Yesterday they decided to try sedation with morphine so they could pull back on the some of the other things Zoe has been getting large amounts of. It seemed to work. She had a nice peaceful day and an equally peaceful night.

Dr. Boyle is back today and during rounds they were discussing what happens when Zoe “wakes” up. They don’t want her paralyzed because her muscles will turn to pudding after awhile and she will have a very difficult time after transplant. That’s all fine with me. I don’t want her paralyzed any more than they do, but I do want her comfortable and this afternoon she wasn’t.

Before I get to the part where I got angry and was forced to behave badly, I’m going to update you on some of things happening to her physically. Because she has a tube down her throat, her nasal passages can’t drain and she obviously can’t swallow. So she’s been blowing snot bubbles and drooling far more than she ever has. When she starts to wake up and wants to breath through her nose is when the nasal drainage gets out of control. To help with that problem, we’ve been suctioning out her nose and her mouth. It seems to help. We also noticed that when she starts to stir, she becomes more awake if we rush to her and try to calm and quiet her. She responds to our touch and our voices and tries harder to overcome the sedation. So if we sit quietly and don’t touch her, she figgits a little and that’s it. It’s no where near as bad as it has been.

This afternoon she started to wiggle and I looked over and saw she was drooling pretty bad and had some serious whooper like snot bubbles. I woke Mike up so we could get her cleaned up. It was a big job and required 2 people. She started to get more aggitated and Mike went to grab the  nurse out of rounds. It was after 10 and she hadn’t had any sedatives since 5 so it was probably time. Apparently he was told we were wating for the good stuff to come from the pharmacy. So we cleaned and waited and she got more and more aggitated. She had her eyes completely open, was trying to get up and was violently kicking her feet. All the while, 3 Dr’s (Dr. Boyle included) and at least 2 nurses stood outside her door and watched. I finally got fed up and joined them in the hall. I said I was under the understanding that we were waiting on meds from the pharmacy and if they were all too busy to please point me in the direction and I would go get them myself. Dr. Boyle informed me about the muscle turning to pudding thing and he said they wanted to see exactly what happened when she “wakes” up to see if sedating her less was an option. (that’s the short version). I said that was great but right now if she could get her hands free and get up out of the bed she would. She was that awake and that she was thrashing violently and I had concerns of her knocking the breathing tube out of place. He nodded. Apparently that is a distinct possibility. Duh. I informed them that this is what happens when she wakes up and she was in need of some help…..like now! I turned and left them staring blankly and went back into her room to help Mike. He was suctioning (the more upset she got, the more snot bubbles she blew) and trying to calm her to no avail. I asked her if she was upset and scared and her eyes got very wide and she shook her head. She tried to get up again and Mike and I held her back down and that’s when she puckered her little lips around the tube and started to cry. I think both Mike and I saying loudly “Shhh baby! Don’t cry” got their attention because they abandoned rounds and the nurse gave her something to calm her. Finally. I guess they had had enough of the show were ready to change the channel.

Needless to say I’m beyond angry today. There is not excuse for leaving my daughter to cry and be afraid. It won’t be tolerated and I think I made that clear. I hope I made that clear.

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I’m pretty excited. Today I’m going to be on Blog Talk Radio (radio shows for the Internet – Whoulda thunk it!), talking with Connecting Women about Zoe and her story.

I’m pretty pumped about doing this because it means we are going to reach a massive audience of people and you never know what might come of that. While I doubt it would bring us a heart, I am hoping that it will bring in more people who want to be involved in the fundraising efforts we’ve been doing for Zoe and her parents. I’ve been told that the bills from Zoe’s care are starting come in and this is only the beginning.

If you’ve got no plans for this afternoon and want to take hear Zoe’s story and what we’re doing right now (maybe you’ve already got your Christmas shopping done and will be doing some wrapping or Holiday baking), you can click on this link: http://www.blogtalkradio.com/connectingwomen and listen at 12:00PM EST time.

I’m hoping you’ll tune in and listen.

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Happy Turkey Day!

No changes today. They are trying to pull back on the some of the sedatives. They may have found the right combination to keep her calm. They also added an anti-itch medication to list. It seems to be working. She’s been very itchy.  Other than that she’s about the same. No news is good news where Zoe is concerned lately.

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I had a long somewhat depressing talk with one of the Dr’s last night. Mike had to leave the room, but I like this Dr. He seems to be the only one willing to give the hard ugly truth about what it happening and what could happen. Mike calls him the angel of death. I now see where my daughter gets her flare for the dramatic.

Dr. Muntez (I’m fairly sure I spelled that wrong) said that Zoe holds for the record for the longest in hospital wait for her blood group. He has other Apos patients waiting at home but at the hospital it usually happens much faster than it is for her. The Dr’s are frustrated. There have been other transplants since we got here and he said every time the phone rings everyone thinks ZOE! but then they find out it’s for someone else. It’s disappointing for everyone. The sad fact is that as her wait grows, the margin of safety shrinks. There are 2 mechanical options available to help sustain her. Those bring on a increased risk of stroke and with her irregular heart rhythms the risk is greater for her. 1 of the options is approved for use in the US. However, once it’s put in, it can only be used for 1-2 weeks so the clock really starts to tick. The other hasn’t been approved for use but can be used under what’s called compassion. Research shows favorable results in Europe but use in the US hasn’t been approved yet. It’s understood when consent is given that the patient isn’t part of a clinical trial, but the findings from it’s use will be included in the research data. With it’s use 1/2 of the patients make it through transplant. 1/2 do not so you have a 50/50 shot. As it stands 5% of patients waiting for transplant don’t make it through the transplant for a variety of reasons. With the use of these mechanical devices the risk doubles to 10% who don’t make it and the saddest truth is that not everyone listed lives to see the transplant. Some die on the list. It’s sad and it’s ugly, but it’s reality and no one is safe from reality. Mike has asked me not to be realistic in in presence. I said I would be happy to blow sunshine up his butt as long he wants me to. He is appreciative. Unfortunately I don’t know the name of these devices. I’m assuming that 1 of them is EKMO. ( i think i have that acronym right)

Here’s what’s happening now. Saturday her blood pressure dropped dangerously low. They started Dubotamine and a calcium drip to try to correct that. The problem with dubotamine is that it makes the heart work harder and no one wants her heart doing that for very long. So once her bp came back up they weened her off of it. They also pulled back on her tube feedings. They think too much blood was going to the intestines to aid in digestion.

They are having a harder time sedating our little prize fighter. They started a paralytic because when she wakes up and thrashes around (she’s very itchy) she can damage her esophagus with the breathing tube. They had to go up on all her sedatives and paralytics yesterday and as a result her bp dropped low again. They started the dubotamine again and her bp is stable again so they’re working to ween her off again. The tube feeds are at a slow a drip. Enough to keep her digestive system stimulated, but not enough to warrant actual digestion.

Because of the IV in her right ankle she has a small infection. The IV is coming out and they are starting her on some antibiotics until the cultures come back and they see exactly what they are dealing with. The infection presented itself as a series of red lines across her inner thigh. When someone pressed on it this morning and asked her if it hurt, she shook her head yes. That’s a possible reason for her fevers and for her increased agitation the last few days.

On the up side her donor pool as been increased. They measured her fist Saturday to see exactly how big they can go. (Fun fact: make a fist….that is the approximate size of your heart) I think now we’re accepting 1/2 her size up to 2x her size. They also increased the search area from 1500 sq. miles to 2200. That’s almost nationwide. The Clinic itself has 2 Lear jets they use. They have employed a company out of Atlanta that has a faster jet which allowed for the area increase.

So for now she’s stable and slightly more paralyzed for her own protection. Dr. Boyle is leaving town tonight and we all know what that means. Hearts tend to come while he’s gone. We didn’t get lucky last time, but that was a work trip. This is a vacation and he will gone for 3 days. Half my family is out of town this week as well so he says we should definitely get lucky. The stars may be well aligned for us during this holiday week.

As always, the clock continues to tick.

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I appreciate all the prayers and people wishing Zoe well. I have just one small request. I don’t intend to offend anyone with this request, but there’s always the possibility it will happen.

In some of the messages here people say they are praying for Gods will to be done. What if it is Gods will to take her? This line of prayer seems counterproductive to me. If that’s the case, everyone who wants to see Zoe recover is actually praying for the opposite. I have an issue with this. I understand that in order for Zoe to live another child has to die. Maybe it makes me a bad person but I can live with that. I refuse to let her go. Those of you who visit ,who are people of faith may find what I just said a little ridiculous. If it is Gods will, it will be done. Nope. Sorry. Not my daughter. Not this time. I’m stubborn like that. So is Zoe and she and I are on the same page.

So if you could focus your energies into wishing her recovery I’d appreciate that. Pray for a heart. I don’t care if comes from a donor or if, by some miracle, research shifts into over-drive and they figure out a way to grow a heart in a test tube in the near future. Whatever. Let’s focus on getting Zoe a heart.

I appreciate the assistance.

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Zoe has been a little agitated so far today so they’ve increased her sedation meds to keep her calm. Her nose was itchy and where the diaper gathers (they started her tube feedings yesterday) was itchy and she was desperately trying to scratch all of those places and get comfortable. I scratched her nose and daddy took care of the leg. I told her to close her eyes and go back to sleep, she shook her head no. Even sedated she doesn’t want to listen.

All of her numbers look good and her liver is better. She seems to be running a fever off and on so she’s been given antibiotics. They took blood and are doing the cultures but waiting for things to grow can take time. So she gets tylenol as needed.

The versed she’s on has an amnesia affect so she won’t remember this. Thankfully. I was pretty afraid she would. She already has a sleep phobia and the last thing she needs after getting a new heart is a coffee addiction because she’s afraid to sleep.

Unfortunetly since she’s sleeping like a lightly sedated baby, my posts won’t be anywhere near as interesting as they were. Zoe adds a little color to everything but she’s out cold. So I may update less. I can only say “we turned her today” so many times before I start to get bored with it so I’ll spare you all the monotony.

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I’m posting very late because it’s been a long and trying day for everyone, especially Zoe. Mike stayed last night and she seemed to be holding up pretty well. She got her hair washed and had some more cantaloupe, strawberries and pancakes for breakfast. After her getting her hair washed she started to complain about a pain in her left side and her left shoulder. She said she was having trouble breathing. She tried to play but got tired and asked me to take her Polly’s and their make-shift swimming pool away. She said she was cold and spent a majority of the morning asleep.

Dr. Boyle mentioned the possibility of a ventilator to relieve her body of the strain of breathing since it had obviously become difficult. He hovered a bit more than usual this morning and assessed her often while he was deciding.

Early this afternoon he decided a breathing tube would be best for her and they intubated her at about 1:30 this afternoon. She’s lightly sedated to keep her “asleep” so she doesn’t stress out and try to pull the tube out. She will remain this way until a heart becomes available. (sigh) So that’s where we are today. Solid food to a machine breathing for her in less than 24 hours.

On an even less pleasant note: There seem to be rumors circulating. A week ago a women went into a friends mothers church and asked them to start a prayer chain for Zoe Tanner because she had only 12 hours to get a new heart. My friends mom of course freaked a little and called my friend who freaked a little more who tried to call me and when she couldn’t get me freaked a little more and then called my mom who tried to set her mind at ease. If Zoe had become that critical I would have told her. This morning shortly after the decision to put the breathing tube in had been made I received a call from Zoe’s principle. She had received a call from members of another church (who’s children attend fbcs) and was told that Zoe had been placed on a ventilator this morning. Erie coincidence I know but the only people who knew what was happening was immediate family and they hadn’t told a soul, let alone enough souls to get to where it did.

I understand everyone cares about my muffin and I appreciate that but please, let’s not start a panic. Either I or my sister will post all changes in her status on this site. Unless you read it here, it’s not true. I can assure everyone of that.

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Dr. Boyle decided not to punish Zoe for dietarys transgression. He let her have her 15cc every hour and he let her have solid food for the first time in 2 weeks. We tried french fried with no salt but they were too dry. I hit the cafeteria and found 4 of the driest pieces of cantaloupe I could find (fruit’s full of water & we don’t want to waste her fluid allowance). She ate those without a problem and has kept them down. Her offered her an array of breakfast items but she has a taste for watermelon and won’t be swayed. Guess we’ll have to keep trying.

I spoke with Grandma Sue today and she asked for the address so she and Papa Carroll could send her something……low and behold I have no idea what it is. That got me thinking, I wonder how many other people want to send a card or something but don’t know where to. So I’m posting the address I got off the Cleveland clinic web site with Zoe’s room number.

Cleveland Clinic Foundation

9500 Euclid Avenue

Cleveland , Oh 44195

Patient: Zoe Tanner, Rm M43-02

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You’ll notice I don’t post here like Chrissy does. That’s because I’m busy behind the scenes keeping an eye on the site, making sure it doesn’t go down or have other difficulties or over run by spam, and because it’s really Chrissy who’s better at keeping everyone up to date and informed. I know there’s a lot on her plate right now but I’m sure that we can all agree to be thankful that she takes the time to post and update everyone. Every day I’m constantly amazed at the number of comments I approve, most days it’s in upwards of 10 comments. I know Chrissy is approving them on her end also so I can imagine how many she receives. It’s great to see everyone telling Zoe that she is missed at school – it makes me certain that this site was the best way for everyone, even those who can’t come and see her, be heard.

I’m going to be adding some changes here, hopefully some more interactive features – I’m looking for an app that allows people to make video comments. I think that would be wonderful for Zoe to hear her friends and not just see the words. I’m working on this so give me some time.

One of the things I can do, today is make changes to the blogroll. I’m going to be adding other blogs and sites that have added Zoe’s button to them. If you’re a blogger who would like to say hi, grab her button and place it on your site, let me know and I’ll add you to the blogroll. It’s my way of saying thank you to the blogosphere and their outpouring of support.

Speaking of support – Our spaghetti dinner and silent auction is beginning to pull together nicely. We are still in need of silent auction donations, so if you know of any businesses, who have a service that they could offer, gift cards, or even products (we are looking at brand new items for this event. We understand that some auctions are done with used and gently used items but we are offering our items as the perfect way to get some Christmas shopping done AND give to a good cause). Mike and Chrissy’s medical expenses alone for this are going to be Ginormous so even the smallest donation is appreciated.

So far though, as we’ve been gathering items for the auction, there is a great diversity and something for everyone! From local businesses offering up their services with gift baskets, gift certificates to cash in, handmade items, speciality shops, local television stations, and even some of Ohio’s major and minor league teams are becoming donors! Right now I’m estimating that our auction items are valued over $500.

I don’t want anyone to think that only store bought items, if you’re a crafter (I know we have a few!!) or you crochet, sew, quilt, and you’d like to put something together, feel free to contact me. I’m a fan of quilts and blankets so you’d be likely to get my bids!

As we get closer to the dinner and auction, we’ll put up our list of donations and add to them as they come in so anyone who will be attending can get a first look through this site at what we have to offer.

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I wanted to post a link to site for an old “neighbor” of Zoe’s here in the PICU. I went to school with her mom and low and behold our girls end up across the hall here at the clinic a few weeks ago. Stella’s got some heart issues of her own. If you have a minute, go visit her site.

http://www.caringbridge.org/visit/babyternes

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