Adenoidectomy

I didn't blog the last few days. We spent pretty much the entire day at Children's hospital Wednesday with Aaron. He was having his adenoids out. And then he stayed overnight with Roger.

He did well. He wasn't feeling very good for the first 24 hours or more, but has since perked up quite a bit. At first he wouldn't fall asleep. (More than usual...) Aaron is our best sleeper and he was refusing to lay down (or even to fall asleep while being held).  He seems to have gotten past that now, though.


Our challenges are 1. Finding enough soft foods that are interesting to him. Aaron is a good eater. He has a very balanced diet.  Have you ever tried to convince a 2 year old of anything?  Convincing Aaron that he should try a food he doesn't normally eat, especially when he's not feeling well has been really hard! And just because he ate something the first time you offered it, does not mean he's interested in it again. (Read: jello, macaroni and cheese, popsicles, etc.)

2.  Keeping him from getting too rambunctious. His discharge instructions said he could return to school on Monday (if he goes to school, which he doesn't...) and no exercise for 14 days. When was the last time you spent time with a 2 year old? He runs everywhere. He jumps around. His normal movements could very easily be considered "exercise." So how do we keep him from moving?

Busted Lip. No joke.

So gross. Aaron tripped & fell yesterday, smacked his face off the the driveway at a miniature horse farm up north (Mercer County.) His bottom teeth came very close to all the way through his lip. We took him to the ER in Sharon, PA.  It was that bad... Quite a lot of blood & and a huge fat lip, but didn't end up getting stitches. I wonder if it would have been the same outcome if we'd been here in Pittsburgh at Children's... 

This morning he woke up really grumpy and fussing that his ear hurt, so off to the pediatrician we went.  Turns out Aaron's ear is fine, but his throat is red (strep negative, thank God!) and Aaron's pedi says he probably would have put a stitch in it if he had seen it yesterday, but today it was already healing & there's nothing we can do but wait & make sure it doesn't get infected.  


Poor Aaron.  I have so much mommy-guilt about his life. 

Be Warned:  the pictures are graphic & gross. They'll make your knees hurt.

Recovery is Slow Going

But Hannah is smiling again!

Hannah Update

This update comes directly from Hannah's mom Sharon. (with permission to repost it!) Please continue to pray for sweet little Hannah & her parents as they continue this journey. They really need it!

Hello All-

I am so sorry that I haven’t been updating this much. We’ve been at the hospital all day, every day, and at night when we return to the hotel, we’ve been crashing from exhaustion!!

Rather than give a blow by blow description of the week, here’s where we are right now. Tomorrow Hannah is scheduled for a cardiac catheter. This is the same procedure that she had done last winter. Her O2 saturation is sitting in the 70s, and it needs to be higher. There are two possible reasons for this, both of which can be fixed via cath. The first potential issue is that she may have more collaterals forming, which are bypassing the necessary parts of her heart, and mixing blue and red blood. If this is the case, they will need to coil them off. The second option is that when they put a fenestration in Hannah during her Fontan, it might have been too big, and rather than working as an overflow valve, it is continuously letting the blue and red blood mix. If that`s the case, they will need to temporarily plug the hole, see what happens, and if she tolerates and responds well to that, they will plug it permanently.

Another ongoing issue is Hannah`s eating. We have created a mini-mart in the hospital room fridge, and nothing is appetizing to Hannah. So, tomorrow when they knock her out for her cath, they will be putting in a feeding tube. Hopefully is won`t last long, and will just get her over the hump and on the road to recovery.

The next new development is that Hannah has somehow caught RSV. Apparently many of the children in the PICU have caught it, and some of the medical staff has been sent home for being sick. Both Hannah and the 5 week old baby in her room have caught it, and though neither child is showing the true symptoms, they are now isolated from the other children. When we go in, we now have to wear masks, gowns, and gloves...IT SUCKS!!!! I am so mad that I cannot kiss my baby goodnight or hold her hand without a mask or gloves getting in the way. It is so not fair!!!

On the brightside, Hannah has been able to go for walks with us in her stroller, stand and play at the indoor play area, and we were able to wheel her outside for a bit today!! Unfortunately because of her RSV, we won`t be able to do this anymore, but it was wonderful while it lasted!!!

Aside from all of that, Hannah is now breathing room air and doesn`t require oxygen. She has also had her IV line disconnected, and had her central chest tube removed. All that is left are two chest tubes that drain her lungs, an arterial line that will be replaced by a venus line tomorrow, pacer wires that are connected to her pacemaker (which is still using when she is sleeping...grrr), and an IV in her hand that isn`t being used. All in all, not bad.

Prayer Request for Hannah

**UPDATE**
Hannah is out of surgery, she did not need a pacemaker or a breathing tube! Great news! Will post again after her parents have gotten to spend some time with her and can give us the "full" update. (5:05pm EST, 5/11/10)


Original Post:

This sweet peach...


**
is having surgery tomorrow morning.

Sharon, Hannah's mom & I became friends through a message board before our 3 year olds were even born. So over the past 3+ years we've shared quite a bit with each other, though the beauty of the Internet, and journeyed though life as first time mothers together.

Hannah has a congenital heart defect. To be honest, I don't know much of the particulars about it. What I do know is that this surgery has been a long time coming. A lot of worry, a lot of waiting, a lot of time to love on sweet little Hannah as her heart surgery approached.

Tomorrow morning, Hannah's doctors will try to repair her heart defect. I think I remember Sharon saying at one time the procedure was called Fontan. I will update that if I am remembering incorrectly.

Please pray for Hannah. Pray for Sharon. Pray for their whole family. Pray for her surgeons, nurses, & medical staff. I've been in the waiting room during heart surgeries on my loved ones. I've also been in the waiting room during surgeries on my children. I've never been in the waiting room during heart surgery on my child. I can only imagine what tomorrow will be like for Hannah's parents... that's why I'm asking you to lift them up!

I will update this as information about how Hannah is doing comes to me (and I get permission from Sharon to share publicly).

Thank you! God Bless Sweet Hannah!

**This photo was taken yesterday, by Sharon, on the way to the hospital. I'm using it with her permission just for this post, a prayer request for her daughter.

Just another Monday evening around here

Yesterday afternoon when Roger got home from work, the boys and I were outside. I was cleaning the van and they were playing. I finished up and excused myself to the kitchen to cook dinner. I recommended that Roger stay outside with them since they hadn't had much time to play outside today. A few min later (I had just BARELY gotten dinner going...) I heard Roger coming toward the house with a kid crying. Not altogether unusual, Aaron often gets "hurt" and cries and needs to come in to where I am. But when I got to the patio door to let him in, it was IAN freaking out and Roger yelling something about the hospital! So after he explained to me that Ian had grabbed the dandelion popper (garden tool) from him and accidentally poked himself in the eye, I went outside into the bright light to assess the situation. He had a small cut on his eyelid, but more importantly, he had a sizable gouge out of his eyeball. Did I ever mention how as far as body parts are concerned the EYE grosses me out the most? So Roger and I tried to maintain a sense of calm as we quickly changed diapers, redressed & shoed, turned off the dinner, changed out of our "house" clothes and took the boys down to the van. Ian is usually pretty good about injuries, he doesn't dwell on them... but he was really fussing about his eye, which for us was another indication that this was more serious. I called the Peditrician after-hours nurse on the way and she had the on-call doctor call us back. All the on-call dr. said was, "Yes, I think going down to Children's is the best bet here. You're doing the right thing. Call us tomorrow and let us know what's happening." We arrived at our WONDERFULLY new Children's Hospital (and it was their 1st anniversary on the new site...and Roger and I both smiled thinking, "gee! we haven't seen the new hospital yet, so that means we haven't been down here for a whole year! that's great!") got Ian checked in, waited 2.5 hours to be seen... He has a corneal abrasion... a scratch on his eye. We pretty much already knew that. It isn't really serious unless it gets an infection, so we have antibiotic drops to give him for the next 5 days or so. He'll see his pediatrician tomorrow or Wednesday for a follow-up. We lucked out. It could've been way more serious. We definitely erred on the side of caution tonight, but Roger is partially blind in his right eye from a soccer injury when he was 8. He was pretty concerned out about Ian's eye, and we agreed that for peace of mind we should go to CHP and have it evaluated. None of us had dinner until after we left the hospital. I kinda feel bad that we didn't stop and get McDonalds or something for the boys on the way... they snacked a LOT at the hospital. Aaron basically had mum-mum crackers and root beer for dinner. So that was a fun little adventure. Not. I should also say, that in true Ian style, he was extremely well behaved and mostly laid back about the whole situation. He only cried a little when he had to get the dye test done and then flushed from his eye. It was short-lived though. (Aaron was also very well behaved.) We are very blessed in this way. Our children are able to act normally under pressure and entertain themselves quite well in medical situations.

The snot fountain has finally subsided...mostly.

I'm happy and thankful to report that finally, after about 13 days, Aaron's epazoodic has waned. I'm not going to say it is completely gone, because it isn't. He's still got some mucus discharge from his nose, but he is dramatically improved. 13 days. That's a LONG freakin' time to be sick with a bug that is making it hard for you to breathe.

We started the albuterol treatments on New Years Day and did them pretty close to the "every 4 hours as needed" prescription. That's a LOT of Albuterol. He took an entire 5-day round of oral prednisone. He took an entire 5 day round of zithromax and will begin the 2nd phase of the prescription (another 5 day round after 5 days off) on Wednesday. Countless doses of tylenol. An entire refill package of baby wipes, hundreds of sucks from the "snot sucker" (bulb syringe), a fever, a brother who threw up 2 times, and several loads of laundry just to wash the snotty linens, he's finally feeling better.

It was a REALLY long road this time.

While the doctor deemed it unnecessary to test him for RSV because the treatment would not change, I'm almost certain he had RSV.

And this morning, I read a note on a blog about another baby, Gavin, who passed away January 7th due to complications from RSV at 8 weeks old. You can read about him here: http://www.natalienortonphoto.com/

Why am I posting this? Another reminder about how dangerous RSV is for tiny babies and children who have lung problems. Another plead to please try to keep these babies healthy. I mean, obviously, you can't know you're about to get sick before you DO get sick and there's no way to tell if your child's clear runny nose is going to turn into something crazy (like we didn't when Aaron was first getting sick this time...), but if you are in the throws of a cold, just don't go near the babies! Don't even come to visit. Trust me, your friends/family will understand. They might even THANK YOU. It is incredibly important. It can be the difference between life and death.

Here I am, counting our many blessings and breathing a sigh of relief on the flipside of 13 awful days for me & my son Aaron. I'm also sitting here reading about a sweet little baby who didn't overcome his "cold." And I'm so sad for them. I walked that road last February. Although Aaron didn't ever get admitted to the PICU, his doctor told me several times that it was practically imminent that Aaron would be admitted to the PICU. He also told me that he usually holds off on "the talk" because it is so scary for the parents, so if you get "the talk" it means that your baby is very, very ill.

Just something to think about today. Thanks for praying for us. Thanks for checking up with us and checking on Aaron. (And Ian, during his pukies...) We appreciate it deeply. Would you kindly say a prayer for the babies and parents who are still fighting their viruses, and the ones who have sadly lost the battle?

Aaron could use a little prayer

What we though yesterday to be a little bit of a cold has now become a full-on asthma/bronchiolitis attack and Aaron is not doing well.

He has 102.4 fever and I have packed my bag for Children's Hospital, just in case. The roads are not very nice here tonight and I would be going alone because Roger will stay home with Ian. I'm just hoping and praying that this is the lowpoint of this illness for Aaron and we will see marked improvement very soon. I do NOT want to go to CHP.

If you could pray for us, we would really appreciate it.

Night is the hardest time.



^this was taken on Christmas Eve.