Laughing, Weeping, Living

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

Other People’s Babies

You know it’s spring time when all the ladies you know start having their babies. Several of my facebook acquaintances recently gave birth to their beautiful new babies, and the newborn photos are adorable. The kiddos are so cute, and sleepy, and they have sweet little hands, and I could just eat them up. The little boys wear hats with an owl face and the little girls are in cute pink ruffles. I really like seeing these children of my friends. I am happy for the families who welcome these babies.

When Agnes was born, I joined a couple online networking groups for support. Mommies of Miracles and Moms of Trach Babies are the two main groups that I joined. I am still linked to these groups since they encourage the moms whose children have passed away to stay in touch with the community. I have been able to comment on a couple questions that have come to the discussion board, and it does help me feel connected to a community. The members of these groups submit charming photos of their “miracle” children with complex and often debilitating medical needs. Children in wheelchairs, children who can’t talk or see or hear, children who are dependent on feeding tubes, trachs, regular I.V. treatments, children who require multiply surgeries and hospital stays. Beautiful children who are always the light of mommy’s eye, and she loves this child so much, and she would do whatever and anything to help this child have a better life.

I love to see pictures of these children, too, the children who are alive despite grim diagnoses and shortened life expectancies. I love reading about how these children have overcome difficult circumstances in order to thrive in their own special way.

It does get really hard for me, though, to read about these miracle children. Harder than reading about healthy babies. My friends’ healthy babies are beautiful but it’s the stories of the medically complex babies that break my heart.

Earlier this week I saw some absolutely gorgeous photos of a little boy in the Mommies of Miracles group, and he has a very similar genetic condition to Agnes. Not the same, but very similar. His story was full of uncertainty, but he now appears to be thriving with the help of a feeding tube, and that’s it. His eyes were so big and blue, and he looked so alert, and he looked like Agnes would have looked if she ever opened her eyes. And he’s still alive. And doing well. With a condition so similar to what Agnes had. And it’s stories like his that are so hard for me to see. I am happy for that little boy and his family; he is a beautiful child. But I am also intensely sad and a little bit jealous.

This experience makes me wonder if I should still stay connected to these groups. Is the connection helpful for me or does it simply bring heartache? I don’t know. I love seeing the photos of miracle babies, but each one is a reminder that my miracle baby is not here anymore. I can cheer on these children and pray that they continue to beat the odds, but at the same time I am painfully aware that my child did not beat the odds.

Baby Agnes, pray for me.

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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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Agnes’ Tricky Shunt Surgery: UPDATE

Agnes’ shunt surgery yesterday afternoon was successful. The surgeons were able to place a V-A shunt on Agnes’ left side without a problem. This morning they sent Agnes to do a head CT scan just to check up and everything looks like it is working.

Of course, the big unknown factor is Agnes’ pulmonary hypertension and whether the pressure in her heart will prevent the shunt from draining properly. This may take a while to develop fully, but things appear to be working at this time. My feeling was that if the shunt didn’t fail right away, we have a pretty good chance that it will continue to work. Agnes has been more awake today and she got mad a few times, and the shunt still appears to work, so I  am encouraged.

In other good news, Agnes got back on her home ventilator today, her tube feeding is back to her normal rate and schedule, all her home medications are going without any problems, she is tolerating routine care like baths, diaper changes, and trach care. Her incision sites still look gross of course, but they are healing according to expectations. Her belly is soft again, though still a bit more distended than what her normal should be. No one is concerned because that distention she had was more than likely shunt-related, and now that issue is resolved. It will take a little time for her fluids to balance out again with all the recent changes in shunts and other drains.

To top off the surprising news, we were told today that Agnes will move out of the PICU and up to the regular floor for trach and vent dependent children. This is mostly because the PICU is full to capacity and they need Agnes’ room for an incoming, critically ill child, but it is all because Agnes continues to improve and the PICU isn’t doing anything for her that she can’t get on the regular floor.

And finally, word on the street is that Agnes will come home next week. Like, early next week. Like, if she continues to do well and the shunt appears functional, and all the home care gets organized, she could be home for the New Year. Whoa.

We were expecting Agnes to have a Nissen wrap surgery this admission, as well as an I.V. port installation, but those two things now seem to be optional at this point. The intensive care doctor is convinced that Agnes’ recent gastro- problems were a result of the extra fluid in her abdomen, and now she is tolerating food well, and everything seems to be normal in that area. So, a Nissen is not indicated. As for the I.V. port, that may be something for Agnes in the future, but it is not emergent and can definitely be scheduled if and when the need arises. Plus, the neurosurgeon wants Agnes to have a chance to totally recover and heal from the shunt surgery, so we’re looking at weeks at least if we decide she needs the other stuff sooner rather than later.

So.

Big news.

We are shocked still, and we can’t even feel excited or happy because this is so unexpected. I am convinced there was some miracle here. The story changed way too quickly to be entirely medical. Someone out there must be a really fervent pray-er. Or some saint intercessor is very powerful. I guess we’ll never know the agency of this miracle. God is good.

Thank you all for your prayers. Obviously they are working!

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Agnes is Home, for the fourth time

I have been extremely lax in posting, but I find it difficult to get away for as long as it takes to write something thoughtful and profound. Or at least something thoughtful. Or at least something. I am stealing a few moments here to write a quick update on the latest happenings in Agnes’ saga.

Jeremy and I passed all our training challenges and did a 24-hour shift of care at the hospital. That went very well, and I’m glad we did it because now if one of Agnes’ home care nurses doesn’t show up, we have some experience with what happens over the course of 24 hours. Agnes is really easy at night, and it is nice to know that going into a no-nurse emergency, because then all we really have to worry about is how do we stay awake.

Anyway, Agnes came home in an ambulance on Wednesday afternoon. A transport team took her from her room and rode with her home, and I rode in the front of the ambulance. An employee from the equipment company and the case manager from the home care agency both met Agnes at home. We all got her settled and hooked up to her home machines. She did settle in very well. She didn’t throw up during the first couple days at home like all the other homecomings. She didn’t take a sudden turn for the worse within the first few days like all those other times. Her respiration still seems fine. Her nutrition still seems fine. Her belly is still distended, but we are measuring it every day and so far there is nothing alarming. Agnes is sleeping a lot yesterday and today, but when she is awake she seems content. She likes to watch Stephen play. She likes to look at the dog and the cats. If a cat jumps up on my lap while I hold Agnes, she is very interested in that. She doesn’t really like to touch the fur, but she likes to watch them. Another nice thing is Agnes has no doctors appointments soon after discharge. I think her first appointment out of the home is on Dec 23rd. She does have some people coming to the house to visit her, but I am happy I don’t have to drive her back to the hospital campus over and over within the first week of being home. That feels like a real luxury.

We have twelve hours of home nursing now, from 7pm to 7am most nights, and 6pm to 6am on Saturdays. So far I have not been able to take advantage of an earlier bedtime; I learned to stay up late when we were getting 11pm to 7am nurses, and I can’t kick the habit! We are trying to settle in to a new routine that doesn’t involve going to the hospital. Also, I know Christmas is in a week and a half, but we have done nothing to get ready yet! No gift shopping, no baking, no dinner planning! I don’t know how we’ll get it done, but we will.

Our biggest prayer right now is that Agnes stays well enough to be home for Christmas. That would be so special, and her first holiday at home.

On the day of discharge, waiting for the transport team to show up.

On the day of discharge, waiting for the transport team to show up.

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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.

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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!

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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.

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SHUNT–Update

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!

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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!

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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_1764

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!

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