Mallie Bean
Monday, September 6, 2010
Update after starting feeds
Ok, so her first feed went ok - took about half an ounce. Mostly because the formula they gave us was the premade stuff and she hates it. So the second feed went better - she took her ounce she was supposed to. Then took a nap......she woke up crying - no pain meds since 10pm last night. Was due at 6 for her last dose of the iv motrin - but since taking the iv out - it never happened. It was close to her next feed when she woke up - so I mixed the bottle and she seemed to take it right way - but only ended up taking 3/4 of an ounce then. She still was cranky and kept itching her shoulder where the Central line iv was. her face is also all rashed out - it seems to be spreading onto her neck and she won't stop itching. I wonder if that is why the line came out because she was itching it in the middle of the night. I was holding her and she just started to wail, pulled up her legs like she was in horrible pain. I turned her around and held her up close and stood and rocked her. She let out a little burp - and seemed to quiet down. My gut thinks she does not feel good.....I am wondering if its too soon to feed her healing belly. We skipped a step since she took out her line. The NG tube would have been just clamped for awhile today before we started feeding. The have paged the dr's again to have them come look at the rash and to see what we should do. I think she needs a bath with soap and water, then something to help clear that nasty thing up. Also she can have tylenol now every 4 hours - that seems to be ok - since she is sleeping now and her heart rates is in the 120's. I will update as soon as I can once I see what the surgery team has to say...this poor girl - not sure how much more she can take or I can for that matter. I hate seeing her like this. I am praying that her belly is working properly and can handle the food she is eating. They have ordered her prevacid too so that might help since she normally gets that twice a day at home. Also now that she is not on the TPN - her only calories are going to come from the food she eats. Even though she pulled the line out - and I am thinking it is too soon - I hate to see her go thru getting it again as it will put her that much further behind. They have to sedate her to put the line back in and even with a regular IV - she is going to hate that too. UGH, UGH, UGH!!!!!! Be back later.
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Hang in there Steff - she will be fine - you are correct that the tube coming out that soon might not be a good thing but if they have to put it back in just to get the calories in her (even thought she and you both hate it) it is the best thing they can do. We need to have her eating good before the send her home this time. Be tough and if you think she needs it tell the surgeons what you think - YOU KNOW HER WAY MORE BETTER THAN THEY DO!!!!!!!!!!!!! Love, Mom
ReplyDeleteI agree Steph. If she needs it back in, it might be the best thing to do. Your mom is right about you standing up to the doctors. You do know Mallie best and in these days, we all have to be our own advocate. Doctors just seem to look at each case as just another case. She is so lucky to have such a good strong mother. You are doing great Steph and you can take it, because you love that little girl with all your heart and will always do right by her. Stay strong girl. You are doing great. I sure wish you could get some good sleep. Maybe if your mom or somebody comes to sit with Mallie you could go down to the vehicle and catch some zzzzs? Make sure you are eating good too to keep your strength up. You are all in my thoughts and prayers. Love, Aunt Jorjetta xoxoxo
ReplyDeleteAww Steph, sorry it's so up and down. At least you are still there with the doctors and nurses close by. And, like your mom and aunt said even though she hates the tube, it maybe for the best for now. She can't afford to not have the nutrients. Advocate for her, you know what she needs and you can tell if she's in pain or feeling bad. Mom's do know best most of the time! :) Get rest when you can and please eat something to keep up your strength. Thinking about you guys constantly. Take care. LYLAS!
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