"A true home is a resting-place to which at close of day, the weary retire to gather new strength for the battle and toils of tomorrow. It is the place where love learns its lessons, where life is schooled into discipline and strength, where character is molded. Far more than we know, do the strength and beauty of our lives, depend upon the home in which we dwell. He who goes forth in the morning from a happy, loving, prayerful home into the world's strife, temptation, struggle, and duty is strong, and inspired for noble and victorious living." ~J. R. Miller, 1894
This is an almost-quick summary of things here since my last update on Sunday, 9/13.
I saw my surgeon for a check-up that Tuesday, and she was concerned to see that the abdominal cellulitis really hadn’t improved, and seemed possibly even a little worse. She was also worried to hear that my GI issues had continued to worsen.
On Thursday, I talked with my Infectious Diseases specialist, and the stomach issues had worsened enough that he felt we should test for C. diff, but he also decided to stop my oral antibiotic since we all felt it was the most likely culprit causing those problems. I was very sick that day, but I did manage to get in for a therapy session for my neck. That pain had gotten so bad that I was struggling to sleep or even sit still. I have lost quite a bit of ground in the treatment of my subluxated vertebrae, but that session helped quite a bit.
On Friday, I had to be at the hospital at 6:30 a.m. By this time, the fatigue I’ve been struggling with was so severe that just getting showered and dressed left me too tired to even talk. I caught my breath a little on the drive to the hospital, but just walking into the hospital, once again, left me completely exhausted and caused every staff member who saw me to ask if I needed a wheelchair. It was really hard to feel so helpless and weak, and I was beginning to feel a little scared about what everyone might be missing as part of my diagnosis. It just didn’t make sense for me to be that tired.
I was taken into an OR, where they used fluoroscopy to get a good look at the drain and the deep abscess. And we finally got some good news.
That nasty abscess had cooperated beautifully with the drain and the antibiotics, and was almost completely gone. They were able to remove the drain. This was great!
I got a call from my surgeon on the way home. She and my ID doctor had talked and decided to stop all of the antibiotics, based on the results of the imaging. They reasoned that the medications had done their job on the deep space infection/abscess, and that continuing them wasn’t doing anything to address the remaining cellulitis in the abdominal tissues. Also, they thought that the high doses of such powerful antibiotics just might be what was causing the fatigue to be so bad. So I had no antibiotics at all yesterday or today. Just before I went to sleep last night, I also got more good news. The test results for C. diff were negative. Yay!
I couldn’t believe the difference in my energy levels already today! Even the kids noticed that I walked differently and had more color. I’m still very tired, the stomach issues are still with me, and the pain and bruising from the cellulitis remain, but I feel so much better! Scott and I actually did a slow, gentle twenty-minute walk in the neighborhood this afternoon, and I spent time resting in my beloved porch swing, just breathing in the fall air. And then another great thing happened.
My home health care agency sent a nurse to our house to remove my PICC line. I’m feeling more human by the hour now.
The plan is to just wait and see how my body handles everything in the coming week. I am scheduled to see both doctors on Monday, 9/28, and they want to see if, just maybe, my body will resolve the remaining swelling, bruising, and pain from the cellulitis if we give it a rest from the drain and all the strong medications. If things should get worse before then, I’m to call them immediately. Otherwise, we’ll see what things look like on the 28th, and figure out next steps then, if necessary.
God has continued caring and providing for us little by little. Someone anonymously left twenty pounds of sausage and twenty pounds of meatballs on our front porch, and this will help so much with our grocery budget in the coming week.
Another friend delivered tons of treats and groceries to our house today, and this was a huge blessing.
A dear friend from Scott’s and my newlywed days had these very special gifts sent to me just as an expression of love and concern.
I feel confident that yesterday finally marked a very real and official Day One toward healing, and I’m ready to keep moving forward.
And I hope to spend more hours in my porch swing in the coming days as my body tries to heal itself. Thank you more than I can say for all of the prayers and messages of love.
“The happiest, sweetest, tenderest homes are not those where there has been no sorrow, but those which have been overshadowed with grief, and where Christ’s comfort was received. There is a blessing sent from God in every burden of sorrow.” ~ J. R. Miller
I am home! I made it home Friday night, but I have been so tired, and my care is so time-consuming, that I haven’t managed to update everyone.
This is how our day starts and how it ends — Scott infusing my medications. It takes two hours each morning and two hours again in the evening. Add in a shower, which takes forever with the abdominal drain in place and a PICC site to protect from water (and zero energy in my body), and that pretty much defines our life right now.
I have worried a lot about how so much hard, sad, and stressful stuff might be affecting our children’s joy and feelings of safeness and stability. Especially because it’s been going on for almost two full years now without much of a break.
I worry in a way that proves to my heart that I’m not trusting God as he writes our story. The quote from Miller above is such a good reminder. He is a good and faithful author and father, and he alone knows what’s best for the shaping of my children’s character and the preparation for whatever he has ahead for each of them. It doesn’t matter that I don’t understand. It doesn’t even matter that I often think he is wrong. I want to learn better to look at him with the trusting innocence of a child who is cared for and loved more dearly than hearts or minds could ever even imagine. I fail daily. But he never gives up on me.
Another CT was done on Friday, and it showed still more infection in the large abscess that the abdominal drain was not taking care of. So they irrigated with tissue plasminogen activator, or tPA. This is also referred to as a “clot buster.” The drain has been working well since then, and that, combined with all of the antibiotics, are finally making a noticeable difference.
I’m fighting with nausea now from the one oral antibiotic I’m taking, but it has mostly stayed mild, so far. My pain is much better today, and I have slept deeply here at home for the past two nights. We are on the right track. It’s a long and slow process, I’m just completely shocked at how weak I am (it’s like even just breathing burns up energy I can’t spare), and I won’t be back to normal for quite awhile, but we are moving forward every day now. It has taken a very long time and lots of rest breaks to get this update written, and I think I’m just now beginning to fully realize how sick I’ve been. I’m thankful for the teams who are caring for me at West Chester Hospital. For the most part, they’re great listeners who value our input, and each team is working well with each of the other teams. And my surgeon is wonderful. I really love her.
The children are mostly doing well. Kathryn was so, so happy to have me home, and so were all of the others. Even as a mostly useless blob on the sofa, I’m still a stabilizing factor for all of them, and it has filled my heart to overflowing just to be here with them all again.
As Scott left the house Friday morning to head back to the hospital, Kathryn was teary-eyed, and her sweet mouth was turning upside down. Her sisters, so well-trained in heading off dangerous emotional meltdowns for her, came to the rescue immediately. One of them had been searching for ideas for just such a time as this.
Kathryn loves Princess Leia from Star Wars, so Raiza had a kitchen activity all ready. She and Kathryn made these adorable Princess Leia cupcakes. Kathryn loved this and calmed right down when they told her the plan for the day. They even made these pretzel light sabers. (Please ignore the pantry door in the background that still hasn’t been painted white; those kinds of projects don’t even make it onto our very long to-do lists!)
Once again, the older kids were available to give this kind of attention to all of the younger ones because of the meals that were provided. I am at such a loss as I try to find a way to express how huge this gift was and how deeply grateful we are. But there really are just no words to express it accurately.
Scott and I spent several hours on Saturday, talking through some behavioral issues that had occurred toward the end of my hospital stay. It was clear that these all stemmed from worry and stress about my safety, my absence, and the uncertainty of how long I would be gone. It was a long, twisty, and exhausting talk, but while resting in our family room and hearing my babies open up their hearts, I was fully aware that this was exactly what my own heart had been longing for. It was good and healthy, and I breathed in the beauty of my life in those moments.
We continue to pray for big answers to prayers for some big needs. But God also continues to provide only what is needed a bit at a time. We reached a very critical place financially this week and weren’t sure we would be able to buy groceries. A gift that showed up yesterday will carry us about another week and a half now. We are praising him. Thank you for all of your prayers for our family.
Today has been a really active, exhausting, kind of crazy, and (we hope) productive day. I’m still in the hospital and still don’t know for sure when I will go home. But some decisions were made, and some action was taken.
There is still so much about this that we don’t understand, so Scott and I asked how there could be an infection without any growth in a culture. Basically, we were told that one of two things has to happen: 1) either they don’t get a good sample for the culture, or 2) the culprit is a finicky bacteria that is really picky about where it will and will not grow (loves the human body, hates petri dishes).
Either way, they are moving forward with a very aggressive treatment plan to try to hit any possible enemies lurking in my body. If the culture should surprisingly grow something tomorrow, then they will narrow the plan a bit and attack the identified bug.
A PICC line (a long, thin tube that’s inserted through a vein in the arm and passed through to the larger veins near the heart) was placed in my arm today. I seem to be stuck in a place of attracting rare and unusual things, and that happened again during my PICC insertion. Thankfully, we don’t think it was a huge deal, but certainly not fun. Our kids have had plenty of these done, and they have always been no big deal for them. So I was prepared for a quick and easy procedure. Unfortunately, as they were threading the line through the vein, they hit a nerve. Such an ouch! This is, according to them, very rare but does happen, and can even result in nerve damage. There doesn’t seem to be any damage, just soreness, so we hope that will resolve quickly and be the end of that little adventure.
The ID doctors, as I said, decided to move in with pretty big guns and start two powerful IV antibiotics, plus one oral one for at least two weeks. They started those new meds this afternoon with an initial mega dose for one of them. They were also running that one in at a pretty fast rate through my PICC. About fifteen minutes after the beginning of that infusion, I started having really intense itching all over my scalp. This kept getting worse, and then I began to develop a rash.
My nurse immediately said it looked like “Red Man Syndrome.” Really? Did you just make that up? Because it sounds like not a real thing, and maybe also even racist.
Nope. It’s a real thing. She called the pharmacist and he told her to slow the rate of the flow and that I should respond to that. And I did! While this wasn’t something super rare, it was unusual. I’m beginning to just wait in fear all the time for the next crazy and rare thing. And I’ve decided I want the next rare thing to be the discovery that some unknown multi-millionaire relative somewhere just died and left his fortune to me. That’s the kind of “rare” I’m ready for now. Enough of the bad rare stuff.
They want to watch to see how I respond to infusions overnight to make sure I don’t have a repeat of that reaction (or any others), but they did work hard to line up a home health nurse (just for periodic check-ins on the PICC line and for blood draws) and the delivery of home supplies for the PICC line. There is some hope that I could finally go home tomorrow. I’m just staying focused on the right now. I can’t look past the moment I’m in.
The good news is that we are pretty sure that we’re suddenly seeing some glimpses of very small improvement in the cellulitis. Those areas seem to maybe be a little bit smaller and softer, and the pain actually seems to be just slightly better — not quite as sensitive to touch. So maybe we’re starting to get somewhere. And maybe things will go even faster with these more powerful antibiotics. We’ll see what the next twelve hours show us.
Scott took some time this morning to do a pretty thorough pulse check on everyone’s emotions before heading back to the hospital. He probed a bit to get the younger ones to share their feelings, and they responded well. The older kids reported that this seemed to help kind of reset them all again for another day of uncertainty and my absence.
Once again, thank you so much to everyone who is making it possible for me to focus on healing, for Scott to run back and forth every day, and for the kids at home to take care of each other and the younger ones. We could never do this alone.
We don’t really know anything, yet, but I thought I’d update on what’s happened so far since it’ll likely be awhile before we really know anything for sure.
Being in the hospital (as the patient or as the parent of a patient) always feels like some kind of a time warp. It’s like the world shrinks until this becomes almost all there is, and I always lose track of time. It feels like I’ve been here for weeks, and like my initial surgery was months ago instead of three weeks ago.
I’ve been on IV antibiotics for three days now, and the drain has been in place for almost 36 hours (I had another surgery to place this drain yesterday morning.) I’m no longer running any fever, but that’s the only change anyone has seen. The drain has put out very little, which is baffling for everyone based on how large the abscess is. And the pain and cellulitis-affected tissues have not responded in any tangible ways.
Because of how little my body has responded to these very strong antibiotics, my doctor called for an ID (Infectious Diseases) consult today. I was going to ask her to do this, so I was greatly relieved when she told me this first thing this morning before I even got the chance to ask her. It makes it so much easier when we and our doctors are on the same page.
Scott and I met with an ID doctor this afternoon here in my hospital room, and we really liked him. I hadn’t realized how much I was feeling the burden of having to stay on top of things myself in order to be sure we were advocating for all of the right things. We are so used to medical pictures that aren’t clear-cut, and we’re used to sometimes having to fight for what we think is right. This is all even more exhausting when we don’t really know what we need to be asking for. As we were talking to the ID doctor this afternoon, I felt myself relax for the first time since all of this started, and I realized how stressed I’ve been feeling about trying to figure this out myself. I feel like they know what they’re doing and what to look out for, and I don’t have to feel like I have to be in charge anymore.
They want to make sure they aren’t dealing with MRSA, and they want to identify any other bacteria that could be causing the problems. The first step is to wait for all final culture results from the drain placement surgery yesterday. He expects those results all to be in sometime tomorrow. Since I’m no longer running any fevers after being on the IV abx here, he feels these meds are at least doing something, even if they aren’t what’s needed to resolve it completely. So he wants me to stay here on these meds while we wait for culture results, which I agree with in spite of how much I want to get home.
If any bacteria makes itself clearly known in the culture results, he said that will make it much easier to come up with a treatment plan. But they aren’t shaken by the possibility of not getting clear answers tomorrow from the culture. He said they will still start putting together a treatment plan even if they don’t get a definitive bacteria, and he wants it to be a plan that gets me home as soon as possible, even if I need to come home with a PICC line in place. Scott and I feel good about his plan at the moment. I want to go home, but I don’t want to do that prematurely and then have to come back.
Kathryn began showing signs of stress this afternoon, so we are really hoping we can get some pieces in place soon that will allow me to go home and finish healing. Please keep praying for her. I don’t know how we could cope at all if she began seizing again right now in the middle of everything else.
The other kids are doing pretty well, although the younger ones also began showing signs this afternoon that they are nearing their limit. One of our older daughters confirmed that one of the biggest reasons they are managing to hold all the little ones together right now is that meals have miraculously been provided each night since I left, and we learned today that there are meals coming again tomorrow night and Friday night, too. We truly have the most amazing friends in the world! We will never be able to thank everyone enough for the ways you have loved us through these last couple of years.
Last night was a bad night with lots of pain, and I had to take heavy pain meds twice during the night. I’ve been blessed to have the same amazing nurse every night that I’ve been here. Her name is Bunmi; she is Nigerian, has a very interesting story, and she has been a gift. She and I have a plan in place to deal with the pain again tonight if needed, so I’m going to try to sleep now. Goodnight from my little world here.
Thankfully, my surgeon was on call for her group today, so I was able to talk to her this morning in spite of the fact that it was Labor Day. She immediately told me that we had “given this approach a try,” and it was time to get more aggressive. She wanted a CT scan, and the fastest way to do that on a holiday was for me to come in through the Emergency Department. She also told me she would be admitting me for an undetermined number of days, and that we would decide on next steps once we got the imaging results.
The CT showed that the infection had progressed to a deep space infection and that there is a very large abscess deep in my abdomen. This isn’t what we wanted to hear, but as before, at least we had answers and explanations to why I’m just getting sicker and not recovering. Remember those risks they rattle off in pre-op, “infection, bleeding, etc”? Well . . . I’m proof that, sometimes, no matter how careful everyone is, or how healthy you are going into surgery, it happens.
Everyone has been surprised that I’m not sicker than I am. They were surprised that this infection got so far with such low fevers and so few symptoms. I don’t want to sound like a commercial, but I truly believe that the boost that our Juice Plus gives to our immune systems has helped so much in this area. It has kept me strong enough for my body to fight really hard these past couple of weeks in the ways God designed it to fight off infection. I also think that, even though it ended up affecting the tendons in my healthy left foot because of my bum right foot, the fact that I’ve tried to keep walking 25-30 miles a week for the past year has helped get my body into a much stronger place than it was before. I sure do miss those walks!
But my body is definitely getting tired of fighting. It wants things to get back to normal. I’m thankful to be here where it can get all the help it needs now.
So. I am on a couple of strong IV antibiotics, and sometime tomorrow I’ll be heavily sedated, and Interventional Radiology will attempt to drain this large abscess. We are praying that this will finally mark the beginning of full healing.
My surgeon told me that I can’t keep my appointment for foot surgery next week — that it would be too much trauma for my body after this crazy drama, and that I need to postpone that for awhile and give my body time to stabilize after all of the unexpected pieces of this recovery. I’m incredibly frustrated about this because I want everything behind me and to be healthy again. But I’ll trust God’s plan with this, too.
So here I am. Staring at a hospital wall, instead of finally celebrating Owen’s and Ethan’s August birthdays tonight as planned. A couple of dear friends jumped in and provided meals for the next three nights for the kids, and one even ordered this cake for the boys and had it delivered to the house. So they will get two birthday cakes this year since we still plan to celebrate once I’m home.
My biggest concern in all of this is Kathryn. As I’ve said so many times before, I am the primary stabilizing factor in her life, and when I’m absent — especially unexpectedly — it puts her at greater risk for seizures. I worry about her since her seizures aren’t fully stable yet. But I am no good to any of them like this, and this is the only way to get me well. Please pray for Kathryn and the other kids, and for Scott. He has been my hero through all of this. One of the best ways to keep her happy in stressful situations is to let her work in the kitchen. As I left for the hospital this morning, she asked if she could bake cookies. Her sisters helped her create these plates of dangerous yumminess.
In this picture, the view from my bed here at the hospital, you can see evidence of the little private pizza party Scott and I had this evening before they kicked him out. He will be allowed back in tomorrow morning, and I’m thankful that he’s home with Kathryn and the other kids — although she kind of sees us as one unit, and it messes with her head a bit when one of us is missing.
Thanks so much for all of the prayers for my healing and for the rest of the family, and thank you to all who keep feeding them for me while I’m walking what is beginning to feel like a long road. We pray that the end of this particular adventure is in sight now.
This is just an update on things here — mostly me. I seem to be dominating the Rosenow story these days, and I’ve added a little extra drama to life around here.
I had my first of two planned surgeries on August 20, and everything went mostly as expected. The abdominal mass was larger than imaging indicated, and due to some bleeding problems during the surgery and the effect of the mass on other tissue in the area, my surgeon ended up removing a little more of me than she had hoped. I was happy to have been able to keep one ovary, as that is believed to help regulate hormonal balance which offers protection against heart disease, “bad” cholesterol, and even dementia. My surgeon was also happy to discover that there had been no damage to the bladder or ureters, and the pathology report confirmed that everything that was removed was benign as expected. These last two pieces of info brought great relief.
I did so well overnight, that she agreed to let me go home the next day instead of keeping me two nights as she had planned to do.
Initially, my recovery progressed as expected, and my pain level, while definitely not fun, was mostly manageable. The only mildly concerning piece was that I began running low-grade fever about two days after surgery, and those fevers just wouldn’t go away. I was also experiencing severe fatigue, but I had been told to expect that, so I didn’t worry too much.
Then at about Day Six post-op, I began noticing some abdominal bruising. I wasn’t really concerned by this, because with a ten-inch incision and removal of organs, I expected that there would be some bruising. But the bruising spread and deepened quickly, so that by Day Eight, I was feeling a little surprised. My fever was also beginning to run a little higher, and I contacted my doctor. She did some blood work, and she repeated a COVID test just to rule out the possibility that I might’ve picked that up in the hospital. My bloodwork, while not normal, didn’t look too bad for having just had a surgery that had involved a decent amount of bleeding, and my COVID test was negative.
By Day Ten, the extent and depth of the bruising and the accompanying swelling were truly shocking. My abdomen, the entirety of which looked very much like a gigantic eggplant, had also developed a large, hard mass that was very warm and very sensitive to touch or movement. I sent a photo to my doctor via My Chart and told her that I was a little worried and just wanted to make sure this wasn’t something that needed to be checked out.
The next morning, My Chart showed that the message had been read by the office staff, so I waited. I didn’t hear anything that day or the next, which is unusual for my surgeon who is a wonderful communicator. I was still running fevers, but was able to keep them low-grade with Tylenol, the fatigue was real and very difficult to manage, and the pain was waking me all through the night and making it hard to function throughout each day. The bruising seemed to be fading suddenly and rapidly, but the swelling and other issues persisted. So I called the office and talked to a nurse and asked her to please just confirm that my doctor had seen the photo and message I had sent to her. She looked in my medical records, saw a note from the doctor, and assured me that the doctor had seen the photo.
I knew I had an appointment with the doctor yesterday (Friday, which was Day Fifteen), so I tried to be patient and wait. When I got to that appointment, I started by showing her the photo from Day Ten, and I asked her if she had seen that photo when I sent it to her. The alarm on her face was confirmation that she had never seen this photo at all, and she was very worried. She told me that this was absolutely not normal post-op bruising, and that, if she had seen it, she would’ve brought me in right away that day, done a CT scan, and probably admitted me for IV antibiotics.
She explained that it was clear that I had been bleeding internally (probably a slow leak or ooze which has stopped now), and upon examination, she diagnosed me with cellulitis. She then proceeded to discuss how dangerous this can be, explaining that, if we can’t get it turned around quickly, I could end up back in the OR where she might even have to open things up and clean out the infection.
She was clearly upset that the picture and my message had never gotten to her, and she plans to try to figure out how this happened. It seems like someone on her staff saw it, but then failed to pass it on to her (which is the normal process, if we are understanding things correctly), and that the nurse who saw the note in my medical records misread that it was actually a note referring to an earlier My Chart conversation with my doctor and not the message I sent with this important photo. Regardless of what happened, this mistake resulted in my body fighting cellulitis for five to seven days, without the assistance of any treatment.
Because my fevers have remained low-grade with the use of Tylenol, she agreed to start with a more conservative approach of putting me on a round of oral antibiotics. rather than admitting me right away. One of the complicating factors with that plan is that, for some bizarre reason that I can’t begin to understand, my body has developed allergies to a large number of medications over the past year and half. I can’t even take Motrin any longer. I am allergic to some of the best oral antibiotics for fighting this, but she decided to try Keflex, knowing I might have an allergic reaction to it because it’s a penicillin-type drug (Penicillin is one of the drugs I’m allergic to.) She warned me that I needed to be prepared for the very real possibility that I might end up in the emergency room this weekend, and then admitted for IV antibiotics.
She also told me that this cellulitis could cause my beautifully-healed incision to open up and urged me to watch closely for any signs of that.
It’s frustrating that this happened, but we aren’t mad at anyone. We are thankful that she is trying to discover how it happened in order to, hopefully, prevent this from happening to someone else in the future, but this is where are now, and we’ll start here and move forward.
I’m so thankful to have a clear explanation for why I’ve been having such a terrible time recovering, and really hoping I can heal now enough to be ready for my foot surgery that is scheduled in less than two weeks. We will just have to see how the next day or so goes.
I’ve been too sick to attend any of my appointments for treatment of the subluxated vertebrae in my neck, so I will probably have to regain some ground there when I finally get back in. But I have managed to do most of my at-home therapy almost every day in spite of all of the complications, and my neck has remained mostly not too bad.
Quick update on Kathryn, Lilyan, and our elderly dogs:
Kathryn has done very well overall. Some seizure activity here and there, but nothing big or alarming. She will have another increase in her VNS settings in about three weeks.
Lilyan has not been able to start her bisphosphonate infusions yet. This is partly due to me, and partly due to the fact that she had to have surgery on both of her feet. Two surgeons (plastic and orthopedic) worked to clean out a small wound that we’ve been trying to heal for over sixteen months now (started as a pressure sore that developed when she was in ICU last year) and to release some tendons to hopefully relax some severe curving in her feet. This is not unusual for children with lower-limb paralysis. Scott took her for this surgery, and she came home the same day sporting this pretty red cast on one foot and a soft dressing on the other. This has added some extra work to our in-house Rosenow Care Team, but we are still managing,
Saxon is falling more and is sick more often, but he still doesn’t seem to be in enough pain to justify taking the final step we all dread. Godfrey continues to fight a severe UTI after four rounds of antibiotic. He’s on his fifth one now, and we’ll check again on Monday to see if we’ve finally managed to conquer that. He also doesn’t seem to be too uncomfortable yet, so we are just continuing to love on both of them and watch them closely.
I couldn’t postpone school any longer in spite of how ill I’ve been, so with the help of a few of our older kids who haven’t been able to go to work due to COVID, I’m managing to do fairly productive school days from the couch. They are excellent classroom assistants, and I’m so very thankful for their gifts and their loving servant hearts. I’m completely exhausted by 1:00 p.m. and usually have to come upstairs and climb in bed for a couple of hours afterward, but we are getting it done.
Mostly, the fact that we have done as well as we have has been due to the provision of so many meals. I had hoped for five meals for our family during my recovery, but God blessed us with ten! I had no idea how much we would need these! My care and need for help has added a lot to my children’s already heavy workloads each day. Our gift cards are all gone now, and this week, we will be attempting to add meal prep back into our days. Prayers for that would be so great.
Financially, we are still praying for some very big answers to prayer, but God has continued to carry us through one day at a time right now, and we’re trying to rest in that.
Thanks so much if you managed to read this all the way through. Prayers that my body will tolerate and respond to the Keflex over the next couple of days would be so appreciated. I would really, really — like a LOT — love not to end up back in the hospital. And I would love for the pain and swelling to subside enough that I can begin to sleep through the night.
There is no shadow like that of God’s wings. We cannot lean on our own understanding; it will lead us into a bog. We cannot trust our bodily strength; the most brawny arm will utterly fail. There is nothing outside of us that we might trust, either. Our God is a safe place on which to lean.” ~ Thomas Lye (? – 1684)
I have been experiencing neck, shoulder, and upper back pain for a long time — probably at least a couple of years. I thought it was stress. I mean, the last couple of years have been really tough. It made sense.
But three days after that last blog update, I suddenly began having really intense pain. That was on a Friday. There were times over that weekend when I could barely breathe because the pain was so terrible.
That following Monday, I was diagnosed with badly subluxated C 3, 4, and 5 veterbrae in my neck. It appears to have happened a long time ago, and to have been caused by some injury, but we have no idea what or when. It’s pretty bad and damage has already advanced pretty far, but it’s still believed that we have caught it in time to prevent a major surgery if I work through all of my treatments, follow instructions carefully, and apply some TLC to my neck. I will have to undergo 24 treatments over a 12-week period, follow a home therapy program, and then be re-evaluated at the end of that 12-week period. We will try to continue as much as possible through my upcoming surgeries and recoveries so as not to interrupt progress that is already being made.
I was bitterly disappointed to learn that I have yet another health issue. This is so unusual for me. Scott and I have both always been so healthy. But I began treatment sessions right away, and I was so relieved to notice improvement in the pain after only two visits.
But then a new challenge arose.
This past Thursday, Kathryn met with her neurologist to have the settings on her VNS increased again. Unfortunately, the increase this time triggered seizures for her (as we were driving home from that appointment), and things went from bad to worse.
We ended up in Children’s emergency room at about 10pm that night. By that time, Kathryn had been seizing for almost 6 hours with only one short 30 minute break. We had administered two doses of rescue medications with no result.
Once we arrived at the hospital, Kathryn was taken straight to a trauma bay, and once again, her seizing stopped. She was given more medication through an IV, and we were moved to a floor. It finally seemed to be over, and she even drank a little juice and talked to us a bit. But after about three hours, everything started over again.
More rescue meds were given through her IV, and finally, by about 3am Friday morning, everything really did stop. Right around 3am, Kathryn’s crying stopped abruptly, she opened her eyes like she was waking up, she looked straight into my face, and she said in a weak, but matter-of-fact voice, “I’m really very tired, actually.” Our poor baby. I almost laughed out loud through my tears. Her little grown-up words coming from her sweet baby face. We love this girl so much.
I can’t even describe how horrific it was to stand over her all those hours, unable to help ease her torment at all. She couldn’t bear to be touched, and she didn’t even seem to know who we were much of the time. It really was almost unbearable, and I felt such despair. Prayers for help seemed to go unheard, and I reached places of feeling abandoned by God.
I posted the following on my FB page during that agonizing ordeal:
I get frustrated at how quickly I revert to that fist-shaking version of myself during very hard times as I rail against the God who holds us.
The beautiful thing, though, about being a child of this God who loves and forgives so deeply and completely is that even when I can’t keep my eye “steadily fixed on the rainbow of promise,” He still faithfully continues to love me so, so much and teach me how to “Seek that the end of all His dispensations with [me] may be to make [me] more trusting and confiding.” He is molding me into a better version of myself even when I’m shoving his hands away and begging him to stop. He knows my heart. He knows that deep inside I long to know him better and follow him more peacefully. He knows that I really do believe, underneath all of my pain and railing, that there is no other way to find peace in the midst of such sorrow and sadness and fear and hurt as living in this world continually brings across our paths.
I am so broken. We all are. But he is the lover and healer of broken people, and I can just cuddle into his arms in all my brokenness and take deep breaths in the certainty that I am safely loved and cared for — even when I scream accusations of abandonment and lack of caring into his face. His gaze remains steadily and peacefully fixed on me, filled with love, understanding, and steadfastness, Isn’t that amazing?
Once Kathryn’s seizing finally stopped, peace filled the room, and I stayed awake the rest of the night, just watching her breathe normally and sleep peacefully.
They let her come home Friday evening, and in spite of being very tired, and although her speech and coordination are still affected, she is doing well. We will follow up with her neurologist soon about where we go from here.
Unfortunately, I missed an important treatment session during all of that, and all of my pain has returned with a fury. I’m very uncomfortable. But I’m headed back for more treatment today, and I hope to regain any lost ground quickly if we can just move forward from here without anymore interruptions.
Thanks for all of the prayers. We need them so much. This is such a long, hard season God has us in. There doesn’t seem to be any end. In the midst of all of the medical drama, we are also in very hard places financially. God is sustaining us a drop at a time, but we are praying for a significant rescue that will carry us through the rest of the year and allow us to catch our breath. Would you join us in asking for these same things?
But we want to be able to pray resolutely that, if that not be his will for us — if his good and perfect plan is to continue to sustain us one drop at a time — we will accept that. That we will even embrace that plan with joy in spite of our fatigue and pain (physical and emotional) and our heart weariness. Please pray that we will remember that our only safe place is in the shadow of God’s wings, regardless of what awaits us there.
The dogs continue to struggle. Godfrey’s UTI is still not responding even after weeks of antibiotics, and Saxon now has another serious ear infection on top of his other problems. Thanks for all of the kind words about this season of grief as we walk beside our sweet dogs and try to make some hard decisions.
Weird title, I know. I wanted to update everyone on life here. Specifically, there are some things concerning my health that I’ll share. But I’ll also update about Kathryn and Lilyan, and there’s sad news about two of our dogs.
Many of you may remember that I ended up being taken by ambulance to a local ER during the winter, and then a few hours later, into the OR to have my gall bladder removed. During that ER visit, imaging also revealed a large mass that was unrelated to my gall bladder. Unfortunately, the arrival of COVID-19 to our area interrupted plans to follow up on this mass, and no one would agree to see me or do further testing. I have, only in the last few weeks, been able to get back to addressing this.
Further testing confirmed that this mass is, indeed, large. It’s too big to be removed in any way except a full abdominal incision, and that surgery is scheduled for August 20. The entire uterus is involved, but the size of the mass obstructed the view of other organs in the area, so some details will remain unknown until I am in surgery. There is some concern that the bladder might also be involved, so a urologist will be on standby, just in case any repair is needed. The good news is that my doctor really believes the mass is benign, but anything that is removed will be sent to pathology for confirmation of that.
I’ve been told to expect the recovery to be anywhere from six to twelve weeks, depending on exactly how extensive the surgery ends up being. Four weeks into that recovery, on September 18, I will go back into surgery to have my foot operated on again. The bones never fused as they were supposed to have done after my foot surgery last November, and that whole repair was a failure. I have been in a decent amount of pain since then, but really good shoes have made it possible for me to keep mostly functioning normally. That’s getting harder as time passes. After the foot surgery, I’ll just complete recoveries for both surgeries simultaneously.
As I am preparing for these surgeries, I’ve been trying to figure out what kind of help I need for my family. So many of you have made it clear that you want us to ask for help, and we appreciate that so much.
We have decided that, if we could get five meals during my first week after surgery, that would get us to a place where we could come up with a temporary new normal. We might need a few more meals after my foot surgery in September, but we can let everyone know as that gets closer. So we are looking for meals for Aug. 20, 22, 23, 24, and 25. The 21st is already taken care of. Restaurant gift cards are completely great, especially during the pandemic. Meals prepared and delivered to our home would need to be done in a no-contact way because we have to be so careful with several of our kids who are considered high-risk during the pandemic. If anyone is interested in helping, please just let me know.
Lilyan is now 16 months out from her near-fatal surgery last March, and she finally, finally got the all-clear to come off our her last antibiotic a couple of weeks ago. She is healthy in almost all ways, and her blood work continues to look excellent now. However, she has continued struggling with fractures in her legs, and X-rays show that there have been many, many fractures through the years, even well before she ever came home to us. Testing with endocrinology has confirmed that she has severely osteoporotic bones, but only in her lower extremities. Her upper body looks normal, which was great news. In the next month or two, she will begin treatment in the form of bisphosphonate infusions every six months. The first treatment will require an overnight stay in the hospital just to see how she does. These treatments can cause flu-like symptoms in some children, and they need to see how her body is going to respond as we move forward.
But I want to share this incredible video of her learning to swim this summer. Because of the shape of her trunk before her big surgery last year, this was impossible for her back then. All that she has been through over the past sixteen months, though, has made it possible for her to finally realize this dream of learning to swim! She is thrilled. No function from about the chest down, and still . . . just look at her go! Such a beautiful fighter our girl is!
Kathryn finally had her VNS device implanted as we continue trying to bring her seizures under control. Testing confirmed that, at the worse point, she was having, every hour, up to 6 significant seizures with many smaller ones between those. She is definitely more stable now and has regained many of the skills she lost, but she’s still not where we all hope she will be once she adjusts to this new device, and once it’s gradually increased to its maximum settings for her. We’ve been told that we probably won’t see its full impact until about six months after the placement, but we’re so thankful for the improvement we are seeing, so far. We’ll keep you posted on that.
We were so sad to learn a week or so ago that two of our dogs are probably nearing the ends of their lives.
Godfrey, our older schnauzer, who is somewhere between 13 and 15 years of age, is completely deaf now, has been fighting with a very serious UTI for weeks, and is exhibiting what appear to be possible signs of dementia. We’re hoping we can get this infection under control soon with the new antibiotic he is taking, but he is definitely sleeping much more, not eating normally, and declining pretty quickly.
Saxon, our golden retriever, who will be 12 years old in just a few months, is now suffering from significant neurological degradation in all four legs, but especially in his front legs. He falls multiple times a day, but doesn’t appear to be in any real pain, so we are just watching him closely and letting him guide us through this final season of his life. It helps that we have an elevator in our house, and we are teaching him to use that for getting from level to level instead of trying to climb up and down the stairs. He has had multiple falls down the stairs, and we’re trying prevent any injuries.
Pets are such a critical part of our lives, and we love them deeply. Our dogs have always been key pieces in our children’s emotional healing as each child came home to us one by one, from backgrounds of trauma. Saxon and Godfrey are especially good at this job of healing the hearts of broken babies, and the thought of losing them soon has left everyone sad. We are all pouring as much love and snuggle time into their lives as we can, and taking things one day at a time.
There are many more things going on in our lives every day, but I won’t try to cram all of those details into this update. Thank you, as always, for your prayers and your love for our family.
“We need to bring our weakness to Christ and lean on him in simple faith. If we lay it on the strong Son of God and let him carry us and our burden, He will make our very weakness a secret source of strength. He will not take the weakness from us—that is not his promise—but he will so fill it with his own power that we shall be strong, more than conquerors! This is the blessed secret of having our burdening weakness transformed into strength. The secret can be found only in Christ. And in Him, it can be found by every humble, trusting disciple.”
~ J. R. Miller (“A Life of Character”), 1894
Last Saturday (May 30), Kathryn had a terrible and prolonged seizure episode that lasted an hour and forty minutes. My heart just shriveled up inside me as I held her head in my lap for that indescribably long period of time and watched electrical activity ravage my baby’s brain. I can’t even describe the pain, the fear, the maddening sense of helplessness I felt during those time-stood-still moments.
I wanted to reach inside that beautiful and precious head, grab hold of those hellish seizures with both hands, rip them from her brain, and crush them into oblivion. I wanted to fight to free my brave girl from their clutches. I felt such rage over my inability to fight this enemy attacking my baby, and I wanted to channel that rage into destroying them. Instead, all I could do was sit helplessly broken on the floor and hold her, knowing I wasn’t enough.
I couldn’t save my baby from what was happening to her. And that has now become daily life as Kathryn’s mommy. I feel so weak and so “not enough.” So infuriatingly helpless.
She has astounded a watching world through her sixteen years of life and fought so hard and so courageously to accomplish the impossible — over and over again. And now we are watching the results of those years of fighting, slowly disappear as these seizures eat away at her delicate little brain.
It required three separate doses of rescue medications Saturday night to finally bring things under something that at least resembled control. Scott then placed her sedated body lovingly into our bed where she could try to sleep safely between the two of us. None of us really slept much that night.
Her neurologist was out of town, but we stayed in close contact with his nurses, and he even called us to check on her. They discussed hospitalizing her, but we chose to hold off until he got back to town because we didn’t want her under the care of a doctor who doesn’t know her history the way her own neurologist does. One of the things we hear repeatedly is how unusual, atypical, even unique, her seizures are. They can be very confusing for someone who doesn’t understand them, and the wrong treatment could make things worse.
Her doctor returned to town on Tuesday and admitted Kathryn where they hooked her up to EEG and planned to leave her connected for as long as it took to get an accurate picture of what’s going on.
Sadly, this EEG painted a picture that is even worse than everyone expected based on her already-disappointing short EEG done a couple of weeks ago. It showed seizure after seizure, one after another — sometimes as many as six significant seizures per hour with many smaller ones interspersed between those. Most of these are generalized (affecting her whole brain), as opposed to the ones she has had in the past that affected localized portions of her brain. Many are subclinical, which means that there are few, or even no, outward signs that she is seizing, but these are just as damaging to her brain as other types of seizures.
The bottom line is that she is seizing even more than we thought, even in her sleep, and none of the medications are working.
They decided to remove some medications that are clearly not working, gradually wean her off of another that’s not working, and add some new ones. Her EEG the next morning did show some possible slight improvement in the number of seizures, as well as the spacing between them, giving us some bits of hope that maybe we are moving in the right direction.
They unhooked her and let us go home last night on these new meds, with the plan that further attempts at controlling will be done through continued communication with her neurologist while we continue charting any possible signs of seizure activity to determine whether we are seeing any progress or not.
The long-term plan is still implantation of a Vagus Nerve Stimulator (VNS), and we have a video appointment next Tuesday with our neurosurgeon to discuss plans for this.
Sadly, much damage has already been inflicted on Kathryn’s brain. She is no longer able to crawl, when she used move all through the house that way. On days that she can crawl at all, she moves very, very slowly, can barely hold herself up, can only go a very short distance, and sometimes her arms collapse under her causing her to fall. She can’t hold crayons or pencils, and she was SO close to learning to write her name by herself before this happened. We’ve worked on that skill for about three years, and she almost had it. She struggles to snap simple blocks together, when in the past she would snap them together in a long line that stretched all the way across the family room. Her speech is so slurred that it’s often almost impossible to understand what she’s saying, word retrieval plagues her so badly, and her perseveration (repeating words or phrases over and over and over again) is severe now. Her moods range from manic-happy to tearful and grumpy and sad. She even hit one of her sisters the other day, which is just completely out of character for her gentle, happy, and compliant personality. As soon as she realized what she had done, she dissolved into sorrowful tears. I fight tears myself as I type this.
I watch her fight so hard against all that is happening inside her brain. I can literally see her trying to pull herself out of the muddled muck that is her thought processes most of the time now, and trying so hard to stay focused or make her hands and body obey. It reminds me of that feeling of trying to wake up after anesthesia. But right now, the seizures are winning.
And no one knows if this loss of function is permanent or not.
We have reached out to her physical therapist to discuss starting regular sessions again (along with occupational therapy) to try to give her every chance of regaining these lost skills IF we can get the seizures under control.
One piece of happy news: the night we were admitted to the hospital, we also reached full funding for Kathryn’s seizure dog as the final donation came in! When I told her we had all of the money needed for her dog, she caught on to our excitement, and this was her reaction. The picture is blurred because I tried to snap a picture very quickly as soon as I saw that flash of our dear Kathryn and how fully she was grasping the significance of this news. In spite of the fuzzy quality, there is no mistaking our sweet girl behind those eyes, and the joy this news gave her.
Now we have a long wait (probably at least two years) to actually get her dog. I went to the gift shop and chose a stuffed dog for her, telling her that this one could be her “pretend seizure dog” while she waits for her real one. She, with lots of help from us, named her Stella.
Please pray for our girl. Pray for healing and peace in her struggling little heart. This is scary for her, and we see that fear and confusion in her face so much of the time now.
Please pray for our other kids. This is really hard for them to watch, and our sadness and concern affects them. Two of her sisters sat with Scott and me during that long seizure last Saturday night, and some of the others hovered in the hallway looking for anything they could do to help. This girl is so loved by her family, and everyone is hurting.
Please pray that we will not get so lost in our fear and our feelings of helplessness that we forget we can trust the One holding our baby in His hands. We can sometimes only whisper garbled prayers, but our hearts long to remember this truth:
“Whatever befalls God’s children — their joys, sorrows, comforts, crosses, losses — all are a part of a Divine plan and arrangement, whose issue and result is their good. That bitter pang which tore up my hopes by the root! that unexpected poverty! that anguished sickbed! that crushing bereavement! how can I write ‘good’ upon these? Many different colors, in themselves raw and unsightly, are required in order to weave the harmonious pattern. Many separate tones and notes of music, even discords and dissonances, are required to make up the harmonious anthem. Take a thread separately, or a note separately, and there may be no discernible beauty or use. But complete the web, combine the notes, and you see how perfect and symmetrical is the result. Here is the lesson for faith: ‘What I do,’ says God, ‘you know not now, but you shall know hereafter’ (John 13:7). The Great Physician knows that all the ingredients in His dealings are for our good. He mixes them.”