Tag Archives: blood pressures

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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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.

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!

Busy day in the ICU

Emily decided yesterday that her food of choice is hot dogs! She dives in to them – literally – takes two bites, then is done – but she’s very happy!

So, as you can tell by the title, Emily is still in the Peds ICU – but now she’s only here because they don’t have an empty room on the regular Peds floor – and we are fine with that as the reason for still being here.

Emily’s Aunt Rhoda and Uncle Mike were her first visitors of the day!

Emily’s viral cultures came back positive for Rhinovirus – so Emily seems to have been felled by the virus that causes the common cold.  As Chrissie said, it’s a wake-up call as to how very serious Emily’s low immune system can be.  For everyone else, the virus makes you sniffly and achy and feeling bad for several days – for Emily, she ended up in the ICU.  However, the doctors this morning said that they don’t feel they can attribute all of Emily’s fevers to Rhinovirus – and that that virus shouldn’t have caused the drop in blood pressures that she had – so they are thinking she might have also had a bacteria in her blood stream. For this reason, they are continuing the three antibiotics which she is already on.

Aunt Dawn also popped in to say Hi! and bring some special gifts to Emily.

As of this morning, the plan was that she would be transferred back to the regular Peds floor today, when a room was available.  If she runs any temps today or tomorrow, they will do a CT scan and also consider starting an anti-fungal med, just in case, since the fungal cultures take weeks to come back.  She ran a temp once last night – although it decreased on its own, without Tylenol – and she hasn’t run any more today.  She has been much perkier today and is right now “reading” toy catalogs and climbing all over her bed – or trying to, anyway.

Kathy, a Child Life Specialist, came in to do a special concert for Emily! And Grandpa – aka Bapa – was there, also!

Aunt Renee stopped by, bringing some much-appreciated salads for us, along with some gifts for Emily.

She had a very busy day today!  She was watched – or maybe the correct word should be “entertained!” – by Auntie Jennifer and Grammie, while Momma spent the day with Emily’s brothers and sister at their home-school group.  She had several visitors, all of whom were much-welcomed – and appreciated – by her two-person entertainment crew.  And now she is peacefully – finally – relaxing to sleep, tucked into her bed, next to Momma, while sharing a movie on TV.

To top off an already-full day, a group of employees from Ikea came by the ICU floor today, with their arms stuffed full of stuffed animals, and let Emily pick any one she wanted. She, of course, picked the largest elephant! Auntie Jennifer came late on Sunday and was able to stay over an extra night last night, but had to leave today. Emily – and Chrissie, loved seeing her!

The end of the day —