What I Wore Sunday: November 24 Stephen is Chrismated!

Hi, linking up with Fine Linen and Purple. This week I worn a long black dress from Liz Lange Maternity for Target; black sweater from Old Navy (it was a gift a few years ago), my Clarks boots. Sorry I don’t have a full-length photo. We were taking pictures of more important things.

After the Liturgy.

Stephen and his chrismation sponsors. They are Agnes’ godparents!

This Sunday was very special for our family; Stephen was fully initiated into the Catholic faith by receiving the Mystery (sacrament) of Chrismation, and Holy Eucharist. In the Eastern tradition of Catholicism, infants receive baptism, chrismation, and Eucharist at the same time, but Roman Catholic babies receive only baptism as infants. Stephen was baptized as a baby, and yesterday he received the other Mysteries. We are so happy for him! We had planned for Stephen and Agnes to do this at the same time, so Agnes’ godparents were already planning to visit for the weekend and sponsor Stephen for chrismation. When Agnes went back to the hospital, we decided to go ahead with Stephen’s chrismation. He actually had already received his “first” Holy Communion on Thursday: Fr. Sal gave communion to his own small child at Liturgy, then Stephen was next in line. Fr. Sal offered to Stephen out of habit and Stephen actually took it! So yesterday, Stephen made his “second” Holy Communion. Oh well, it worked out fine in the end!

Stephen’s sponsors remove his footwear, and unbutton his shirt.

Fr. Sal anoints Stephen very quickly!

Stephen receives his “second” Holy Communion.

I don’t know if you have ever seen a two year old child receive an anointing on forehead, eyes, ears, chest, hands, and feet, but I can tell you it goes very quickly. Fr. Sal started saying “receive the gift of the Holy Spirit” or whatever the exact words are, kind of hovering his hand and when he spotted an opening, he swooped in and anointed everything super fast! It was kind of funny. Stephen was in shock. He was bewildered at the speed with which his sponsors removed his shoes and socks and unbuttoned his shirt, then all of a sudden Fr. Sal was attacking him with fragrant oil. He took communion again, which I was a little nervous about because toddlers are capricious, so all in all it was a wonderful event for our family!

Turkey cookies, idea from Pinterest.

After Liturgy, the parish hosted its annual Thanksgiving dinner complete with all the trimmings. I had asked last week if they still needed any contributions, and I was told to bring a dessert that would appeal to children because I guess kids don’t like pie. So I found a cute project on Pinterest and it actually turned out really well! That doesn’t happen so often with those cute Pinterest ideas, but this time it worked!

The special thing about this dinner was the parish donated all the proceeds from the raffle contest to Agnes! Jeremy and are so blessed by Holy Ghost, and we are overwhelmed by the generosity and caring of the parishioners. Because of the raffle money, we now have enough funds that we can go out this week or next week and buy a van for Agnes with cash. We cannot express enough how grateful we are for our parish family. It truly was the working of the Holy Spirit for us to end up at Holy Ghost.

Agnes Seems Worse

Agnes has been having a couple of rough days. She has these episodes where she gets upset, and then desats and her heart rate gets too high, and she starts to turn blue, and the nurse has to “bag” her to force in air because even the ventilator can’t work when Agnes is fighting. Then they give a dose of I.V. sedative and Agnes calms and goes to sleep.

That is no way to live, and the docs need to know why this is happening, or at least find a way to prevent and minimize the occurrence, because they can’t send Agnes home if she needs to be rescued from acute respiratory failure once or twice a day.

Today they changed a setting on her ventilator hoping that may help, and they finally added regularly scheduled doses of sedative, which Agnes could very well use long term even after she is discharged.

The pulmonary specialist who is on call this weekend intimated that December 4th is not a realistic date for Agnes’ anticipated discharge, since they still need to do a bunch of legwork to discover the source of these critical episodes. Plus they changed a setting on the vent, so the “stable for two weeks” period starts over today.

And yesterday they took a bunch of blood samples for diagnostic tests, and found that her white blood cell count is elevated. Again. So they took the full selection of samples for culture and we’ll see if there is an infection. Again. And they’re giving 48 hours worth of antibiotics. Again. At least they are leaving her shunt alone this time.

This Post Brought to You By Chocolate and Red Wine

So, this week has been a very busy week. We have made some major decisions regarding Agnes. I have had a major turn of heart.

On Sunday I wrote and I was at the bottom of my reserve. Hope seemed so pointless and the prospect of continued medical care for Agnes seemed overwhelming and also pointless.

On Monday a new intensive care doctor came on rotation at the PICU, and we had a long chat with him about Agnes history and possible long-term courses of action. He was very thorough and quite lucid in his summary of what’s going on with Agnes. I was convinced by his assessment, and I appreciated that he outlined all the possible routes we could pursue at this time.

One route that Jeremy and I could choose is the Medical Intervention Path. This course of action would see Agnes on a ventilator full time, at home, and receiving therapies and treatments to maximize her potential and prolong her life. With this route, we would continue to opt for diagnostic testing in the hopes of uncovering information about her condition, and come to a fuller understanding of what treatments would benefit. If Agnes becomes ill, we would choose any available treatment to help her be well. She may continue to be in and out of the hospital. We would continue along this route until we reach a point where it seems like we are doing things to Agnes that provide little benefit, cause pain for little reward, or otherwise seem to be “unnecessary” prolonging of her life.

The other route Jeremy and I could choose at this time is the Quality of Life Path. This course of action would see Agnes weaned off the ventilator, if possible. If that is not possible, that would be The End for her and we would make sure she is comfortable and happy. We would not opt for continued diagnostic testing, unless the tests are relatively painless and quick. Agnes would receive therapies and treatments to maximize her comfort and enjoyment of her environment, but not necessarily prolong her life, nor maximize her potential. If she hates something, we would not continue doing it, if discontinuing the activity is an option. If Agnes becomes ill, we would evaluate whether treatments would “unnecessarily” prolong her life, or if it is a minor illness she could make it through with relatively little discomfort.

On Monday, Jeremy and I opted for the Medical Intervention Path. Agnes clearly benefits from being on the ventilator. She has very little reserve to fight illness: if she gets what would be a minor illness for us, it could kill her. Really. The ventilator will hopefully give her a backup so that if she gets a cold or something, she can cope and maybe not die. Or maybe not wind up in the PICU. The hope is that Agnes will only need the ventilator for short term, through the winter “respiratory season,” as they say in the hospital. In the spring, she may be able to wean off the ventilator. So Jeremy and I will give it a whirl. We hear stories all the time of special needs kids who were previously ventilator-dependent suddenly being able to wean off the vent. It could happen that way for Agnes, too. But if we don’t try it, she is guaranteed to become gravely ill and possibly die.

So, as you can imagine, this was an enormous decision to make. But you know what? I feel good about it. On Monday when we were talking with the doctor, I felt clear-minded, and the course of action we should take was obvious to me. Of course Jeremy and I are nervous about bringing Agnes home on a ventilator, but we both know it is the right thing to do. I know my turn of heart was because of all the prayers you all sent up for me and my family. I can’t thank you enough.

That is not to say that now we all feel just relieved and thrilled and light-hearted, of course not. It is still a daily struggle to cope with stress and the overwhelming burden of caring for a gravely ill child. Hence the wine and chocolate I am currently enjoying. I do feel relieved that the decision is made, but coming to terms with the reality of it will take time. We have only just begun our caregiver training for the ventilator that Agnes will use at home. There is a lot to know. And Agnes is still more or less recovering from the surgical procedures she had earlier in the week, so we haven’t really seen how she is awake and alert while on the ventilator. What if she hates it? She has had a few episodes over the past couple days where she has become extremely agitated and upset, and morphine was the only thing that finally calmed her. We think it is because she is still in pain and ouchy from her surgeries, but what if it is because she hates the ventilator?

Even though the ventilator is meant to give her time and to support her breathing, it is not a guarantee of health. She may still end up back in the hospital, gravely ill. Or she may still have a pulmonary hypertensive episode that is so bad it leads to cardiac arrest. That is a possibility for her in her condition. There is too much going on with her for there to be any clear answers. I think I would be devastated if–in the end, for all the trouble we are going through with the ventilator–it doesn’t actually make a difference.

But, we’ll see. Agnes could be coming home during the first week of December if she tolerates the ventilator, and we get home care nurses organized, and we complete our training, and we make the necessary electrical modifications in our home. There is a lot to do to get ready for bringing home a kid on life support machines.

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.

This 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.

The Little Blue Pill, and other Agnes updates

Agnes continues to hang out in the Pediatric ICU at Akron Children’s Hospital. She seems to be very touchy and possibly in some pain; she fusses and starts to breathe really fast and her heart rate gets much faster anytime anyone does anything, however minor. She is receiving doses of morphine, versed (a sedative), and tylenol as she needs, which seems to be fairly often. Last night the PICU docs attempted to switch Agnes over to CPAP plus pressure support, and then to CPAP, but she didn’t like it and her lungs actually looked worse when they checked with an X-Ray this morning. She has lost some ground that now must be regained.

Meanwhile, we are still waiting for all the lab work and various cultures to produce results. So far, the only culture to show growth is the trach culture, but that is not unusual for kids with trachs and the doctors don’t think that is the source of her infection. The working diagnosis is shunt-related. I guess the shunt was malfunctioning slightly, which caused Agnes to vomit. Her neurosurgeon replaced part of the shunt in the OR when he externalized it. It is still draining to a bag outside her body while we wait for the Cerebral-Spinal Fluid (CSF) culture to show results. They do suspect the shunt is infected because the preliminary culture of the CSF showed elevated white blood cell counts there. We won’t know for sure until tomorrow.

Also a cardiologist saw Agnes and another echocardiogram was done. It showed significant pulmonary hypertension, worse than Agnes had before. So the cardiologist decided to start giving Agnes Sildenafil. This is the medicine used off-label to treat pulmonary hypertension in children. The FDA has recommended that it not be used in this manner because one study found that a few children died. The PICU doc I saw today explained that it is generally accepted that these children in the study died from their diseases, independent of the medicine. So, Sildenafil is used around the country to treat children with pulmonary hypertension. Sildenafil is also known as Viagra.

I wish I didn’t know that.

Anyway, I am glad Agnes is getting this medicine; I think it will help her. The risk of death for her will not be significantly increased by using this drug. The doctor told me that she has a very high risk of sudden death anyway, so…yeah.

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!

7 Quick Takes: November 8

Linking up with Jen and the gang at Conversion Diary. I missed last week, but I’m happy to be back!

1. So, it’s really nice having Agnes at home and all, but I did have a lot more time to do stuff when she was in the hospital. Please don’t judge me, but I did really enjoy having time to blog in the evening after Stephen went to bed, or to sleep in past 7 a.m. Plus it’s super stressful having both kids at home. I know it’s super stressful having more than one kid as it is, but with Agnes, I’m pretty much chained to her bedside since she’s connected to two to four machines at any given time and her cords only reach so far. I spent most of my day today sitting in the chair near her bed, holding Agnes in one hand, entertaining Stephen with books and coloring in my lap, and wiping his runny nose with my free hand. It wasn’t the worst day I’ve had, but it kind of sucked.

2. At least there were some funny moments. For example, Agnes’ pulse-ox monitor stopped reading for some unknown reason and it was making that horrible “beep beep-beep” sound. I couldn’t silence the alarm because I had just gotten Agnes settled with me in the chair and her feeding pump running, so I asked Stephen to push the “yellow button on the monitor.” He did it, and the cursed beeping was silenced. That’s my boy! He likes Agnes’ stuff: her pusle-ox monitor, oxygen tank, suction, cords, her trach, all of it. He knows what all the stuff is and what it’s all called. Smarty pants.

3. Also I took this picture last week. Apparently this is the correct way to eat pizza.  Stephen eats much of his food in a similar manner. He takes a few bites out of eat sandwich half before going back to finish. He eats half of each cracker first. I don’t think he’s protecting his plate from mommy and daddy thieves since we take his pieces often even if he has partially eaten them. I think he just likes to do it this way.

4. While Agnes was in the hospital she outgrew some of her cute newborn size clothes. I was sad, until I realized that they are the perfect size to cover those “fluidized positioners” we got when Agnes was discharged. I guess they can only be used for one patient, so we got to bring them all home. I think the clothes are way cuter than the thin hospital covers the positioners came with.

5. We have had a good response to our fundraising website. We are still in need of a van to transport Agnes around. Our little car is tight in the backseat with a toddler car seat, Agnes’ car seat, and the adult who rides with Agnes. It’s ideal to have an adult caregiver riding to watch Agnes, just in case she gets into trouble. The monitor is often unreliable in the car; I need to be able to see her color because she gets so worked up. The hard part about riding in the backseat is, I can’t even buckle my seatbelt in the back because there is no way I can reach the buckle. And my hips are wedged between Agnes’ seat and the door. God forbid I actually need to do something in an emergency like suction her trach or get in her travel bag for the ambu bag because she is in distress. I can’t really even reach her bag even though we drive with it in the car, in the front seat. There isn’t enough room to drag the bag into the backseat without clobbering Stephen in the face. And even if we got the bag into the backseat, there’s nowhere to put it. If Agnes had an emergency while we were driving, we would have to find somewhere to pull over, stop the car, leap out and go to the front passenger door to get the bag, take the bag to the backseat, get out the supplies that we need, then get to work on Agnes.

So, if you want to make a small gift to help us purchase an adequate used minivan that will afford us the interior space we require, we would be eternally grateful!

6. I have to put this photo on even though it is so dark. Earlier this week, Stephen requested to take a nap. I was so surprised, but I put him in bed thinking he would change his mind and not fall asleep. But he did fall asleep! It was nice; I held Agnes in her chair and lolled around for an hour, recharging. When I went to get Stephen up, he was still fast asleep. I had to sneak a picture, he looked so peaceful and adorable with all his stuffed animals and the blanket up to his chin. He has his platypus which has been his special lovey for just over a year, now. I’m not sure why he picked that of all the stuffed critters, but he did and pretty decisively. Too bad it’s a “retired” Beanie Buddy first generation Patty the Platypus that we have to scour Ebay for to replace. He has two that we rotate–one to wash, one to wear. He also has a monkey that has a removable scented pouch in his tummy that you can microwave for warm, soothing scent. Stephen doesn’t like it warm, though. He just likes to change the monkey’s diaper using his own diapers, which I think is weird and Jeremy thinks is hilarious. Hmph.

7. I heard this song on the radio the other day and I really like it!

Enjoy your weekend!

What I Wore Sunday: November 3

Linking up with Fine Linen and Purple.

Today we got to go to church as a whole family! And we didn’t have to visit the hospital afterwards! Yay! In other awesome news, I managed to get Stephen to go upstairs to the choir loft with me, so I got to sing with the choir! Yay! And I must say we sounded pretty darn good today, too. Today we sang Tone 7, which I remember the last time we sang it, it was not so good. We all brought our “A” game today though, and we rocked Tone 7 like nobody’s business. I’m looking forward to the next few weeks, because there are several big feasts coming up, and Advent starts soon. It’s going to be fun in the choir, especially if Stephen keeps being adorable and well-mannered in the loft. Today he wasn’t so sure at first that he liked the idea of being upstairs, but I held him up to look over the railing at the people below, and we saw Jeremy and Agnes, then I held him for a while while we sang. When I put him down he stood around mostly, looking at the other people in the choir. After the homily he became comfortable enough to walk around the little area, pause to look over the railing, play with the toy he brought, come over by me for a bit, walk around some more. I did miss communion because I waited too long to go down, then I went at a toddler’s pace down the stairs. Oh well.

I’m hoping we can go to Liturgy on Friday. It’s the Synaxis of the Archangel Michael and All the Bodiless Heavenly Powers, or something along those lines. Doesn’t that sound way cool? “Bodiless Heavenly Powers.” Neato.

For church today I chose my favorite skirt; I bought this at Savers in Albuquerque. I love long, full skirts. I’m also wearing a black shirt from Motherhood Maternity; it still fits me because it shrinks a tiny bit every time I launder it. Grr. Finally, I threw on that long sweater vesty thing that I like to wear during in-between seasons, plus my Clarks boots.

Today Stephen had a great time helping my dad take Quinn for a walk, and then later they raked leaves. Grandpa is pretty much awesome. Stephen also requested that grandpa do his bath tonight. It’s cute.

Today Agnes is doing pretty well; she’s been sleeping a lot. She has learned how to freak out again so that people will pick her up and hold her. I think she probably figured out in the hospital that doesn’t work too well, but at home it works every time. She sure knows what to do to get attention. I need to get her a “drama queen” shirt or something.

Tomorrow we are getting some professional photos of Agnes and Stephen! It was arranged through Palliative Care at the hospital, I think because Agnes is “special” or because she was in the NICU. Whatever, free photos of my kids. The reason doesn’t even matter!

I’m looking forward to a little more down time this week, since Agnes’ schedule isn’t so packed. The only outings we have scheduled are the photos, and hopefully church on Friday. No doctors. I’m going to go right now and start enjoying my downtime.

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