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Friday, January 13, 2012

Loves and kisses

Time for a Jaxson update.
The pediatrician search continues.
*sigh*
I was so excited to go to the one at Childrens Hospital Los Angeles, but when I got there, it was a dirty, overcrowded clinic. Yikes, I was immediately thinking this is not the clinic I want to be spending a lot of time at. Because its in the hospital, you see residents, and they report to an attending. The resident would be considered our pediatrician. I didn't like that at all. I know residents need to learn, and I'm ok with them coming in and doing their thing. But too many residents make decisions without consulting the attending, and I don't like that at all. We've had too many near tragedies because a resident said to do something, and the attending had not yet given the ok. Plus, the attending that did come in, I did not like at all.
I know I'm not going to get what I had in Utah, she set the bar way too high. But I do want someone that I can have a close relationship with.
Today I'm going to call UCLA's pediatric department. Its much cleaner, and not overcrowded. They also do medical home, which is what we had in Utah! I pray that UCLA will be the answer, we really need someone good!
We have tons of appointments coming up. We are going to be busy busy, trying to get this boy tuned up. Neuro is one I'm anxious to get to, and see if they agree that starting up the keto diet is a good idea. I want these seizures under control, before we get to a bad place again! GI I'm also anxious to see if they are going to fight me about fixing his nissen. I don't really want to feed him into his gut forever, and aspirating on stomach acid can happen again when it comes right up when he retches! The scariest one for me is ortho. That one is next week. His legs are terribly crooked, and I'm afraid that they are going to tell me his spine is just going to get worse. I just don't know what to expect from that appointment, except I do think a leg surgery will be in the future. A leg surgery also means casts on both legs for weeks. Not a fun thing at all! Cardio will be interesting. Because I hated my cardio in Utah so bad, in a way I fear that the cardio here will tell me a whole host of problems that were missed. That's just because I know he has a vsd, and I fear they are going to want to fix that. One thing at a time. Yesterday we did some bloodwork that endocrine wants, to check the function, or lack of, of his pituitary gland. Bloodwork is such a pain with this boy. I plan on fighting for a port for him. I just hope our new ped doesn't go against it. He has monthly labs, not to mention that he has no access if and when an emergency happens. In October, he blew through 3 IV's in 22 hours. It would have been more, but his horrible PICU nurse didn't check his IV all night, and it had infiltrated and proceeded to fill his entire arm with IV fluid! She's lucky it didn't cut off circulation to his arm!

For now, we just keep on keeping on with lots of loves and kisses. Because lets face it, that makes it all worthwhile!



15 comments:

  1. I hope you can find a good ped. It's so important, isn't it. I love those pictures. Those two are just priceless. Hugs

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  2. The love between the princess and her knight is the purest sibling love I have ever seen.

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  3. What sweet pictures of Jax and Arina! Hope all your appointments go well, and you are able to find some great doctors to take care of Jax! Hugs!

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  4. The bond those two have is amazing! Looking for a new ped is never fun. Especially, when you have a fragile child. I pray you can find one soon.

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  5. I really like Heidi Woo. I called her office directly and scheduled an interview with her before bringing my daughter(although at the time my daughter was still in the NICU).

    http://www.uclahealth.org/body.cfm?id=479&action=detail&ref=12494

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  6. Lacey, with regards to what you said about Jaxson's spine etc, I thought you might find http://www.mencap.org.uk/posturalcare useful - it is by a respected national charity for people with learning disabilities here in the UK. There are a series of short films that are all well worth watching - I think they're given in the right order - that explain how gentle night positioning can be used to preserve body symmetry, prevent spinal curvature, enable easier breathing due to reversing postural problems etc. One of the ladies in the film, Sarah Hill (now Sarah Clayton) has been known to me personally for well over a decade, and is currently in talks with our relevant UK national government departments about incorporating better postural care into our National Health Service, so this is a genuine, scientifically research-based concept, not some weird alternative therapy, and it works so well at improving people's lives, and stopping them having spinal operations by using totally non-invasive gentle treatment instead. Sarah was also named "Positive Mum of the year" in 2009 in a nationwide contest https://secure.tesco.com/todayattesco/lifestyle_and_fashion/mum_of_the_year_positive.shtml for how she helped others whilst dealing with her little daughter's malignant brain tumour, so she is not just some academic - she really understands and empathises with parents of children who have difficulties. I do hope you find this information useful and interesting. Best wishes to all your family. Ruth R. [UK]

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  7. Praying that you find the docs that Jax needs. Love, love, love sweet kisses from his sister! ♥

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  8. I hope you can find a good Ped soon... They're so important!

    And as a (NICU) nurse... it literally disgusts me that Jax's PICU nurse let his IV go bad like that all night. That so should have been avoided... Glad you got out of there!

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  9. beautiful pictures. Prayers that you can find just the right ped for Jax.

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  10. whew, Jax sure does need some kisses! He's got a schedule that'll keep you on your toes for sure! I'm pray you find exactly what you're looking for. I know moving can make for such a challenge getting realigned with providers, especially when you left the one you "loved" back home. Praying!!!

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  11. LOVE those pictures of Jaxson and Arina - especially the second one!

    I hope you find a good paed soon.

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  12. I do not know if you can try this since Jaxson is tube fed but I thought you might be interested in this article-- I know it is about Alzheimer's but she also mentions uncontrollable seizures.
    http://www.coconutketones.com/WhatIfCure.pdf

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  13. I've been reading all the updates on FB but haven't wanted to bog you down with comments...
    I really hope UCLA is the answer..

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  14. I don't think I have ever commented on your blog but have followed since you were in country geting your princess. But I just have to comment today...

    For the past hour I have been reading some heavy stuff about suffering children and one who earned his angel wings yesterday (families whose blogs I follow and pray for). I was/am feeling heavy in heart and decided to close that browser, pray for these families, and go to bed. When I minimized that browser, lo and behold your blog was still pulled up and what did I see? That sweet darling of yours giving her precious brother a big, wet, sloppery kiss! It brought an instance smile to my face. So THANK YOU ;) Ahhh. Life :)

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  15. Oh. BTW. This will likely inflame you as much as it does me!

    THought you might want to help spread the word

    http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

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