3/12/10 Update on Conner Lemus

mewsicmama · #1 2010-03-12, 11:53pm

I am copying what Tamara has posted on his site to here. I am receiving updates by email and will share each one I get. Hugs ~ Shari in So. Cali.

Moving"down" in the world....

Posted 7 hours ago

Well, we moved down!!! That is, down to the 15th floor! Not even in a step-down unit, a regular room!

We moved yesterday at around 3-4 o'clock. Private room, own bathroom with tub/shower. Water pressure sucks, but who cares?? Only 4 rooms down from the family room with fridge and microwave.

Conner is doing so great! He's more alert now, and his pain is pretty well controlled. They did remove his central line yesterday. He now only has 1 IV in his left foot, the 3 drainage tubes, 3 sets of pacer wires, and of course his incision. That's a lot less "owies" than he did have...They were supposed to remove the drains this morning, but yesterday afternoon and night he started draining more, especially from the middle tube. The plan is to remove the middle one in the morning, hoping the 2 on the sides take over draining the fluid. That way he can be disconnected from the HUGE bubbling vacuum boxes and be a little more mobile. They can put these little bubble things on the 2 remaining tubes to drain the fluid. He's restricted to 900 cc's per 24 hour period for now, and will remain fluid restricted for at least 6 weeks, although I don't know if they will increase it from 900 or not.

He did take a few steps this morning, under EXTREME protest. I don't blame him, with the IV in his foot and all, not to mention he had open-heart surgery 3 days ago! He's overall much better, not crying or moaning in his sleep anymore, and being calm most of the time. They have discontinued his morphine yesterday morning, and he just had his last dose of Toridol at 3. From now on he is on around-the-clock Motrin, with Tylenol with Codeine for extreme pain as needed.

No one has said the "d" word yet (discharge), but I'm imagining it will be early or mid-week next week. We'll have to stay within 15 minutes of the hospital, so no home, but Ronald McDonald House instead.

Sorry it took me so long to update, but I've been a little busy! I would like to ask everyone, if you can, to send us a card here at the hospital. If you log onto the Texas Children's website and click on "for parents" across the top, then "patient greetings". You can type a message and they print it on a cute card that gets delivered to our room and given to Conner. I know they'll mean a lot to him when he gets old enough to read them. It's free, and I think he'll be excited to get "mail" here....

I'll try to do better about updates, now that I can have the laptop plugged in our room, instead of trying to find time to set it up when I wanted to post. Plus, it wasn't allowed in the ICU at all.

Thanks for all the messages of support, and for all the phone calls. I have Conner's beads of courage with me, and have been wanting to restring them, but have been so worried about Conner I couldn't concentrate on them. Now that he's doing so much better, I may try to restring them tonight or tomorrow. I'll be sure to post some pics here. For those that are on Facebook, I've been posting pics and more frequent updates, because I can do that with my cell phone, which is much easier and faster. Just search for Tamara Gladden Lemus and you'll find me.

Tamara

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Kym · #2 2010-03-13, 12:04am

Done! best wishes to Connor and you!

REgards
Kym

patienthand · #3 2010-03-13, 6:29am

done!!!

Candice

Mitosis Glass · #4 2010-03-13, 10:40am

Message sent! Thanks for the update.

theglasszone · #5 2010-03-13, 12:29pm

I'm just tingly and smiling ear to ear! This is such fantastic news...bless all involved for all they've done to help this little guy! And bless his Mum too...this has got to be so very scary!

Looks like it's going great and thanks Mewsicmama for updating us!

De

NLC Beads · #6 2010-03-13, 1:56pm

Thank you for the update!

Is there an address we can send beads to for when he's home? If so, can someone PM it to me?

tamaralemus · #7 2010-03-13, 2:24pm

Hi guys. Conner is napping peacefully, so I've got a little time to update you. Thanks so much Candace and Shari for doing my job for me. I just haven't had to time to update much, so I've pretty much been focusing on facebook and carepages. Robert sent me a PM letting me know you guys were worrying and so I called Candace.

I'll try to get on here more often and let you know what is going on. They pulled out one of Conner's drainage chest tubes this morning, and he is much more comforable now. He actually stood for a few minutes earlier and took a few steps. I've posted lots of pics to my Facebook account, but none to carepages yet. It's easy posting to facebook with my phone, carepages is more complicated.

He is starting to smile some, and interact with others and point to things. A little bit of his personality is starting to come out. He actually clapped and said "Yay!" when we told him the IV was finished. He's also starting to say "Thank you" to the nurses when he hears me say it....

He is still on fluid restriction, which is hard for everyone, but it's what is best for him and his heart right now. Being that everything went so well, praise God, we are hoping to be out of here soon. We wouldn't be able to go home, but the Ronald McDonald House is so much more comfortable and he won't have pokes and procedures done constantly.

Thank you guys so much for the prayers, support, and cards!! This morning Conner had 27 cards, 12 from friends and family, and I'm assuming the rest is you guys!! Thanks for the Szemplinski Family, Rangar, Jody, Mike and Linda, Chip Cirillo, Dave Mocarsky, Dennis Hurley, Scott Carpenter, Garry Barney, Paul, Eric, Marshall Welch, Kym Kelly-Taylor, Chip Nation, and Alexander. From Indiana, New York, Connecticut, Hawaii, and Australia!!

I know these cards will mean a lot to Conner when he is old enough to understand the supportive and generous spirit in which they were given. Thank you guys so much for rooting for him, and I have no doubt that the many prayers and earnest hopes for a successful surgery have worked!! The surgery COULD NOT have been more successful, nor his recovery more speedy. I'm not saying it is easy, far from it. But, this could be a whole different update, unfortunately one that many parents must make. Please, guys, do what you can for the Beads of Courage program. I know that making some beads is great fun, and that butterflies are actually a difficult task, knowing their significance. But I can't possibly imagine how any bead could carry any more meaning for a parent.

I am so grateful that I was directed here to your community, and have great peace knowing that such generous and caring people are pulling for my warrior to make it through this difficult journey.

Tamara Lemus

dogmama45 · #8 2010-03-13, 4:41pm

do you have a paypal name we could use for donations??? Remember, beaders, even a dollar will help Conner out!!

tamaralemus · #9 2010-03-13, 6:14pm

dogmama,

Thank you so much for the thought, but I'm afraid I have to turn down your generous offer. Thankfully, we have wonderful insurance for Conner that pays at 90%, and my husband's coworkers took up a collection to help with personal expenses during this surgery. In addition, we were able to put aside our income tax refund to also use for food, lodging, etc.

I would ask instead that for any that were interested in donating finanically to assist us, to instead get in touch with Colin Smith at
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to see what the Beads of Courage program needs, butterflies, financial donations, certain beads, etc. Or, just use whatever you would have donated to purchase more materials to donate more beads. I know that for those of you that sew, bags are needed for each child to store their beads in, and Colin has the instructions for them....In this way, your generosity will benefit so many others families in the program, not just us.

I so appreciate the thought and spirit behind the offer, but I feel that we are in a much better financial situation than so many others, and I do not in any way want to take advantage of the generosity and giving that you guys have shown us over the past month. Your thoughts, prayers, well wishes, and moral support have made us rich in the only way that counts....

Tamara Lemus

glassgal · #10 2010-03-16, 6:58pm

Tamara,
I am so glad to hear thing are going better. Sent Conner a little note. Hugs and prayers!!
Lori