Tag Archives: broviac

And We’re Home (aka Going Out With a Bang!)

So, the last few days were not exactly what we had planned … but we’re home now and Emily is doing great -back to her normal, spunky self.

I’ll give a brief recap, just in case you’re lost as to what happened – perhaps because you haven’t read all the posts, have read the posts but didn’t understand them, read the posts and got completely confused with all the changing information, were taken by complete surprise because you didn’t even know she was having her port removed (sorry Gaby!), or you’re like me and you wait until you have all the information before you pay attention(!).

Thursday morning Emily and I checked in at the UC Davis Children’s Surgery Center  one last time so she could have her port removed. Now that she’s completed her treatment, and she’ll only need one lab draw a month (and possibly one IVIG transfusion a month), it’s best to take the port out to reduce the risk of an infection.

Waiting for surgery

Waiting for surgery

We passed the time visiting with all our beloved doctors and nurses while Emily colored on her sheets. We haven’t been to the surgery center since April, and we don’t expect to go back, so it was fun to see everyone and say goodbye. 

Heading to the Op Room!

Heading to the Op Room!

Dr. Abramson, the surgeon who initially placed her Broviac 2 1/2 years ago, performed the surgery to remove the port. All went well, and she was back in Recovery in just one hour.

sleeping anesthesia away

sleeping anesthesia away

As I waited for Emily to awaken, I looked around the Isolation Room and took it all in. We’ve spent many, many days here, and while I’m not sad to say goodbye, I did feel a bit nostalgic. I watched the colored lines and listened to the different beeps of her vitals being monitored, and I thought, “This is the last time she’ll be hooked up to a monitor, the last time she’ll rest in one of these beds.”  (Ha!)

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She was a bit groggy when she awoke, but she asked for potato chips, so she must not have felt too bad 😉

Her nurses gave her a special card and gift. She doesn’t look excited here, but she really loved it.

Once she had eaten and had a little drink, we said our final  tearful goodbyes and headed out. She couldn’t quite walk on her own, and my arms were full, so she got to be pushed out in one of the new carts (donated by our amazing friend, Kimberly Kaufman at Angels for Hearts).

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We headed straight to the Cancer Center for her monthly IVIG infusion. Our hope is that this was the last one. Now that she’s off treatment, it’s very likely that her body will begin to produce the missing antibodies on its own again, and she will no longer need this extra immunity boost.

All hooked up

Getting all hooked up

She’d had a peripheral line placed in her hand while she was under anesthesia, and she was very careful not to knock or jostle her hand. She just kind of held it out the whole time.

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Her transfusion took about 1 1/2 hours, and she was quiet and restful the whole time. She seemed to still be groggy from the anesthesia, so she watched a few movies and relaxed.

Just as her transfusion finished, only 5 grams of the antibodies, and the nurse was setting up her flush (saline to push the Ig all the way in and to clear the line), she started slouching down in her chair. Then all of a sudden she began shaking and crying out that she was cold. Thinking it was simply cold in the room, I sat in the chair and cuddled her in my lap. But her shaking became more and more violent -so much so that she folded herself into a fetal position and cried out that her back HURT! She kept saying, “I’m cold! I can’t do this!” And then I realized she was burning with fever. Her nurses responded instantly. They hooked her up to watch her vitals – her heart rate shot into the 170s, her blood pressure plummeted to 80/50, and her temp measured at 39.5, or 103.1 -they called in the oncologist team, and they pushed in a bolus of fluid (a fast running, large amount of saline to bring the blood pressure up).

At first everyone thought it might be an allergic reaction, but then one of her docs said, “We’ve seen this before,” and they started sepsis protocol (a typical IVIG reaction might not occur for three days). When the bolus didn’t help, they called 911. Within maybe five minutes of the initial symptoms, the paramedics were at our chair. The nurses all worked together to put in a new peripheral line so they could draw blood to culture -to grow and see if she had an infection. Then we were wheeled onto the ambulance and driven (all the way) across the street to the ER.

Once there she was given antibiotics, Tylenol to bring the fever down, and two more boluses were pushed within one hour. Thankfully this all had the effect they were hoping for. Her blood pressure came back into the normal range and her fever subsided -for the most part; we had to help the fever a bit with cold cloths, but it eventually came back down. She also had a chest xray and nasal swab. They wanted to check for any possible infection.

She was really tired and fell asleep quickly. There is no cell reception in the ER, so I sent out an SOS email, and everyone scrambled to make arrangements. Jason had to stay home with Sophia, who had a little bug (not related to Emily), so my mom and Aunt Gaby came to sit with me. She was definitely being admitted, but they hadn’t decided yet if she should go to the general Peds floor or if she needed to go to ICU. Her heart rate was still really high, and they needed it to come down.

Around 11:00 pm, she had another episode of fever and chills with elevated heart rate, but this time Tylenol fixed everything quickly, and it was decided she didn’t need the extra care from ICU and could go to the general Peds floor.

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Heading upstairs

As we waited in the ER, and then as we got settled into our room on Davis 7, some of our nurses stopped by to say hi. Of course no one wanted to see us in that condition, but it was still good to see them again.

Throughout the night Emily’s heart rate continued to drop back into the normal range again, and she didn’t have any more fevers or chills. By Friday morning she was already feeling better -tired and puny, but better. Her surgeons stopped in to check on her, then the Hem/Onc team came by to share their thoughts.

That’s when we first heard about the spot on her lungs and the possibility that it might be a fungal infection. But after 24 hours (Friday evening) of negative blood cultures, and no more symptoms, the thoughts switched back to an allergic reaction.

There really is no way to definitely know what the spot on her lungs is without invasive procedures, and those bring their own set of risks, including a greater risk of cancer development. So because the cultures remained negative (by Saturday night they were negative for 48 hours), she remained afebrile for at least 24 hours, all her vital signs returned to normal, and because the symptoms started right after receiving IVIG, which is allergenic, and she had had no signs of a fungal infection prior to Thursday (like a cough), her doctors were comfortable sending her home today. When we see Dr. Ducore in a couple weeks, we’ll discuss the possibility of doing another chest xray in a few months to check on that spot.

Emily was thrilled to head home. She wore jewelry, pajamas, and gladiator sandals -on the wrong feet -and carried her baby in matching pj’s, and walked out on her own two feet.

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Thank you all for your prayers, compassionate words, and meals! Maybe now we really are done with all of this …

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We DO like the Port after all!

Well, just like everyone told me, Emily is getting used to the port accesses, and we are liking it much better! She’s had her port accessed (that means a needle was inserted) a few times since my last post a few weeks ago, and each time seems to go a little easier than the last. It’s not roses and rainbows like the Broviac was, but it is better. The Child Life Specialist at UCD is phenomenal and such a help in keeping Emily somewhat cheerfully distracted while being accessed. And the nurses are so patient. Emily has said over and over that it doesn’t hurt a lot, though it does hurt a little, but it’s mostly scary. So we’re working on making it less scary. One thing we changed is the process of applying her EMLA cream (the numbing cream we put on her skin about an hour before she’s poked). I had been applying the cream and putting a piece of Tagederm (clear medical tape) over it to keep it in place. But she HATES that stuff. Another Cancer Kid Mom gave me the suggestion of using Press ‘n Seal instead. I didn’t think it would work, because I didn’t think it would stick to her skin, but it does! It’s like magic! The stuff sticks just enough to keep the cream in place, but it also peels off super easily and doesn’t hurt Emily’s sensitive skin one bit. Yay!! Yay for the encouragement of other moms going through the same thing. So with the accesses getting easier to bear, and the freedom of being tube-free, I am finally feeling good about our decision to switch from Broviac to Port.

Overall Emily has been doing great. She is healthy and growing well. We had been concerned about her walking -if you remember, she had stopped walking for about four months when first sick, then the Vincristine caused joint pain and neuropothy which caused her to walk funny, then she broke her leg … -but she seems to be walking quite normal now. Her feet still sort of slap the floor a bit awkwardly sometimes, but I think it’s working itself on its own, which means she won’t need physical therapy. She still receives IVIG transfusions each month, and I think that’s the reason she hasn’t been sick this year (besides the recent septic shock episode, but that would have happened regardless of how healthy her immune system was). Actually, all five of our children have been blessedly healthy this year, and we’re praying for more of the same this winter season! One odd thing about this Maintenance stage is that Emily’s hair started to grow in very thick and curly earlier this year. But sometime this summer parts of her head seemed to lose hair. She doesn’t have bald patches, but rather very thin and fuzzy patches. She has long strands of curls on the sides of her head and almost no hair in the back. Which actually works out very well, because she can’t see the back and has no idea! The other day she was preening in front of the mirror, pulling on her freshly washed hair, excitedly remarking that it is now as long as Sophia’s hair. Not quite, but in her mind it’s perfect.

Long enough for pigtails!

Long enough for pigtails!

The Port So Far …

The girls after Emily's first bath

The girls after Emily’s first bath


So Emily has had her new port accessed twice now, once at the Cancer Center two weeks ago and then again today, at home. And neither she nor I are sure of what we think so far.

The first access went really well. We put on the numbing cream and waited 30 minutes while it worked its magic, then Rachel, our wonderful Child Life Specialist, distracted Emily with bubbles while the nurse pushed the needle in. Supposedly pushing the needle in is somewhat like pushing a thumbtack into a cork board. With the numbing cream, Emily shouldn’t have felt the needle prick, but she definitely felt the pressure of the push and cried a bit. I’m sure this is a feeling she’ll get used to though. We had a long schedule that day -spinal tap w/intrathecal chemo, IV chemo, and IV antibiotic, so the needle had to be secured into place with gauze and tape. Besides being very protective of the getup, Emily didn’t seem to mind it. At the end of the almost 8 hour day though, she was Not. Happy. to have the tape removed in order to be de-accessed. It took myself, the Child Life Specialist, and two nurses to hold her arms and legs down and keep her body stretched out enough to remove the whole thing. It took forever because the nurse couldn’t just pull the tape off, or the needle would have been yanked out with it, plus Emily was fighting the whole time. It was awful. By the end, I was almost crying with Emily, and the Child Life Specialist had to give me a hug. The whole drive home I berated myself for not realizing this would be a part of having a Port. Emily HATES having the tape removed -it’s the same kind she wore over her Broviac, and we had to remove it twice a week to change her dressing. My consolation though, is she should only need the tape once or twice a month, so we won’t be taking it off twice a week anymore. And I’m sure she’ll get used to it like she got used to the Broviac dressing changes.

Today our Home Health Nurse came out to draw labs, so Emily’s port was accessed a second time. I rubbed the cream on and taped it up about 45 minutes before Anne arrived, and Emily instantly started cringing into herself saying, “I can’t do this. I can’t do this.” Oh my gosh. I cuddled her in my lap and we talked about how brave she is and how lovely it is to be able to take baths (every day!), and how it’s a little scary, but it doesn’t really hurt. When Anne took the tape off, I had to hold Emily down. And then Anne had to clean the skin and insert the needle. Emily cried and cried. But there was no need to tape the needle down, and the blood drew quickly, so Anne finished, de-accessed the port, and put a band-aid on. And after just a bit, Emily was okay again. She looked in my eyes and said it didn’t hurt but it “was very scary.” Then she hopped off my lap and went outside to play!

She really is very, very brave, and such a fighter! Every day I thank God for giving her such a feisty, spunky spirit. But she could use extra prayers over the next month or so, as she gets used to the new procedure. Please pray that she really won’t experience pain and that the accesses and de-accesses will get less and less scary. And really, a little bit of nerves over a lab draw are nothing when compared to what she went through last year!!

The truly lovely thing about having a Port instead of a Broviac, is that Emily can take a bath anytime she wants. And she wants one every day! She and Sophia regularly hop in the “ocean” with their dolls and animals and play for an hour or more. Who needs a pool?

First bath in 19 months!

First bath in 19 months!

The video I’m leaving you with is of Emily getting ready for church last week. She’s enjoying having hair again.

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 —

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 6 – Monday

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– 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 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!

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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.

High-dose Methotrexate

Tuesday marked the beginning of Emily’s interim Maintenance phase. While any progress brings a sense of relief as it moves us closer to the end of treatment, this particular phase of treatment is probably the most frightening we have faced thus far.

Over the next few months, Emily will receive a chemotherapy drug called Methotrexate. She receives a standard dose directly to her spinal fluid and a high dose through her Broviac (the High-dose is 250 times larger than the normal dose). High-dose Methotrexate is extremely poisonous and comes with a long list of risks and side-effects. The drug attacks fast-forming cells in the body and will compromise Emily’s mucus membranes along her GI tract.

High-dose Methotrexate is so toxic to the body that after the initial 24-hour push, a “rescue”, or antidote, is administered to immediately begin counteracting the effects of the drug and rescue normal cells. The rescue won’t make the drug completely non-toxic but without it, Emily’s entire body would be impacted and she would be extremely sick.

Momma, Emily, Auntie Elisabeth ready for a spinal tap

Due to the risks involved and the need for monitoring as the rescue attempts to flush the Methotrexate from Emily’s body, she will stay in the hospital for at least 4 days each time the drug is administered. In between each treatment, she will get at least one week off to rest. Emily is scheduled to receive four such treatments and if all goes well, she could be done in two months. However, she will have to make counts (platelets, ANC, etc) each time before beginning a new treatment and this could prolong the length of the phase.

One of our favorite nurses celebrated her last day before retirement with Emily!

As you can probably imagine, the next few months are going to be incredibly difficult for Emily and the entire Love family. With Emily and Christina spending so much time at the hospital, the older children are in greater need of childcare, love, and support. Aunt Gaby is managing a babysitting list and the meal train continues to help support the family as they are spread thin. Hospitalization also means a greater burden on finances as the family has to get to and from the hospital, pay for parking, and help provide food for Christina while she cares for Emily. A great deal of patience and flexibility is also mandatory to get through this phase as the schedule may be constantly changing and it will be difficult for the family to plan around these hospitalizations.

The greatest burden by far though will be facing the fear of the hardest chemotherapy yet. Monday night was full of anxiety as Emily’s parents prepared for the beginning of the first treatment, knowing they would soon have to trust the medical staff as they put poison into their young child. Only God can provide a peace to handle what lies ahead. On Facebook Tuesday morning, Jason reminded us of this, saying, “Lets remember that God is always with us, even in pain his love is there.”

Beginning her first round of high-dose Methotrexate, “the yellow chemo”

Please join us in praying for God’s peace, healing, and love over the entire Love family. Each of their hearts is burdened by the challenges that lie ahead and each could use a great big Hug from God through all of us. We know that Emily is in God’s more-than capable hands. Praise the Lord for the peace and comfort that comes through faith in Him!

 

Fevers, Antibiotics, and Nutrition, oh my

It was a late night getting admitted to Pediatrics after Christina and Auntie Elisabeth took Emily to the emergency room. There was an Auntie swap, and Aunt Gaby took over, spending the night with momma and Emily in the new double hospital room on the 7th floor.

We got clarification that, despite sharing her room with another patient, Emily is still actually in isolation. Due to her previous MRSA-positive test, Emily will always be considered a possible carrier. However, MRSA is only spread through touch so, while she doesn’t have to stay in a negative pressure room, she is not going to be allowed to leave her room. No play room, no hall-walking. When Emily was immobile this would have been challenge enough, but now that she’s finally regaining some physical strength and enthusiasm, this is going to be an even greater difficulty for our playful Stitch.

Despite the fact that Emily’s temperature had gone down by the time she was checked in at the E.R., Emily was put on on a general antibiotic last night. A second antibiotic, Vancomyacin, was begun this morning just in case the fever was caused by MRSA. Tomorrow, an ethanol lock will be started on her Broviac lumen to flush any possible bacteria out and ensure the lumen is infection free. We don’t mess around when Emily has no immune system of her own!

If Emily’s temperature remains normal and her cultures come back negative, she could be released after 48 hours (tomorrow night). However, in the meantime some of Emily’s other physical conditions have come to the doctors’ attention and raised concerns.

Emily has been eating and drinking less but has had persistent diarrhea. With her low protein levels, sustained facial puffiness, and some vomiting today, the dietician has been consulted and there is discussion of keeping Emily hospitalized while they boost her nutrition intravenously or look at other dietary options. She was given morphine for pain (possibly as a result of her chemotherapy on Tuesday) and Zofran for nausea, in the meantime. Hopefully these will help Emily feel well enough to eat on her own.

Emily received two blood transfusions this morning as scheduled. Getting healthy blood always perks Emily up and visitors today got to see a playful, happy girl. However, it also means that Emily needs more distraction than her restrictive environment allows. If you’re thinking about visiting Emily and Christina this weekend, give Chrissie a call first just to make sure they are still actually there!

Please pray specifically for Emily’s physical body today. The chemotherapy has done a number on all of her systems and the nutritional concerns are really just a small part of that problem. Please pray that her body stays strong, that she’s able to get the nutrition that she desperately needs, and that she be able to get it at home rather than staying in the hospital!

*** The previous post was updated to reflect that Emily’s temperature going into the hospital was 100.5 (not 105). Apparently, 105 would have been a pretty big emergency. This is one of those reasons that having the Auntie without children write the blog might be a bad idea!