Monthly Archives: August 2013

Emily has a port – and it’s purple, of course!

Ready to go to the hospital!

Ready to go to the hospital!

On Thursday, Aug. 29th, Emily had the surgery to get her new port, which now replaces her previous Broviac catheter. As with the Broviac, the port will be used to give Emily IV fluids, chemo, and antibiotics and will also be used to draw labs, thus saving her from repeated IV sticks. The port was placed in her lower chest, just under the skin, and it has a catheter which threads under the skin and into the large, subclavian vein that is above her collarbone.

Playing "paper" dolls with Momma while waiting for surgery.

Playing “paper” dolls with Momma while waiting for surgery.

Emily left the house at 7:00 am, dressed as usual in her girly finery – fancy white top, new pink tutu (have to have a new one for surgery!), Egyptian-style sandals, pink polish and a pink rose headband. You would not believe how many nurses peeked into Emily’s pre-surgery waiting room to view whatever glittery, frilly clothes and baubles she had worn this time! Apparently, she is known for her fashion statements! You can never start too young — just sayin’!

Checking out a port.

Checking out a port.

It's purple!

It’s purple!

One of the Child Life Specialists brought her toys to occupy her during the two hours that we – Emily, Chrissie, and Grammie/me – waited prior to the surgery, and Chrissie and Emily had quite a story made up with their paper dolls. Also during that time, vitals had to be checked, paperwork had to be done, and visits had to be made by the doctors and anesthesiologist. The Child Life Specialist also brought in a port – purple, of course(!) – so that we could see what it would look like once inside of Emily. Emily was very interested and even more thrilled that it would be purple! Enough cannot be said about how much the Child Life Specialists do to help ease the wait and the anxiety and questions for parents and for the children.

Pre-surgery sleep.

Pre-surgery sleep.

Once it got closer to the surgery time, Emily was given some Valium – by way of a syringe that Chrissie squirted into Emily’s mouth – so that she would be relaxed when they wheeled her into the surgery room. Emily repeatedly asked if it was time to go for her ride – showing how many many times she has done the gurney ride down the hallway. To her, it’s just part of the process and it’s a kudo to the hospital staff that it isn’t a scary thing for her. Once inside the surgery room, she was given some gas with a mask and after she was completely asleep, they inserted a peripheral IV, in her hand, so that they could give her fluids and draw her weekly labs during the surgery. It was planned that way so that she wouldn’t have any needle sticks when she was awake. Another praise for the staff for thinking ahead for her.

Emily's new port - otherwise known as "her lump!"

Emily’s new port!

During her surgery, Chrissie and I went for some much-needed coffee. Well, I got coffee – Chrissie got Ibuprofen, to help with her very sore jaw, after having three wisdom teeth pulled on Monday. Once Emily was back from surgery, Chrissie and I went back into the pre-surgery/recovery room and waited for Emily to wake up. We also got our first look at her new port. The first thing she asked for as she was waking up was her pacifier. A few minutes later, she was asking for “ketchup and potato chips and chicken nuggets and French fries!”

Dressed to go - but still half asleep - but always a fashion-plate!

Dressed to go – still half asleep, but always a fashionista!

Realizing that her chest is a bit sore.

Realizing that her chest is a bit sore.

After picking up her brothers and sister from the friend who had been watching them all day, we drove through a McDonalds drive-thru, then home. Emily merely looked at her requested food for awhile, then eventually ended up eating most of it. By the end of the afternoon, both Emily and Momma were sitting on the couch, with ice packs on their chest and cheek, respectively.

Food! - just not sure yet if she really wants to eat it.

Food! – just not sure yet if she really wants to eat it.

The end of the day ---

The end of the day —

The next morning, Emily was still a little sore but feeling so much better that she went to everyone in the house, saying “I can walk! Look, I can walk!” and doing little dances. Apparently, she had felt so bad the day before that feeling good enough to be able to get up and walk just had to be announced! Her chest is feeling even better today – and Momma’s face is still a little swollen and sore but she says she is better, too.

Thank you to everyone who helped with prayers and child care – and to everyone at U.C. Davis for taking such good care of Emily —

Advertisements

We’re putting in a Port

After extensive research, prayer, and talking with doctors/nurses and other families, we’ve decided to go with the Portecath central line instead of a Broviac. Everyone seems to agree that this is a wonderful option for Emily, and she is very excited. Presented with the two choices, she decided that she wants to be able to take baths and go swimming, and she is “going to be very brave,” when she has to get poked each time she’s accessed.She proved this last Friday when we went to the Infusion Room for her IgG transfusion. She had to have an IV put in her hand, and she did so great!! Just a little bit of crying with the needle poke, then she was fine. She didn’t even move her hand. Her nurses were so impressed, and when she was done they presented her with a reward they had purchased the night before -a sparkly, glittery My Little Pony. Emily thought the poke was definitely worth it 😉

Her surgery is scheduled for Thursday morning, and she’ll have her Port accessed for the first time when she receives her monthly spinal tap and chemos next Tuesday. Please keep her in your prayers during the next week, as she will have to be very, very brave.

Today we got to meet with her oncologist, Dr. Ducore, and I had the chance to ask him my burning question: Since the discovery of her Minimum Residual Disease (MRD) in March 2012 (which is one of the reasons she is being treated High Risk), have there been any further studies, trials, or outcomes showing that following the High Risk protocol has increased her chances of not relapsing, as hoped? He shared that unfortunately, because the importance of MRD has only just recently been discovered -within the last couple of years – the studies and trials testing how well kids with it respond to a High Risk treatment will still take another 5-10 years. Emily is ineligible for the trials, but she is one of the first patients, who presented with MRD, being treated with the more intensive High Risk protocol. So we won’t have any answers during her treatment. The good news, however, is that High Risk kids have a tendency to relapse earlier in their treatment, usually within two years of being diagnosed. If they don’t relapse in that time frame, they then fall into the Low-Standard Risk groups and have just as good of a chance of not relapsing as everyone else. Emily is 18 months into her treatment and doing well!! And, ultimately, as Auntie Plum wrote when we first learned of the MRD, we are trusting God for a 100% chance of not relapsing 🙂

Home-again, Home-again, Jiggity-jog

And just like that, we’re home. All five children are tucked snugly in their beds. We snuggled and hugged and kissed and shared stories and laughs. We read bedtime stories and ate dinner together. Emily received so many squeezes that by bedtime she was pushing her brothers away. Typical. She begs to see them when we’re at the hospital. I think she doesn’t want them to get too high an opinion of themselves 😀 She and Sophia decided to sleep in the same bed to be closer to each other. That lasted all of 20 minutes before they had had enough of each other and ended up in their own beds.

So after a successful Broviac removal yesterday, a switch to oral rather than IV antibiotics, plus a completely rebounded little girl, Emily’s doctors decided she could go home today. I was a little taken aback, as I thought they wanted to monitor her reaction to the oral antibiotic longer, but they assured me they wouldn’t let her go home if they didn’t think it was okay (of course), and we were all completely done with the hospital, so I didn’t put up too much of a fight 🙂 She had one last lab draw and then her peripheral line was taken out. And we got to bring her home without anything attached to her!

No tubes!

No tubes!

Now Jason and I need to make the decision between placing another Broviac or inserting a Portacath for her continued treatment. We have researched, talked to the doctors, the nurses, the surgeons, and to other families with central line experience, and we’re still not sure which we want to go with. The Port would allow a lot more freedom for Emily. She could take baths and go swimming, and we wouldn’t have to worry about her tubes being pulled or getting caught on something. The downside is that each time she’s accessed she’d have to get a poke, since the Port is under the skin. However there is a numbing cream that helps, and everyone we’ve talked to says most children don’t feel a thing. The bigger downside is that she’d only have one line to run meds/fluids/etc. through, so if certain meds aren’t compatible, one would need to be stopped while another runs. Or she’d need to get a peripheral line placed in order to run two things at once. Now, this isn’t even something we’d encounter unless she ends up back in the hospital again. And we’re not expecting to! The Broviac seems easy to us, since we’re used to it. She can have as many things running as needed, since there are two lines that don’t intercept each other, and she’s already used to no swimming and shallow baths. But it would be nice to not have that worry of tubes connected to her heart hanging outside her body. Regarding risk of infection, which is my number one concern, both the Port and Broviac carry the same risk. That’s just something we’re not going to get away from, unfortunately. We have some time to make the decision. Our appt with her oncologist is scheduled for Monday Aug 26th, and her surgery is scheduled for Friday Aug 30th. In the meantime, we’re going to enjoy a central-line-free child.

I originally sat down to share my emotions, thoughts, and feelings regarding this latest hiccup in Emily’s journey, but once again I’ve chickened out. I don’t know why, but I have a hard time sorting it all out and putting it down on paper, so to speak. I can say that this past week feels completely surreal. Less than a week ago I was asking the doctor if Emily was going to make it, and now we’re back home as if nothing happened. I think that in my own mind I gloss over these serious events as a coping mechanism, and when they’re over, I file them away and almost forget they happened at all. I am always surprised when a doctor or resident recites part of Emily’s file and comments on how difficult her journey has been or how many close encounters she’s had. I’d like to think that it’s because my faith is so great and I’m staying positive, but the truth is that it’s much easier to deal with this whole unsavory situation when I don’t think about it at all.

And now I feel completely uncomfortable for sharing that much, so I’m going to change the subject and share some cute pictures of Emily 🙂

A visit from Cousins and Auntie Marni to brighten up her day!

A visit from Cousins and Auntie Marni to brighten up her day!

Love Cousins

Love Cousins

Playing with Grammie

Playing with Grammie

Being silly with Grandma & Papa

Being silly with Grandma & Papa

And Emily “reading” to Grammie

Another thing I wanted to share tonight is my gratitude. Thank you everyone who prayed, visited, brought meals to my family, and watched my children. This past week was an emotional one, and it was such a huge, huge blessing to not have to even think about how my family was faring without me. They were so well taken care of, as were Emily and I, and you all have my deepest gratitude.

Update – Day 7 – Tuesday

This was Emily this morning - all smiles and giggles and fun!

This was Emily this morning – all smiles and giggles and fun!

– We have some progress today — We got news from Emily’s Oncologists that three(!) bacteria have been isolated from Emily’s blood stream. Pseudomonas – serratia – and a new one, leclercia. As we understand it, Pseudomonas is common – serratia is uncommon, enough so that nurses said they had almost never seen it cultured from a patient – and leclercia, so rare that none of the nurses had ever even heard of it, including me. Like serratia, leclercia is found in the intestinal tract. When it causes problems, it’s usually in immunocompromised patients and it’s found along with other infectious organisms, as in Emily’s case. The leclercia was isolated from the first day’s labs but took longer to grow; therefore, we are just now learning about it. As is usual with Emily, she comes up with the unusual – her doctors were surprised when she was invaded by two organisms – more than surprised by there being three.

– Emily’s Broviac catheter was removed this afternoon. They managed to squeeze her in to the surgery schedule – the procedure was quick and went well – and after she came out of the anesthesia, she was returned to her room, where she promptly chowed down on a bag of Ruffles potato chips – then later ate chicken nuggets, which Auntie Gaby kindly brought to her.

Emily and her reward of Ruffles potato chips!

Emily and her reward of Ruffles potato chips!

– She now has a peripheral IV line in her hand, which will be used for lab draws. She’s been put on oral antibiotics – yea! The Culture and Sensitivity lab finally came back showing a new antibiotic, Levaquin, would work. The Infectious Disease doctors, who have the final say in these things, advised that since the source of infection, her Broviac, has now been removed, she should be okay with oral antibiotics, rather than IV. She’ll be taking Levaquin for four days and, if she remains healthy, there will be no need for further IV antibiotics and she may get to go home soon. Along with her entourage, of course!

– For now, she is still in the PICU, which is fine. We are slowly coming to grips with the gowns and gloves and she can be monitored continuously there. If she shows any sign of relapse, IV antibiotics will be restarted.

– Thank you – AGAIN – for all of your prayers and your support, both physical and emotional. It looks like maybe there’s now a light at the end of this tunnel. Thank you —-

Update – Day 6 – Monday

photo-30

– Emily is doing much better today! Her blood pressures and vital signs have been good, she had chicken nuggets and catsup for lunch, then took a good nap and woke up with bubbles in her tummy – or so it seems! She had a great visit with Papa and Grandma/Larry and Rebecca before lunch and got to visit with Chrissie’s friend, Liz, after dinner. She has informed everyone about her wishes for Christmas – a pony, among other things – and told stories and laughed and giggled. It’s awesome to see Stitch again!

– Her blood cultures from yesterday are so far still negative, though they will continue to be watched, as it can take 48-72 hours for bacteria to grow. But the slow growth is good news, as it means the infection is at least lessening. The Infectious Disease doctors said it’s possible that the earlier, positive culture for Serratia was a false one, but she is definitely positive for Pseudomonas. The lab is continuing to test the earliest cultures to find exactly which antibiotic the bacteria is most sensitive -and therefore responsive -to. In the meantime, Emily will continue to receive the two broad-spectrum antibiotics that usually clear gram-negative bacteria.

– Her primary Oncologist, Dr. Ducore, advised that removing her Broviac catheter may be the logical decision at this point. He said that Pseudomonas is very hard to clear completely and that even if her cultures continue to come back negative, there’s a chance that a very small amount of bacteria could “hide” in her catheters and cause another episode of infection months down the road. Since she woke up seemingly fine last Wednesday and was in septic shock within a few hours, no one wants to take that chance. Chrissie and Jason agree with Dr. Ducore. So —- she is scheduled for surgery to remove the catheter – hopefully tomorrow. They are having to fit her into the surgery schedule so that means it could be as early as 8:00 am – or later in the day – or even the next day.

– After the Broviac is removed, Emily’s doctors will wait until all of the current infection is cleared out of her system and her body has healed from the surgery and will then discuss possibly inserting a new catheter. In the meantime, she’ll have some kind of IV line in one of her arms.

– For tonight, we are still in the PICU. She has now been downgraded to be able to go to the regular Peds floor so we are waiting for a room to open up. Seems like we’re always waiting for that! In the meantime, just keep praying. Your prayers are obviously helping her and supporting Chrissie and Jason. Thank you so very very much —-

Update – Day 5 – Sunday

Emily got a visit from Bapa/Grandpa Tom this morning!

Emily got a visit from Bapa/Grandpa Tom this morning!

– We are still in the PICU! This morning, we were going to be “downgraded” to go downstairs as soon as they had a room. Then the Hem-Oc (Hemtology-Oncology) doctor came in and said they’d like to watch her up here for maybe another day, just to be sure. In the PICU, she’s hooked up to constant monitoring of her vital signs where, on the regular Peds floor, she isn’t. Later, we were told that downstairs had a room for us, they just needed to get the patient who was in it, discharged. Then, later(!), we were told that the Hem-Oc docs didn’t downgrade her to a regular floor, but to “special care status,” meaning they want her to stay here for today and tonight.
So, you just have to roll with it and assume anything that you are told, could change!

– Emily’s doctor said that if she has four days’ straight of positive blood cultures for bacteria, then they will remove her Broviac catheter. Once the current infection is cleared, she could possibly get another Broviac or maybe a port, which is another type of central line catheter. That will be a discussion for Chrissie and Jason and her primary Oncologist, Dr. Ducore. Yesterday’s positive culture was considered day 2 for the labs, so we shall see how today’s and tomorrow’s turn out.

Bapa brought McDonald's chicken nuggets and Emily was thrilled, to say the least!

Bapa brought McDonald’s chicken nuggets and Emily was thrilled, to say the least!

– Emily’s vital signs have been good and she was in a much much better mood for most of the day! She seems pretty quiet right now – took a four-hour nap and still doesn’t want to be very active – but she’s been stuck in a bed for several days and sometimes that makes you feel not so good. Either way, she seems better each day.

Emily and Daddy!

Emily and Daddy!

How Can I Help?

Since Wednesday, so many people have emailed asking how they can help or have approached a friend or family member asking the same. We are so grateful for all of you and the blessings you bestow on the Love family! For this hospitalization, here are three of the key ways that you can help out of the six on the page “How You Can Help“:

ChildCare: During hospitalizations, the kids traditionally stay with myself (Auntie Gaby) and my husband Jay, as their dad leaves for work at 5am on weekdays and it was historically too hard on the kids to get up that early and too hard to obtain childcare at that time of day. This time though, Jason has obtained permission from his employer to temporarily work from home. This is a tremendous blessing as it means the kids can stay in their own beds, something they are VERY excited about! To help Jason actually get some work done, he has asked for help during the hours of 7am-3pm Monday, Tuesday, Wednesday and Friday of this week. A childcare email went out Friday night and a few days are covered but we still need help. If you would like to be added to the list of babysitters, please email us with your availability, address, phone number, relationship to family (I’m still learning who’s a cousin, uncle or friend in this huge family) and include if you would like to be called in an emergency only, and we will get in touch. That email address is emily.stitch.love@gmail.com.

Meals: The Meal Train that worked so well when Emily was first diagnosed, has been activated. All of the instructions for where to deliver and more, are within the Meal Train website. One thing we want to emphasize is that the kids are in Summer Little League and Jason is helping coach two teams. He will not be home most evenings  around dinner time to accept a food delivery so it is very important that meals arrive between 9am and 3pm. We know these are awkward times so if they don’t work for you, please contact Jason to schedule a drop off the night before, after they get home from Baseball. Jason’s cell phone is listed in the meal train, so you can call or text him. If you are able to serve by providing meals for the family, create a log in at Meal Train and sign up for any open date!

Prayer: We know there are people following this blog from all over the world and for you, we simply ask that you continue praying. For specific prayer, please pray for the Children by name: Ethan, Adam, William and Sophia, who very much miss their Mommy. Please pray for Jason who is out of his comfort zone this week juggling work, Little League, laundry, bath time and all other duties Christina usually covers. Please pray for Chrissie who is scared and know that she has faith that God has a plan and is in constant prayer herself. Chrissie is tired and her back is sore from Emily’s hospital bed (I was in it for 3 hours yesterday while Chrissie attended her sister-n-laws baby shower and my back is still spasming this morning). Please pray that Chrissie’s tired body gets some relief. Please pray for Tom (Bapa) who is without his wife (Grammie) as she dutifully stays by Chrissie and Emily’s side in the hospital, making sure Chrissie gets to eat, asking medical questions of the doctors and helping as adult company during the long hospital stay (did we mention how glad we are that she retired early??). Please pray for the Labs at UC Davis as they run tests on the bacteria cultures, trying to quickly isolate the best drug to attack the bacteria in Emily’s blood. Please lift up Emily’s huge staff of Doctors and Nurses as they monitor every little thing, knowing that Emily rarely shows signs anything is wrong until it is REALLY wrong. Also, please pray for our little Emily who has not been very Stitch like this week. She is tired, puny and mostly (mostly!!!) mellow. Though this makes it easier on Mommy, we pray that Emily returns to her normal, Stitch (stinker) self quickly.

Beyond those requests, if you have questions or want to help in any way, Contact us at emily.stitch.love@gmail.com. Family members are regularly checking this email account and will do their best to respond quickly by phone or email.

As always, Thank you!

Update – Day 4 – Saturday

Can't say enough for pink finger nails and toenails!

Can’t say enough for pink finger nails and toenails!

– So, we’re still in the ICU. This morning, we thought we’d probably be transferred to the regular Peds floor tonight but tonight, we’re not sure what’s being planned! And so it goes when you’re in the hospital —

– Emily’s blood pressure medicine was turned off at 7:00 this morning(!) – and her blood pressures have been good all day!

– Emily was running a lowgrade temp for several hours today – up to 100.2 – and looking kind of puny – sluggish and droopy eyes – but her temp is ok now and she’s playing games on Momma’s phone. Her heart rate has been increased for a good part of the day and she’s had an intermittent headache but she does have a continuing infection in her system so that could be the cause. We’re just keeping a close eye on her.

– We finally have definite results for the lab cultures on what type of gram negative bacteria have invaded her system – Serratia and “presumed positive” for Pseudomonas. We’re a little unclear whether the Pseudomonas is “presumed” because it has started to grow or because it’s usually there, but they definitely said Pseudomonas. We (Momma and Grammie) asked how usual it is for someone to have two bacteria invading their bloodstream but we never got a definite answer! Both bacteria can be common inside the body so we still don’t know if this bacteria originated from inside of her and, for whatever reason, got into her blood stream – or if it was a contamination from outside of her.

– The doctors have started ethanol locks (for five days) in her Broviac catheter, the central line that comes out of her chest. Bacteria like to attach to things and sometimes they will stick to the walls of a catheter and “colonize” it, or start to live there. Ethanol will kill gram negative bacteria if left in contact long enough; therefore, the nurses inject a precise amount of ethanol into each of the lumens (or lines) of her catheter, leave it there for four hours, then withdraw it. If this clears the bacteria and she no longer tests positive for it, they may be able to save her central line. If she continues to test positive for bacteria, she may need to have the line removed. And just in case you’re wondering about whether the ethanol will get into her blood stream and be toxic to her, the nurses inject only enough to fill each catheter lumen, but not to go out of them and into the blood stream, and then they withdraw the same amount.

McDonald's!!!

McDonald’s!!!

– Best part of today – other than getting rid of the blood pressure med – was that she got to start solid food!!! She downed a McDonald’s chicken nugget Happy Meal and then immediately went to sleep! We also got to go for a walk around the PICU halls! Just a little bitty taste of freedom!

photo-25

P.S. The nurses have just said that the plan is to do the first ethanol lock here, in the PICU, and that even if the doctors had written an order for her to be transferred to the regular Peds floor, which they have not, there is no room for her now. So, maybe we’ll learn to like these gowns and gloves –!

Emily got a very quick visit from Sophie!

Emily got a very quick visit from Sophie!

P.S.S. 10:00 pm – Just got word from the night doctor that her lab cultures from earlier today came back positive for bacteria again – Serratia and Pseudomonas – so the IV antibiotics alone haven’t yet cleared it out. The lab is still running the Culture and Sensitivity that will show which specific antibiotics will finish the bacteria off. And the doctor said, as we have read online, that the ethanol locks along with IV antibiotics can be a wonder combination.

Update – Day 3 – Friday

– Today has been a rollercoaster. Before we went to bed last night, Emily’s blood pressure medication, Norepinephrine, had been decreased to as low as it could without being turned off and the hope was that her blood pressures would remain stable and we all could merrily be transferred to the regular Peds floor today and not have to deal with gowns and gloves and multiple monitoring lines anymore. Of course, that didn’t happen. Her BP’s slipped as low as 60/30 during the night and so the medication dose was increased a notch. Then decreased again as her pressures returned to normal. Then increased again – twice – as her pressures fell again, once as low as 60/20. Hence, the rollercoaster. She has to have enough pressure/force in her circulatory system to be able to push the blood to all of her organs, to keep them healthy. Problem is, when your body is fighting an invasion by a bacteria, sometimes your blood vessels get weak and/or leaky and they just don’t work like they should. They will, they just aren’t yet.

A very very cold child - and a very worried Momma.

A very very cold child – and a very worried Momma.

– Emily has had two more episodes of temperature spikes. One started at 4 am this morning with intense shivering, a heart rate into the 190’s, and after about an hour, the temp started and went up to 101.4. She was then given Tylenol. Chrissie and I are pretty sure Emily’s temp increased some more but it wasn’t actually taken again until after the Tylenol had kicked in. Emily was more sleepy than usual after that but otherwise okay. About 11 am, the same scenario occurred again – intense shivering – so intense that Emily hurt all over, her lips were a little blue, and she was just curled under the blankets in a little ball of legs and arms. Her heart rate this time got up to 215. Surprise, surprise – her blood pressures were pretty good during all of this. The nurses gave her Tylenol but her temp continued to go up to 105.2, then finally decreased. After this second episode, which lasted two plus hours, Emily was her normal, smiley self. Can’t say the same for the rest of us.

– Chrissie’s doctor came in this afternoon to tell us that her blood cultures from this morning again showed gram negative rods, meaning that she still has the bacteria in her system. Her doctor said, which we had already surmised, that the continuing temps and blood pressure problems are because of that – her body is still trying to fight. Once the specific gram negative bacteria is isolated – and this could take several days, but should be soon – they will then be able to target it directly. Until then, Emily is getting a “cocktail” of three different antibiotics.

Please pray for Emily – that her body and the antibiotics can start to work together to clear out this bacteria. Also pray for her little emotions – they are ragged right now. Pray for Chrissie – as she was Very Very scared today. It’s pretty scary when you’re looking up the signs of septic shock online and your baby fits all of them. Pray for the doctors and nurses and their continuing wisdom. Pray for Emily’s brothers and sister, who are again making the daily trips from house to house. Pray for Jason, who is able to work from home – yea to his company(!) – for now. And pray for the friends and family who are again rallying to support Emily and her family. Thank you all – and good night!

Emily got her first food tonight - lemon sorbet ice cream!

Emily got her first food tonight – lemon sorbet ice cream!

Update – Day 2 – Thursday

Relaxing.

Relaxing.

– Emily is doing better today – still in the Peds Intensive Care Unit – the doctors are gradually decreasing the dosage of Norepinephrine, the drug that is helping her blood pressure get back to normal. She’s down to 0.5 mcg, the lowest dose before they stop it. Her last two blood pressures were a little on the low side so they aren’t going to stop it just yet but once she’s off of it and her blood pressures remain normal, she should be able to split from the ICU and go down to the regular Peds floor.

– Emily had a 96+-degree temp during the night last night, which isn’t abnormal for someone who’s resting, but considering that her temp yesterday was up to 106 degrees, we decided she was probably the only person here who’s had a ten-degree change in her temperature within 24 hours

A bouncy ladybug balloon!

A bouncy ladybug balloon!


– Emily very badly wants to eat but cannot until she’s off the Norepinephrine. It causes her blood vessels to constrict, in order to increase her blood pressure, and since the vessels also constrict in her intestines and gut, any food would just sit there and cause unnecessary additional problems. This situation requires sneaking bites while turning one’s head to the side or eating in the bathroom. Will be nice to get to the regular floor, for sure.

– She ran a temp again this morning – over 101 – and was shivering. The doctors explained that she may run intermittent temps for a couple of days and that this is really a “good” sign. They explained that a temp means the antibiotics which they are giving her are killing the bacteria in her blood stream, therefore causing the bacteria to break up and release their toxins, which in turn causes her body to fight back with a temp. The body’s natural defense to kill a foreign object, like a virus or bacteria, is to raise it’s body temperature to kill said organism. It makes sense, in a strange sort of way —

– Her initial blood cultures came back within a few hours yesterday, showing a gram negative bacteria in her blood stream – and the doctors confirmed that that quick result indicated a significant amount of bacteria in her little system. No wonder she got so sick, so fast – and thanks to our God for her Momma who listened to that “little voice” telling her that something was wrong with her baby and made the call to take her to be checked – and to the doctors who were able to save her from a potentially very bad outcome.

Her own balloon bouquet and a cuddly monkey!

Her own balloon bouquet and a cuddly monkey!

– She’s had several visitors today – all of which have been willing – if not happy(!) – to don gowns and gloves to visit Emily and Chrissie. Leslie, who knows Emily through Childrens Miracle Network, brought her a ladybug balloon and a talking book, which finally brought a smile to a slightly grumpy (she can’t eat) Emily’s face! She also brought Grammie/me a mocha frappuccino from the coffee shop downstairs, bringing a morning smile to Grammie’s face! Emily got a nice, long visit from her favorite Peds floor nurse, Nicole, who had seen Emily’s admission in the computer and come up to see her. Bapa (Grandpa) came and brought snacks for Chrissie. The Tasitas family, whose daughter plays baseball with Adam, sent Emily a bunch of balloons and a soft, snuggly monkey! And, of course, Chrissie’s friend, and “sister,” Liz, brought the best bubble machine ever!

Again, thank you to all of the friends and family who are rallying around Emily’s family and helping with babysitting and visits and prayers. We will keep you posted —

AND, we cannot leave out our dear Momma, lying in bed with her sick baby, finishing up online traffic school!  Had to be done today, too!!!  Gotta love her --!

AND, we cannot leave out our dear Momma, lying in bed with her sick baby, finishing up online traffic school! Had to be done today, too!!! Gotta love her –!