Sunday, March 1, 2015

RSV Sucks and A Little Time Off...

As some of you may have read on my Facebook fan page, my twins have been in the hospital with RSV since Wednesday. Yes, after a 9.5 week long stay in the NICU. Due to this, I will be limiting my posts, and most postings will be coming from friends and assistants I am hiring to keep my site running while I am unable to devote myself here 100%.

Big sis started with a cold on Wednesday the 18th, and was down for the count Thursday that week. She had a temperature and was back to her peachy self by Sunday, except a slight cough. Whenever she catches any kind of cold, she always ends up with a fairly high temperature (103-ish) and always has respiratory issues. She has Reactive Airway Disease/Asthma. I did my best to keep her quarantined from the twins, but as most of you parents with more than one kiddo know, it's usually only a matter of time before whatever virus it is makes it's way throughout the house. Well... unfortunately my quarantine did not work, and the virus ended up being RSV. No bueno for preemie twins, and especially no bueno for one of those twins that's medically fragile.



We called into the pediatrician first thing Wednesday AM 8:45 am, and the first opening was at 9:15. By some miracle, I was able to get the twins and my 3 year old out of the house in 15 minutes and to the doctor on time. I expected him to say it was just a regular cold, prescribe some breathing treatments (like we always did with Nugget), and send us on our way. Instead, he said he would be calling ahead to the ER and having us direct admitted to the hospital, as he was certain Little Miss had RSV and suspected Little Sir of having it, as well.

Wednesday was a whirlwind.

Little Sir was into the hospital early enough (day 2) that we were able to get ahead of the virus and as long as he does well overnight, he's discharging tomorrow.

He was only occasionally on oxygen, they were trying to keep him off if possible. He was coughing more Thursday, and definitely working harder to breathe. They made him NPO for a couple days (including no NG tube feeds), they don't want him to accidentally aspirate on bottle feeds or reflux bc he's coughing so much. I have been putting on the Pretty Ravens album and some other music for him to listen to, and that is keeping him calm and relaxed. Seriously. He likes Alternative and Indie Rock. That's my boy!

We'll start back going to Tucson for feeding therapy soon and work on getting that mouth working since his tongue and lip ties were revised on Feb 19th. We kept doing the exercises despite his feeling icky in the hospital b/c I'll be damned if I have to have them redone!!!

Little Miss has a very serious battle to fight. She is in critical condition. We're talking life-threatening and they have crash cart (code) meds in her room at all times.

She came in the hospital with oxygen saturations of 86%, and went from a nasal cannula to intubation in 12 hours. They moved her from ER to PICU without parental companionship. Hubby was not here at the moment, as he was running an errand getting things for our hospital stay and for our 3-yr old, Nugget. They almost never move a child without a parent unless it's serious stuff, and I had to stay down in the ER with Little Sir until they had a room for him.

Little Miss's lungs are in pretty bad shape and she has a lot of swelling throughout her entire body. She's on a lot of sedation and paralytics. We usually wake up in the morning cautiously optimistic and I try not to post too many "yay" facebook posts, because of how she has been trending throughout the day. Each evening, she tends to have a decline, almost negating any of the progress she has made throughout the day.

Here's a whole bunch of medical jargon, basically my understanding of exactly what's going on...
Her bronchiolitis and bronchospasms have decreased with all the steroids she's on, so the risk of pneumothorax has decreased, as but it's still a high concern. There's also atelectasis that is causing blood flow to shunt to other areas in her lungs that are transfusing oxygen- which is making those areas be very overworked. She's on so many medications, it's literally a list of a dozen or more, and sometimes there's just so many changes throughout the day, something that I'd just crossed off my list earlier in the day, just ends up getting added back on later. Her pH levels are extremely acidic (7.02-7.08) and have jumped up to almost low normal (7.3), but then drop down again as her oxygen saturation levels decrease and her carbon dioxide levels increase (they were scary, scary high).

RSV often causes pneumonia, as it causes a lot of mucus in the lungs. She got this part as well... Today we found out that her sputum (the mucus in her lungs) has tested positive for bacteria, specifically Staph and Klesbiella. We are waiting on sensitivity tests to see which antibiotics will best take care the bacterial pneumonia.

We expect Little Miss to be in the hospital for at least a minimum of a week or longer. She will likely be intubated through the upcoming week. A lot of this at this time is going to just be a lot of "wait and see", so I promise that I will try to post nightly updates on my Facebook page as I can.

Please continue prayers, sending good vibes, pink healing energy and love to our sweet girl as she continues this horrible battle.

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8 comments:

  1. Poor little babies. I'll say a prayer for them, for all of you. When my son was an infant he came down with H.I.B, the first case. He actually did pass and was brought back. So I have an idea what you're all going through. My thoughts and prayers are with your family.

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  2. Oh my heart is breaking for you mommy, and daddy. I know this has got to be so hard to watch your little ones go through. I will be praying for each of you and the doctor and nurse teams too to do the right things for these sweet little angles

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  3. Your babies are so beautiful, I know this must be such a hard time for everyone and yet such a blessing even though all this. Our family will lift you all in prayers and cover you all in LOVE and God's grace. xoxo

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  4. Aww bless their heart! I will be praying for them!

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  5. Awww! You are doing great mom!! My prayers are with you and your lil bubs!

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  6. Awe, what beautiful gifts you have received. Praying they are much better now

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  7. MY blessing to you , I am so sorry that you have to go through this.. May the good Lord place his hands upon them and heal them .. sending prayers.............

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  8. poor babies! i hope no more whirlwind days for you!!

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Thanks a bunch for your comment love!