We interviewed a new Pediatrician yesterday. I wish so much that I would have made this a priority a very long time ago.
One of her first questions to us was why in the world Parker was on Pediasure and not something like Neocate. It was painfully obvious to her that Parker has not been getting his nutritional needs met. Oh, and why didn’t he have a g-tube placed. I told her I had visited BOTH a Pediatric GI specialist and an Endocrinologist and BOTH had blown me off with these very concerns.
She said she would be making a few calls to both of these Specialists today.
Did you read that? SHE said that SHE would be making calls to both of these specialists today. FINALLY someone willing to be proactive in Parker’s care. Someone with clout and the degree behind it.
Oh, and did I tell you this Pediatrician is also a REGISTERED DIETICIAN? Yeah. I am thinking I have hit pediatric gold here.
I had her take a look at Parker’s teeth which have started looking very bad in the last few months. She feels that it is possible that the on going infections he is experiencing could be from the unusual sort of decay she is seeing in his mouth. It is most likely medication related, which I have been saying all along, but could also very well be due to LACK OF PROPER NUTRITION. Again an issue I have brought up over and over with several specialists.
Parker will be admitted today at PCMC. He will be undergoing blood transfusions, an endoscopy, ph probe, be seen by a pediatric dentist, started on a new formula, and a few other fun activities.
I will be taking Parker up by myself, checking him in by myself, staying with him overnight for at least two nights by myself and then bringing him home by myself. Reed has meetings that he feels he can’t miss even an hour or two of this week. I’m feeling a little overwhelmed as I will be on my own for everything, INCLUDING all the decision making that will need to be done. It will be my job to handle all of this AND make sure that things still run smoothly at home with my other kids.
Sometimes I wonder how just one person is supposed to keep so many balls in the air while maintaining some sort of sanity too.
Oh YES!! You certainly have found pediatric gold!! We were blessed with a ped that was very proactive in Gus’ care and it was such a weight lifted off of me…finally, someone on the same page as me! lol!!
I too have had to go through those hospital admits, overnights and such by myself…basically for the same reasons(husband needed to work). I can tell you are a super advocate for Parker so I’m sure any decisions you make will be the right ones!! Just make sure you have lots of coffee and chocolate…that always makes those hospital stays bearable! lol!!
We’ll be praying for you all…
Tammy, Oh praise Jesus that you have found her. I hope this will start a turn-around for Parker. Bless your heart Tammy, I am praying you through this hospital stay. Sending love and prayers!
It sounds like you’ve hit the doctor goldmine! GOOD LUCK with everything this week.
A good doc makes a world of difference, as I’m sure you know. I don’t know what Neocate is, I’ll have to Google.
As to how one person can keep so many balls in the air? I don’t think sanity is optional, so I say let the household crap go, call someone in who’s always saying “let me help” and say “I need food in the house and the toilets scrubbed. Make it happen.”
Then you pack a 6 pack of Dr. Pepper, your favorite snack, a mindless book (rereading Harry Potter works)and try to breathe during the waiting time while Parker’s having his tests and such. Then you pray. And think of everyone praying for you.
I hope everything comes out just the way you need it to, and I’m glad you switched Pediatricians.
Wow! What a find! I’m so glad you’ve found such a gem in a doctor!!
Hooray for finding the new Ped!!!! So glad she is so proactive for you guys.
About the teeth~ does Parker have enamel hypoplasia? it’s not uncommon in kids who were premature, intubated after birth, nutritional, etc. William has it from being intubated the first week & a half of his life.
Big hugs to you my friend.
Love ya!
Sounds like a great Ped find! I’m so glad to read this – and I hope she continues to be so helpful. I’ll be praying for you and all the hospital testing etc…that has got to be very hard to balance everything.
You deserve good news, congratulations. Let’s hope she is all you have hoped for plus more.
Good luck for the next few days, we are thinking about you guys!
Woot for finding the new doctor!
I am not sure how you manage all that you’ve managed so far. I guess you do what you have to do when you have to do it. Sometimes you just take a day at a time, sometimes its minute by minute. Okay, enough of the hokey sayings. I wish there was some way that I could help with the other kids or something.
Yay again for the new ped. I am glad that she’s going to talk to other doctors for Parker.
Hallelujah! A doctor who wants to work WITH you!
Good nutrition goes a long way toward a healthy child – special needs or not.
A warning, though – Neocate is expensive. If you have to buy your own formula like we did, that will be a challenge to overcome.
Tammy, I am so thankful that some prayers have been answered in finding a new doc. I will be praying for Parker with all of the testing he is about to have. Michael sends hugs as he too is scheduled for endoscopy in two weeks and he has teeth issues also. I will be interested in comparing on that issue. I was thinking reflux as the cause but poor nutrition could be another clue for us. God bless you both in these next couple of days.
Barb and Michael
Im so happy to hear you found a Dr who is willing to go to bat for Parker. I pray she is just what you and Parker need.
Remember that you are not alone, God is always with you, and you have a very big support team here in blogworld that is always lifting you in prayer.
slow deep breaths–you finally have found a great doctor to guide you and assist you to get parker the care you been seeking–you saw the problems, you figured out the causes on your own even, and now a doctor has told you were right and is going to help you. be brave and she will support you. follow your common sense, it has done you well so far. god bless you all and i wil keep you in my prayers–noran warot–indiana
Once again Tammy I’ve seen a miracle happen. I think this new pediatrician may be just that miracle. You need someone to *listen* to your needs and concerns. Parker isn’t just a patient, he’s your sweet little boy. You’re not just some mother you’re *his* mother who has fought tooth and nail for Parker every inch of the way. I pray for better days to come for Parker (and you) and that perhaps a new pediatrician may be able to get Parker the help he so desperately needs and deserves. It shocks me that you have to manage everything alone but then I suppose when it’s been par for course for so long perhaps perception gets skewed.
I will continue to pray for support for you and wisdom for those attending to Parker and of course that the Lord will continue to carry Parker on this journey here and that Parker will continue to be comforted in His never-ending presence. I hope pain will be minimal and that this will be the beginning of a turn around for this sweet choice lamb of God.
Many hugs from Vermont. Kitty
Twitter: nehimomma
Aug 1, 07
To be honest i was wondering why he wasn’t on a g tube yet. I hope your insurance will cover it once he’s being fed by g tube. I’m on a site http://www.parent-2-parent.com/ It’s has tons of parents and tons of info on g tubes, j tubes, fundo’s, reflux, FTT, respitory problems, you name it, there are threads on it. Lots of people give away there neocate (& some sell it) because they have to change formula for various reasons. They are many that give away or sell lots of other supplies too. We just had to put wesley on pediasure (additional to other food) and a gal sold me 48 cans for only shipping. Another gal is going to send me her daughters tegaderm that she doesn’t need.
A wonderful ped can make all the difference in the world, hopfully this will help him get stronger and the other med things he needs done will finally be able to be done.
YES!!! I’ve longed to hear the words “a pro-active pediatrician for Parker”. It takes a devoted, persistent mother to advocate for her child…you’re the woman.
I’m saying a prayer of thanks for the new pediatrician and a prayer for the coordinating of Parker’s care that he will begin the road to healing.
Love, hugs and prayers always.
This new pediatrician is heaven sent, Tammy. I’m so happy to hear this news. And I can only imagine how overwhelmed you feel but your other children are going to pull together to make this work. I’m sorry about all the testing he’s facing. Reading about this new doctor is so encouraging though.
Your new pediatrician sounds like a Godsend. I hope that everything this week goes well.
I’m so glad you could finally get together with this pediatrician Tammy – I knew she would be perfect for Parker! I’m glad you guys like her – soooo happy for you!!!!
It is great when you have a great pediatrician to help you with coordinating care for your child.
It sounds like you have certainly struck pedatrician gold! I am praying for you and Parker. Praying that you will feel God’s loving, comforting hold on you both while you do you long list of things, alone!
Praise God for the New Ped!!!! Can’t wait to hear how she rattles the other doc’s cages
I think “the Wiz” has the best plan for the rest call on those that have said “how can I help” let them so you can focus on Parker for these next several days. God is watching over you and we are all making sure Parker is on the top of the list 
(((BIG HUGS)))
Kim and Miss T
Okay Tammy, Rhett and I are coming up either tomorrow or Friday to be fitted for his holter monitor, so be on the look out for us!!
Hope you get some answers this time. HUGS!!
That new Doc sounds wonderful. I’m so glad you found her.
And one more thing….You can do this. Your family at home will be fine while you are up at Primary Children’s, and you will be ok, too. Hang in there!
I’m really glad you have this new pediatrician! Prayers answered! Praying you’ll get some answers too!
Tammy, you are one of the most amazing mothers I know. You can handle this and we’re all praying for you as you handle this.
WOW – when I seem to think that life has just thrown me WAY to much, I have to think about you, and Heather – two of the bravest woman I know!
You and little Parker take care, I can’t even imagine what you go though every day – but you are in my prayers!
Always!
I’m so glad you have someone that is IN Parker’s corner now. I don’t know anything about Neocate, but I hope it works for him.
Many hugs mama…from Miss E and I.
I hope she can make a difference for Parker.
Yeah! God is so good to answer our prayers, even if they seem last minute. I am so happy you have found a good and CARING doctor.
Keeping you in my prayers!
Hugs!
Tammy,
make sure you are comfortable with the idea of a g-tube. Sam, our little 2 year old with Downs, had a g-tube placed 9 months ago and it has been utter hell. He only needed it for 2 months, then he started drinking from a bottle and eating at the table… and Sam has had 3 surgeries to try and fix the hole we put in him… see pics… picasaweb.google.com/brothertyler
The surgeons are terrible at follow up care, and wound care (because that is what a gastrostomy is, a wound… is almost impossible to find. During Sams fourth stomach surgery I was talking with a lady who had her child use an NG tube for the first 5 years of life and it worked like a charm… oh if we could go back and never have a g-tube placed. you are always worried if it is leaking, whether they will pull it out, whether it will heal, etc etc etc. Email me if you have further questions. Thanks for your blog. Your Parker is awesome!
I hope you get some answers this time….And is the doctor you are seeing Dr. Conner? If so she is wonderful. That is who has been caring for Chase ever since he draw his first breath. We love her!!!!!!