I just got my family back together again and now we are split. Yesterday we had a scary episode with Lady that brought 911 to our home, took us to the local hospital, and ended up flying her back down to Stanford. Now Eric is down there with her while Elliot and I stay at home. She in now on NJ feeds but they are talking about a G tube. She won't stop throwing up and she ended up aspirating fluid into her lungs. Her sats dropped to the 60s and she is on high flow O2 at 8L.
I don't know what to say. Elliot is exaspirated that she is BACK at the hospital and he says he doesn't want her to be there b/c he doesn't want to leave home again. *break my heart!* We've lost our Medi-Cal b/c of timing and us being in the Bay (Arden is covered her first year no matter what, but Elliot and I can't get sick or break an arm!) Although Premier is making us money, with all the added expenses of constantly traveling down to the Bay in gas, food, rent, etc, I don't know what we are going to to. We've stalled WIC so many times I don't think they will renew us next time. My relationship with Eric is strained, to say the least. Elliot is acting out a lot to get ANY attention, with so much being spent on Sister. I'm so tired and pretty depressed. Please pray for each of us. We need it. Thanks
When using the internet at Stanford I can't log into my blog b/c apparently the content of blogs can't be monitored so it is considered "not child friendly" and therefore blocked. The internet at RMH is limited to when I can pick up the connection or when their internet room is open and I'm here. Hence the blog silence. I actually came here a few times and posted updates, only to be kicked off the site due to whatever with nothing saved... My frusteration at the lost time and energy just kept me away longer. Sorry!
To sum up June, it's been very hard. We've been dealing with Arden withdrawing from her meds, not eating, our family being separated once again, and again, and again, and more. Now, Eric and Elliot are home (it was Eric's father's day present to go home and get out of the RMH) and I am at the hospital with Lady. She is still there, but there is rumor of discharge the end of THIS WEEK! We don't know if it will be to RMH or home yet. I am praying for home, but I don't want to rush her recovery b/c I don't want her de-sating again and flown down here b/c we took her home too soon. Currently she isn't eating and being fed entirely by her NG tube. She'll take her pacifier and sucks on her fingers, but I believe she's associated eating with heart burn and puking and so she just doesn't. It will be something we will just have to push through. She is regulating her temp better, I'm praying the heat in Redding won't be too much for her!! We are getting discharged on a nebulizer for her, that is new, but will help her lungs.
Eric feels out of place at home since he's lived at RMH so long, Elliot has reached the end of his rope with our family not being together and cries more, and Lady and I are ready to get out of the hospital! Emotions rage from raw to jaded at this point, but the thought of discharge thrills me! I'll try to post again, but I don't know what access will look like. Will definitely write something when we get out, but I don't want to spend too much time here in case I kicked off again. :)
This week needs to be good, because I am leaving Thursday for a marathon of shows, and my heart won't be able to leave if Arden isn't doing good. Today we heard in morning rounds that her BUN and crit numbers are high (these are in relation to her kidneys.) She's been on so many diuretics for so long, stress on the kidneys isn't uncommon, but definitely not desired! As we speak, little Reagan is struggling with her kidneys with MUCH higher numbers that they were actually talking about dialysis! Pray neither of the girls get to that point!
I finally got the Dr's to pull out her OJ (the feeding tube running from her mouth to her intestins) b/c she would gag and then throw up. I wasn't too concerned about her throwing up b/c babies throw up - but it was getting to the point that it would upset her for at least a 1/2 hour while the nurses cleaned her and her bed up. She was using so much energy in the process that she wasn't gaining weight. Now she has only thrown up when the dr's increase the amount of food she is getting. She does good at 15mLs/hour but the full feeds of 27 and even just 20 make her throw up. She they've upped her calories from 24 cal/oz to 26. We'll see how she does.
She got both her central lines out which mean we can hold her, but she still has her drainage tube in which is severely irritating. So we've both held her, but she seems to do better when she is on her bed. Hold her moves her around which is good for her and gets more drainage out as well, but getting more drainage out keeps the tube in longer. This stinks b/c she is uncomfortable longer, but I tell myself that the fluid would be in her anyways, so this is just getting it out faster. I don't know if that is actually how it works, but it makes me feel better when I hold her.
My mom took Elliot yesterday so Eric and I could have some time with Lady together. Then I'll travel back to Redding for the shows on Thursday, back down here on Sunday or Monday for an event Eric and I have been asked to speak at, and back up to Redding for more shows and hopefully by the time the next weekend is up and my others shows are over, Eric will just get to bring Lady back up to Redding and Elliot and I won't have to travel back down.
Thank you for your continued prayer over health, timing, unity, finances, insurance, and whatever God is leading you to pray for. We'd love to hear what you hear back from Him on these matters and more! Thanks!
I feel like it's been forever since I posted last, but it's just been four days - crazy! I checked the news today to make sure we weren't in the middle of world war 3, we aren't. Even if we were, I'm pretty sure we wouldn't know. I can't explain the bizarre vortex time becomes when your life is the RMH and LPCH.
I was taking a break from updates b/c the last few days have had so many changes I didn't want to just be confusing. We are used to the constant change (kinda) but we know it can be complicated to read about.
So in summary, Arden is extabated. Victory! However we continue to struggle with her right upper lung and any weening that is done to get her off the high flow nasal cannula is reversed. Today I heard we successfully weened two liters and she is only at 6 now. Victory! Sigh, okay, so unfortunately we also lost her one PIV and her Arterial Line. She now only has her two central lines that go directly to her heart. These are the lines preventing us from holding her. They want to take them out Monday, which means we can hold her then, but it will leave her with no access so they want to take her to Cath and put a PICC line in. They tried looking at the bedside but her veins are just too small and too deep... and going to cath usually meaning getting intabated. Defeat. Big big defeat. The Dr. said she would pass the word to the respiratory team to do all they can to "bag her" for the procedure instead of intabating her, but we'll see how it goes. If they have to do that, we can't hold her until she is re-extabated... and that took weeks last time. Dr. Wright told us the day that she couldn't estimate how long we would be here b/c it's all up to Arden, but she said no less than two weeks. I've been praying over getting home by June, so it was defeating to hear that as well. We still don't know what will happen between now and June 2 (something important will happen that day, I can feel it) so I continue in prayer.
A pulminologist came in to see Arden finally b/c our heart team felt she had developed some sort of lung disease, but she couldn't say anything conclusive. She wanted to run two tests that "might" help, both requiring intabation. I said no. I didn't want her back on the vent for "might". If she ends up getting intabated in cath, we'll probably do one them, but well see. Her lungs as of today looked okay, so we don't want to disturb anything if they are healing.
She's also struggled with fevers, but I think it's b/c nurses think she's cold and cover her up... she's a little heater though and covers make her sweat. So I always rip them off when I get to the hospital and any "fever" she had goes away. :)
So all in all: today we seem to be okay. Prayer requests: Arden's healing. Elliot's pent up energy. Eric's cabin fever. My job... did we tell you? I quit Gymboree. I was supposed to be back at work this last week and there was just no having that. So Eric and I decided to step out on faith. And of course, we've continued to be taken care of financially! Our landlord even offered last months rent free and the next two months at 1/2 off! Plus, the jewelry business has been great. I'm looking at it as my full time job now, so with renewed gusto, I'm calling people, booking shows, talking about the business, and selling some fabulous pieces of jewelry! Interested in the jewelry, a show, the business?... let me know! :)
Thanks for your support - once again. I keep wanting to write a huge thank you note to everyone, but we've been SO blessed by SO many people, I'm terrified I'll forget someone. I'll suck it up and do it soon. Until then, thanks.
OH! HOW COULD I FORGET! Speaking of getting blessed... did I mention that Eric and I won a radio contest?!?! Seriously! Renee entered for us and we won! We are still in shock! We won a complete music library of Eric's favorite band, along with a bunch of other great things from the band including a personal word of encouragement and prayer from the lead singer of the band! Eric and I were in tears! So amazing! So encouraging! God is SO creative in how he loves us!
First of all, I'd like to announce Arden's successful extabation! Arden once again teamed up with God and against all odds is impressing the doctors with her breathing! Can I get a Whoop! Whoop!
I just wanted to share a few comments from Elliot today. He is such a ray of sunshine (when he isn't be a toad!) that I thought I'd share the light!
Elliot: (Out of nowhere while we are driving) Mommie, I don't want to be nice. Me: Why not? Elliot: b/c I've been nice all year so I don't have to be nice anymore. Me: Well, okay. But we still need to be nice. We should always be nice to people. Elliot: No, all the weeks I was nice so I'm all done.
Elliot: I love you all the way to the future!
Me: Pick your shirt up, we don't leave our clothes in the middle of the floor. Elliot: Well its dirty now b/c it's on the floor so I don't want to pick it up b/c it has germs now. You can get it Mommie so I don't get germs.
Elliot: Lord Jesus, thank you for God and for Jesus. And Jesus help me to listen and respect all the years. Amen
Elliot: Can I sit on sisters bed? Me: Not yet buddy, there are still too many tubes. You will be able to really soon though. Elliot: But I have to sit on the bed Mommie because sister loves me.
Eric: Are you excited to go to the baseball game? Elliot: No, I already go to one of those. Me: but you are going to see Kelly and Ethan there. Elliot: But I already see them so I don't want to go. Me: Well they will be wearing different clothes, and you are wearing different clothes. So this will be different. Elliot: (LONG PAUSE while he blank face stares at me) Okay, then I'll go.
I love my Elliot Thomas! Just thought I'd share! :)
Three men encompass my life: Jesus of Nazareth, Eric my husband, and Elliot my son. I love spending time near bodies of water, watching movies, and being with friends and family. I've always wanted to eat baked alaska, drive a mazda miata, and travel to austrailia... all of which I've never done.