Lily’s Pad

What a great Christmas memory this will always be….

Usually all my posts are about Lily…. But, unfortunately with incredible sadness, I found out last Sunday that Ben, my son Dustin’s best friend had taken his life….  Broken is such a soft word to say how hard this has hit us all….  Our life will never be the same without Ben in it!

Today was the funeral and Dustin and his two friend’s were Pallbears - talk about a moment that will tear any mom’s heart apart watching her son and his two friends carrying Ben’s casket in.  No words can express how heart wrenching that was!  But, Dustin held so strong - read what he wrote about Ben at the cemetary and had lots of us smiling and laughing!!!!!  Dustin was the rock of Gibralter yesterday and today!  There are so many moments about Ben that I remember, but mostly of all we all loved Ben!  I have so much more to say and am hoping to blog about it this weekend.  Just keep Ben’s family in your heart and prayers!  And hold Dustin up high to the Lord.  Ben would have been so amazed by the outpouring of love for him!  still so very tough!  HE deserved so very much!!!!!

Lisa

http://technorati.com/claim/k3ta6nb22” rel=”me”>Technorati Profile

And for those who are wondering…. No, Dr. Clark did not pop in and propose….. sigh…….

It was actually the Pediatric surgeon and his nurse who were our light today!  Had we not met I wonder what could have gone wrong…..  This is the surgeon who was to do the biopsy on Lily for Hirschsprung’s disease….  I already posted this on my support group so I am just going to copy and paste below, but you will see how thankful we are today!

Back from Lily’s Pediatric surgeon, feeling kind of stressed…..

Ok, so feeling kind of stressed is totally not a new concept. I just really needed to vent here about it and also it may help someone else who is in a similar situation. The reason for the visit was for the consult for the biopsy for Hirschsprung’s disease to be coordinated with her tear duct surgery next month. The doctor and nurse there were great - the nurse checked Lily from head to toe really listened to me and her long list of issues from the time she was born and the doctor was great as well! In fact, I have to wonder what would have happened if I had not seen this doctor??? What I am talking about is the fact that this surgeon really really really cautioned me about Lily’s need to have this biopsy done. He was questioning her GI doctors’ decision to do an open biopsy and really really had me questioning what I had not questioned which scared the crap out of me! He thinks the biopsy is way too invasive when other measures should have been taken first, such as getting her completely cleaned out which he said could take up to 6 months. He is not sure why her GI doc did not suggest this first. I did explain to him that I have not been back to see the GI doctor since first putting her on Miralax last year (gave him all the history) and that this conversation with the doc to have the biopsy arose over the phone. I just assumed it was the next thing to do! This surgeon questioned why the doctor would not have done some other type of biopsy which is done in the office and much less invasive. I told him that the GI doctor said there were other tests that could be done, but if any of them were positive we would have to have this surgical biopsy done anyway. I told him that the doctor said well of course it was up to me and this surgeon just looked in shock! At which point I felt like I should have really questioned the GI doctor as well. And like I told him after I thanked him a million times that hey her GI is the doctor - how am I supposed to make a call like that? And I just got the feeling like he was just amazed. I feel terrible!!! I thought this GI doctor was excellent!!! ANd here I was all ready to have my little girl have this biopsy done without really even second guessing it. This surgeon thinks that Lily would have much more signs of Hirschsprung’s if it were that. He said clinically she does not present much signs besides the constipation and like he said we just can’t say oh she is constipated let’s jump to Hirschsprung’s. It could be that Lily’s colon has never had a chance to get back down to it’s normal size which could cause her to start having problem’s controlling her BM’s. SO, this surgeon is going to call her GI directly and go over all of these issues with him and said I don’t need to worry he will get everything straightened out and call me back after he speaks with him.

And then of course we did find out one other thing…. Lily has (on top of the herniated belly button and heart surgery scar hernia) a couple of more hernia’s in her abdomen. I think he called them gastro something hernia’s. He said these will not close up on her own and they do need to be repaired! So, he said I would worry more about getting these hernia’s fixed before I would worry about Hirshsprung’s….

So, I am thankful we saw this doctor today. I have learned I really need to make sure not only am I on top of things, but that also I know for sure exactly that Lily does need to have any procedure done. I have really always trusted her doctors! They have been so good! But, also this doctor has not seen Lily since last year and we made the decision on the phone for the biopsy. The surgeon told me that he would not want his daughter going through it if she were in the same position that Lily is in right now….

Thanks for letting me vent! I feel so frustrated!!!
 

Who knows if we had gone through with this what complications that could have happened that did not even need to.   My word of caution to everyone is to really question things.  I always felt I have done that, but had I not met this doctor today - I would have put Lily through this biopsy which the doctor said is considered an open biopsy and very invasive….  I thank God for Dr. Lelli today!!!!!

In fact, maybe a few dull moments of peaceful snuggles and play time and relaxation and just being would be good!!!!!!!!!!!!!!!  Well, after I so abruptly ended my last night’s blog me and Lily headed to the ER for another not so fun-filled night for Lily!  Her Ped suggested I take her to ER because after vomiting she was just like a wet noodle in my arms and stayed like that for a couple of hours….  Turns out after IV, bloodwork, urinalysis which absolutely broke my heart that Lily had to be catheterized, abdomen xrays and 2 enemas ibecause it was determined that Lily was completely backed up right up to her stomach!  No fever which suggested it might either be major constipation which she has had just not so severe or of course she could have that and the stomach flu or it could an underlying cause such as Celiac’s disease or Hirschsprung’s disease.   Lily spike a fever this morning of 103.4 and I thought we were going to end back up at ER.  We had only been home for about 2 hours (and we did not get home till 4:30am or 5:00am)….

But, I spoke with her GI doctor today and she is to go back on Miralax asap daily and we have also scheduled a biopsy for Hirschsprung’s disease.  Fortunately, they will be able to coordinate the biopsy surgery with her upcoming tear duct surgery….. 

Seems to always be something lately!!!!

Spring is here right????  Yes, of course it is somewhere hiding…..

What a week 1/2 it has been!  Lily was hospitalized about 10 days ago with Pneumonia!  We were there from Friday through Monday late afternoon!!!  I realized that it was alot easier being in the hospital with Lily when she was 6 months old as opposed to 2 1/2 years old!  WHEW!  She is so much feistier and stronger these days!  She was doing pretty rough, but is doing much better today!  I sure hope we can stay out of the hospital for the rest of the year!  I did find out that Lily will require another surgery in about 2 years to repair her herniated belly button and a small henia underneath her heart surgery scar. 

Gotta run Lily just threw up!!!!!!!!!!!!  YIKES!!!!!!!!!!!