We took Jax back in today. He is up almost a pound, which normally would be great news. But he hasn't gained a pound in the last year, let alone the last week. So that means it is all fluid weight. We did a chest x-ray, which did show that his heart is larger than the x-ray last week, but his lungs don't look a whole lot worse, but his oxygen need has gone up a tiny bit more to 1 1/2 liters. This sugests that he is in a little bit of heart failure.
I thought we were going to be heading up to the hospital for a stat echo, but the cardiologist doesn't think its necesary (spelling) yet. We are going to up his dieuretics a little to get some of the fluid off. I don't trust the cardiologist's that much. We have had bad experiences with them before. For some reason they don't seem to pay that much attention to Jax. There are other kids up there that they seem to bend over backwards for, and sqeeze them into surgery whenever they need it. But they let Jax sit on the ventilator for 4 months because they said the schedule was full. Bull crap, you can't tell me there wasn't a kid at home scheduled for surgery that was not as sick as Jax that they couldn't bump.
Sigh
Ok, I'm done ranting. Luckily our pediatrician is on top of it and she knows how to get things done. We will go back on Friday and recheck his weight and an x-ray to see if the extra dieuretics are working. Because he has a valve that is barely working, having RSV has put a lot of strain on his heart and it is working overtime. But I'm sure they won't go in and replace his valve until he is so sick that a machine has to breath for him.
I'm really not bitter, Uhhm
13 comments:
I'm so sorry to hear that his cardiologists aren't doing their job! How frustruating!
I'll be praying extra hard for you and Jax! Hopefully the extra dieuretics do the job! Hang in there and give Jaxson a squeeze from me and Gavin!
Keeping Jaxson in our prayers.
So sorry the cardiologist aren't paying very close attention but glad your ped is on top of things.
Bless sweet Jax! I hope things improve for him soon!
Oh No Lacey, I'm so sorry & you have EVERY right to be bitter;) That is so gosh darn frustrating...grrrrr
UGH, I will continue to pray for this little hero, he's going to be ok!
BTW, Dillon's surgery had to be postponed till March 20th..SIGH! Darn croup!
Praying that upping his meds will pull off some of the fluid.I can see in his little face he has a little extra hanging on.Hate to hear you are not comfortable with the cardiologists.They can make it or break your confidence.Thank goodness for a good pediatrician.Will be thinking and praying for sweet Jaxson.
My thoughts and prayers are with Jax and your family. Those sound like some tough times ahead. I wish our kids didn't have to suffer so much and then to add the frustrating antics of the doctor's office! They shouldn't treat Jax like a 2nd class citizen and you are justified to be angry. I hope that you get what you need from the pedi. Gee I am so tired I am rambling again. lol. Goodnight!!
Oh Lacey, that does not seem fair? I will prayer that your pead can pull some strings and that little Jax will get the attention that he so deserves.... I really prayer for that the surgery comes before things get worse! Sending him big big big hugs! And thinking of you! Love Megan and Keaton
I happen to like bitter. Bitter coffee - bitters can make your tummy feel better when mixed with ginger ale.
In fact I am super bitter right there with ya. I HATE THAT PUFFY LOOK!! When L's eyes get that look it makes my heart sink.
Thinking and praying for all of you.
LACEY, IT'S PERFECT...THANK YOU, Dillon's LOVES his new blanky! It's amazing how God works since all of the sudden, Dillon is really into trains!!
Tears filled my eyes when I got your package. God bless you for your kind & generous heart...You are such an amazing woman & I feel so blessed to have met you! I pray to God that one day we get to meet!!!
Hope you're having a great day!!!
LOVE & PRAYERS TO YOU ALL XOXOX
Hi, I'm Jeannie. I linked to your site from Dillan's. I'm a newby on blogspot but blogged for years on xanga. My son Mr. Busypants has autism and I've been writing about his adventures for years.
Will pray for your little guy. Look forward to reading more on his progress.
Jeannie
We are still praying for Jax!! I totally know how you feelabout not trusting docs. We know our kids better than anyone and when we think something is not right, we are usually correct!!
I know you are probablly super busy right now, so don't rush to make Malachi a blankie!! We can wait!!!
Oh Jax does look super puffy. Poor little guy!!
So when do you want to get together? I just got my Internet back and we are finally moved.
Sorry to be MIA.
I know your feelings towards the Dr's up there. Ugh.
Who is your cardio?
Let me know when you want to get together. I'll talk to you soon.
Hi! Just discovered your blog and read Jaxson's story for the first time and I am in tears. I thought we had it bad with our daughter with Ds and a complete AV Canal defect and abnormal mitral valve. Boy was I wrong! You must be exhausted. I hear your frustration in your post and you have every right to be upset. I pray that God intervenes and makes those cardiologists wake up and do their jobs! I will definitely be thinking of your little guy and will continue to pray for him and your family. Take care!
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