MIKolbe Posted May 16, 2009 Share Posted May 16, 2009 the kid's a fighter. God Bless him. Link to comment Share on other sites More sharing options...
KnightofChrist Posted May 16, 2009 Share Posted May 16, 2009 Amen to that. Praying... Link to comment Share on other sites More sharing options...
IcePrincessKRS Posted May 20, 2009 Author Share Posted May 20, 2009 New update from Sara. More GOOD news! [b]Brodie is on the mend, thankfully there have been no more complications. He's had his bypass wires removed and he was able to resume his feeds yesterday afternoon. His doctors felt he was doing well enough to be moved out of the IMC and into the regular pediatric ward. Brodie has been moved for the last time until he comes home. We've been given a 2 page check list of things that need to be accomplished before that happens. It's taped to the end of his bed and we're looking forward to checking each item off! The biggest challenge is going to be the feeding because of the set back we had by taking him off feeds for 2 days. He basically had to start back at square one but he is working his way up to where he should be. I was able to give Brodie a sponge bath this afternoon and put his first piece of clothing on, it was pretty exciting even if it is just a t-shirt. Sorry the picture is a little grainy, I took it with my cell phone. I still need to upload the ones from the digital camera. We had Fiona at the hospital this morning and she just couldn't give her baby brother enough kisses! As always, thank you for the continued prayers, love and support! Sara, Joe, Fiona & Brodie. [/b] Link to comment Share on other sites More sharing options...
jmjtina Posted May 20, 2009 Share Posted May 20, 2009 still prayers coming!!!!!!!!!! Link to comment Share on other sites More sharing options...
IcePrincessKRS Posted May 20, 2009 Author Share Posted May 20, 2009 [quote name='jmjtina' post='1871292' date='May 19 2009, 09:41 PM']still prayers coming!!!!!!!!!! [/quote] Sara told me that hopefully by the end of next week he'll be off the feeding tube and bottle/breastfeeding. I'm praying that he hits all the markers on the list quickly so that they can take him HOME. He'll be due for his second surgery anywhere between 3 and 7 months depending on how fast he grows (his heart will out-grow the shunt and it will need to be replaced), but it would be SO good for them to take him home--he's already 19 days old. Link to comment Share on other sites More sharing options...
the lords sheep Posted May 20, 2009 Share Posted May 20, 2009 Prayers for the little guy and his whole family Link to comment Share on other sites More sharing options...
IcePrincessKRS Posted May 20, 2009 Author Share Posted May 20, 2009 Thank you. I told my sister that that last e-mail made me ridiculously happy. lol If I felt that good about it I can only imagine how Sara and Joe are feeling. Link to comment Share on other sites More sharing options...
mcts Posted May 21, 2009 Share Posted May 21, 2009 lots and lots of people are praying for him at my church now Link to comment Share on other sites More sharing options...
IcePrincessKRS Posted May 26, 2009 Author Share Posted May 26, 2009 [b]It's been a whole week since the last update went out. I meant to send one sooner unfortunately we managed to pick up a virus, Brodie included. This will delay his return home and has made our life just a little bit more challenging. Fever, fatigue and all the nastiness that comes with a bug. While it certainly isn't healthy for Brodie to be sick like this and if he was home he'd be brought back to the hospital, we can be thankfully its only a virus and not something bacterial or the flu. The sickness has seemed to slow or even stop his weight gain, just when we were excited that he was back up to almost his birth weight. Sunday he weighted 7 lbs 1 oz. He hasn't lost anymore so thats a positive sign. His feedings also haven't made any progression and this is growing frustrating to me and Joe. Brodie's feeding tube was supposed to have been pulled back into his stomach Thursday of last week. It is clear it was pulled some, but it either didn't make all the way up to his stomach or slipped back down. This wasn't discovered until a chest x-ray was performed on Monday to try to determine the cause of his fever. A swallow study was supposed to be performed today to determine whether he could handle oral feedings, but that has been postponed because of the virus and him not being 100%. But honestly it should have been postponed anyway since his feeding tube wasn't feeding into his stomach. It could have come as quite a shock to Brodie's system if he all of a sudden got a load of food in his stomach when it's only ever processed a few milligrams of medicine at a time. I keep reminding myself that God has a plan and everything happens for a reason. Perhaps Brodie needed this virus to catch the feeding tube misplacement. Not to have all doom and gloom news Brodie's healing from the surgery well. He was able to have his IV and this big arm brace removed on Wednesday. You can see it in the last picture below. His occupational therapist is pleased with his motor skills development. He was able to grasp a little toy and bring it to his mouth this morning. I hope everyone had a great holiday weekend! And as always we appreciate all the love and support! Sara, Joe, Fiona & Brodie[/b] Link to comment Share on other sites More sharing options...
CatherineM Posted May 26, 2009 Share Posted May 26, 2009 Typical kid, everything goes straight to the mouth. Link to comment Share on other sites More sharing options...
Archaeology cat Posted May 27, 2009 Share Posted May 27, 2009 I hope they all get better soon! Link to comment Share on other sites More sharing options...
IcePrincessKRS Posted June 4, 2009 Author Share Posted June 4, 2009 The latest two updates from Sara: [b]There is lots to report most of it tentative and not all good. I know I mentioned to a few people the possibility of us getting sent home soon, but it doesn't look like that is going to happen. First Brodie had his swallow study on Thursday 5/28. He was a very eager eater but he aspirated (fluid went into his lungs) with each attempt. Various thickness of fluids were tried but nothing worked. The aspirations are very dangerous because they were 'silent aspirations,' his vital signs remained unchanged, he didn't cough or choke. There would have been no way to tell that fluid was getting into his lungs if it hadn't been for the chest x-rays being performed as part of the study. Aspirating can cause all sorts of problems up to asphyxiation. So among other things we will continue with no oral feedings for now. Brodie has been spitting up quiet a bit lately and with these dangerous aspirations there is a concern about his reflux. He is scheduled for an impedance test starting tomorrow. Another tube will be put down his nose into his esophagus with a monitor on it to measure how often and for how long stomach acid enters the esophagus. The monitor will stay in place for 24 hours then be pulled out. Depending on how that test goes Brodie may be scheduled for another surgery called a Nissen. Basically the top of his stomach would be tightened to prevent any reflux or spitting up. This will help cut out the fear of him aspirating on stomach fluids and help him to keep the nutrition he needs to gain weight and keep growing. Because his feedings issues are looking like they are long term Brodie will most likely move from a NG feeding tube (through the nose) to a G tube (more permanent feeding tube directly into the stomach). Brodie is an amazingly strong little man! He has come through so much already. He continues to progress wonderfully in his recovery of his cardiac surgery and grows in normal baby ways each day. He coos and recognizes his mommy & daddy. He grunts at the nurses when they wake him to check his vital signs. He loves being held and hates having a dirty diaper! That is really the only time he gets fussy. I appreciate all the great e-mails letting us know that we are still in your thoughts and prayers. I wish I had time to respond to each one individually but since I don't please know that our family is very grateful all for the continued prayers, love and support! Sara, Joe, Fiona & Brodie[/b] [i]We got the results from the impedance test back and the GI doctors are recommending Brodie NOT have the Nissen at this time. He is refluxing but it doesn't seem to be going high enough in his esophagus to cause him to aspirate. Phew! Hopefully this means we get to bring him home sooner. He had his g-tube placed this afternoon. He's off feeds again for about 24 hours to allow his stomach to heal before they put food in it again. In the meantime he's back on the IV. Other than that not much to report for now. We'll keep you posted of any other changes. As always thank you for all the love, support & prayers. Sara, Joe, Fiona & Brodie.[/i] Link to comment Share on other sites More sharing options...
CatherineM Posted June 5, 2009 Share Posted June 5, 2009 Continued prayers. Link to comment Share on other sites More sharing options...
Archaeology cat Posted June 5, 2009 Share Posted June 5, 2009 Link to comment Share on other sites More sharing options...
IcePrincessKRS Posted June 8, 2009 Author Share Posted June 8, 2009 Brodie might get to come home tomorrow!!! Link to comment Share on other sites More sharing options...
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