Status quo

Not much has changed here. Yesterday was Evan's last day of steroid syrup, and he is not any better. His pediatrician is arranging a repeat chest xray this morning, and we'll go from there. This bug is seriously kicking all of our behinds...we'll be so glad when it's over. I'm staying home from work tomorrow. That's pretty sick...I haven't called in sick to work since Evan was born.

1:30 pm - Update

We are back from the hospital. Evan's chest xray looked good, and Dr. Oldham felt his breathing was not labored or wheezy, and his ears were clear. Evan really perked up for Dr. Oldham--he was walking all around the imaging waiting area, looking up at the lights and giggling (not the same boy that this morning had us making the worried after-hours page...). Dr. Oldham didn't think any more prednisone was necessary, and said we could use our discretion on the albuterol. He thought getting up and walking around was the best thing for Evan--it would expand his lungs and really help him cough up the extra mucus. In fact, he suggested that we take Evan outside for a walk when we got home, provided Jeremy & I felt up to it (we were a sight I'm sure, both decked out in surgical masks and we brought our own hand sanitizer). Jeremy and I both got prescriptions for azithromycin (it is likely we have secondary bronchitis, and there is no sense in us passing bronchitis back to Evan now that he's getting well--Evan is already on antibiotics). All-in-all, a very productive visit.

We stopped at Rite-Aid to pick up our drugs, and the trip to town wore Evan out. He's napping right now. We'll see about that walk when he wakes up.

I also wanted to clarify I completely understand my family's not wanting to come share our germs on Thanksgiving Day. They have called once or twice every single day this weekend to check on us, and suggest some helpful home remedies (I'm still working on getting the house more humidified, Mom...). I did not mean to sound bitter in my earlier posts--can we just say this bug is keeping me from thinking clearly???

Our Thanksgiving...

This year, the three of us stayed at home for Thanksgiving, Black Friday, and will continue to be home for the forseeable future. Whatever the bug Evan has is, he has shared with Jeremy and I. We are all achy, coughy, and stuffy-nosed. I'm sure I will get some flack from my parents for posting this, but they opted to give our family a wide berth this weekend (the original plan was we would go to Yakima for Turkey Day). I wasn't too sick yesterday, and made us cornish game hens (no time to defrost a turkey), and the typical sides.

Evan is hanging in there, but still is obviously not feeling well. He will have 5 minute bursts of energy after he gets his albuterol treatments, and will get up and toddle around. But then it's back to laying on the floor. I went to go pick up some more oxygen tanks for him--Jeremy got 3 E tanks Wednesday night, and by this morning they were all empty (oxygen goes quickly when it's run through the CPAP). I returned the empties and picked up 3 full ones. When I asked if we could have any more for the weekend, the medical supply company ended up sending an oxygen concentrator home with me (talk about a step backwards...). It's only temporarily...hopefully very temporarily.

Jeremy and I woke up at 3 this morning both feeling very wheezy and congested. If there is a plus to all of Evan's breathing treatments, it's that Jeremy and I both took advantage of the albuterol nebulizer last night (it really helps--I highly recommend it with a chest cold).

One Sick Boy

Unfortunately, Evan's bug has gotten worse in the past 24 hours. Last night he was very restless and set his alarm off frequently (we left the CPAP off because the night before it seemed to worsen his cough, and last night he wasn't sleeping soundly enough to put it on without waking him).

Jeremy took Evan in to the doctor's office this morning...they were there from 9:30 am until 1:00 in the afternoon, by the time Evan had his blood drawn, a chest xray, and a nose culture. Evan can stand in front of the xray panel, so he doesn't have to be crammed into the tube contraption any longer. Blood draws just get harder as he gets older--it required 3 phlebotomist, 1 daddy, and 2 sticks. Dr. Oldham came in just to see Evan (this was his normal administrative time), that's how sick our little guy is. The dreaded words "admit him to the hospital" briefly came up, but fortunately did not happen (possibly knowing we have CPAP, oxygen, and a pulse oximeter at home helped?). He is on oral prednisone, cefprozil antibiotic, and albuterol every 4 hours. And tylenol.

When I came home from work, Evan was walking daddy around the kitchen circuit, and was not looking terribly ill. The prednisone must have given him a little boost, but within about 5 minutes he was laying on the floor looking pretty sick.

Jeremy called and cancelled his surgery for the 2nd...it was pretty obvious it wasn't going to happen. Hopefully, third time will be the charm???

Rough Night

Evan is sick again. Last night was a rough one--he woke up at 11 pm with a low fever and didn't go back to sleep until 2 am. We had planned on keeping him home from preschool all this week, to minimize the chances of him getting sick before his surgery on December 2nd (this is the urology surgery and CI candidacy MRI and BAER, rescheduled from October because of illness). Oh, the best-laid plans...

I'm reviewing the events of the past week to see where he would have picked it up from. He was at preschool last week. I took him out shopping on Saturday and Sunday, but was careful to disinfect all the touchable parts of the shopping carts. I did catch him yesterday chewing on one of his shoes, but that seems awfully fast to come down with symptoms.

Hopefully with lots of rest he'll get over this in time to keep his surgery appointment (we can always hope, right?).

Mommy and Me Time

Daddy was busy doing some work on a neighbor's house last weekend. So it was just mommy and Evan at home all day Saturday and Sunday. Evan is a big time daddy's boy, so I was wondering how this would go over. There were tears at the baby gate when daddy said goodbye, but it didn't take long for them to subside. We must have walked 50 laps around the kitchen. We resurrected a fun trick Evan used to love: spinning him on his back on the kitchen floor. He loves it still--he would come and get me from the other room, walk me to the kitchen, lay down and pull my hand to his leg (my "handle" for spinning him). We played cars and blocks and went for a walk. Evan let me snuggle him for a few minutes early Saturday evening. It was the best weekend we've had in a long time.

Charge it for CHARGE

The CHARGE Syndrome Foundation has started a brand new fundraising campaign called "Charge it for CHARGE" (catchy, isn't it?). Below is the address of Evan's page:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=293919&lis=1&kntae293919=6F0DE842FB294BC989368EEBA149BE0A&supId=239576325

I realize times are tight, and we have to pick and choose what charities are the most important to us personally to support. But if during the holiday season you find you have some available funds that are in need of a charitable organization, I would encourage you to consider the CHARGE Syndrome Foundation. The Foundation truly did write the book on CHARGE Syndrome--the education it provides for families and professionals is critical for the health and advancement of individuals born with CHARGE Syndrome.

***Initially the above web page was not correct. I have since updated it, and it appears to go directly to Evan's fundraising page. If it does not, you can search for our page by name--it's under Sarah Storrs***