But instead of getting easier, I swear it is getting more frustrating. Nothing wants to come together.
Because of the stitches between Parker’s two new stomas, we can’t seem to keep an ostomy bag on him longer than just a couple of hours before it begins to leak. From start to finish right now it is taking me 45 minutes to do this care considering I need to care for two stomas now. It is rough on Parker’s skin to change these bags so often. It is rough on both of our nerves. There are a few places where the stitches have pulled out and taken a bit of skin with it.
Then this morning we discovered that Parker’s lower stoma is draining stuff it shouldn’t be. I have a call into his surgeon. We actually have an appointment tomorrow afternoon. But this is one of the ‘warning signs’ to be on the watch for, so I’m not sure if they want to see Parker sooner.
G-Tubes leak. A lot. Parker is one active kid. So when connected to his feeding pump and he hops around, it loosens the connections and we have formula and meds everywhere. Yuck.
Parker had an exceptionally rough night last night. His sats plummeted down to 80. We did all kinds of breathing treatments. We suctioned. We cussed. We did chest compressions. And we prayed. We think he was trying to hack up a mucus plug the size of his foot. He’s doing better this morning.
I, however, am wishing that I could throw back a few tall shots of something for my nerves. Unfortunately I don’t drink. Drat.
Parker could use prayers of healing. Prayers that what is going on with his lower stoma isn’t anything to be too concerned about. Prayers that it won’t be necessary for them to have to go back in and work on anything. Prayers that this little guy can stay out of the hospital.
It wouldn’t be fair though if I didn’t share a few precious blessings we have received in the last few days:
* Without all the tape and stuff all over Parker’s face it has been discovered that he has the exact dimple in his right cheek that Reed does. Simply precious.
* We were visited by some Angels. Real, true living ones. I can’t begin to express their positive impact on our family.
* I have a husband who is so willing to be totally hands on in Parker’s care. Even to the point of staying up all night with him so I can get some sleep. I have heard of so many marriages not making it when child with special needs comes along. Reed has worked right along with me to keep things with Parker going as smoothly as possible.
I’ve been trying to imagine where the heck there is room for all the tubes, tapes and stitches on Parker’s little body. {{{HUGS}}} Parky. {{{{HUGS}}}} Tammy and Reed. My prayers continue.
Yay for precious dimples and angels.
And I know the kind of husband which you describe, thank God I have one.
ox
Prayers of healing coming your way.
Glad you’ve had some nice moments in between all the stress and worry!
I am praying right now for Parker, for him to stay out of the Hospital and for his g-tube site to heal. I’m also praying for you and Reed to continue have the strength that you need to continue on this journey that you are on. I’m so glad to hear that Reed is such a wonderful husband and helper. I too am thankful that my husband is such a wonderful helper and that our marriage is still strong. We are blessed!
Love in Christ,
Sue
Tammy – I hope that you hear from the surgeon soon and that it is something that will be okay. Prayers coming your way
We are praying too. I can’t imagine that stress of the medical care but you are doing a wonderful job. Reed is awesome too! It’s nice you have each other. Give Parker a kiss from us.
Oh I feel so bad for you, Reed and poor little Parker. I am praying that Parker can heal and not have to go back in the hospital or have anything else done to him! He is beautiful, and now a sweet dimple to add to it! It is wonderful that you are able to find positives when things are so hard. Not many people could.
Love to you all
Amy
Im praying for Parker! Those are definitely blessings. Praying for many more blessings to come your way.
Prayers for healing coming your way. And lots of cyber hugs. Please pass some along to Reed and Parker of course.
Much love, hugs, & prayers.
It sounds like you are truly blessed in the husband department! I continue to pray for Parker’s healing and am praying now that his stoma will be okay and no surgery!
In His Love and Blessings,
annb
Keeping you guys in our prayers. So grateful for the tender mercys being sent your way – Heavenly Father is definitely looking out for your sweetie!
Praying that the surgeon can help and Parky can heal up asap!
Sending lots of love, prayers and hugs!
Continued prayers as always, and darn! I entered the camera contest and you didn’t win. I was going to have the camera sent to you if I won. Drats!
Take care.
Cheesy
Continuing prayers. Ill put your names on the temple prayer roll this weekend, too. Please tell us what the angels did?!
Twitter: nehimomma
says:
This site has a lot of “tricks” for tube fed kids to keep them from leaking and such. Her daughter has EE and has been on a tube since she was tiny.
http://www.reflux.darshani.com/
hope it helps
I’m praying, and posting this to a forum to get a few more prayers of healing for Parker.
Sending you lovin’!
You are such an inspiration to me when you continue to revel in the many blessings that are often-times over-shadowed by your trials. You are a lovely person and Reed..a true angel that is right by your side.
I pray for Parker to continue to heal and to overcome these obstacles. I see his current pictures and can’t believe how much he’s changed. Such a sweetheart.
I’m praying healing prayers for Parker.
I’m praying for you too!
love ya.
Annie
Prayers continue to flow – God bless you mama, papa and family! >>
Praing for Parker to stay out of the hospital, and a miraculous healing. Sending you a shot of something strong!
Oh, we have so been there with the gtube. My daughter Angela (now 11) was on a gtube from 11 months – 3 1/2 years old. She has some un-named connective tissue disorder and CANNOT have tapes, etc on her skin, as she starts breaking down within a few minutes.
I do have some tricks for gtube stoma leaking though! First, if he’s already on a button, those balloons do…somehow, I don’t know how it works…loose volume and start leaking more and more until eventually the balloon pops and you need to replace it. Has anyone shown you how to check the volume of the balloon AND how to gage if it’s too tight/too loose/just right? It sounds to me like it’s fitting too loose.
Second, if there is some leakage, you can order 2×2 IV sponges. These are 2×2 gauze pads that have a slit cut in them. But it around the base of the tube between his skin and the button. This will absorb some of that leakage.
I swear that changing a g-tube is SUPER easy. I was scared to death the first time, and then I didn’t have a choice as Angela’s popped at home. (later she learned to pull them out fully inflated!) I had my then 11 year old son hold her hands while I carefully read each step of the directions that were on the package. When it was all done my son said, “So..why was that so bad? What were you worried about?” I told him, “Ummm HELLO! That hole goes right into her stomach!” His response? “OH COOL!!!” From then on it was a piece of cake. I learned lots of tricks, like “lubricant” can mean anything EDIBLE that will allow the tube to go into the stoma easily! This includes peanut butter, butter, vegetable oil, ANYTHING, cuz after all, it’s going right into the stomach! This comes in handy when you’re sitting at a restaurant and your kid says, “here mommy!” and hands you a feeding tube!