Ev made it home today! She turned the corner from an infection standpoint on Sunday and since her bacterial blood cultures came back negative, doctors stopped her IV antibiotics, but kept the antifungals going. Yesterday her outputs slowed and she was doing even better today, so they sent her home on full TPN needs. We’re so thankful to have her home again! Thanks for the love and prayers.
Well, it seems our recent run of good absorption and avoidance of the hospital (except for the recent j-tube closure, which is thankfully doing fabulous) is over. We were so optimistic that after a year and a half of easy ups and downs while she’s been on the Gattex medication, Evelyn’s bouts of pseudo obstruction were mostly going to require hydration boluses here and there. Up to this point they have been much more manageable and minor compared to years past. She has not needed hydration management in the hospital since she started the Gattex (Sept 2019), except for in August 2020 when we were transitioning her back onto TPN again and required hospitalization for that.
But, this last weekend was the end of that run. We’re still not sure yet what has triggered her guts to turn so upside down, but Saturday and Sunday were painful and dehydrating days of replacement fluids at home. By Monday evening, Evelyn’s guts seemed to have simmered down somewhat, but nonetheless we thought she should be monitored overnight in the hospital to be sure we had gotten things back on track. She appeared to have turned a corner by Tuesday evening. Her stool output decreased significantly throughout the day as we hung out in her hospital room, the color returned to her cheeks and she seemed on the mend. So, after a short stint in the hospital, we pushed for home, arriving in time to see another uptick in outputs almost immediately.
Overnight Tuesday night, things became much worse for Evelyn than before, almost doubling the amount of fluid her body was dumping in a very short amount of time. We brought her back into the hospital on Wednesday to monitor her outputs and labs and get her back on track yet again. Despite the large amounts of fluid she was losing per day her belly pain was mostly gone, her energy levels were pretty fair and she was in a good mood, so we can thank God for this.
Yesterday, her blood pressure dropped and labs indicated a possible infection. Thankfully, the doctors have been very proactive and have started antibiotics and antifungals to fight off anything that maybe growing while we wait on blood cultures.
We’re bummed to think that perhaps Ev’s intestines still do have a mind of their own and we are certainly reminded yet again that so much is not in our control; God is the one guiding and He has allowed this little trial to help us remain small. Please say a little prayer for us that God will give strength for each moment.
Evelyn is in recovery now, all went well and as expected. She will have some healing to do, but it shouldn’t be too long of a recovery. We hope to bring her home this afternoon. We’re hopeful this should close it permanently, as long as the stitches hold while she heals. Thank you for your thoughts and prayers; they surely carry us through these little moments when we step back into the medical world. Thanks be to God for all things!
We’re all checked in for surgery. They’ll be coming in a few minutes to bring her to the procedure room.
Doctor plans to do imaging with a catheter and contrast to see how deep and open the fistula is. He’ll then bore a hole through the fistula to remove scar tissue. He’ll then stitch the hole closed along the muscle layer and allow her body to do the rest of the healing. They expect 50 minutes from start to finish.
Thank you for the words of encouragement and prayers. We’ll update as soon as she’s done.
Evee has done relatively well through this past fall and winter, even weathered Covid-19 with the rest of the family during Thanksgiving. She is back to square one, in Evelyn-terms, and we’re so grateful it was actually one of the easier storms to get through!
That said, she does have one little conundrum that doesn’t seem to want to heal, and that is her j-tube site that we opened about a year ago. As a reminder, an access point (fistula) was created in her abdomen to see if we could feed her through a new tube by bypassing the upper part of her small intestine and this would perhaps allow her to come off of IV nutrition dependency more effectively than through her g-tube (in her stomach). Unfortunately, her j-site became very inflamed and irritated from any catheter or tube we tried, so we opted last summer to take it out and hope that the hole would heal closed. For the most part, it did, but she continues to this day to have intermittent stooling and weeping from the site, as if it has sections inside that are not healing completely.
So, sometime in October, we began the process of getting her scheduled to have it surgically closed. After our Covid bout and regrouping with the surgeon, we are finally planning tomorrow (Wed 2/17/21) to have it done. They hope to bore a hole down to the abdominal wall and stitch it shut there and allow it to heal from the inside out.
We’re hopeful it will be a quick, straight-forward procedure. Please remember us in your prayers that all will be done as God wills. Thank you for continuing to think of us here.
Since the last post in July, Evee’s J-Tube site reopened completely and her GI motility has been an issue causing her to have a lot of drainage out of her J-tube site. Over the past few weeks, she started losing weight and had trouble maintaining her electrolyte levels. By Monday, it had progressed beyond the point that we could handle at home, so she was admitted to the University of Minnesota Children’s Hospital. They were able to stabilize her electrolytes and restart her on TPN to allow her to have a gut rest. We’re hopeful that the j-tube site will close again and heal up for good this time. She was able to come home this evening and is feeling well after getting the calories and nutrition she needs. As disappointing as it is to need TPN again, it’s also a relief after many roller-coaster days of trying to keep her guts moving.
We pray that God will continue to lead and guide in her medical care. Continue to remember us here.
Hello! An update from the Ev perspective:
In March, Evee had healed enough from her surgery to start night-time drips through her new j-tube; however, each time we tried to start, she didn’t seem to tolerate it. At her next appointment, Dr Mercer figured either she needed more time to heal, or her intestines had not restarted in the right mode, so we decided as a team to not rush it. Thankfully, she slowly started eating orally and continued doing quite well, eating and drinking pretty much anything she wanted while tapering off of IV dependence. Thankfully, she slowly needed less and less TPN, then less hydration, and has been totally off of IV fluids for nearly two months now! She’s had minor setbacks, but has recovered with just electrolyte supplement through her g-tube.
The only negative thing we can say has been that Evee’s j-tube site slowly reddened more and more, became increasingly uncomfortable and leaked quite often. We tried several rounds of oral antibiotics as well as creams, but they did not help. She had the tube switched out to see if perhaps putting in a fresh tube without any stitches would help the infection/irritation. Over the next week, it didn’t improve. We began wondering about trying a different tubing material and it seemed to help; however, the site continued to leak so much and so often that we decided that since it hasn’t been as useful as we’d hoped, we might as well pull it out completely and let it seal up. It has been a rollercoaster of closing and reopening again with the tides of how her bowels are doing, but overall we’re thankful it is no longer infected and seems to be slowly but surely heading in the right direction.
Some exciting news: we have moved again! Because we came to a point in her care that we realized that we have done all we can to help her from a physical standpoint besides treating symptoms, it became clear that our time in Omaha was drawing to a close. Ev has always ridden a delicate balance, and we will have to continue to ride the ups and downs as they come, taking it day by day.
With this in mind, we realized we also longed to be with family and friends again, so our family moved to the Minneapolis area in late May, where we’ll continue to receive remote-but-still-close care from Omaha, have a Children’s hospital close by for acute care, and also nourish the social and spiritual aspects of our family life. We’re so grateful to have had our time in Nebraska; we’ve grown closer as a family, met new friends that we might never have met, and learned more about Ev in that we can be confident we have tried our utmost to make her quality of life as best it can be. She may not have the same day to day life as others, but her day to day has become much more tolerable and has improved greatly. As we begin yet a new chapter in our lives, please continue to remember us in your prayers, that God will continue to bless and keep us all in His care!
Today in clinic, Evelyn had the surgery drain removed! We’re thankful she has recovered enough to have reached this milestone. Dr Mercer is somewhat pleasantly surprised at how quickly she has healed after the “mess” she had in her abdomen. He felt okay about starting a teaspoon an hour through the j-tube at night, as tolerated. We are excited to move forward and watch in the next few months how the j-tube will serve us and whether or not it will reduce her IV dependency. She will continue on the Gattex as well. We’ll see what time brings!
Thank you all for the love, words of encouragement and prayers; we certainly could not have done this alone, without them. Continue to remember us here, that we may accept all that God has planned for her and us.
Evee is home! We’re so grateful to have this latest ride over-with, hoping the whole idea of the j-tube being in place will help her in the long run. May God’s will be done. Thanks again for all of the love and prayers on our behalf! Please continue to remember us.
Every day is a better day than the last; working towards home is looking like a reality for Ev. Her drain is putting out less each day and her strength, energy and stamina increases with each walk she takes. We still are waiting for her guts to wake up, but with pain meds lessening she is beginning to feel more signs of it waking again, a time we will have to “get through” as it often doesn’t feel too good, but is a necessary step in the healing process. There is talk to maybe let her go home with the drain in place tomorrow, as she is finally down to only TPN, antibiotics and antifungals hanging on the IV pole! We’ll see what the morning brings.
Thank you all for the love and prayers.
Wednesday went well, other than needing a unit of blood because her counts had dropped overnight. She needed an extra IV for this, but she was a trooper and took it with stride. Her ostomy has quieted down again, but this is to be expected after this type of surgery. She has made so much forward progress with healing; going on walks, doing activities, but is also resting well. Her drain output has also slowed which is good. Doctors are pleased at the way things are going and we cannot be more thankful.
Thanks again for all the love and prayers.
Evelyn is feeling much better today. Even last night it was wonderful to see the swelling in her abdomen was greatly reduced and she was up and walking today, sitting for awhile in the playroom. We had to convince her to rest this afternoon so as not to push herself too quickly. It is great to see her healing and moving in the right direction. Dr Mercer expects that her drain should slow down in output over 4-5 days and her digestion should slowly resume over this time as well. Already, her appetite is back somewhat and her ostomy has also put out more than it has in days. Little steps forward!
Thank you to everyone for your love, prayers, gifts and words of encouragement during this latest set-back. We’re hoping for a smooth, steady recovery, as God wills.
Continue to remember us.
Evelyn is now in recovery and all went well. Dr Mercer said he theorizes that while placing the j-tube a week ago, the first poke into the space may have over shot, allowing a small leakage into the back area of her abdomen. The drain that was placed was not effective for the area, so she now has a new, longer drain that will flush out any leftover saline that may be left. He placed contrast up and down the inside of her bowel and manipulated it to make sure the leak is gone. He was unable to find anywhere that continues to leak, so it seems that any perforation that was present is healed. This is a huge relief! He also determined that the j-tube balloon was also likely causing obstruction, so he removed it and replaced it with a tiny tube that has no balloon and is stitched down on the outside.
In the end, he was glad that we went ahead with this surgery, as the leakage would likely have been a long uphill climb to recovery and her j-tube is fit custom for her.
She will most likely need rest for 7-10 days to recover in the hospital. We’re so thankful to have answers and grateful for the love, thoughts and prayers on our behalf.
Evelyn doesn’t seem to making any progress forward toward healing, so Dr Mercer decided it is time to get more answers for what is going on inside her abdomen. He plans to open up her abdomen, cut out adhesions and scar tissue and wash it out while also assessing the bowel. Depending on what he finds will determine how long the surgery will be. So, we are currently waiting in pre-op, so surgery will be sometime this morning.
Please remember us in your prayers.
Evelyn’s night was still painful, and her drain yet again slowed and doesn’t seem to be relieving as it should. A CT scan they did during the procedure yesterday showed that the space in her abdomen looks pretty much the same as it did before, so we are not making any headway with healing. Doctors rounded this morning and wanted to watch for another 24 hours before considering opening up her abdomen and cleaning it out and looking for/repairing any bowel perforations. Please continue to remember us in prayer. God has taken such good care of us and we are so grateful for the physical helping hands who have and plan to come be with us during this time.
IR was able to replace the drain tube with a larger tube and double check the balloon in the j-tube that it isn’t blocking her intestine. It looks good and her abdominal discomfort has lessened. We are relieved that she is doing much better than this morning and grateful she has some of her spunk back. We are also so grateful for the continued love and prayers on our behalf!
Evelyn’s stomach distention has rebounded this morning with little drainage from the tube, so they plan to put her out again in the procedure room to use intervention radiology to reposition and/or replace the drain tube. Her fluid Ins and Outs went out of balance overnight, so they are concerned they havent been reaching the full pocket of fluid that may be leaking into her abdomen. We’re unsure the extent of what they’ll be able to do, but hoping they can find the best outlet for the fluid and relieve the pressure. Thankfully, she was up and able to walk around a bit. From an infection standpoint, it looks like her labs are making progress in the right direction.
We’ll send an update later this afternoon/evening once her procedure is over and we have feedback from the doctor. Thanks for the love and prayers.
Evelyn is feeling a bit more relieved pressure-wise, for which we are grateful. The tube continues to drain. Her two insertion sites (j-tube and drain) are most of her complaints now, but the pain is managed well. The culture of the fluid sent last night came back with bacteria and yeast, so they will be adding in an antifungal med along with the antibiotic. They are pretty confident the fluid is gut content, so she most likely has a perforation somewhere along her intestine. Because she ran a fever and her blood counts look suspect, they are wondering if she might have been on the brink of a systemic infection, so they are leaning towards treating her with medicine for a full two weeks. Her line will also be cultured to make sure it remains uncontaminated. Time will tell if we ever find an answer to why and when this happened, but we’re hoping her gut can heal on its own, with best case scenario being that she has the drain removed in a couple weeks. Doctor says to expect to stay inpatient at least until Monday to get a feel for how serious the perforation is.
Thank you to all for the continued love, prayers and words of encouragement. This little hiccup has reminded us yet again how little strength we really have of our own. May God continue to guide and be our strength and stay.
The drain has successfully been placed under CT scan. They were able to remove some air and some fluid that they have sent for culture. They plan to leave the drain in for at least a few days. They also adjusted the water level in the j-tube balloon to be sure it is secure. She is more comfortable now and we’re hoping for a restful night.
Evelyn was directly admitted to the hospital this morning. Since the procedure on Monday she has battled with pain and has has not bounced back as expected. She ran a low grade fever last night and is retaining fluids throughout her body. Most of her pain has been due to pressure and distention that seems to only worsen. The doctors expected her to have some discomfort around the j-tube insertion site, but ongoing pain had them concerned.
This afternoon, she had a CT scan done that showed pockets of what looks like air in her abdominal cavity, this has them concerned. Doctors are wondering about a perforation somewhere in her bowel, but can’t be sure until a drain is placed and we narrow down where it’s coming from. It is such a relief to know why she is hurting so bad and we are praying God’s will be done, that she can find relief from the pain soon.
They plan to do a procedure this evening to place a drain into the cavity and to check the J tube that was placed. She is also starting antibiotics to try to keep ahead of infection. The doctor is hoping that if there is a perforation that her bowel can heal on its own. Time will tell.
Please remember us here, that God will give strength for each moment and decision ahead.
Evelyn went in this morning to get her j-tube placed and all went well. She now has an 18 cm tube inserted through the abdominal wall just below her g-tube. We hope to start slowly feeding formula through it in the next few days. We’re optimistic that this plan paired with the Gattex will take pressure off of the upper part of her bowel and in time she can wean off TPN again. Time will tell if there is an improvement.
Thank you for the continued love and prayers.
It’s been a few months since we updated, we’ve been waiting to see how things progress on Evee’s new medicine (Gattex). Her latest bout of poor motility seems to have advanced to the next level, requiring us to retrace our TPN tracks and restart them daily. Right before Christmas she was able to reduce fluids down to only 1-2 days per week! We were so close to being off TPN, yet not close enough. Soon, it took a lot more to recover for her, no longer could we simply have her drink a hydration drink, but she started emptying her stomach by venting her g-tube more and more often and required more IV hydration. She began to fluctuate weight-wise and her appetite and energy levels began to wane. We’ve now made it the 5 months on Gattex without a complete improvement of her bowels and Dr Mercer has indicated that she must have a motility issue we have yet to find a cause/pattern for and that for whatever reason, her guts seem to like to randomly “go sideways.” Our goal is to minimize the number of bouts if we can and find the happy medium where she is content during the good & bad days.
So, to check up on the function of her gut, we took images of Evee’s bowels with contrast through the g-tube last week and watched it make its way to her ostomy bag. Her bowels were very active and moved the contrast through in a decent amount of time, but curiously enough her stomach refilled with the contrast again after it had already emptied. The radiologist made note that some of her food from the evening before was still sitting in her stomach and that she does have slight dilation of the upper part of her bowel, but not near the amount before her last surgery. So, she wondered if her motility is messy enough that it keeps pushing her stool back into her stomach, the wrong way.
Dr Mercer was happy with the size of her bowel; however, with the symptoms she’s been having as well as the stomach-refill issue, he reaffirmed that there ultimately must be something wrong with her motility at times. One idea that we left clinic with today was to perhaps place a j-tube passed the site where she had previous dilation and see if feeding her this way will bypass any area that could be a potential motility problem. This will ultimately tell us if this area is the sole spot of our concerns or if her guts will be what they’re going to be. We hope to put Evelyn on the schedule for a j-tube placement sometime in early February, that way we all have time to think about it before this next step and cancel if something else is revealed. The procedure would be fairly simple, since during her last surgery he was able to place a few clips on her bowel and attach it to the abdominal wall so that it could be a guide if we ever wished to insert a tube. We hope to see him again in clinic in a couple weeks to make a final decision. We also plan to use IV Zofran for her occasional nausea to see if this helps her avoid emptying her g-tube, that way we can avoid dehydration if possible.
Meanwhile her foot that was bothering her seemed to get better, but then got worse again. We are thinking that it is a musculoskeletal issue because she is favoring her foot due to a plantar’s wart that is growing quickly. We’ve been treating this as well, but she has missed some school due to the pain. Thankfully, in the last few days, it has started to feel better again.
Traveling long distances is still difficult for Evee; even just 6 hours in the van during our Christmas travels seemed to have caused decreased motility. Her motility seems to be better when she is more active or laying down. We are taking the precautions with her guts being upside-down that she may be more susceptible to line infections, and it is more imperative to limit her distance from the hospital. Keeping a balance between spending time with friends and family to keep us going and her health is a continual challenge. We certainly cannot be so sure of anything, but this we do know: God is guiding and we are so fortunate to have the continued love and prayers of our dear friends and family.
Please continue to remember us weak ones here, that God will continue to be the giver of all that we need in the days ahead.
With several months behind us since starting her new medicine, it has yet been difficult to get a full grasp on how much it will help Evelyn in the long-run. After only one dose of Gattex, she definitely showed signs of less dehydration and a lot more energy. Over the first few weeks, her stool output decreased while her appetite went up and her need for IV fluids lessened. We were very optimistic as we were able to taper her TPN relatively quickly; she went from needing 1700 mLs daily to only 600mLs in 3 weeks! Since then she has tapered further to 400 mLs daily, and has transitioned slowly over the last month to cutting out two nights a week. With this has come the pressure for her to get the calories in that she needs, as she doesn’t seem to require as much fluid-intake, which has been a relief for her. We used to think that if we could just get her fluid needs taken care of, she could enjoy eating and do fine.
But, every day has not been perfect, as she seems to continue to have her gut-upsetting days. With her slowed motility, there are days that her stomach doesn’t empty as well. Her TPN taper has stalled because she has the occasional need to vent her g-tube of extra fluid buildup that just didn’t want to digest that day. This slows her eating as well, so her weight has come down in the last few weeks. She went from having the occasional bad day to every few days having set-backs, and this last week she is back to only the occasional bad day again (maybe 1-2 a week). Because Evee isn’t the typical “short-gut” patient that they give Gattex to (her small bowel is actually a decent length) we are still experimenting and learning what this new drug can do for patients like her, and given the initial progress she made, it is obvious she is benefiting somewhat. Dr Mercer told us that as the Gattex is changing her bowels, her body has to adjust to the new square-footage that brings this feeling of “fullness” with it. It is hard to say at this point if it is Evelyn’s underlying motility issue trying to shine through or just the adjusting. They like to give the patient a full 5 months on the drug, as this seems to be the amount of time it takes to max out the benefits of the drug. So, we try to be patient and wait for her body to make the changes, if it will.
On the plus side, she hasn’t needed any hydration fluid at all since we started the medicine; this is great, since during a gut-episode she usually will need supplemented, sometimes daily. We are hopeful that even if the Gattex hasn’t “cured” any underlying issue, it has at least helped her recover much quicker and if a bigger “storm” is to come in the future, we can perhaps lessen the need for IV fluid.
Throughout her life we have tried unsuccessfully to manage the ups and downs with no idea what her intestines have needed to succeed; they’ve usually recovered on their own to a mediocre state that enabled us to “get by” until the next storm, whether it was a line infection or gut-motility flare. We cannot forget that only 9 months ago after her recovery from surgery, she was totally line-free and thriving wonderfully, without the need for Gattex. So, it seems we may not have a full picture of what her guts need and the medicine may be the bridge to be less dependent on IVs, for now, but doesn’t seem to be the cure-all. Time will tell. Meanwhile, in the last week she has an ankle that is giving her grief, this time the left foot, and we are praying that it is a simple muscle problem and not a brewing storm. May God continue to guide and give strength. Please remember us in prayer, that we could be given strength to not weary in this journey and accept with patience the ups and downs as they come. Thank you for all.
It has been a couple of months since we’ve updated. Last post we were optimistic that Evelyn’s guts were moving in the right direction and that perhaps we would make progress on g-tube feedings and be back in the position to cut out TPN again. Unfortunately, she experienced a lot of stopping and starting with her feedings and with the beautiful, busy-ness of summer, we felt that to allow her to coast for a few months would give her guts more time to sort themselves out. Mid-summer she started to eat more by mouth, tolerating most everything she put in while still avoiding hard-to-digest foods, yet she still required TPN. She was maintaining a mediocre balance of nutrition and hydration; not great, but not awful. Our family was thankfully healthy throughout the last few months, so this was a break for us for sure.
Dr Mercer recommended starting a new medication called Gattex that was just recently approved for children by the FDA. In short, it is a synthetic hormone that healthy bowels produce to expand the absorbing abilities of the gut. Many folks with short or unhealthy bowels do not have or make enough of this hormone. The hope is over a few weeks time we should see a decrease in the amount of fluid loss from her intestine as well as an improvement in the nutrition absorption. We are hopeful that this will be the bridge Evee needs to cut out most if not all of her TPN while her guts are stable. We’re hoping her fluctuations will be less drastic when she gets ill as well. We will have to watch out for any signs of overgrowth that may cause obstruction.
So, we received approval from insurance relatively quickly and today was her first dose! We will see what time brings and hope that this helps her feel better over the long-run. May God’s will be done. Continue to remember us in prayer that God will continue to guide and keep us all in His care.
We’re so happy to share that Evelyn’s anti-fungal treatment seems to have set her intestines onto a better course for now and she has had no horrible days of dumping since she was discharged from the hospital. She has continued on an oral regimen of anti-fungals to help keep her flora in check and hopefully assist her immune system to fight yeast on a daily basis. With stool outputs down and her appetite returning, experimentation with food has started…with success! She can eat a decent amount at a time, not only tastes, and she is excited to finally have the luxuries of eating without causing her stomach to be upset for days. We’re hoping to start g-tube feeds soon, and with this, to ween off of TPN as she tolerates.
Continue to remember our family in prayer, as we travel forward with God’s strength and grace.