Recovering 5/28/19

Ev is doing better than yesterday. She still had some low blood pressures that improved with a fluid bolus and no need for medication. They want her to stay in ICU for one more day to watch her pressures. Her blood counts are low but doctors say this is a normal side effect of the anti fungal medication she is on. She was able to get up and go for a walk this morning. The plan is to get a new central line later in the week if the peripheral lines last that long.

Thank you for the continued prayers.

5/27/19

Evelyn’s blood pressures overnight were rocky, dipping low at times, to a point that doctors decided she needed to start a blood pressure med to help bring it up. Her blood pressures seemed to respond to the medication. As the morning progressed, they weened her off of the blood pressure med. Her line was taken out at bedside with sedatives early this afternoon. They hope to make it a day or two before placing a new central line unless maintaining peripheral IV access becomes a problem. God’s will be done.

Thank you all for the prayers.

Back In 5/26/19

Evelyn was admitted into the hospital in Delaware with septic shock this evening. She started with a low grade fever as soon as we arrived in Maryland on a trip to see family last night. As the day progressed her fever worsened, so she was brought in to AI Dupont Children’s Hospital. Due to low blood pressures she was sent to the ICU. Thankfully, her pressures have improved some since getting admitted. Preliminary results show yeast is growing in her blood stream. She is feeling relatively well considering what’s going on.

Remember to pray God’s will be done with our little Ev.

Home!

Evelyn was discharged from the hospital last night (5/16), and although she has some recovering yet to do, she is feeling much better! We are thankful this hospital stay was relatively minor compared to other times and that she was able to keep her line. It’s a good reminder for us that we don’t know what is ahead and need to leave all in God’s hands while trying our best to do what we have been asked.

Thank you for the continued prayers and love. We are such fortunate people!

Update 5/15/19

Ev is feeling much better. Doctors were able to pinpoint the bacteria that grew; it seems to be a relatively easy one to clear from her line, so we are remaining hopeful that the line can be salvaged and not pulled. Her blood counts were still low today, so she will stay inpatient until we see them rise again. Her blood pressure has stabilized again as well. She is full of energy this evening and it is so good to see our Ev back!

Thank you all for your love, prayers, and words of encouragement. We are so grateful for them! Continue to remember us.

May 13, 2019 Update

It has been quite awhile since we have updated on Miss Ev, mostly because there hasn’t been much to report, other than the slow progress uphill from her illness in February & March. It took her many, many weeks to get to a point where she could begin tube feedings into her stomach, and once this was started, it was still very slow advancement. It took us about a month to get 1/3 of her total needs comfortably settled into her gut routine, but then recently she got sick again with a significant cold virus that had her back to square-one again. So, for now, she continues to get full TPN and will not have formula through the g-tube until we see good signs that she is maintaining her electrolytes well. It doesn’t seem surprising that Ev’s old ways are still with us & we have fallen into an accepting routine that is familiar. We even took a trip to the East Coast in April for a quick weekend trip and it thankfully went very well!

Unfortunately, Ev took a turn for the worst. She started feeling icky early yesterday morning and ran a fever throughout the day yesterday, despite ibuprofen & Tylenol. She was admitted to the hospital and today, blood cultures are positive for a bacteria; it is yet too soon to tell which specific bacteria it is and if it will clear the central line with antibiotics. We will attempt to treat her line with antibiotics for now.

Remember us here, that God will continue to guide and give strength.

Update 3/8/19

It’s been about 3.5 weeks since Evelyn first started having gut problems and though she continues to do okay from a hydration standpoint, she is still in the nasty throws of one of her classic gut “episodes,” and we are yet thankful to have her central line still in place. She’s been unable to eat by mouth nor have we started any tube feedings; we will wait until she shows signs of tapering off from this episode.

This week at clinic we discussed our plan for going forward. Dr. Mercer believes it will take time to sort out her guts and try to find the best management plan. This will involve trying methods that didn’t work in the past in hopes that the recent surgeries have helped her motility. He also hopes that new techniques currently in the FDA approval process may be able to help her. He thinks some of these may be available in the next 1-2 years. The doctor recommended that we stay as close as possible to Omaha to allow them to manage her care closely. It is certainly all in God’s hands, but we are thoroughly thankful to have a team around us that is willing to try and that will advocate for Evee. Thanks be to God for all things!

Thank you to everyone for all of your thoughts, love, prayers, words of encouragement and the visits! They have kept our home warm during these cold months. Please continue to remember us, for it is much needed, especially as we make decisions to finalize our settling here. May God continue to guide and keep us all in His care.

Home Again 2/22/19

The second try at restarting formula wasn’t successful, so the Doctors decided to send Evelyn home on TPN again. She was able to make it home this evening. We will go back to the old routine of TPN and IV hydration while she tries to get over this episode of dumping. Hopefully, her guts will recover soon so that we can transition back to formula and food. With this latest episode, it has become apparent that Evelyn will continue to need close care here in Omaha for some time.

Thank you for all the thoughts and prayers and please continue as we move forward. We want to trust that God is yet guiding and has a plan for Miss Ev and the whole family.

2/20/19

As the week progresses, Evelyn is much the same as the weekend: hydrated but still putting out way too much from her ostomy. On Monday evening, formula was started at a slow rate and kept there through the day yesterday; however, it had to be stopped again in the middle of the night last night because her output was pushing 2 liters for that 24 hr period. This morning, Dr Mercer would like to start a trial of doing 30 mL/hr through the g-tube and slowing the IV fluids, to be sure that the high stool output isn’t also from being over-hydrated. If she doesn’t do well, she will be started on TPN again and sent home to recover. He has no guess yet as to why she has had this episode, but we’re hoping with time we can establish a pattern.

Continue in prayer.

2/17/19

Evelyn has a central line in her right femoral vein (leg) and has recovered enough that she was moved to the general floor yesterday. All viral tests on her stool have come back negative. Time will tell if there are any other things factoring in. Meanwhile, her output has slowed enough that her electrolytes are more stable, but she still requires replacement fluids around the clock. Her spirits are good and she feels relatively well, eating the occasional popsicle and pretzel. When her stool output slows more, doctors would like to try working her back onto g-tube feeds as she tolerates. God’s will be done. Please continue to remember us.

2/15/19 Hospital Stay

We have so much to be thankful for as we enter the second month of Ev having freedom from her central line. She has had the opportunity to swim twice since it was removed and has maintained her weight beautifully, beyond our expectations! Despite two rounds of antibiotics due to strep throat she seemed to sail through almost anything. Dr Mercer maintained a cautiously optimistic attitude at her appointment this week, saying as time passes we can let ourselves relax, but for now we still don’t exactly know what caused her gut issues in the first place. Her guts are still being tried. So, we have anxiously awaited the time that she would contract her first real test on her gut…and it seems to have arrived this week.

She started with a cold at the end of last week, slowly dragging her into its grips of congestion with sneezes and coughs, but, although she had minor blahs at the beginning of the week, she seemed to be recovering. As the week has progressed, the second, all-too-familiar phase of her body’s reaction to illnesses has set in…slow dehydration. Over the last couple of days, her rate of her feeding pump was turned down and she was switched to only Pedialyte through her g-tube, while her stool output increased and she slowly became drained.

Early this afternoon, we finally brought her into the hospital to help her catch back up. She was admitted to the ICU floor due to bed shortages on the regular floor. As it turns out, it was for the best, for after numerous attempts with IV specialists and ultrasound, they were unable to get a regular peripheral IV in; however, they did draw enough blood to see that she is dehydrated enough that they feel she definitely needs a means to get fluids in, as well as check her hydration status going forward. So, she is in Intervention Radiology to get a new central line placed and will spend the night in the ICU.

Meanwhile she is our trooper, ever in relatively good spirits, miffing the doctors with her stable demeanor, while her blood yet tells another story. Oh, Ev!

Please remember us here, that God will continue to guide all things.

Surprise! 1/2/2019

It’s out!! At the clinic today, Dr Mercer decided that since Ev has been doing so well and gaining weight with gusto, he felt the risk of keeping her central line in was greater than the benefit of keeping it. So, he simply just pulled it out right there in the exam room!! Hooray!! To think that it has been such a lifeline for her for so long, yet has limited so many things for her in her life… this comes with mixed feelings for us, for sure. The tears of joy and hugs we have shared at home are comforting and surreal. This came so suddenly, yet in a very complete and final way, that soon we began to revel in her new freedom: she reminded us that the alcohol wipes, dressing-change kits, flushes, needles, syringes, end caps, oh that whole, big ol’ drawer full of IV supplies can GO; we reminded her that she can shower with no worries of a wet line to which she beamed; she can now swim in a pool without being taped up over a large patch of her body only to see it all unravel within a few, short minutes… and so much more! No more risk for infection, no more weekly lab draws (she will have a recheck in a month), no more fears of sudden sickness at any moment… Wow…

As we celebrate our family’s, and especially Ev’s, new-found freedom, we are so grateful for the undeserving love, prayers and strength we have received from across the nation and even the world. Please continue to remember us as we take steps forward without our usual “crutch” and discover Evee’s health from a new perspective. Praise God from Whom all blessings flow! Praise Him all creatures here below! Praise Him above, ye Heavenly Host! Praise Father, Son and Holy Ghost!

Jan. 1st, 2019

Things are going well for Ev! We have finally met the 12-week milestone since surgery, and it seems surreal to absorb how fast time has flown. Evee has been feeling pretty good! Within the last few weeks, she has slowly weaned off more & more IV nutrition, transitioning to simple IV fluids and tapering to less & less need until finally now, she hasn’t needed IV fluids for the past week! She is tolerating her formula/electrolytes by gtube very well, but while we continue this transition, she still has restrained from eating too much by mouth; she is mostly limited to bland and easy-to-digest foods. We are optimistic and hopeful that she will eventually be able to eat more orally, but more importantly for now we are trying to rely less on her central IV and work toward removing it for good… For good… It feels hard to say this, since she has really relied on one most of her life… And so, as we slowly begin to cautiously rejoice in her progress, we are grateful for the steps forward that she has made. Please continue to remember our family here in Omaha, as we make these small, little steps toward a happy & healthy Evee!

Home 12/5/18

Evelyn has been discharged! She received a new line yesterday into her Right subclavian. We were a bit nervous since this area tends to be a tender area for her, but with a smaller, more flexible line, she seems to be tolerating it fine. She is close to full feeds per g-tube, but still on TPN to help her through this transition to be sure she is ready for the big jump to no IV use. We have a few weeks yet of IV fluids and antibiotics and antifungals to go. Thank you for the thoughts, prayers and love. Continue to remember us as we press forward with our new steps on Ev’s journey!

8 Weeks Out 11/30/18

Well, a lot has happened in the last month for Evelyn! She has made great progress tolerating her g-tube feeds. With two steps forward most weeks and a few pauses here and there, she has slowly worked up to about half of what she will need per day and is gradually tapering off of her IV nutrients. She had a slight set-back over the Thanksgiving weekend, but we figured it was a small blip in the radar and things would soon be on their way again, which was true. We found at her Wednesday appointment this week that her j-tube had backtracked itself into her stomach area and was no longer feeding into the small intestine, and since she seems to be tolerating the food in her stomach, the g-j-tube can now be replaced by just a g-tube.

We wish we could end this post on a positive note (so sorry to wait until disaster strikes all the time!) However, Evelyn did start to run a fever two nights ago and was admitted to Nebraska Medical Center last night. Today, blood cultures have grown back indicating a blood infection with several bugs growing, one of which is Candida (Yeast again!). So, the line must be pulled. They hope to get through the weekend with just peripheral IVs and put a new line in at the beginning of next week. Meanwhile, she is comfortable and stable; we feel we caught the infection quickly, so she is not as critically septic as the last few times, and having a semi-functioning stomach has also helped to reduce how much fluids we need to run through the line, minimizing her side effects.

Please remember us in your prayers as we endeavor to take each hour as it comes. We can certainly believe God has His hand in all things for us and do not doubt that He will continue to care for His children. Thank you for all.

Five Weeks Post-Surgery

It’s so hard to believe how fast time can fly, but we are thankful to have made it through the hardest part of Ev’s healing. She is making small steps forward, sometimes so small we cannot detect until days later that we surely have! Her g-tube output slowly resided several weeks ago, so she started school for half-days, and then slowly transitioned to full days. About two weeks ago she was given the okay to try drinking small amounts of clear fluids, then within a week she was tasting foods that were a bit harder to digest. This week she started formula through the j-tube into her intestine again, at 5 mLs an hour. Within several days we felt comfortable to bump her up in increments to 15 mLs an hour; however, this seemed to be too quickly, for her g-tube started to have high output again, so she was given a break for day and restarted again.

We are hoping that this slow progress forward will continue, as we are still in a period of recovery; Dr Mercer told us that it can take up to 12 weeks post-surgery for things to work congruently with each other, so we pray for patience and watch. He is optimistic with the progress she’s made, but we won’t completely know that she is on the road to having her central line removed until she is totally healed. Her intestines will need time to manifest themselves.

Thank you to everyone for their love and prayers, we are ever thankful! We continue to feel them and continue to need them.

10/17/18

Being home as a family has been a wonderful breath of fresh air for us as Evelyn settles in and the routines take their course again. She has slowly gained strength and stamina, enough so that we have ventured out and about a few times on short excursions. Evelyn’s g-tube output hasn’t completely slowed down as much as we’d like, but her ostomy output has picked up more and more each day, and her stomach pain and pressure have slowly been fading, showing us that things do seem to be resolving. Her appetite is slowly returning as well, and we are happy to be able to let her at least have tastes of things that can easily be digested. In clinic today, Dr Mercer agreed she may have small amounts of things to drink. We will be seeing the team weekly to make our small steps forward with waking Evee’s digestive system. Hopefully, as she regains her energy, she will return to school and church in the next few week or so.

Lots of gratefulness from this busy household! Remember us still.

10/11/18

Evelyn is home!! Her labs looked better today so the team felt comfortable with allowing her to go home. She continues to have high output from her g-tube, but her ostomy has picked up in amounts out as well, so we’re hoping this means things are getting more coordinated. Thank you for remembering us during her stay in the hospital; we so looked forward to the notes of encouragement and all the love that has been shown. As we continue on this journey of healing completely at home, please continue the prayers! We will update as she meets each milestone, and we hope that by Thanksgiving-time she will be eating!

10/10/2018

The past few days we have been waiting for Ev’s stomach to wake up and start emptying, but it doesn’t seem to be improving. Dr Mercer reassured us that he is not concerned yet and it may take another week or so, especially since her stomach was repositioned. In the meantime, her stomach doesn’t feel good, a fairly constant sick feeling. After days of losing extra fluid from her stomach, this morning her labs were a little off, showing some dehydration, so doctors hope to correct her fluids and maybe get her home tomorrow or the next day to continue recovery there. Feeds have stopped for now until her whole digestive system is working better and she doesn’t feel so full.

Thank you all for the continued prayers, we can surely feel them!

10/8/18

Doctors rounded today remaining optimistic that given time and getting off of pain meds, Evelyn’s stomach will be able to digest as it should. We are working on switching her medications to her j-tube instead of IV and finishing the course of antibiotics. We hope to aim for home on Wednesday and work on advancing feeds next week or the week after, as she tolerates.

Thanks for all & continue to remember us here.

10/7/18

Evelyn’s day on Friday was an okay day; she did much the same as the day before, but she did not make any progress with advancing feeds. Her ostomy was more active, a good sign of healthy motility; however, her stomach through the night Friday and into Saturday didn’t seem to want to empty as it should, so buildup of fluid would increase pain in her abdomen. By yesterday afternoon, she needed feeds to be stopped and for her stomach to be emptied every few hours to help eliminate the pressure. Doctors feel that if by Monday she has not improved, she will need a barium study to see why this is happening. We will see what time brings.

Continue to remember us as we endeavor to leave all in God’s hands.

10/4/18

Evelyn had a restful day yesterday. After her blood transfusion she felt much better and slept well through the night. Today, she started an antibiotic to help an accumulating infection in her incision. Doctors are happy with her progress, so they have started formula through her j-tube at 5 mLs an hour to see how she does! We’re thankful for the progress and hope to continue to make steps in the right direction. Thank you for the thoughts and prayers along the way.

10/3/18

Ev had a good day yesterday; she was up and about most of the morning and afternoon, doing crafts & walking to the playroom. After all of this extra, new activity, her hemoglobin dipped more overnight, so she is getting another blood transfusion today. This will hopefully give her a bit more energy and help keep her oxygen from desatting at night. Small steps forward! We hope she can be discharged from the hospital early next week if all goes well.

Thank you for the thoughts and prayers.