She fights, yet again.

Evelyn has yet again been admitted to Sacred Heart because of septic-like symptoms. Shortly after starting her antifungal and TPN last night she almost collapsed from severe weakness and pain wracked through her body in waves. It was almost unbearable. She had also received Tylenol as well, so she had a wildly fluctuating temperature that was very hard to assess. We waited a bit to see if things would manifest themselves, since over the last week since being discharged from Seattle her painful reaction to the Lovenox (blood thinner) shot has progressively worsened. Thankfully her pain subsided, only to be replaced by a truer fever. Once at the hospital, her white blood cell count was at 1.7. Blood cultures were started and now we just wait to see if they grow. Remember us.

Homeward Bound

Ev is on her way home! We have much to be thankful for! She still has some discomfort in her line but has learned techniques of how to minimize her pain. She is now only on her antifungal from an antimicrobial standpoint with two weeks to go. She will continue the blood thinner shots for 3 more months accompanied with Benadryl. Thank you all for the prayers and continue to remember us as we endeavor to help Ev to heal the rest of the way at home! Happy Thanksgiving!!

Tuesday 11/21

Ev didn’t make it home today.  It seems the the blood thinner has slowed down healing progress.  The pain in her leg is gone, it was nice to see her able to walk again.  Due to the recent infection and Ev’s medical history, her body seems to be processing pain signals incorrectly.  Doctors want to try to get her body to calm down from the “ramped up” state it is currently in.  They are trying to change around her medicines to help in this regard.

The Pain Doctor also is concerned about her going into her bowel surgery too early.  Today, they started her on a medicine they hope will help her nerves get back on track.  We’ll see how things progress and whether we need to postpone surgery to allow her to recover more.   It’s a balancing act on the timing to allow her to recover but hopefully avoid another major infection and the complications from that.

Hopefully she’ll go home tomorrow or Thursday.  We’ll send another update when she goes home.

Line Is In!

Intervention Radiology was successful in placing a new Hickman line into her upper right collateral vein, much like the line that was in before she got this latest infection. We are so overjoyed that it is in an ideal spot for long-term and perfect for her surgery in Omaha. We are waiting to go back to see her in recovery, hoping she has a smooth time waking and a peaceful night. With this line in her vein that was clotted being gone, we hope her pain there will dissipate. Thanks be to God we avoided a complicated line placement! Thank you for continued prayers!

No Line Yet…

We had plans this morning to have a new line placed by the surgical team around 8:45 am. After several delays we were pulled down to the surgery center around 10:30 only to find that, after speaking with surgery, they would not be able to put in a new line unless it was into a larger vessel. Since all of these vessels in her chest and neck are not options because of previous scarring, Intervention Radiology will be our best bet for placing one. So, we are back up in Evelyn’s room, waiting to hear how their schedule looks. Continue to pray that God will guide the specialists to what will be best long-term for Evee!

Friday Evening

We’ve had a busy afternoon here.  An ultrasound showed that Ev has a clot in her iliac vein around her PICC line.  They will be placing a new line tomorrow morning and starting a heparin drip to try to dissolve the clot.  We hope this is the answer to the pain and are glad that the doctors kept looking for an answer.

Friday Morning 11/17

Evelyn was much the same through the day yesterday. She continues to have pain in her line area, although it seems better under control after switching to a different pain med (Nubaine); however she seems a bit itchier while taking this, but she says she will take the itching over pain. Thankfully she is having a good morning and hasn’t even needed Tylenol since 4 am!Infectious Disease feels like she has made it far enough into treatment that they are willing to change her antibiotic (Daptomycin to Clindamycin) and antifungal (Fluconazole to Micafungin) to less potent ones to give her body relief from the side effects, so they switched these last night. Her liver function blood tests also show her liver is somewhat taxed as well, so hopefully switching them will give relief. She is taking her last few doses of her antibiotic for her UTI. The team will decide in the next day or so if we have made it far enough yet to go ahead and get a permanent line placed. Rheumatology has not rounded on her yet; hopefully sometime today we will see the complete team and see if there is any other treatment that will help her recover.

Back to Seattle

Ev’s inflammation problems seem to not be improving so doctors feel like the combination of meds and/or a rheumatological issue may be causing inflammation in Ev’s veins. Since Seattle Children’s is managing her GI care and the line infection treatment, doctors decided to transfer her to Seattle again. Due to all the meds she is on they will transport her by air again in the next half hour. Hopefully we can eliminate some of her meds in Seattle and get back to normal soon. Thank you for remembering us.

Tuesday 11/14

Evelyn still isnt ready to go home yet; her pain is still too pronounced with small movement even. Her ultrasound and CT scan they did showed nothing abnormal, so doctors are wondering if she had a minor injury to the site on Sunday & it has flared up because of over-amplification of her nervous system. She also still complains of bladder pain as well, so they took another sample to be sure we are clearing the infection. Doctors feel confident the antibiotic she is on should be covering her UTI, so it is most likely that her body is just taking much longer to simmer down after injury. Interesting enough, she seems to improve with Benedryl, so we are looking closely at the pattern of pain & itching, along with medicine to figure out if she is allergic to even this new antibiotic and if this may be causing her to be systemically inflamed. They are looking into seeing if getting off of antibiotics would be worth it; they need to weigh if they really think she had a bacterial infection in her leg (which would require this long drawn-out treatment) versus the itching and pain she seems to be plagued with. Time will tell.

Monday 11/13

We were hoping that Evelyn would make it home today, and for the most part she is feeling much better from a hydration standpoint; however she now has a site of pain in her left leg where the new line is tunneled. This started yesterday morning when she was moving out of bed, and we were hoping that as the day wore on it would get better. Although it seems to have improved somewhat by this morning, it is still painful enough that she did not sleep completely through the night without it bugging her. They did an ultrasound yesterday afternoon to rule out a blood clot or buildup of fluid of some sort, but did not see anything, but could not get a full picture due to dressings on her site. This morning they plan to take her down to have a repeat ultrasound without the dressings. Hopefully we will have this line issue figured out and can go home tomorrow. Thanks for continuing to remember us!

Saturday 11/11

Ev developed a UTI, so we started another antibiotic to cover that bacteria.  The pain in her leg seems better today, we started a low dose of steroids yesterday to help with the pain.  Yesterday, her stomach was very distended and today she is dumping.  So, the Doctors would like her to stay in the hospital likely until Monday to make sure the combination of medicines gets her on the right track.

New Line

Evee has a new tunneled 6 French dual lumen PICC line in her left femoral vein; she went back for the new line at 8:30 last night. Her right thigh had swelled more and more throughout the day, so doctors felt replacing the PICC line would be the best option until the new permanent line can be placed. The radiologist who placed it feels it is in a good size vein, so hopefully she will no longer have restriction issues. The tunneling is under the skin in her thigh so as to bring the exit site of the line out of potential infectious area. She had a rough time waking up in recovery due to the pain her right leg was causing from the old line being pulled out. After several pain medications, more sedation, and Benadryl were given, her pain settled and she had a relatively decent night. She woke up in pain again this morning, but after more meds she is doing better.

So, we are waiting for her to not need strong pain meds before we can go home. Doctors are also looking into whether or not we can switch her to a different antibiotic so that she no longer has systemic itching & inflammation. Thanks for the prayers!

Line Troubles

Ev started having severe pain in her inner thigh on Sunday night, right above where her PICC is in her knee. It seemed to lessen somewhat through the day Monday, but then increased again by evening. On Tuesday (11/7), she was brought in to ER to make sure she had not formed a clot or had a leak in the line. After testing, it looks like the line is working great but the vessel it is in is filled mostly with the line, so it is causing irritation. They admitted her last night in Spokane for pain control as well as for the fact that it will be easier to get her in to place a new line if she is inpatient. Doctors in Seattle want a minimum of one more month with a temporary line before we can get a permanent one. She already has the smallest possible catheter size in place that allows us to draw blood, so our options are limited to a femoral line, which would go into a bit larger vessel in her leg, but doctors do not feel this would be ideal either.

Today (11/8), doctors are wondering if the antibiotic she is on is causing systemic inflammation and phlebitis (irritation of the blood vessel) where the PICC is. Her pain is much, much better today though, with the help of IV Toradol and more consistent Benadryl. We will need a plan for the long term until she is finished with her treatment though. Doctors are trying to converge on whether she needs a new line or if she needs a change of medicine. Hopefully by the end of today there will be a plan. Pray for us, that God will give little Evee the strength she needs for what may lie ahead, but like I told her, we must try to remember that we may see mountains ahead of us that God has no intention of us crossing. He gives strength for the day!

Good News All Around!

Evee is discharged! Her & Kevin are on their way home, hopefully in time for the next dose of antibiotic. Praying for fair weather and good traffic!

We also received news today that her Omaha surgery is officially approved!! Yay!! We are so thankful to have cleared this hurdle for getting her scheduled, now it will be a question of when she will be the healthiest to go through the operation. Because she will have another month and a half of medicine it will most likely be 2018 before this can happen. After this life-threatening set of infections though, we would like to get rid of her use of central lines as soon as possible.

So, we hope that this wraps up the need for writing updates daily for the time being. Evelyn’s care at home will still require extra time and stamina, but the hope is that we can normalize her world as much as possible and get her back to school and church as soon as she is up to it. Please continue to remember us as we move forward through the rest of the healing process. We have surely seen so much benefit of writing these updates as we journeyed through the ups and downs of Evelyn’s sickness, and we will continue to do so with any new developments. Rest assured though, that, often, no news is good news!

Thanks again for all the love, prayers, words of encouragement & help that went into caring for us and the family at home as well! May God guide with His hand all that may be ahead, as He has in the past. Much love from us and Evee!

October 31st

Evelyn had a good day yesterday and last night; she seems to improve bit by bit! She has gotten out of bed several times for a wheelchair ride and even walked to the bathroom for the first time in over a week, if not longer with the leg pain having plagued her! Her last fever was yesterday morning during the procedure, and since it has been over 24 hours, doctors are confident that we will be able to clear this from her body. Infectious Disease doctors are airing on the side of caution with her stents and leg pain and want to do six weeks of antifungal treatment. We plan to go back to Seattle to get a more permanent line placed, most likely outpatient. Hopefully things continue to go in the right direction and she can go home tomorrow! A day at a time for sure!

PICC Placement

Evelyn is in recovery! All went well. They were able to remove the cuff. Doctors decided to put in a temporary PICC line instead of a more permanent line due to her continuing fevers. The plan is to do four to six weeks of antibiotics and antifungal and once she is finished with treatment, we plan to come back for a more permanent line. Her PICC was placed above her right knee, so we are hoping that because this is her painful knee she does not have any increased discomfort, but it was the best we could do. They tried her arm first, but could not get one in.

Evelyn had a good night, with no fevers, so the plan is once she is finished in recovery she will go up to the general floor instead of ICU. Doctors say they would like to see her afebrile and stable before sending her home.

Thank you for continuing to remember us; the outpouring of love and prayers have carried us through.

Relaxing Sunday

We can for sure say she has come around the corner! She had a relaxing day getting better. She is still weak & tired, but is sitting up and doing lap activities. We so enjoyed having some company here for the day and were very encouraged to see Evee smile and laugh! She is scheduled to have her line placed and cuff removed at 8 am tomorrow.

Sunday Morning

Ev slept well through the night with no fevers, but her temp started to increase again this morning, but came down right away with Tylenol. Her symptoms seem to be lessening as far as pain with them; no more total body aches and shaking, but she still gets headachy and dizzy. We are so thankful to see that she is clearly improved from a few days ago. The overall feeling is that she is probably ready to move to the general floor from the ICU, but they would like to get a new central line in first. She is scheduled for first thing tomorrow morning and will likely have the cuff removed at that time as well.

Restful Saturday

Evelyn has had a relatively uneventful Saturday; she has made small improvements. She seems to be interacting more but still took several naps throughout the day. They had planned to take out the central line cuff, until later this afternoon when surgery rounded and felt that it is too risky to remove it while her blood counts are low. They felt that the cuff does not look infected at this time, so we can remove it once she feels better. She still continues to fever & headache, much the same in the last 24 hours, with spikes about 6 hours after Tylenol is given. It is hard to say at this point what is causing this. We want to be optimistic since the temps are brought down to normal with Tylenol, unlike several days ago, so hopefully we are making some progress forward. Still, there remains a question whether a new line on Monday will be a good idea. She has 2 IVs, but this evening both are threatening to go out. So we will begin our evening ritual of re-poking. Our next option may be a scalp vein and if that fails, they may try an artery.

Thankfully, doctors have cancelled many of her labs for the morning except for daily blood cultures. We plug forward with God’s strength & pray His will be done.

Access is Limited

Good morning! Evelyn spiked a fever in the night, complicating the question of what to do about her IV access. She has been poked numerous times since Wednesday when we stopped using her central line and even her small veins for blood draws are disappearing and there are only a few more spots left for possible IVs. She still needs to make it until Monday when they will definitely need access for giving anesthesia, not to mention all of the medications for fighting these infections. We are hoping we won’t need to put in a femoral line since any plastic put in her body while she is fevering has a potential of putting us back to where we started. The longer we can keep her from having plastic in her blood stream, the better. So, we wait until we are absolutely desperate, but we are nearing this threshold. Luckily, they have reduced the amount of medications she is on, since nothing new has grown from cultures in the last few days. They also plan sometime today to remove a “cuff” that is a remnant of her old central line still under her skin that can only be removed under deeper sedation or general anesthesia.

Her central line that was removed Thursday was cultured and grew back yeast (Candida) by yesterday evening. We have been told that yeast is a slower growing organism compared to bacteria, and also takes longer to get rid of.

We also consulted with Rheumatology again this morning about her joint swelling; they feel they have confidently ruled out bacterial infection, but wonder about possible yeast, since it is slow growing. They also wonder about the possibility of an Irritable Bowel Disease/Arthritis connection, so time will tell with that, and medications they would use to treat cannot be given at this point anyway due to the infection.

Doctors are leaning away from this being an auto-immune problem post-infection. Her counts dropped so low over the last few days that they began to wonder if this was the case, but since blood counts have stabilized this morning they are hopeful it is just the infection. We will revisit on Monday after her new line is in and we are a few more days post-infection if we should do further studies of her bone marrow to look for potential causes of her long-term low-level counts. Time will tell!

Good Evening

Evelyn received her blood and looks a much better color. She finally broke her fever this afternoon, but had questionable shivering for a bit that was quelled with Tylenol. We had company here this evening and are happy to see that was able to laugh a little! She still feels pretty weak and cannot sit up at all. There are several tests the hematology doctors would like to do, but the some blood work is time sensitive and only done certain days of the week, so time will tell. She came off of oxygen later this morning and has held good saturations. Her IVs went from 3 to 1, so our evening will be trying to get a new one in, because her many medications require at least 2. Not much will happen over the weekend, as most specialists are only here during the week. She is on the schedule to have a new line placed on Monday first thing in the morning, as long as she is no longer spiking fevers.

We can surely feel the prayers and are carried through with the encouragement. Thank you to everyone for your love and prayers!

O2 for Breakfast

Evelyn rested okay through the night, but spiked a fever and needed pain meds to keep comfortable. This morning she woke up having trouble breathing, clenching up and shaking, so we assumed maybe she was starting to get another fever spike. After pain meds were given she relaxed and fell asleep, and for the first time since her Seattle admit she dipped to 86% O2 sats and was put on oxygen. We will see how the day goes and hope that we can wean.

The Orthopedic Surgeon also rounded and said they reviewed the MRI from Monday and all looks good. This is good and bad news; good because they don’t need to do surgery, bad because there isn’t really a clear answer for her pain.

Speaking of the leg pain, her foot and knee are looking good; no swelling or redness, but the pain will intermittently come back in waves, especially during fever spikes. She is not averse to us moving it like she has been the last 5 months, but it is hard to say how she would do walking, since she has not even sat up for days now.

After rounds, we have learned that her red and white blood cell counts have dropped significantly, so they plan to give her a blood transfusion. Her inflammation markers (CRP = 20+) have increased as well, indicating that she is not necessarily moving in a healing direction from an infectious standpoint. They plan to consult with Rheumatology and Hem/Onc about a possible secondary inflammatory/immune process that may explain why she hasn’t improved despite treatment. This could also explain why her immune system has not been robust in the last year or so, but we wait to hear their thoughts. They plan to keep her in the ICU through the weekend.

Continue to remember us.

Line Removal…

…went well! Was removed under conscious sedation at the ICU bedside, so no need for moving to the surgery center at all. She is still running over 103 fevers despite Tylenol and has small red bumps that have popped up since yesterday on her face & abdomen. The hope is, now that this line is gone, she can continue to improve. Time

will tell. Cultures from her knee aspiration are negative still.

Meanwhile she is comfortable for the most part (aside from those pesky IVs) and tries to rest as much as possible. Sweet Ev has been such a trooper through all of this & we can clearly see how God is strengthening her and us.

I also talked with Omaha, NE this morning about her illness and they strongly feel that we should push for intestinal rehab surgery as soon as we possibly can. She needs to get rid of this TPN dependency and trying this rehab surgery instead of the transplant is our best bet. They said they are “very close” to having all the insurance paperwork in place, but obviously it will be some time before she is totally ready for surgery.

Hoping for a restful and peaceful night.

Line Must Go

Evelyn had a long night in Seattle Children’s ER seeing all of the specialists to help her stabilize. Her fever spiked to 105.5 but then came down again; however, they still wanted to watch her closely at least for the rest of the night, so her & Kev made it up to the ICU floor at 4 am. Orthopedic surgeons are still baffled by how long this pain in her leg has lasted and still have some doubts that it could have been a bacterial infection, since it didn’t rear its head sooner.

So, it could go either way, as the orthopedic surgeon said the only difference in presentation of arthritis vs septic joint is the bacteria that grows in it. We have yet to hear of any positive cultures but those have 5 days total to be a final negative. So we pray for patience.

Meanwhile, the yeast infection that has most likely been the cause of her returning fevers is one that the doctors have stressed is a mean bug and most definitely means this line has got to go. So, she is scheduled for 4 pm this afternoon for removal. She now has 2 peripheral lines, as they needed blood work done last night and the central line is toast, so after poking her again (this time was much smoother! She stayed calmer ☺️) they just kept the IV in. The hope is, if all goes well, she will have a new line placed on Monday after several days of antibiotics & anti-fungal.

Thanks to all and thanks be to God for taking care of us!

Seattle Arrival

Evelyn has landed and is headed to Seattle Children’s. She required oxygen en route because her oxygen saturation dipped into the 80s and her heart rate was in the 160s. She was comfortable though, thankfully. Before she left we heard results that her blood cultures from today grew back yeast, so they started an anti-fungal on the way west. Her central line has now clogged completely & is useless, so a peripheral IV was started before they left after 4 attempts; we are so proud of the team that worked to get it in as it was a very challenging task. Thanks to all for continuing to remember us.