What a Day (or how I spent my winter vacation)

Just wanted to share a bit of good news with those of you still reading.

Last month was one of Kian's regular heart monitoring visits. Although I had hoped differently, he wanted absolutely nothing to do with being in a dark room with a stranger for an echocardiogram. Not even the Backyardigans could stop him from howling the minute the technician entered the room. Such behavior is typical of a 19 month old. Still, I had hoped he would be miraculously calm just so we could avoid a trip to the hospital for a sedated echo.

So today was the big day. I was up at roughly 3:30 a.m. to be certain Kian nursed one last time before 4:00 a.m. I had a quiet morning to myself while I got ready. We took Angie to an early morning play date with a Karate friend (I am everlastingly grateful to her mom for volunteering to help us with Angie) by 6:00 a.m. and Chas, Kian and I were at the hospital by 6:30 a.m. to go to the Pediatric Sedation Unit.

The Nurse gave us a brisk run down of what to expect then rubbed some numbing creme on Kian's hand and foot. The sedation used on Kian today is the same type used in war zones to treat then move the soldiers--it is really fast acting and gets out of the system quickly too. The best part was that we would be with Kian the entire time and he would remain in the same room throughout all stages of the procedure. She left to retrieve some toys which kept Kian reasonably amused but barely distracted from the numbing creme, which he tried to reach by lifting the band aid every so often. A Child Life Specialist came in to give us more details about what to expect. The Anesthesiologist arrived and told us to be prepared for certain physical reactions. ome parents can be disturbed by how quickly the child drops off so the hospital did a nice job of making us comfortable by having everyone who entered the room give us information that built upon what the previous person said. I'm sharing here so that I don't forget, and to inform any other parent in a similar situation who might happen to wander here.

Basically, we were told that once the drug went through the IV, Kian would lose consciousness in a matter of seconds. The child may cry and the pitch of his cry changes just before he completely loses consciousness. The sedative may burn so they also add lidocaine, which may or may not relieve the burning sensation. The sedation process takes approximately 30 seconds and he would truly be awake one second then asleep the very next. We were warned to becareful because the child may collapse in one direction and many unprepared parents have been cracked in the face with the full force of their sedated child's face. The child's eyes may remain open and there would be rapid eye movement whether the eyes were open, partially open or closed because the child is asleep. The child may also have some involuntary movements for a time. The Anesthesiologist and a special anesthesiology nurse would monitor Kian's blood oxygen levels, pulse and blood pressure throughout sedation. A towel would go under his shoulders to ensure that he was receiving maximum air and he would have oxygen tubes. We were told that once the IV was turned off, Kian would regain consciousness in about 15 minutes. As probably every parent before me, I said I'd like a little of that sedative to take home. The Nurse quipped back, "It will cost you."

Once the numbing creme took effect, nurses arrived to insert the IV needle. As you can imagine, Kian was not pleased with this, especially when they taped his hand to a cloth covered foam board. He did try to karate chop it off after they left and he pawed at it quite a bit. I gently and repeatedly brushed my hands over his chest and belly and that seemed to keep him calm.

At 8:00 a.m. the echo tech arrived and the Anesthesiologist returned for action. I held Kian as they prepared the sedative and added it to his IV. He screamed in pain and my mind checked off that this was probably due to the burning sensation. Chas came up behind me and enfolded me and Kian in his arms while giving me back support. Within seconds, the pitch of Kian's cry changed, the nurse said, "There we go" and Kian slumped down completely with his next breath and stopped crying.

I laid him down on the bed, eyes partially opened, and the tech started the echo. My hands never left Kian--I touched his head, his hair his shoulder. I made soothing noises when he briefly fussed in his sleep--mostly for my own sake I think, since I'm sure he couldn't hear me. It suddenly hit me that something might be wrong, although we had expected that this echo would just confirm that there had been no changes since the valvuloplasty.

The cardiologist arrived to review the images captured thus far. He asked for some additional images, and the tech said, "you want that even though it's not stenotic?" I wracked my brain to remember what that word meant, but I had been awake for six hours on very little sleep so I was starting to feel a bit woozy myself.

The Doctor finally indicated that there has been no change since July of last year. He said there is some slight leakage, but nothing dangerous. The heart has not thickened (that would be the stenosis issue duh) any more and the aorta is not blocked--actually, the doctor said that his (the doctor's) aorta was probably more significantly blocked as a healthy adult than Kian's aorta. Kian's blockage was identified in the echo at a 7 and the Doctor said they don't worry until it gets around 40. Also, what they thought was a slight hole between chambers last year (which no one told us about at the time-grrrr) has appeared to close. We saw the valve directly and were told (for what we both believe to be the first time), that Kian has the outlines of three flaps, but two of them fused together creating the bi-cuspid aortic valve.

Really, as exhausting as it was, the procedure was confirmation that Kian is doing well at this time, though we still need to monitor, we may not need to do so as intensively as we have been doing. Yay Kian and yay us.

They took Kian off the sedation and he woke up immediately, although he needed my arms to support him for a while. And he willingly rested on the pillow while we changed his diaper (a big difference from the olympic wrestling matches of recent diaper changes).

Kian played with the pedialyte and didn't really drink it. The Nurse said it was okay to breastfeed anyway, however, Kian, refreshed from his deep nap, was more in an exploring frame of mind. He finally nursed for a few minutes and we alerted the nurses that we were successful. He walked out of his room on his own, then I carried him down to the toy bin. He did not want the pelican, the spider, the bears or the duck. When I mentioned the Koala, he pointed at it and smiled, so Kian took home a mini gray koala beanie baby.

We went to a local bakery and ate a small breakfast (by now it was 10:00 a.m.) Chas had a cinnamon croissant, I had an oatmeal and raisin scone and Kian had a toasted wheat bagel. We all shared but Kian seemed most fond of the bagel and my scone (Excellent taste the boy has--those were my favorites too). He sat on the wide window ledge, rather than the highchair I had grabbed. Other than the hospital tags on his ankle, casual observers would have not guessed that he had just been released from the hospital having been sedated only an hour before. He was cheerful and curious and had a healthy appetite.

We retrieved Angie from her playdate and arrived home. Chas and I had a brief doze this afternoon and that helped refresh us. Kian has been a bit more clingy than usual, and a bit more moody, but he is mostly himself tonight. Hopefully, he will be completely normal again tomorrow. Kian was quite a trooper today and I'm so proud of both he and Angie. Angie lost her tooth tonight--she was already in bed, but I think she was still wobbling it. She got up and her dad finished the job--out came a lovely little tooth. I think there is still enough time for the tooth fairy to come here tonight.

Getting up so early and having so many medical people working on Kian has given a surreal cast to the day. It's strange to acknowledge, that in some ways, this is our normal, though it isn't really normal at all.

I am deeply grateful to everyone who helped us today. We are tremendously blessed.

Slowly Emerging from the House of Yuck

In my last post, I indicated that some illnesses in our home slowed my stitching last month. I believe that I failed entirely to mention that I felt terrible and was definitely coming down with something. And I did not specify that both kids were sick. Angie spiked a high fever one night, but recovered after a day of rest at home. Kian was unlike himself and was unbelievably grumpy--or perhaps because he is normally so chipper, his general crabiness seemed worse than it was. We went to the Doctor and were told that although he had fluid in his ears, he had no infection therefore no medication was necessary. We just needed to keep a close eye on him. That led to working short days while I drove Angie to and from school--two hours of driving each day. It was exhausting and I became worse.

Kian seemed to recover and even began giggling again. After waiting a week, I went to my Doctor and was put on an antibiotic. That night Chas turned to me and said, "I've noticed that Kian is poking at his ears. What do you think we should do?" So we have another trip to the Doctor to learn that Kian has infections in both ears. Antibiotics, twice a day is the plan.

Over the weekend, my course of antibiotics ends, and though I feel less foggy, I'm definitely not cured. I become more ill and have trouble breathing at night. Kian despises his antibiotics and fight diaper changes as his poor bottom turms bright red. Then Chas turns to me again and says, I don't feel well. What were your symptoms?"

On Monday I stay home from work and place several calls to my Doctor to get another antibiotic. After the second call, the receptionist tells me that the order will be ready at the pharmacy between 2:30 p.m. and 3:00 p.m. Chas and Angie, who is the only healthy person in the house, trek out to the pharmacy. No prescription. The pharmacy calls the Doctor and we learn that she has not even seen my message from 10:30 a.m. During my next chat with the receptionist, I am told that it should be soon, but her phones are cut off at 4:30 p.m. so she won't be available to help after that.

I finally hear from the nurse who informs me that "The Doctor will be calling in the prescription and oh by the way are you breastfeeding?" Yes. "Well you can't breastfeed while on this antibiotic so you'll need to pump and dump for the next ten days."

I almost cry.

Then I ask if there is anything else I can take because he is sick too and I'd like him to have the immunological benefits of breastfeeding in addition to his antibiotics. She tells me that he is probably getting my illness through the breastmilk and hints that I should stop for the duration. My husband is reminding me that we have plenty of frozen breastmilk so we wouldn't need to put him on formula.

I stand my ground, because while the young nurse (who has obviously never had to pump and dump around her own sick infant and who probably doesn't have kids yet) clearly thinks it's no big deal to pump and dump, I can imagine the horrors that await me if I have to push Kian, in need of milk and comfort, away for ten long days. Not to mention how uncomfortable pumping all day for ten days would be.

The nurse promises to check with the Doctor after she finishes with her patient. 4:30 p.m. comes and goes--we hear nothing. Dear Chas is annoyed. I'm searching KellyMom (bless them) and the LactMed Database for info on breastfeeding compatible antibiotics (and I'm horrified at the side effects of the proposed antibiotic--Psychosis? Hallucinations? Suicidal thoughts? I don't want to take it even if I'm not breastfeeding).

At 5:00 p.m. Chas has me call and I get the most unhelpful answering service for a Doctor ever. Apparently, I'm out of luck and they are gone for the day.

5:30 p.m. arrives with a call from the nurse, I propose an antibiotic, which is rejected, but a prescription for a breastfeeding friendly antibiotic will be called in immediately. We eat dinner quickly and Chas and Angie venture out once more.

I feel yucky, but vaguely victorious.

Chas decides to go to the Doctor the next day, so I stay home until lunchtime. Chas now has his own antibiotics, or he will when goes to another pharmacy later as I received the last of the antibiotics the previous night. Concerned about the kids (I saw Angie pulling at her ear before school and Kian's bottom is scarlet and painful to the touch) I call their doctor before I leave. We are to watch Angie, but bring Kian in. I go to work and call Chas later. Kian's ears are not much better, and certainly not enough to justify what the antibiotic is doing to his diaper region. So we get a new antibiotic (thankfully a smaller dose once a day) and a prescription for butt paste (nystatin, Aquaphor and minty Maalox).

Yes three of us are now on antibiotics but at least Angie stopped pulling on her ears and seems well.

Did I mention through this last week, I'm the hotline Magistrate who is on call 24hours a day, seven days a week? Or that the house is a disaster and Chas's parents will be arriving on Saturday?

Slowly, the antibiotics start working, the house is presentable and we're feeling human by Saturday. Yay family.

Sunday night, I'm thinking to myself that at least Angie is okay and we'll all be better soon.

At 3:00 a.m. today Angie wakes me tearfully to say that her ear hurts. We go to the Doctor today. Angie has an ear infection. Sigh. We have lunch with Chas's parents before they leave then we go fill yet another antibiotic prescription (if you're counting, we're up to six antibiotics since February commenced).

I have surfed the net to learn that Nicki and Janet both gave me an award. Thanks ladies--that was a sweet surprise. I'll post my favorite blogs later.

I've been slowly stiching Angie's Tooth Fairy pillow and hope to finish it by the end of the month. I put a few stitches in my HAED Challenge piece, but all other stitching has suffered greatly. I am inspired to stitch Paradigm Lost over one after seeing Nicki's The Token framed. I think I have just the fabric....

I hope February has been gentler to you.

Come on March!

End of the Month Update

Just brief bits from me:

I've been sick this week so no posting and very little stitching. Midi is not done, nor is Amethyst. Bummer. I did stitch two ornaments but I'm just not up to scanning or tinkering with photos (heck I can barely spell "photos" at the moment). I don't think I'll be able to stitch anything for the Holiday Bazaar which is next Thursday unless I have a remarkable recovery in the next twenty four hours.

I did make some progress on Taj ( can I tell you how much I love Taj? Such beautiful colors and I love my fabric) and on the Christmas Mandala (hate the gates, hate the plain white fabric I'm using but I just want this one done) so I'm glad I did the Chatelaine SAL. I might see if anyone wants to join me at the end of December for another week long SAL.

My computer is really misbehaving so if you don't hear from me for even longer, you'll know this antique I use for internet is not cooperating.

In happy news:

My dear friend Cathy gave birth to the handsome, squeaky Myles. Yay!

And from our household: Kian had the "watershed" Cardiology appointment today (Doctor's words not mine). He had both an ECG and an ultrasound/echo thing (very cool--the ultrasound technician let me breastfeed him during the ultrasound to keep him calm. She told me that she had breastfed too and so she understood.) He is basically at the same level as he was immediately following surgery! At this stage, if things start to go wrong, it will most likely be a gradual change that we can detect by our monitoring appointments, instead of the rapid changes immediately after he was born. We will always need to monitor him, but for now, she is very pleased. We are overjoyed.

And from the crazy me file:

Because I am such a good wife, I'm allowing to go on the trip to see his friend this weekend (which was originally planned as a family trip to see his friend's family). I, in my current unhealthy state, will be staying behind with the kids. Heaven help me. I honestly don't know how hubby is going to make this one up to me.

That's it for now--I'm bone tired and need to brace myself for the coming weekend.

I hope you all have a lovely weekend.

My Very Own Food Pyramid

Created just for me. Neato (thanks to Tanya at the Motherwear Breastfeeding Blog). I'm struggling to get the pdf version to appear, but I'll just keep trying.

I don't post much about breastfeeding because this is primarily a stitching blog, and that is what most people come here to read.

However, breastfeeding has been one of the most enjoyable and profound experiences for me as a person. In my younger days, I thought it was yucky and I assumed I would feed any children I might have with formula. There were no nursing moms among my family or acquaintances when I was young. My first nephew nursed for a bit then his mom added in formula. My other sister in law breastfed her children and I suppose that is when the idea really took root in my mind.

When I became pregnant with Angie, I researched breastfeeding carefully and learned about all the health benefits for moms and babies. I took two breastfeeding classes while pregnant and decided to give breastfeeding a good try based on economic and health reasons. I hoped to manage two years, but decided not to put myself, as a first time mom, under too much pressure.

Angie and I had our struggles early on, but we persisted and I found the experience to be emotionally satisfying in addition to all the other benefits. Kian got the hang of breastfeeding immediately. I don't know how long we'll manage to breastfeed, but so far, we're doing well.

Like his sister, Kian has a milk protein intolerance so dairy products are out of my diet for the present. I wish there was more information about why this happens and when it goes away. I guess not much effort is put into studying this problem because it is assumed that moms stop nursing when the baby is age one (if not sooner--lots have people have suggested that we put him on formula).

Still, I am pleased to have my very own food pyramid. Unfortunately I can't do dairy and it offers no substitutes. It is very hard to find food without milk protein these days. My diet is probably the healthiest ever, but I'd love more information about ensuring I'm consuming enough calcium. Maybe with time, the site will allow more factors to be considered when creating a personalized pyramid.

My pyramid also recommends three and a half ounces of whole grains each day. I guess I need to get more multi-grain bagels instead of my strawberry pop-tarts (which contain no dairy).

Oh well--it is totally worth it.