Now he’s sick. Big sigh…

Can’t believe it.  Now Logan is sick.  We went to the pediatrician yesterday to have him swabbed for RSV.  If he has RSV Dr. Patel thinks it is safest if he is in the hospital.  I just can’t believe it.  This poor little sweet baby just never feels good.  I am starting to wonder about PCD now. He has gotten sick so many times already in his 10 short months.  It could also be that we are at the doctor’s office so often as well.  That is truly where all the germs are.

(Taking the whole gang to the ped’s office)

When we went to the pediatrician’s office it was a little silly because they kept telling me his Pulse Ox (oxygen saturations) were 97%.  I tried explaining to them that wasn’t accurate but they told me this was the best machine and this what it is reading (sigh….) This is a picture of him in the pediatrician’s office.  Doesn’ this look the face of a baby with 97% oxygenation?  Seriously come one….

Anyway, we got the results of the RSV part of the test back yesterday and he is neg. for RSV (thank god.) The rest of the test comes back this afternoon, I am not sure if there is any other illness that would require hospitalization or not, I just know Dr. Patel was very concerned about RSV. 

Logan is just coughing and hacking and having a very hard time sleeping because of all the coughing.  He isn’t eating much either (so I may have lost all my hard work…..)

Where is SUMMER????

I finally got an appointment with his GI doctor for 2 weeks from now.  They must not be too concerned then.  I don’t know how we could go from it’s an emergency to now it’s a two-week wait….

I am starting to really realize right now that Logan doesn not have just congenital heart disease this is Heterotaxy, a whole body disease.  It’s so hard to figure out what is going on.  To figure out what illnesses or infections can be deadly to him because of his no spleen, when is vomiting okay when it isn’t (vomiting is the first sign of a deadly intestinal blockage for him) then the rectal bleeding.  It’s just so much to deal with.  And the other day it seems like everything was happening all at once.  He was vomiting, coughing, had rectal prolapse, fast breathing, everything I was so scared and very overwhelmed.  I can handle one of these issues at a time but when they all occur at the same time I get very nervous.  The most frustrating thing is that then everyone wants to send him to the most dangerous place for him to be the ER.  I really need to find doctors that are willing to fit him into their office schedules when there is a problem.  So far I have not had this luck.  Not sure what I am going to do about that. 

We had a very tough week at the Spyker household and I am hoping that everyone starts feeling better by this weekend (including myself…I caught whatever Logan has, which in a way was good because then I know exactly what he has!)

9 thoughts on “Now he’s sick. Big sigh…”

  1. Thoughts and prayers!

    Genevieve was hospitalized 3 times in her first year with “non-RSV” bronchiolitis. They thought it was RSV even though she was on Synagis; tested her but it was always negative.

  2. So sorry!! He looks so sad and miserable in that photo. Praying you all feel better soon. Hang in there…PS – do you know if Dr. del Nido removed Logan’s thymus during OHS? I’ve met a number of families whose babies have struggled with sever immune deficiencies after surgery. Annamarie

    1. That is a great question. Yes, Logan still has his thymus! I was very worried about that too because he is already missing a spleen I really didn’t want the thymus gone as well. I was so happy to hear that Dr. Del Nido hadn’t removed it!
      XXX

  3. I thought I posted last night, but it doesn’t look like it’s here… so forgive me if this is a duplicate!

    I saw your note to Tina above… Noah had Non-RSV Bronchialitis back in Sept. His Pedi sent us to the ER at CHB after his sats dropped to 90 (he was 4 months past surgery and he typically ran 98-100… and he had been at 97 just a few hours earlier). CHB admitted him and he stayed on 8E just for observation. While there, he had a weird echo (sorry – no better description…but he was squirming like crazy so I’m sure that’s what caused it) and they wouldn’t release him until they confirmed no RSV and that the echo was ok. He was there 6 days.

    His symptoms: bad cold/cough, fever… turned into nostril flaring, retractions, head bobbing (you know the drill). That was what actually drove me back to the Pedi 2 hours after they told me he would be fine… then they sent us to the ER… sigh.

    You’re doing an amazing job at keeping it together. I know – you don’t have a choice… but you’re a remarkable mommy! FB me if you have any other questions!

  4. The symptoms were about the same as RSV – fever, congestion, drop in oxygen stats, coughing, really “junky” breathing, breathing from very low in the abdomen – just absolute misery. I think if it is a “virus” and it is not RSV, then they call it bronchiolitis.

    She as admitted to CHB – they had her on oxygen at her worst and just the blow-by machine after that. She had a few saline nebulizer treatments and was under observation. They tried albuterol which was a huge mistake because it made her heart race.

    How is Logan doing today?

    1. Logan is a lot better thanks!!! Those are all of Logan’s symptoms as well, I just fight to keep him out of the hospital. I think that if I had felt nervous or probably had any other cardiologist Logan would’ve been in the hospital for observation. I just feel like if they aren’t going to actually ‘do’ anything why have him there getting poked and hooked to machines. I am also very paranoid because it seems every time he is in the hospital he comes back out with a different illness (gastro usually) and hospitals is where he would pick up any infections as well. I know most Mom’s would feel safer in the hospital, I am probably just the exception. I feel it is safest for him at home.

  5. So glad he is feeling better! I can completely understand the preference to be at home where you can control the environment. I was told that there is really not much they can do but to let it run its course. Because we are local, whenever Genevieve is admitted, it is to 8 South at CHB and because she is “contagious”, it is always a private room.

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