Megan's Gagging Isn't Any Better

[mouse]

Tanya, I am so sorry that Megan had such a bad night and also you. I will keep you both in my prayers that there is a turn around soon. I think that sometimes the sickiest children have the most uplifting smiles and chuckles.

[evie]

TCA, my heart just breaks for you and Megan!! you have both gone thru so much for so long!! Add my prayers for healing and patience for both of you + the who;le family. I used to be exhausted when we got thru chicken pox/ 3 or bad colds. did have a daughter in and out of hospital a lot/ unexplained staph infection. later in her 40's she was found to have 2 extra kidneys, 1 was infected & had to be removed. infection a few years later & infected tube had to be removed. Kidney problems seem to run on both sides of my family. Just hoping this new tube or ? will fix Megan enough so she can have her surgery in august.

rest yourself when you can. evie

[TCA]

Thanks everyone for the well wishes and prayers. Keep them going, because they are paying off. She had another bad night, but is more like herself this morning. She had a little more energy and was smiling some. That helps so much!!! She' not 100% yet, but it's good to see her back up to 70% at least! Maybe she just got a little bug since we spent so much time in hospitals on Fri. If she did, I hope she gets over it quickly and without complications.

Fiddle Faddle - I'd love to see the DVDs!!!! I"ll PM you soon. Wow! You are so accomplished. I'll see if my brother has any cds left from his band that I could send you if you would like. It's very folksy, but it's the tradition here. I took violin for a while in college. My professor was from CA and soooo funny. When he found out that I grew up on Lookout Mtn. he immediatley wanted to know if we handled snakes in church!!! Is that really how the world veiws those of us from the hills????

Judy - The zinc really seems to be working!!! Her skin looks better than it has in months!!! It still has some scaley patches and some redness, but it's a lot better. It's amazing how a mineral can make that much difference!

Evie, bless your heart. I know that must have been scary with your daughter. My dad had a kidney transplant when I was 8, so we've seen a lot of kidney issues too. Did all 4 of her kidneys function at one time? That's interesting to consider. I had a friend born with only 1 kidney, but I never heard of 4. Thanks for the prayers for patience. I'm not so good in that dept.

[Guest nini]

Tanya, I just read through this whole thread and I am so sorry that you've been going through so much with little Megan... my heart goes out to you and prayers are being said. I've cried the whole way through this thread thinking about the stress you must be under.

When I was pumping for my daughter, I found that the Avent Isis handheld pumps worked the best for me... manual pumping gave me more control and I was able to increase my supply just by altering the pressure of the pumping... I had two manual pumps so I could do both at once... not every pump works for every mom, so you may need to find one that works better for you... my sister swore by the Medela pump in style...

{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}

[Judyin Philly]

TANYA--I SENT THIS ON TO MY CHIRO DR...SHE'LL BE HAPPY

Judy - The zinc really seems to be working!!! Her skin looks better than it has in months!!! It still has some scaley patches and some redness, but it's a lot better. It's amazing how a mineral can make that much difference!

Evie, Thanks for the prayers for patience. I'm not so good in that dept.

I'LL ADD YOU TOO..PATIENCE IS NOT MY BEST ATRIBUTE EITHER.

JUDY IN PHILLY

[Nic]

Hi, I know I mentioned this before, but, is your daughter on target developmentally with everything else? My youngest son, not my Celiac, had a lot of trouble with gagging as well. He was 10.8 lbs. at birth and was still only drinking about 3 ounces per bottle at 5 months and could not handle any food for quite a while. He had hypotonia (low muscle tone) which caused developmental delays, primarily gross motor but it did affect his ability to swallow, and then as he got older, to chew as well. His tongue, cheeks, and jaw are weakened. He is currently receiving feeding therapy to help him along (he is now 4 and will still gag and throw up if he cries to hard, coughs to hard, sneezes to hard, or tastes something with a strong taste or it does not desolve).

I know my son's situation is probably irrelevant to your daughters but I hope you can take some comfort that I, along with I'm sure many others, can feel your frustration with you. My son was seen by a neurologist, endocrinologist, polmunologist, cardiologist, and lastly a genetisist before they came up with "developmentally delayed with hypotonia" with an unknown origin, but possibly from the meningitis he had at 5 weeks old. Regardless, the waiting and not knowing is the worst. It is easier to know, no matter what it is, than to wonder and to speculate. Good Luck.

Nicole

[TCA]

Meg is a bit better tonight. She started throwing up even with the J tube, so we had to take her in for an x-ray to make sure teh tube hasn't moved. It was still there, but that means her Jejenum (sp?) is refluxing too. Not good. The dr. said we're doing all we can, but to call the GI tomorrow for more info. I just talked to the on call one today a couple times. We're just turning her rate down constantly. She's down to 25 ml. hr. she used to be at 60. It's hard to get the calories in her and we've had to drop the avocado for now since it slows her digestion. She is feeling some better tonight, which is a relief. She has a cardiologist appt. tomorrow. We'll see what he has to say. Thanks again for all the encouraging words a prayers. it all means the world to us right now.

Nic, Megan is behind some developmentally, but is doing well considering all she's been through. She's also in feeding therapy and physical and speech therapy. She hasn't recieved the same diagnosis as your son, but I am sure she is behind on muscle tone. I'll mention it to the drs. I think her biggest problem is where the fundo came undone and the massive hernia that is there. 2 radiologist have called it hte biggest they've ever seen on a baby before. I appreciate the info, though.

nini - I'm using the Medula, symphony. I rented it after the pump in style just wasn't cutting it. I've done hand held ones too, but this one seems to work for me. thankfully, I've had an easier tiem catching up since going on the reglan. It was such a relief to not have to fight it so hard. Thanks for the info and prayers, though.

Alison - I forgot to reply that I'm trying, but meg won't take a pacifier. Hasn't in months, but she does get her carafate by mouth. that's it, though.

Hugs,

Tanya

[Fiddle-Faddle]

Sending you lots of love and [[[[[[[[HUGS]]]]]]]]]]....still praying!

[Cheri A]

Tanya ~ hugs and prayers for you and Meg tonight! I hope that you get some rest and she does better tommorrow!

[TCA]

Megan slept through the night and I got 7 hrs!!!!!! We both feel much better this morning. Maybe she was teething causing the spit up and fever. It's so hard to not blame simple things on big things with her. Hopefully today will go better. Thanks for the prayers. I was just about past functioning yesterday I had so little sleep.

[Guest nini]

sending you lots and lots of {{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}

whatever works with the pumping... I just personally liked the Avent Isis because I had control over it and the petal attachement really helped with letdown... I practically tripled my milk production just by switching to the Avent Isis... I was blown away... each woman is different though, so if the Symphony is working for you, great!

(Chey got to a point where she wouldn't nurse at all because of the gagging/reflux and projectile vomiting so I had to give all her meals in a bottle... she weaned herself off nursing at 9 months and I was devastated)...

[TCA]

Went ott he ped. cardiologist this morning with Meg. Her sats were in teh 80s and her BP was good, but she has lost 3 oz. This isn't good at all. He said we can't go into surgery with her losing weight b/c she won't recover well. This probably means a fundo will be before surgery. We now have an appt. with her GI and a surgeon on Wed. at Vandy. Please keep praying. She seems to feel better today, though!!!! Hopefully she can start tolerating more feeds!

hugs,

Tanya

[Fiddle-Faddle]

Major prayers and positive energy coming from PA!

[Cheri A]

((Tanya and Meg)) ~ I'm so glad that you both got some good sleep last night. IKWYM about blaming the normal every day things on the bigger problems.. I am like that too with the allergies. I'm sorry that she lost a bit of weight. We will just keep on praying..

[Fiddle-Faddle]

Tanya--how are things today?

[TCA]

She's done well today, just still gagging and retching. We have appts tomorrow with a surgeon, GI, anesthesiologist, and nutritionist. The good news is that she's been able to tolerate the formula with this new tube!!! I'm able to fortify the breast milk and get more calories now. That's a big help. I'm trying to freeze some breast milk so I won't be so frantic if she gets to where she can't tolerate it again. Thanks for all the prayers. They really are paying off. Please pray for wisdom as we try to decide about surgery tomorrow.

A girl friend of mine came over with her 10 mo. old today. She's about twice meg's size, but they had a great time. They're both sitting well and will sit in the floor and play and squeal. It's so funny to watch and so good to see her looking better to do it.

[VydorScope]

Wow TCA! Been out of the loop for a bit visiting family in the N/E... just want you to know we are here for you if we can help in any way....

[Fiddle-Faddle]

Thinking lots of good thought for you and sending love and prayers--have agood trip to Vanderbilt!

[Guest Robbin]

Love and prayers from VA too. Keep moo-ing!!!

[Cheri A]

Thinking of you and praying for you, Meg and the drs you are seeing today. ((hugz))

Glad that you were able to enjoy your friend and the babies yesterday!!

[TCA]

REALLY tired, so making it short and sweet. The drs. all agreed on no fundo for now because of her heart situation. After heart repair, she might be strong enough. going ahead with scope next Wed. The GI gravely said he is VERY concerned at her not gaining weight and is considering TPN. Cardiology balked at this because of risk of infection with PICC line right before surgery. Surgery may be sooner than planned because of all of this. Nutritionist gave me a plan to increase calories with Neocate, but it's making D worse. Ped. said to try Neocate 1 + again instead. My head is spinning, so going to sleep on it before making any decisions! Thanks for the prayers.

Hugs,

Tanya

[mart]

Tanya, we're all praying for this baby and for you too. Thanks for keeping us posted. May you all have a peaceful night's sleep.

[Judyin Philly]

Tanya, you must have posted just after I got off line. I came up to see if you'd posted about the trip to Vederbuilt about 11:00. I'm so gald you took a moment to post when so physically exhauseted yourself.

It is so hard for me to find words of comfort for you. I wish I could do more and write more to help you but now all I can think to do is pray harder for you, Megan and your entire family for strength to enduring during this difficult time.

We all love and care about you so much.

I hope you can feel that love and it strengthens you.

love Judy

[mouse]

Tanya, I don't know what to say. I am praying for Megan, you and your family. Just please know that we will give you all the emotional support that cyberspace can give. Many PRAYERS & HUGS.

[jerseyangel]

Hi Tanya--I haven't posted on the thread in a while, but I read every day. My prayers are with you, Megan and your whole family--you are in my thoughts often.