Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Up in the Air

There is not too much to report on Agnes since a few days ago, other than her overall condition appears to be stable and slowly improving. Yesterday she did very well maintaining a body temperature without the hot air blanket or the medicine that assists with perfusion. She is also in process of weaning down the hard-hitting narcotic pain killers. She is also clear of the intestinal infection that caused some swelling and “free air” in her belly. Her lungs sound back to baseline for her, which is to say they are stiff and slightly diminished on the left side, but at least she’s back to “normal.” She is happy on her home ventilator.

But today they decided to try stimulating her guts by starting tube feeds at a very slow rate, and she didn’t like it. She spiked a temperature and some formula seeped back out to her stomach where it appeared in the suction tubing. I guess that’s the nice thing about Agnes’ G/J tube: you can feed her guts while leaving the stomach open to suction, which helps prevent throwing up. So Agnes demonstrated an intolerance to food, so they stopped feeding her. I’m not sure what the plan is for restarting.

Plus it is not clear whether her shunt is actually working or not. I do believe that it was functional at the time of the CT scan a few days ago. But in the meantime, the neurosurgeon tapped off some fluid and that procedure demonstrated a very high level of pressure in Agnes’ ventricles. Plus today she was very sleepy. So…I guess we’ll see on Monday what the next CT scan shows.

All in all, we are still in a grey area. Agnes did improve her condition since last week; she is like a new baby! We are grateful for that and happy that she didn’t die. But as we go on, it is not clear whether this recovery is lasting, or if she is on her way to a relapse. We are very conflicted about how to proceed here. We were sad she was dying, but also a bit relieved that she wouldn’t have to suffer anymore. Now that she got better, it feels as if we are traveling the same road again, the road of suffering. The fact that Agnes did recover is a miracle and the mid-week news that her shunt was working felt like another miracle. Those events happened and many people derived spiritual benefit and faith, and trust in God because of those events. Now we know that thousands of people are praying to saints and to God on behalf of Agnes and our family, which is amazing. Even if Agnes takes another turn for the worst this weekend, that extra week she was here brought boundless grace to thousands of people. Who knows what she will do from this point forward, but every day she is here is a gift and an opportunity to draw close to the Lord and experience grace.

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What I Wore Sunday: November 17

Hi, I missed the link up last week because we spent 12 hours in the Emergency Department at Akron Children’s Hospital, but I’m happy to be back with Fine Linen and Purple.

100_1894This Sunday I briefly considered wearing the outfit I wore last Sunday, just so I could post it up on here, because it was a really nice outfit. But I decided not to. Instead, I went for my tried and true outfit that I often fall back on. Shirt and skirt both thrift store finds and well loved by me. Shoes Minnetonka Moccasins. Pink watch, Relic. Ring, Kay Jewelers substitute wedding ring when I had lost my real wedding band about a year ago. It finally turned up, but I still wear this “fake” one when my hands are fat and my real one doesn’t fit.

Anyway, I’m sure most of you come here to get Agnes updates, so here it is. I haven’t posted much this week because I’ve been in a really awful place in my head where I almost feel like it’s time to give up the fight and stop delaying the inevitable. I feel so ashamed to admit that, but I’ve written honestly on this blog before and I think it’s important for other parents of special needs, medically fragile, and gravely ill children to read real accounts of what it’s like.

So, Agnes nearly died on Monday from what they call a “pulmonary hypertensive episode” which pretty much means she freaks out so much she forgets to breathe, oxygen doesn’t get from her lungs into her blood, and her heart has no oxygenated blood to pump to her body. That got us thinking about Agnes’ End of Life and what that might look like, and what would we do, and how much treatment is too much, and what kinds of things would we want to go forward with and what would we want to refuse.

Agnes did recover from that episode on Monday, and no one is thinking that now is the time we need to discuss The End, but Jeremy and I wanted to get the conversation started so that when the time does come, we know what we want.

So anyway, I’m just looking at Agnes’ life she’s had so far, and I’m sure it’s going to be more of the same in and out of the hospital, a surgery here and there, long recovery times, always the danger of imminent death if her shunt fails, if her bowel gets twisted again, if she gets a cold, if she throws up and aspirates, on and on. And I thought, how much more of this is going to be worth it? I’m already exhausted emotionally and mentally and physically. I can tell Agnes is unhappy and uncomfortable being in the hospital yet again. What can we do for her that is actually going to make a real difference and help her to live comfortably and enjoy even a few enriching experiences?

I don’t really have a good resolution to this narrative yet, but I do feel a little bit better about it today than I did earlier this week. I feel a little bit more able to fight for Agnes and do what it takes to keep her alive. Really it’s a minute-to-minute struggle. I feel like a horrible parent for even thinking that maybe I don’t want to keep fighting for Agnes. Don’t I love her? Isn’t she my baby? Shouldn’t I love her and fight for her no matter what? That’s what all the other moms do for their special needs kids with complicated medical problems. All the other moms yell at hospital doctors who suggest it’s time for “nature to take its course.” All the other moms heroically bear the inconvenience of bringing home a kid on a ventilator, or giving tube feeds continuously. All the other moms have faith in their children to overcome even the steepest odds to live beyond expectation and achieve developmental goals all the medical professionals said would be unattainable.

So, that’s why I haven’t been posting this week.

Agnes is going back to surgery tomorrow afternoon to have her shunt revised and replaced. Then she just has to recover from surgery. The doctors have opened the discussion of sending Agnes home on a ventilator; Jeremy and I have to decide what we want by Wednesday probably. I’m not sure we really have a choice, though the doc says we do.

I can’t even write any more right now. Would you all please pray for me? And for my family and for Agnes. Thank you.


Jail time again

Agnes is in the hospital. She’s been struggling with throwing up this past week, and yesterday was really bad so her pediatrician recommended we go to the Emergency Department. Agnes has a history of bowel malrotation which will always put her at a higher risk for obstructions, plus she has a shunt that could easily malfunction or get infected. Vomiting is a symptom for both those problems, plus a host of others, so we went in.

They did x-rays of her chest and abdomen. They did a barium dye test of her bowels. They took blood samples. They took urine for a culture to see about a UTI. They took a trach culture. They took a blood culture. Agnes was super, super pissed at the doctors and medical staff.

This morning Agnes’ neurosurgeon wanted to take a sample of the cerebral spinal fluid that is draining through the shunt, but he wasn’t able to extract any where he thought it should have been an easy sample to collect. Along with that, Agnes’ blood tests showed an alarmingly high white blood cell count which indicates an infection. So she was rushed to surgery for the neurosurgeon to do what’s called “externalization” of her shunt. Basically, they just make a small incision in her belly and pull out the end of the shunt tubing that drains into her abdomen, then they collect the sample of fluid and hook up the shunt to drain into a bag that hangs next to Agnes’ bed. This is so that, if the shunt is infected, it doesn’t keep draining infected fluid into Agnes’ abdomen. It seems like a sensible precaution. They also started her on the courses of antibiotics, assuming she does have an infection, even though no cultures have shown results yet.

So, long story short, Agnes is in the Pediatric ICU on a ventilator, sedated after surgery, recovering from surgery and receiving IV fluids and medicine. They inserted a PICC line (peripherally inserted central catheter) which is long-term, stable IV access given Agnes’ history of being a difficult baby to secure IV access and take blood from.

Speaking of blood, she has been exceedingly stingy. It takes many many tries for someone to get blood from her for testing, and she never gives up enough. With the PICC, that won’t be such a scary problem so I’m glad they went ahead and did that already.

In the next couple days, we expect the cultures to start coming back with results and they will find the source of the infection. If it is the shunt, it will have to be replaced in surgery. She is already getting antibiotics, so in a few days she should be better. They also have to wean her off the ventilator when she is ready, and restart her tube feeding. They have been resting her belly yesterday and today, giving the medicine a chance to kick in and her body to wake up and start responding to the treatment.

Thank you all for your continued prayers. We thought we were maybe looking at the end of Agnes’ life this morning because she was in very rough condition just prior to surgery, but luckily and miraculously she made it through and is recovering. It made us cognizant that any issue that comes up could possibly lead to her death, and we are grateful for every day we have with Agnes still among the living!


So Far So Good…

Today Agnes moved off the ventilator and off the CPAP and is now breathing totally on her own! Yay! She is getting oxygen just like she did at home, with a mist collar just like at home. She is now back to her “baseline” which is an extremely relief. She does get an inhaled bronchodilator medicine which she did not have before, but other than that her medicines are the same, too. I am so proud of her!

The results of the echocardiogram show that Agnes’ pulmonary hypertension is no worse than it was before, and since she appears to not need ventilator support, the doctors have decided to not use the experimental medicine. That’s fine, I guess, but I am worried what Agnes will do when she gets mad and starts to desat like before. She didn’t really while I was there today, but the nurses did nothing more than diaper changes. I’ll be interested to hear how she does with a bath and trach care and whatever else they try tonight. If Agnes desats a lot, they may put her back on the CPAP with or without pressure support, I don’t know. I seem to have misunderstood the debate about the pulmonary hypertension medicine. I thought that if the echo didn’t look better, they would consider the medicine. I thought it was maybe about the medicine or continued vent support. But what it now looks like is, the echo looks no worse, and Agnes is currently doing fine without the vent, so no medicine. It’s about Agnes needing no help versus needing the medicine and¬†continued vent support.

So, we’ll see what happens in the next 24 hours. If Agnes keeps doing fine, she will move out of the PICU and back up to the floor, and she will be discharged at some point from the floor. If she keeps doing fine for the next day or two, I’m certain they will let us come home very soon since we won’t have to learn to use a ventilator and do a 24-hour care test. Agnes does need to get her feeds back to bolus rather than a continuous drip; that will take a day, maybe two days. And we will have to wait for the at-home nursing to get sorted, though hopefully we can have our previous nurses back. Agnes was approved for up to 12 hours of nursing a day, which will be a huge help! Thank you, Medicaid home care waiver! But other than the nursing, I don’t think we will have to wait for anything else before we come home.

Dare I look at the light at the end of the tunnel? Yes! I’m looking at it!


Transferred to the PICU

This morning around 1:00am Agnes was sent down to the PICU because she required more care than the floor upstairs could provide. She was having trouble holding down her feeds, and apparently she aspirated some spit up. This caused her O2 requirement to dramatically increase, on top of which, Agnes lost her I.V. access and no one was able to put another one in. So she went down to the PICU where they put her on ventilator support and kept trying to stick her for an I.V. They discontinued her feeds for awhile before restarting them through a special n/g tube that goes to the bottom of the stomach, in fact directly to where the stomach opens to the intestines. They also gave a couple drugs to help with the nausea and reflux. Once they finally gave up on the I.V. Agnes was able to settle and she had a decent morning. The lack of I.V. was limiting to her care, and around mid-afternoon she started to repeat the episodes from last night with extreme O2 needs and multiple desats. She is not coming home tonight, needless to say. She is still on ventilator support, and we just got a call at home that they installed a special “central line” I.V. in her chest so they can start giving additional fluids and some I.V. medications.

Her right lung showed up entirely cloudy on the X-Ray which means a great many of the alveoli are closed with aspirate. This will heal with time and support. Hopefully it doesn’t take too much time or support!

On the positive side, the neurosurgeon said the shunt looks great and the sutures look great. If Agnes didn’t have the respiratory failure she could go home.

She will continue to have low pressure headaches for about a week. We are hoping and praying she does not develop an infection because of the aspiration, or because of the central line, both of which do carry risk of infection. Agnes is already more susceptible to infection because of her trach. So. That’s what’s going on.



Agnes had her shunt placement surgery this morning and everything went well. The neurosurgeon said there were no problems with her surgery, and the procedure took exactly as much time as they told us it would when we got briefed in pre-op.

Yesterday when a pre-op nurse called with some instructions, I told her that Agnes had come down with a wet cough and needed more frequent suctioning. The nurse told me to take Agnes to the pediatrician because surgery was a no-go if she has an infection. So I did and it was not fun taking Agnes and Stephen to the doctor’s office by myself, but we did it. It was good that I went because the doctor gave Agnes a green light for surgery, provided she did not become any sicker overnight. She didn’t and we went to the hospital.

After the surgery went ahead, I felt pretty relaxed. The neurosurgeon’s confident remarks about how “easy” a shunt placement is encouraged me.

Agnes went up to the same hospital floor she was on before, so we recognized a bunch of the nurses. They all remembered Agnes from before. Agnes has been rather touchy all day, crying off and on and having borderline O2 sats. This is partly because her pulse-oximeter probe keeps lying about Agnes’ numbers, but this is usual behavior for a pulse-oximeter probe. The lying sons-of-guns. Agnes tolerated pedialyte and half-strength feeds over the afternoon, but when the nurse started full-strength feeds, Agnes started puking a lot.

Apparently this is not unexpected. Since Agnes has been used to high pressure in her head, now that the shunt is draining out the fluid and the pressure is normalizing, she is suffering “low pressure headaches.” She needs to get used to the new pressure levels in her head, which will take a couple days. In the meantime she will get half-strength feeds and anti-nausea meds. Of course it doesn’t help that she has to lay absolutely flat for the first 24 hours after surgery so the shunt doesn’t drain too much too quickly. Agnes suffers from reflux and we always keep the head of her bed elevated, so she is not used to being flat. I’m sure that bugs her too, in addition to all the pokes and wires and tubes she acquired for her stay.

I’m hopeful that she will start to improve tomorrow.

Oh, and the sutures on her head are really ugly! I know they are fresh, but holy cow. A huge 3-D black line of ick with metal staples that look just like the kind you buy at the office supply store. There is a suture in her abdomen too from where they went in to poke the shunt end into her belly. On the plus side, the line of catheter under her skin is hardly noticeable. I can’t even see it, or feel it when I lightly touch. The scars will heal up, and once Agnes gets hair on that side of her head, you will hardly be able to tell she has a shunt.

I expect her to stay in the hospital for a couple nights. Here’s hoping this doesn’t turn into another long visit!


What I Wore Sunday: September 15

Sunday 9-15-13 boot Sunday 9-15-13Today we had some positively Autumnal weather. It was nice and cool and crisp, perfect for the first time taking Agnes to church since coming home. Liturgy was earlier than normal because our priest is visiting family in Ukraine for a month, so we have a substitute priest who also takes care of his own parish in Solon. I bet he probably had to say Liturgy here, then scoot up to his own parish in time for Liturgy there. I am grateful he came; I like going to Liturgy, and he was a really good singer!

So, we had to get up and out the door in record time this morning, taking Agnes and all her gear, and Stephen, and we all had to look nice too! I took the opportunity to wear some more fall-appropriate clothes, including my new pair of boots!

The boots are Clarks, Ingalls Delaware style, in “grey” which is actually taupe. I purchased them through Amazon using a ton of change I found lying around the house. We took the change to a coinstar machine that has a feature where they don’t charge a service fee if you convert the coins to a gift card. So we used the coins to get an Amazon gift card, which I then used to subsidize the purchase of these super nice leather boots. They’re a real brand, and high quality, and I would not be able to justify their purchase if I didn’t have the “free” money to help! I wear boots almost exclusively in the winter with my skirts, so I needed to get a style that would be comfortable and attractive for everyday wear. I’m pleased with them so far! I think they will really hold up to my abuse!

The skirt is from a bag of clothes someone gifted to me when I was pregnant with Stephen. The shirt is Motherhood Maternity. I opted not to wear a veil today because I wasn’t sure what would shake down with Agnes and I didn’t want to worry about my veil getting in the way if I needed to emergently replace a trach tube or something. Plus, this week I got my hair cut for the first time in a year. I didn’t intend to go that long, but it was hard for me to find a time to do it! The stylist took five inches off the bottom, then used thinning shears to remove some the extreme thickness. I really like the look and feel of my new ‘do. I think I will always ask for thinning from now on!

Agnes did a great job at church. We got there a little early so we could set up her tube feeding before Liturgy started, and she pretty much snoozed through most of the liturgy. She did start fussing more towards the end, so I got her out of her seat to hold her and she calmed immediately. We lugged her travel bag, pulse-oximeter, oxygen tank, and feeding pump. We took up an entire pew! After Liturgy we went down to the basement for coffee and everyone was excited to see her back. They exclaimed over how big she is compared to the last time we took her to church a month ago. They said she is cute. We talked with a lady whose younger son was born with some issues similar to Agnes, and he is now a more or less healthy nine year old (I think he’s nine). He is an altar server and very sweet. He played with Stephen the whole time we were talking to his mom. We are so blessed by this church community. Everyone is so supportive, and no one seems freaked out by our special baby. A few of the ladies had the opportunity to hold Agnes, and she loved it.

Agnes has definitely learned that if she fusses and cries, someone will pick her up and snuggle. She adores being held, and pitches a royal hissy fit in her crib until someones comes to attend to her demands. It’s a good thing she is an adorable little miracle baby!

Linking up with Fine Linen and Purple. Go check it out!


Agnes is Home, Again

100_1768We weren’t sure Agnes would really be coming home today when we showed up at the hospital with all her bags and the stroller. The room was full of nurses and physicians, and they were all surrounding Agnes’ bed while the monitor flashed and beeped that her sats were low and her respiration rate was high. “We’ve tried everything,” they told us. I guess they even did chest x-rays overnight, which tells you how at-a-loss they were as to what the issue was. Agnes’ pulmonologist decided to give Agnes a different size trach tube to see if that helped to get Agnes’ sats up. “But,” Dr. Toder said, “she has to be fantastic after we change the trach because I don’t feel comfortable sending her home so touchy.” So we changed the trach tube. I did it, and I had an audience of at least three or four people. Agnes took a while to calm down, but she did calm down and Dr. Toder came back and conceded that she “feels a bit more optimistic than this morning” and suddenly everyone was working furiously to get Agnes’ butt discharged from the hospital. We hooked her up to the portable oxygen tank and the rental pulse-oximeter. We put her in the car seat. We wrestled her and all her gear (four bags full!) out to the car that had been baking in the hot, hot sun all day. We drove Agnes home. I suctioned her in the car (might as well get the first time over with and out of the way). Agnes puked as soon as we got her home. So we changed her trach ties. She was mad as heck, so we dialed up her oxygen a couple times. During her first feed at home, she puked again. I didn’t bother changing her ties again. They didn’t get very messy. We suctioned Agnes many times. Agnes was mad as heck. During her second feed at home, my mom held her upright for the entire hour-long feed, plus twenty minutes after the feed ended. As soon as we put Agnes back in bed, she puked again. Only in the last hour have her sats come up and stayed up. The docs want her to be at 95% oxygen saturation all the time, and that has only happened within the last hour. Hopefully soon we can turn down the oxygen concentrator to where it is supposed to be. I won’t rush to do it until it looks like Agnes is settled.

I’m really scared about having Agnes home. I feel like she was better off in the hospital and I should take her back because they let her come home before she is ready. The first few hours she was home, I felt like everything I did made her condition worse. I’m sure those first few hours are the hardest for everyone, but they were really hard! I sincerely hope they were the most difficult, because if that is the way my life will be like all the time from now on, I think I would rather not.

Agnes finally fell asleep after the last puke, and we’re starting another feed, so fingers crossed she likes it this time. The home care nurse will be arriving any minute to get oriented. I better go, I think she’s here!


Nose Dispenser

brrrrrrrrrrrrrrrrrrr [that’s a drumroll, btw]

Agnes is coming home tomorrow!

Unless, of course, something goes horribly wrong. But that is not likely. Jeremy and I have fulfilled our caregiver trials, and my parents, too. The home care nursing has been totally lined up for all seven days of the week, and all Agnes’ equipment and supplies are in the house. Supplies that include…nose dispensers. The thing about tracheostomies is, they are essentially an open tube that leads directly into a person’s airway. People with normally functioning airways breathe through the nose and mouth, which serves to humidify and warm the air before it gets to the lungs. People with trachs bypass the nose and mouth, so the air that goes through the trach tube is chilly, dry room air. That is, unless there is an HME on the end of the trach tube. That is a Humidity and Moisture Exchanger, also known as an artificial nose. The HME traps moisture from a person’s own exhalations, then the new air passes through the humidified filter, thus supplying moisture to the new inhalation. It’s a pretty neat invention, and the noses come packaged in a box with a tear-away flap like you see on a box of tissues or on a box of pop cans. The HME’s come packaged in a nose dispenser. Hee. Hee hee.


100_1766It will be a relief to have Agnes at home, though I confess I feel kind of numb about the news. It’s hard for me to feel strongly about Agnes news anymore, whether the appropriate reaction is excited, angry, sad, or whatever. There is just so much thrown at us, and so quickly, that I’ve become exhausted by extreme emotions. Plus, Agnes’ condition changes literally from hour to hour some days, so there is no point in investing in an emotion. Anyway, I guess what I’m trying to say is I am cautious and reservedly excited about Agnes’ homecoming tomorrow. And, I’ll believe it when I see her in bed at home. And, I’m well aware that it’s not impossible that something will come up to delay her homecoming. And, I’m afraid to feel excited because that will open up a place for me to also feel extremely nervousscaredterrified-paralyzedsaaaaaaaaaagh.

So tonight I will be organizing Agnes’ equipment and gear, and making sure I know where all her stuff is stored, and putting sheets on her bed, and cleaning house a little. Part of my task will be to weed through Agnes’ clothes and pull out the suits that are now too small, and the suits with zippers. Since I need access to Agnes’ g-tube every three hours, zippers are not practical unless I feel like leaving Agnes half-undressed for each feeding. I do want to give a shout out to Cheering on Charlie. I just got your package today. Thank you again for sending Agnes some snappy baby clothes!


The Reasons Why

I just realized today that my last several posts have been about everything except my infant in the hospital. Agnes has been in the hospital this time for just over three weeks, and she isn’t going to come home until early next week. We are back in the routine we established when Agnes was in the NICU: wake up and get ready for the day; go to the hospital; stay as long as we can until Stephen gets bored and loses it; come home for the afternoon; putz around the house; maybe go back to see Agnes after Stephen goes to bed; sleep; repeat.

Actually, for the past week, I haven’t even gone back at night to see Agnes for a couple hours after Stephen goes down for the night. I just can’t. I’m burnt out on hospital.

I’m sick of the hospital. I don’t remember what life was like when we didn’t have to go to the hospital every day. I don’t remember what it was like to have Agnes at home. Every time we drive somewhere, Stephen thinks we are going to visit “baby Agnes.” He has a routine when we arrive at the hospital. He pushes the button to open the automatic doors from the parking deck into the hospital building. Then he runs over the pedestrian bridge across the street. Then he has to touch three things: the giant rubber ducky art made out of gum balls, the 3-D timeline of Children’s Hospital history, and the portraits of the “doggie brigade” therapy dogs. Then he says, “horse, horse,” when we walk up to the horse sculpture. Then he gets a sticker at the information desk. Then we go up to Agnes’ room.

I don’t want my son to have a routine about going to the hospital.

Another thing that is happening to me with Agnes being in the hospital is I don’t feel connected to her anymore. She doesn’t feel like my baby, and I don’t ache to see her and hold her anymore. It gets less and less hard for me to leave her room every day. Of course I’m concerned about her, and I want her to come home, but I feel really detached from her on an emotional level. I do her care when we are with her, and I want her to be comfortable. I get irritated on her behalf when I can see that she is uncomfortable because of a dirty diaper, or her swaddle is tangled, or she has slipped into a strange position in bed. I want to fix those things. But I don’t feel a connection to Agnes like what I think of as a “normal” mother-baby connection.

It’s very hard on my family to have Agnes in the hospital and being medically fragile. I think the stress of that situation has just finally worn me down. I can’t think about it, and the more time I spend at the hospital, the more worn down I feel. I’m starting to resort to coping mechanisms more. I watch stupid T.V. programs in the evening and I let Stephen watch more T.V. during the day. I need to drink multiple cups of coffee to keep going during the day. I need to take naps more often than I used to. Instead of one beer with dinner, now I sometimes have a drink with dinner and another one later in the evening.

Finally, another reason why I haven’t been writing about Agnes is nothing is really happening. She is stable and her condition is pretty much unchanging. The amount of oxygen she gets changes every time we go there, but she usually gets around 30%. Her trach and g-tube sites look good and healed. She has the most horrible diaper rash I have ever seen ever. The doctor even prescribed a cream they use in the burn unit to heal peeling, excoriated burn wounds. Maybe her butt is looking better today. Maybe. But other than the rash, she is doing fine. Our caregiver training is nearly done. We all need to take a CPR class on Saturday, then we all get to do our 12 hour stays. My parents will do theirs 6 hours plus 6 hours over the weekend, and Jeremy and I will do 12 hours on Monday. Tuesday is Agnes’ tentative discharge date, depending on whether we can get the last two shifts covered for nursing assistance.

I will be relieved to have Agnes home. Maybe when she is home I will start to feel more connected and caring toward her again. It will be nice to not go to the hospital every day.


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