Matthew and his GI issues.
We haven't talked about this on the blog yet ... But ever since Matthew had his g~tube placed & fundoplication (Oct 2005) ~ he has experienced this horrible "wretching" after every feed that is QUITE DISTURBING to watch. We have complained to our GI specialist at every visit, but we are ALWAYS told that "some kids are just wretchers". He has never ever seemed concerned about it. Another point of concern is, Matthew can't tolerate more than 3 to 4 oz at a time. A few weeks ago a friend of ours, Becky (a PICU nurse) was over visiting... She said "THAT IS NOT NORMAL". She said that she'd mention to another GI specialist. Late last week, a therapist was here doing a home visit and was shocked, saying the same thing... She started rattling off all these things that could be wrong. (You can only imagine how terrible I feel!) This past Saturday, Becky called after speaking to the "other" GI specialist... He agrees something is not right and to get Matthew in for a complete work up.
We have an appointment this afternoon w/ this "other" GI specialist. It sounds like there IS definitely something wrong ... And hopefully we'll be getting a complete work up of Matthew's upper GI this week. I fear that he's going to need another surgery.
10 comments:
Dr. Mayman, our pediatric cardioligist (WE LOVE HIM!!) is the one who got us in to this appointment today ... He was sooo mad when I told him this morning about this whole thing ...
He called this "other" GI specialist this morning.
He wants all these tests done NOW.
I am very angry that Dr. Dessenburg has been seeing Matthew all this time and has done "NOTHING" to investigate the complaints he has heard time after time with each visit.
Watching Matthew experience the "wretching" problem is painful for all of us to watch; not to mention how it much feel for our little hero. You can see in his little eyes that he is very frightened.
What Matthew had the misfortune of having is "one" doctor who is a working at his job; not "doing it".
Grandmothers are not professionals; but we are "experienced". If surgery is necessary to eliminate this horrible problem and restore his intestinal tract to normal, then so be it. I welcome it. It "may" take care of the "not wanting to eat solid foods too.
Thank you Dr. Mayman, one more time, for your caring and loving Matthew. Only God knows how much this family appreciates you...... grandma Wright
It would be so nice to have feeding time be a pleasurable experience for Matthew. As of this moment, he appears to dread it.
Uh... well..
I wasn't going to mention names....
Oh.. sidebar!!
Check out the beautiful gliding chair .. Mike made that before Matthew was born... he also made the cushion/cover. He is multi talented, I tell ya! But while he was sewing the cover... he was watching football and had a Captain Morgan/Diet 7UP in hand!!
We need to get a pic of the beautiful crib Mike built, too.
I'm so glad that you were able to get him in to see another GI doctor. Good luck with the upcoming tests. Sounds like Matthew's feeding time is not something that anyone in your family looks forward to. I really hope you cann get that resolved. It is so hard to see your child "wretching". Jessica would choke as an infant and would turn blue and gasp for air. Her primary care doctor would not refer her to a GI specialist because he didn't believe me. Finally the PC saw an episode and got her in to see a GI specialist who did some tests... one involving a ph probe in her esophogas for 12 hours. She had GE Refulx and required medication. It would scare everyone whenever it happened and I figured out how to hold her to help her through those episodes that would happen several times a day. Eventually the meds worked and she didn't have that problem as much until she became a teenager and she has been on meds for reflux for the last several years (and now she has gastritis and ulcers). Oh dear, I guess I got sidetracked. Sorry!
IF Matthew requires another surgery and it will fix whatever the problem is, then it will be worth it. Don't forget that you have a lot of people who care and we'll be here to support you. :-)
(((hugs)))
WOW! Michael made that glider? He does an amazing job! Karl does woodworking too but the most sewing he does is replacing buttons that have fallen off his pants or shirts. lol! I have a sewing machine but he isn't allowed to touch it.... but I stay away from his power tools so we are cool. ;-)
I am so glad you were able to get him in for this appointment. I will be so anxious to hear what they find. It would be so wonderful if the wretching could stop and if he would then like to eat. That will be an exiting day for sure. I will pray so hard for all of you and know that our little "braveheart" will get through this like he has done with everything else.
God Bless the King Family.
I love you all so much.
Mom (Grandma Sue)
I don't want to "hog" the comments; but this beautiful picture was added "after" my first comment. Matthew looks so "noble" standing there by his grown up glider chair that daddy made, pillows and all.
Matthew absolutely "loves" his nursery that daddy also designed and constructed. With the shutters open, it is always bright and cheerful. Matthew loves to open and close the shutters at "his" command. He is, indeed, a busy bee when circling the wagons and roaming his home.
Everyday is a new day of adventure for this little guy. He walks "miles" and with delight. I wish I had his enthusiam........
Matthew has begun to add a little fancy footwork in his step. Sometimes he will start off with a long concentrated step prior to taking off into a run. He changes his gait and direction; thus, keeping the adults flexible on their toes. The personality he puts in his walk is as expressionable as his face. Never a dull moment while in his company. My love for Matthew is "endless".... grandma wright
Wow! Way to go Mike! That's incredible!
As for Matthew, I'm reading these posts in order, so I hope to hear better news in a minute when I get caught up! Thank God that someone finally listened to you and pursued it! I get so angry at our doctors who have let things go that ended up being important!
My computer is taking forever to go from page to page today, so if you don't hear from me quickly it's because my computer is stuck and I've given up waiting.
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