Tag Archives: emergency room

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 …

Tigger went thud —

Emily, at Adam's Little League game, sporting her new cast, signed by all of the nurses at the Cancer Center this morning!

Emily, at Adam’s Little League game, sporting her new cast, signed by all of the nurses at the Cancer Center this morning!

Emily has been feeling really good of late – you would never guess, most of the time, that she’s on daily chemo.  She’s been a mini-Tigger on springs, bouncing and climbing and jumping – and it’s been awesome to watch her.  Unfortunately, Tigger sprung too much yesterday and she now has a cast on her leg.

As Chrissie and Emily were leaving the Infusion Room at the U.C. Davis Cancer Center yesterday, after an antibiotic infusion in preparation for her spinal tap today, Emily was jumping up-and-down on some foot-high, decorative concrete blocks that were outside.  Chrissie was holding her hand so that Emily wasn’t putting her full weight on her legs when she jumped but when Emily jumped down onto the grass at the last block, she crumpled to the ground, crying.  At first, Chrissie figured she’d probably just sprained her ankle, because who immediately thinks that their kid just broke their leg(?!), and so she took her home, iced it, and put her down for her nap; however, when Emily woke up, she wouldn’t put any weight on her leg.  There was no swelling or bruising and Emily wasn’t crying but Chrissie was concerned and so we – Chrissie and Grammie – took her to an Urgent Care. The doctor there advised us to take  Emily to the U.C. Davis ER since it had a childrens’ hospital (the Urgent Care wasn’t affiliated with one) and Emily was already being treated there for leukemia.  Unfortunately, we ended up there on one of their busiest nights.

Emily, on her way to the hospital, and enjoying the ride.  She kept saying she was glad to be going to "her hospital" and to see "my doctors."

Emily, on her way to the hospital, and enjoying the ride. She kept saying she was glad to be going to “my hospital” and to see “my doctors.”

Waiting in the Peds Waiting Room.  Emily went from giggling, silly punch-drunk from lack of sleep to intermittently lying down.

Waiting in the Peds Waiting Room. Emily went from giggling, silly punch-drunk from lack of sleep to intermittently lying down.

We got to U.C. Davis about 8:00 pm – and waited in their Pediatrics Waiting room for five hours(!), before finally being ushered into the Peds ER at 1:00 am.  We were in the waiting room long enough for our group to bond with another family who had brought in their two-year-old, who had also fallen – and we were sharing snacks and cell phone videos and I figured pretty soon we’d be inviting each other over for dinners at home!  All the while, Emily was really guarding her left lower leg – not crying but not moving it either.

We're now in the Pediatrics ER room and Emily is still clowning around and silly!  She has the most awesome spirit ---

We’re now in the Pediatrics ER room and Emily is still clowning around and silly! She has the most awesome spirit –

After we got into the ER room and Emily’s leg was checked, they gave her a dose of Tylenol so that they’d be able to straighten her leg for an xray.  Pretty soon, between the Tylenol and the general lack of sleep, she slept through the rest of the ER visit.  Too bad Momma and Grammie couldn’t do the same. Turned out she has a Buckle Fracture of the fibula and tibia – which is a version of a greenstick fracture, which is fairly common in kids.  Their bones are soft so when they break, they break more like a green stick, which bends and doesn’t break all the way through, rather than a dry stick (like an adult’s bone), which snaps all the way across.  Her tibia sort of splintered while her fibula did more of a buckle, where it bent several ways.  Her Oncologist told Chrissie this morning that it most likely occurred because Emily’s bones are weaker due to all of the chemo and steroids.

This speaks for itself ---

This speaks for itself —

Emily slept through the whole casting process.

Emily slept through the whole casting process–

 --- and she continued to sleep afterwards.

— and she continued to sleep afterwards.

Chrissie and I walked out of the ER after 4 am and arrived at Chrissie’s house just before 5 am. Emily slept the whole way home and then nursed and went to bed.  Chrissie got an hour-and-a-half of sleep before getting up, driving her kids to her sister-in-law’s, and then taking Emily back to the Med Center for her already-scheduled spinal tap and chemo infusion.  After picking up her kids this afternoon, she managed another hour-and-a-half of sleep, then picked up Jason from his car pool, they all took Ethan to batting practice, then everyone went to Adam’s Little League game.  Hopefully, they will all get some sleep tonight.

Going home ---

Going home —

Emily is handling it well, so far.  She held court at Adam’s Little League game with her leg spread out straight while playing a game with the other kids.  Chrissie will keep any pain covered for now with some prescribed pain medication but the cast itself will take away most of the pain.  The Ortho doctor who put on the cast said that kids’ bones heal really quickly and that the fibula will straighten out as it heals.  Emily will have the cast for a few weeks and will be followed by the Pediatric Fracture Clinic at U.C. Davis.  Enough cannot be said for the care and the caring that U.C. Davis has given to Emily and for the Childrens’ Miracle Network which is supporting the Cancer Center and allowing Emily’s treatments and care to be financially covered.  Please support them anytime you get the chance.  Also, of course, continue to pray for this family —

Back to the emergency room

Just four days before Emily’s birthday, she has returned to the U.C. Davis Emergency Room and been readmitted to the pediatrics floor. Emily began having minor fevers late Wednesday night and throughout Thursday. The fever spiked to 100.5 on Thursday evening, prompting Christina to call the on-call Oncologist as their protocol requires. Due to Emily’s low ANC (230), any fever or illness could be devastating for Emily right now and the ER doctors decided to admit Emily for further tests and observations.

She moved back in, for a hopefully brief period, late Thursday night and is sharing a hospital room for the first time. While inconvenient for family staying with Emily or trying to visit, it is a good sign that she was not immediately placed in a negative pressure room due to her previous positive-MRSA result. It also means Emily may get to walk around and play more than she did during her last hospital stay; a definite blessing since Emily has been more mobile over the past two weeks then anytime since before her initial diagnosis.

Please pray for Emily today!

  • Pray that the fever (which was, of course, gone by the time she was checked in at the E.R.) remains normal and that lab tests do not reveal anything abnormal. 
  • Please pray for Christina, while living in the hospital is becoming routine, it is hard on a momma with 4 other children who need her at home and nursing staff required to wake Emily up for vitals multiple times throughout the night. 
  • Please also lift up the older Love children who will wake up without their mommy and little sister over the next few days. 

Continued Isolation

Over the past week, doctors have run multiple tests for the signs of the Staph Infection first discovered upon admittance last Monday night. Thus far, only one test has come up positive, the test done in the ER of Emily’s red lumen in her Broviac port. Tests of her blood, skin, and nasal passages have all shown negative results. Unfortunately, the positive test was confirmed as MRSA, a strain of staph bacteria highly resistant to antibiotics. Due to the contagious nature of MRSA, Emily has spent the past week in an isolation room to prevent the spread of any possible MRSA to other patients on the floor.

The doctors and nurses seem confident that Emily is not in danger. Since the first positive result, no other tests, including additional tests of her lumen line, have shown signs of infection. They are however, proceeding to flush her line and finish the ten-day run of her antibiotic just to be safe, during which time, Emily continues to remain in isolation as required by the Center for Infectious Diseases. We have been told that if 3 or more tests of her blood and nasal passages come back negative, the doctors are hopeful to get that mandate reversed. The worse case scenario is that Emily may have to be in an isolation room every time she stays in the hospital for the foreseeable future! Something we would not want, as it means Emily cannot walk the halls like she loves or go to the playroom for activities.

Music Therapy with Daddy

The nurses and volunteers at U.C. Davis have been wonderful in helping Emily stay entertained during this past week. They have brought sterilized toys to her room and even come with armfuls of musical instruments to do Emily’s own session of music therapy! One nurse even let Emily and Christina break out for a few quick rounds around the halls – that’s how certain they are that Emily is not infectious. Emily continues to be adjusting to her time in the hospital. She is eating more, playing more, and even asking to go down for naps! It has been a tough week with Emily returning to the hospital so soon after her first discharge, but we remain positive and strong in the knowledge she is receiving the best care from her doctors and her Father in Heaven.

Updated & Rewind to First Night Home

Emily was readmitted to the hospital last night after her trip to the ER revealed an extremely low white blood cell count (400, when it should be 4,000 to 10,000).

Unfortunately, her new room is not as posh as the one she vacated on Sunday and there is very little room for visitors, including for Grammie to stay overnight. Due to the risk of illness a low white blood cell count leaves her in, Emily is in a negative pressure room – designed to prevent cross-contamination from room to room by keeping contaminated air from flowing out into the hallways. We have been told that Emily can expect to stay in the hospital two or three days as the doctors help improve her blood counts and get her healthy enough to go home again.

Please pray for Emily’s blood counts to elevate to healthy levels so she can return home and continue her treatment. Please also pray that she be protected from further sickness or infections during this time that her body is unable to fight them off. 

In the meantime, I’ve decided to include the original post I was going to update with last night giving a look at Emily’s first night home. We want this blog to be a place people can receive updates on Emily but also to follow the highs and lows of her journey and the many blessings and smiles God will rain down upon all of us as we walk in faith with Him.

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Emily was welcomed home Sunday night with a great deal of love and excitement!

Sophia reintroduced her to all their toys and the boys kept running back in to give her hugs and smiles. For the first time in weeks, Emily sat on the floor and played without yelling for Mommy. She was so excited to wear normal pajamas that she started dressing herself before Christina could even change her diaper!

Christina was also welcomed back home with great enthusiasm. Emily had to share Mommy with her siblings who were very excited to have mom home to kiss them goodnight. Jason also showed his joy at having his wife home by making space to cuddle with her in the recliner while they caught up on a favorite television show.

A playpen was set up in Jason and Christina’s room, as Emily has had a habit of crying throughout the night and wouldn’t do well sharing a room with big sister. But for once, little Stitch went to sleep without a single scream and was sleeping like an angel until Momma and Aunt Elisabeth realized they’d forgotten to give her medication and had to go in to wake her up. Unfortunately, due to nerves or lack of practice, Aunt Elisabeth managed to squirt most of the first dose on Emily’s shirt and get the second dose coughed back up. After a bit of panicking about whether to call the doctor for advice, Emily was put back to bed with the hopes of more success in the morning.

Emily slept well her first night back home and woke in the morning insisting on shoes and a new bow! Sophia was thrilled to hug mom in the morning and said, “I’m glad you could come home. This is a good time forever!”

Indeed, it is a good time forever! Though Emily still insists on being held by momma nearly nonstop, she now has her siblings to help distract and entertain her. Christina and Jason will be adjusting to a lot over the next few weeks in managing Emily’s increased needs for attention and medical care while still loving on the four older children. Prayer is especially needed for Sophia who is still young to fully understand why Mom has to spend so much time with Emily.

Breakfast was a long affair as Christina now has two daughters wanting her full attention. She is incredibly thankful to everyone who has stocked her kitchen with delicious meals and easy to prepare food that makes it a bit easier to manage house & home with only one hand (the other’s always holding Emily). We will continue to ask anyone willing, to participate in the meal train as a way to support the Loves in the weeks ahead. Babysitting will also be kept up as it allows Christina and Jason time to manage the house and be available to get Emily to a long list of medical appointments. She will be going to the hospital three times a week over the next three weeks and at least once a week after that for the next two years. The emergency babysitting list is also critical at this stage, as there are a variety of scenarios that may necessitate Emily being taken back to the E.R. on short notice. If you continue to be willing to serve in this capacity, be in contact with Aunt Gaby or email us at emily.stitch.love@gmail.com.

We thank God that Emily and Christina could come home this weekend and the Love family be reunited. We are blessed and comforted by the way God is providing for the Loves through gifts everyone around them has bestowed. we continue to ask for your prayers as the journey toward a cure for Emily has just begun:

  • Please pray for all the Love children, Ethan, Adam, William, and Sophia, as they learn more about their sister’s illness and how it will impact all of their lives.
  • Please pray for Jason and Christina as they manage their home and give love to all their children. Pray for financial needs to be met and for rest as they deal with the added stress of everything that is changing in their lives.
  • Please pray for peace for everyone touched by Emily’s disease. It is so hard to understand the reasons for a young child to suffer but we have faith the Lord has a purpose and can use this journey to touch lives in amazing ways.
  • Please pray for increased comfort with the medical care Emily needs. Emily refused another round of medication Monday morning as Aunt Elisabeth and Christina struggled to learn the best ways to administer bad-tasting meds to an unhappy little girl.

Back to the ER

I had a new post ready to go all about Emily’s first night home, but it has been superseded by the reality of Emily’s illness.

As I type this, Christina and Grammie are on their way back to the Emergency Room with Emily, who began feeling feverish earlier this evening. After waiting to see if the fever would go down with rest and even going out to buy a new thermometer because the two at home were giving different results, Christina called the on-call Oncologist for advice. His prompt reply was: bring her in.

Thankfully, Grammie and Chrissie had go-bags all set for just such a scenario and after transferring the car-seat and saying goodbye to Daddy, Emily is on her way.

We are hoping the E.R. doctors may just give Emily something to bring down the fever and send her home, but know that there is a good chance Emily could be readmitted to the hospital. Fevers are a big fear for a little girl whose immune system is severely weakened. On top of that danger is the fact that any fever will cause postponements in Emily’s treatment. She is scheduled for a spinal tap and chemotherapy treatment tomorrow morning, which may get delayed if her fever does not improve.

Please pray that God will heal our sweet girl so she can continue getting the treatment her body needs to beat the Leukemia in her blood. Please also pray for Christina and Grammie as they face another long night in the E.R. and for Jason as he takes care of the older children, who may wake to find Momma and little sister gone again.