Lucy got to help hang her art in E Clinic. She was so proud and so were her Mommy and Daddy.
Oh Maddie is so cute, I am praying for her. You know when I think of digestion I think of Celiac, it is getting pretty common.
ReplyDeletePraying for Lucy and weight gain to remove this g-tube!
Nice picture Lucy. LOVE it!
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yeah. I'm convinced that's what it is. I have Celiac disease, my mom does....I'm leaning and praying for that!
ReplyDeletepraying for maddie & rebecca.
ReplyDeletelove you,
jennifer
p.s. loved the jack post. I have 3 of those. can totally identify. i've found that laughter is the best medicine for perspective. but I can tell you that beside my children's salvation....safety is tops on my prayer request list. i wish i had a dollar for every time i say "danger" "danger" -- i've found that more effective than "stop". ;-)
Zach had granulation more with his Mickey button then his Stomma kind....maybe change the type of button? Also look info a belly button cover...helps with leakage. Zach never tolerated a high feed rate. 1 can always took us 4 to 6 hrs at his puke most time. Even now 2 yrs after treatment he was losing wt and we tried to use the button for feeds again...instant puke. Some kids just do not do well. Things that helped... Soy based formula and acid reflux med....zach had severe reflux as a baby and dr though maybe all the formula brought it back up so to speak.
ReplyDeleteKate... What are you feeding Lucy through the tube? Owen has been tube fed forever with no end in sight. With his fragile cardiac condition, puking is extremely common. I can't give him more than six ounces every 90 minutes, but it used to be 2 oz every 30 min..so improvement! Owen didn't tolerate all the formula they wanted me to feed him...and I wouldn't want to be fed that al day either. When Owen turned 2 I started blending his food in the vitamin and injecting that in his tube and the change was instant! Significantly decreased puking and he tolerated larger volumes with more calories. His body needed real food! He also gained a ton of weight. I blend oils, nuts, fruit, veggies, meat, you name it. If you want some help with it let me know. I know you are just supplementing herregular oral feeds since she obviously knows how to eat, just lacks the energy. Even just injecting a tbsp of olive oil is 160 addtl calories. Blend up an avocado with a little whole milk and inject for 200 cals. Every litle bit adds up...too fast for me! Ha. Good luck. We continue to pray for Lucy!
ReplyDeleteDoes Lucy have an appetite if she's getting fed through the tube? If that's putting the stuff into her stomach, I wouldn't think she'd feel hungry very often and actually WANT to eat. But I have no idea how that works, so sorry for my ignorance... I'm trying to understand!
ReplyDeleteThe way my mind is turning: if the lessened the tube feeding, she might get hungry and want to eat real food. But I guess that wasn't happening pre-feeding tube, hence the need of it.
prayers for your whole family, as always.
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Oh Wow Kate, I am so sorry for your family. They say when it rains it pours, well it is time to stop and let the sun shine down on your family. Let the flowers blossom and let Little Lucy srout along with your niece. My thoughts are with you daily.
ReplyDelete*sprout-sorry for the spelling mistake.
ReplyDeleteKate, my two nieces have had digestive issues for about 3-4 months now and my sister-in-law had their doctor work them up for everything from lead poisoning to Celiac disease to some sort of bacterial infection. Everything was negative, so they gave up. The girls are finally getting better. It's been such a warm winter this year, everyone seems to have the same conclusion that it just didn't get cold enough to kill everything. Atleast here in the northeast, there have been some odd illnesses this winter! I hope your niece feels better soon. I also was wondering (like another post here) if you are working with a nutritionist to find out how to add oils and other empty calories to Lucy's feeds? I used to work in a home based program and remember some of the kids, especially those with cerebral palsy, getting a lot of empty calories. Continuing to pray for Lucy and your Momma's heart.
ReplyDeleteHello...I've never posted, but have followed your story for some time. A 'heard from a friend who heard from a friend' kind of thing. I just felt compelled...dealing with granulation tissue was almost worse than treatment! My daughter, Emily, was diagnosed with medullo in July of 2008. We just got back clean MRI's 3 years post-treatment (she'll be 4 years post-diagnosis in July), so we've been around the block a bit. She had a g-tube for a little over a year and suffered with granulation tissue for several months (plus several attempts with silver nitrate) before we finally figured out what to do. We made a paste of Desitin or Butt Paste (high zinc oxide content), regular Maalox, and a few drops of tea tree oil. We made it creamy, but not too watery and applied it liberally several times a day with a q-tip to the tissue and then put a 2X2 pad (cut up the middle halfway) between the tube stopper and the paste. It shrank almost overnight, quit bleeding and hurting within a few days, and healed within a couple of weeks. I hope this will help...
ReplyDeletePrayers and blessings to you and your family...
I had a long post and it disappeared!
ReplyDeleteAnyway I guarantee Triamncinolone OINTMENT not the cream. Apply over the tissue, then cover with a split gauze and tape at the bottom so it doesn't come off. It contains a steroid which shrinks the tissue and works beaurufully!! It's RX so get u a script before the weekend. By Monday you and Lucy both will be happy ;)
Go to your local Walgreens and ask the pharmacist for some Calmoseptine (non rX, but they keep it back there) and slather it on.. Also change using gauze to fabric . The gauze always made my daughters GT much more. I know how you feel with rate though, my daughter cannot go past 50 rate per hour or she starts to retch. We switched to peptamen jr 1.5 which helped but still cannot go much faster.
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