Results from Monday’s Appointment.

So this post is weird for me to even write because I am utterly confused.  So the surgeon (Mon.) said that Logan needs to have surgery on his intestines.  He didn’t do any tests or exams he just told me that once Logan’s heart is stable enough to tolerate it he will need the Ladd’s procedure.  I’m pretty disappointed about this.  I mean before he was born I had thought this was something that he would need if we found out his intestines were malrotated, but when he was in the hospital (last month w/ suspected intestinal problems)  I was told he was not at risk for an obstruction and wouldn’t need surgery, I was soooo happy.  So now this is just another surgery little Logan is going to have to endure.  Still confused though, as to why out of the blue the surgeon called to set up an appointment and then changed his mind like that…and almost 5 weeks after his initial conclusion.

I have made an appointment for this coming Wed. at the Cleveland Clinic for him to see a GI Dr.  I would like to just start over and get someone else’s opinion.  Cleveland Clinic is known for their gastroenterologist so I will feel much more confident in their opinions.

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Doing Better Than Expected.

 

 

Logan had a really good week overall (except for Mon. ).   Monday he cried on and off all day and straight from 4:30 pm to 9:30 pm.  Here is a picture of him sweating from crying (and was is by no means the height of his crying).

His sad little face is heartbreaking.   He sometimes also sweats like this just from nursing (that’s why often I just give him a bottle because it takes less energy).  

Here is also a picture of his purple little feet (not taken while crying, while crying they turn navy blue)

His extremities get the least amount of oxygenated blood because his body is saving all the oxygen for the areas that really need it the most (brain and other organs) so his hands and feet are purple most of the time. 

Logan also had a cardiologist appointment on Thurs. 

His cardiologist thinks that his color actually looks better now that he is on the beta blocker.  It’s hard for me to tell since I see him every day.  Also he gained weight. Yeah.  He is now 9 lb. 4 oz.  (up from 8 lb. 13 oz.) so that is really good.  He didn’t sleep 22 hours a day like he did last week.  He is still sleepier  than a healthy baby but this week he actually woke up to eat.  Dr. Patel’s inital exam was so positive that he didn’t need to do an echocardiogram.  He said he really couldn’t believe that we are this far along and Logan hasn’t needed any medical interventions yet. 

It was by far the shortest appointment I have had with Logan at the Heart Center. 

Today Logan has an appointment with the General Surgeon that saw him when he was in the hospital with suspected intestinal problems.  Not quite sure what he whats to discuss but they called me to set up the appointment.  So I will post any news about that appointment later. 

In terms of typical baby stuff, Logan can hold his head up on his own now and loves to smile and coo.  When I walk up to him and say Hi Logan its Mommy he gets the biggest smile on his face. When he awake (which isn’t too often) he loves to watch the mobile on his swing and stare at the lights on our kitchen chandelier. 

Here is a picture of him getting some fresh air in our backyard.

Taking the Good with the Bad.

We had a much better week with Logan.  He has not had any crying fits at all this week.  He was just like a normal baby.  The medicine he is on (a beta blocker) is really helping him.  It blocks some of the hormones that we have that get you worked up so he is much calmer this week.  It also has something to do with it breaking a vicious cycle of him getting worked up, turning blue, getting uncomfortable and then crying even harder which then it turn makes him that much more miserable.  So this all sounds like great news but there is a down side.  Because he is much more comfortable he is sleeping better and for longer periods of time, which has equated to him not eating as much.  He has not gained anything in the last week (still at 8 lb 12 oz) and the pediatrician brought up feeding tubes.   Ughhhh…..I hate feeding tubes.  I really don’t want to go there. 

I HATE NG TUBES. 

They are the ones that go up the nose and down their throat.   Yuck.  They come out all the time and they are a total pain.  So the ped. wants him back to getting weekly weight checks, meanwhile I going to try my damnedest to wake him up every couple of hours and try to feed him. 

I am tying my hardest to relax, breath, and take everything one day at a time, but IT IS HARD (I would say that most days it is almost next to impossible).  I which someone would invent a brain switch so that at least at night when I am trying to sleep I could flip it off. 

Here are some cute pictures of Logan getting a bath.  He really likes the bath and loves to look out the window over the sink. 

Not Great.

We didn’t have the greatest week with Logan.  He is really suffering from some unexplainable GI issues.  He has episodes that last from 2-6 hours where he is just inconsolable and really uncomfortable.  It usually starts after he eats.  Somehow eating is just not a comfortable process for him.  It seems to be getting progressively worse.  We had that one episode and took him to the ER several weeks ago, but now it seems it is happening more frequently.  I am going to try to get him into a GI Dr. on Monday.  My gut feeling (pardon the pun) is that somewhere in his intestines milk gets backed up, so his stomach empties and he is hungry and eats but then it has nowhere to go because there is still milk in his intestines and so then, he vomits.  Secondarily, when he cries he starts sweating profusely and this week, which by the way is very scary, he started turning cold and shivering WHILE sweating and crying (I know, that really doesn’t make sense and his cardiologist tried to explain it to me but I really don’t get it.)  His little legs, that are kicking frantically, turn more blue than ever now, and I believe that getting that worked up is uncomfortable for him so he gets even more worked up because he is worked up, and then somehow, something breaks and we get him to calm down and he usually then sleeps for A LONG time.  It was a pretty rough week on me emotionally because I just can’t get out of my mind that if Logan has to have a short life (which is very real possibility for us) I just wish it could be more comfortable day-to-day.  It just breaks my heart to see him that miserable.  THANKFULLY, I have the most patient cardiologist (Dr. Patel) in the world and he lets me call him and ask him a million questions.  And I mean that literally, I think I have asked him one million questions.   And also THANKFULLY, I  have a retired Father and a Grandmother who can come over whenever I need them. 

My Grandmother who is in her 90’s is absolutely convinced that Logan is having these problems because I eat too many salads and no amount of medical evidence is going to prove her wrong.  If I just eat more soup that’s what will fix Logan’s problems (however, the soup can’t have any cabbage in it).  

If only it were that simple. 

Oh, and, by the way, according to her he is growing a spleen as we speak.  (Hu ???) I have no comment on that, other than I certainly hope he is also going to grow a vascular structure as well to support it.  Nothing worse than a spontaneous floating spleen growth.

 Scott has had to travel a lot lately (M-F for the last three weeks), and being all alone with a teething toddler and Logan is quite exhausting and emotionally draining, especially since during the night Logan is still feeding every two hours.  I feel like if I could just get one good night sleep I could deal with EVERYTHING so much better. 

Logan had an appointment at the Heart Center on Thurs. he had another echocardiogram done.  He screamed and threw up during his echo which made it really fun.  To be honest the whole appointment was kind of blur because I was really exhausted and Logan was really fussy and I spent much of the time just trying to calm him down.  Dr. Patel wants to start him on a Beta Blocker, Atenolol in hopes to buy us some time before his first OHS (at least another month and hopefully two or three.)  He talked this week about a BD shunt, which I am sure is what he was talking about last week and I miss understood BT for BD but regardless they are different so here is a link to a BD Glenn shunt. Its a risky procedure for Logan because of his Heterotaxy and his age.  We have to now start looking into our insurance and figuring out where he is going to have surgery.  If our insurance lets us we will probably go to the Children’s Hosp. in Ann Arbor, MI

Here is also a couple of really cute pictures of Logan that my Mother-in-law took of him last week that I can’t resist posting.