tag:blogger.com,1999:blog-2103261147765792192.post5668154070732521749..comments2023-10-02T01:52:44.887-06:00Comments on Walking the Fine Line: New DevelopmentsHolliehttp://www.blogger.com/profile/06757474016556454100noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-2103261147765792192.post-84445186094303883812008-06-11T18:02:00.000-06:002008-06-11T18:02:00.000-06:00I have read Elaina's entire life story and you wil...I have read Elaina's entire life story and you will all be in my thoughts and prayers. My son has TOF-pulmonary atresia and we have spent months in the hospital as well. My heart goes out to you. Colin has a J-tube mickey button and it did the trick for him too. He still throws up but, not his formula!! We have also had some not so nice residents!! <BR/><BR/>And-do not feel bad about not wanting to insert the NG! I had such a difficult time with that! Hoping for a speedy recovery and quick homecoming for all of you.<BR/><BR/>Take care,<BR/>Melanie & ColinColin's Bloghttps://www.blogger.com/profile/16109662031709819163noreply@blogger.comtag:blogger.com,1999:blog-2103261147765792192.post-70794835254720909952008-06-03T16:33:00.000-06:002008-06-03T16:33:00.000-06:00Sorry I havent checked on you guys for a little wh...Sorry I havent checked on you guys for a little while. I stay pretty busy. :) I know how you feel about the blood poking issues, thats one thing that can get my blood boiling. anyway. It sounds like they did the best thing for her putting the line in her scalp, even though it sounds so sad. But at least they dont have to keep going at their poor bodies. I was told once that if IV team cant get the blood to call the life flight team and have them do it.. I guess they are the best? not sure. <BR/><BR/>Elaina is getting so big! and is still as adorable as ever!! What a sweet heart. You need to have a nice long talk with her about teasing the doctors, haha. Tell her she needs to help the docs find out whats going on with her little body so she can GO HOME. Silly girl you would think she likes everyone fussing over her. <BR/><BR/>I think about you every day, Stay strong! You are doing such a great job with taking care of both of your kiddios. <BR/><BR/>Are you going to the IHH picnic? are you planning on bring Ben? That could be kind of like a date with you. <BR/><BR/>Your in our thoughts and prayers. <BR/><BR/>Hugs.<BR/>Melynda & Mariska AndersonSam Andersonhttps://www.blogger.com/profile/09776099006241201141noreply@blogger.comtag:blogger.com,1999:blog-2103261147765792192.post-9384405190151478722008-06-03T13:26:00.000-06:002008-06-03T13:26:00.000-06:00Thinking of you guys! :)Thinking of you guys! :)Anonymoushttps://www.blogger.com/profile/12195604999109772643noreply@blogger.comtag:blogger.com,1999:blog-2103261147765792192.post-28414477684410436752008-06-03T11:58:00.000-06:002008-06-03T11:58:00.000-06:00Oh..I keep forgetting to tell you...I think that e...Oh..I keep forgetting to tell you...I think that extra thick mucus is just a DiGeorge thing (or heart thing--no one knows). I've talked to a lot of moms with the same issue. Isaac's is horrible. I always have to suction him...and when he wakes up in the morning..his first feed has to usually be half pedialyte and half milk...I think it's the mucus that causes his to throw up all the time (he just can't swallow it!) I suction his nose alot too (i think the allergies of the season make his post nasal drip worse, which makes the mucus worse)...<BR/><BR/>YOU WILL be a doctor soon!<BR/>AHH...and about the picc line. CRAZY that they couldn't get it in. Ask about a broviac line. They put one in Isaac during a cath...then, he had it through heart surgery...and it was the last line out before discharge. It can draw blood and take iv meds (IT'S AMAZING!)<BR/><BR/>There is a drug that helps dry up secretions (I can't remember the name...of course)...but, our doc said it messes with the gi system...but, keep it in the back of your mind if the mucus becomes uncontrollable. Are they deep suctioning her at times??<BR/><BR/>You're doing amazing! Keep it up!Kathyhttps://www.blogger.com/profile/17360490053483814426noreply@blogger.comtag:blogger.com,1999:blog-2103261147765792192.post-34971867088196466132008-06-03T08:55:00.000-06:002008-06-03T08:55:00.000-06:00I can understand you feel. My little guy, Nathan,...I can understand you feel. My little guy, Nathan, went through exactly what your little girl has with the feeding issues. Elaina is beautiful! Hopefully things will get better soon.<BR/>Here is our blog to keep in touch:<BR/>www.jakestephanieellinger.blogspot.comStephanie Ellingerhttps://www.blogger.com/profile/10469890467641003695noreply@blogger.comtag:blogger.com,1999:blog-2103261147765792192.post-21509745880714620642008-06-02T08:37:00.000-06:002008-06-02T08:37:00.000-06:00I hope they can figure out what is going on with h...I hope they can figure out what is going on with her quickly.<BR/><BR/>Sending hugs & prayers your way!<BR/><BR/>Christina<BR/>from IHH<BR/>www.jacobsheart.blogspot.comChristinahttps://www.blogger.com/profile/09849686960337061945noreply@blogger.comtag:blogger.com,1999:blog-2103261147765792192.post-70560917442052414402008-06-02T06:42:00.000-06:002008-06-02T06:42:00.000-06:00Ah, the thumping. Vaeh was in the hospital so much...Ah, the thumping. Vaeh was in the hospital so much the first 6 months of her life, that the only real human contact she got then was the RT's pounding on her! To this day she loves it! She even occasionally does it herself. <BR/><BR/>I, too, was interested in the bi-directional glen with tet? I thought that was a HLHS procedure? Could just be my blonde roots, though! LOL <BR/><BR/>Hopefully they find a way to do blood draws without repeatedly poking her so much. It sounds kind of morbid, but I love the art line after surgery! They just 'tap' the line for a draw - no pokes! <BR/><BR/>Praying they find some things out with the tests & can get moving in the right direction to make your little one healthy!<BR/><BR/>Tina & Vaeh:0) (Jon & Gabby, too!)Tina:0)https://www.blogger.com/profile/10260215878769244185noreply@blogger.comtag:blogger.com,1999:blog-2103261147765792192.post-47714302287849720822008-06-01T23:48:00.000-06:002008-06-01T23:48:00.000-06:00I'm glad the echo went well. I'm a little confused...I'm glad the echo went well. I'm a little confused as to why she is having the bi-direction glenn. I see she has TOF with an intact septum...so why do the shunt? <BR/><BR/>I know you are overwhelmed right now with all that is going on. I'm glad they are doing the CF test. We had that done as well, which came bak negative. Are they testing for the possible blood disorder? I'll have to check into that...haven't heard of any other DGS kids having blood disorder, but you never know with our kids. <BR/><BR/>I'll be keeping you in my prayers. Im glad the PICC line went in well. Hopefully that will minimize some of the confusion and get to the bottom of why she is so sick. Give her some loves from me.<BR/><BR/>Take Care,<BR/>VanessaAnonymoushttps://www.blogger.com/profile/12195604999109772643noreply@blogger.comtag:blogger.com,1999:blog-2103261147765792192.post-90504406008839827112008-06-01T14:21:00.000-06:002008-06-01T14:21:00.000-06:00How frustrating! It is hard to have to see our kid...How frustrating! It is hard to have to see our kids go through such hard trials in their lives, and to have to just be there. How I wish we could take away their pain. That is good news for the Glen. Hopefully that will give her time to grow some more and to get the respiratory issues out of the way. Ryker used to get the thumping and clearing out. He had a lot of secretions to. I always called it his "cough-cough" time. <BR/>Heart hugs,<BR/>Emily GourleyEmhttps://www.blogger.com/profile/11662284283617525676noreply@blogger.comtag:blogger.com,1999:blog-2103261147765792192.post-88128228026000949922008-06-01T12:57:00.000-06:002008-06-01T12:57:00.000-06:00Hollie is was nice to get to meet you and see your...Hollie is was nice to get to meet you and see your little miracle Elaina. She is such a doll !!! Hang in there things will get better soon... Hopefully we'll see ya at the picnic.<BR/><BR/>Take care,<BR/>Mike & familyMphttps://www.blogger.com/profile/04236371011972456462noreply@blogger.com