So, what's new?
Cooper was sick on Monday and Tuesday. On Sunday night he came into our room and I woke up to hear him struggling to breathe. He had stridor (sounds like they are struggling to inhale, and silent when they exhale) and couldn't talk. He coughed - and it was definitely croup. His airway was swollen, which is why they make that barky cough sound and stridor. He slept with us the rest of the night. He stayed home Monday and Tuesday.
It snowed on Wednesday. I got up at 4am to let the dog out and it was raining. I woke up at 6:30am to the phone ringing. Then Tom yelled up that it was the school canceling for the day. What? I looked outside and it was snowing and the ground was already covered. Geez! Now for those of you that don't know, Richmond is totally wimpy in the snow. And it was wet, slushy, slippery snow. It was like a blizzard. The boys were so excited. They were dressed in snow gear by 7:30am! But, their outside fun didn't last long. The wind was blowing so hard that it was hard to see - the snow was blowing sideways.
Of course everyone in my area was totally ecstatic on Facebook about it being a stupid, freaking snow day. I guess I would agree if I had all healthy children. But, I don't. Especially right now. It kills me that Harlie has to miss out on stuff that she probably would love to do, if she were healthy. Ugh. And snow days when Harlie is on oxygen piss me off. Plus, snow is such hard work! I have to help get the boys dressed in all their snow gear, boots and gloves. They go outside for five minutes and they come back in, get snow everywhere, need help getting their wet clothes off and they run off - leaving the laundry room a total wet mess. Then you have to dry what was wet, because they are going to want to go out again as soon as I sit down.
I probably sound a bit bitter. But, it's just that I'm tired. I was already tired - both mentally and physically (probably more drained than tired, really) from the past week. So, add a snow day, and I'm about done. No happiness here. Nope.
Luckily, after two outings, Cooper exclaimed that he "was never going outside again!" So, that kinda made me happy. ;-)
By Wednesday night, Harlie was running around looking quite happy. I asked her if she wanted to go to school and she said, "No!" Then she said, "No, I don't want to go to school!" Granted, it was not nearly as clear as that - however, I could totally tell that's what she was saying. I promise! But, she was being funny when she said it - so I didn't take her so seriously. She was definitely going to school on Thursday.
Thursday, there was a two-hour delay. Which, actually worked out okay, except for the fact that Cooper was only at school for two hours. That didn't give me much of a window for a little bit of freedom. That was my first day without anyone in the house in what feels like forever (maybe three weeks?).
But, I can tell you that it felt FANTASTIC to put Harlie on the bus! Even though she said didn't want to go, she was the first to get out the house and she hurried down the driveway. I sent a small oxygen tank with them, just in case. She had a great day, and they said she was happy to be back at school again (it had been over two weeks since she had been there).
I got some laundry started at home and then went to the gym to run a few miles on the treadmill. My running time has been about nothing the past few weeks, so it felt good to get a quick one in. I was feeling crappy all week (my spirits, I mean). Then one short run had me feeling more like myself again!
Then I went and picked up Cooper from school. Then my Mom came over to sit with him while I went to a training thing at Harlie's school for her communication device. A Prentke Romich rep came to the school to train Harlie's teacher, speech therapist and instructional assistant on the device. I found it to be very helpful and I think they did, too. The device can be overwhelming when you look at it. They all left understanding it so much better, which will help them enforce her to use it more during the day. The more she uses it, the more she can express what's going on in her head.
One day, Prentke Romich's FB page posted something about a Wacky Wednesday contest of some sort, where you send in the funny things your kids have said using a communication device. One of the comments was from a mom who said her child said, "I want ice cream, color brown." I thought that was so cute. And I live for the day when she can tell me what she thinks or wants (without me anticipating what she's going to say).
Anyway, the rep also brought two new devices. I noticed on the website recently that they are no longer making the Vantage Lite (the one we have). I didn't realize it was because they came out with something better! They are now using the tablet technology, which makes for a much lighter, smaller device. And lighter means that she might be able to carry it herself, which means she might just take more of an ownership in it and use it more. I have hope!
The Accent 700 only weighs 1.95 pounds, and is smaller than an iPad. The Accent 1000 weighs 2.95 pounds and is bigger than an iPad. The language and icons are the same. So, I could back up our current device and then just load it in the new one and nothing will really change as far as how Harlie uses it. The buttons are all in the same place, and mean the same thing. The only negative is that the smaller one clearly has smaller buttons. There are still 84 buttons per screen, but the screen is so much smaller. I'm just a little worried that they are too small. But, the rep said he would bring them both to a speech therapy appointment and let Harlie test them both out to see how she does. Then we can order one for her! So, that's exciting.
That night we got a care package addressed to Harlie from the children's department of Saxon Shoes. Can you believe that? They all signed a card and sent a bunch of stuff, like a LaLa Loopsy girl (which she LOVES), a coloring book, crayons, lip gloss, socks, shoe string charms, etc. How incredibly sweet and thoughtful! I know our friend, Aline, had to have been behind that. Thank you so much to Aline and all the wonderful employees there! We are so grateful for your support!
Friday morning I sent Harlie off to school again. And I sent the oxygen tank again, too, just in case. Well, it was a good thing because by 10am she was back on it. Grrrr! What is going on with her??? Terri said she was having to suction her every few minutes! Ugh! That is NEVER a good sign. I have more to tell you about this day - but I will have to make that it's own post because this one would be way too long. Soon.
Anyway, Friday morning also brought us a sick Murphy. He so rarely gets sick (thank goodness!). I think he's only missed one day of school so far (and that was for when we went to Pennsylvania). He had a very sore throat and a fever. Unfortunately, Fridays are my busiest days, so luckily my Mom was available to come hang out with him while I ran around. We are almost done reading the book Wonder and we just read the part where his school watches The Sound of Music. He asked me what that was so I pulled up some song scenes on you tube. I love that movie. So, I asked my Mom if she had a copy (and of course she did!) so she brought that with her for them to watch. As I came and went from running around, Murphy appeared to be captivated. He said he really liked it.
Despite Harlie's increased coughing and suctioning, I still took her to speech therapy. She hasn't been in weeks. She did great, despite everything. I don't think she considers it work. Which is great. Amy is great with her. I have more I could write about this, too, but again, I'll have to save it for another post.
After that we were all home for the day. And then Harlie's hearing impaired (HI) private teacher/therapist came to work with her, too. All the while, her coughing and suctioning needs were increasing. UGH! Seriously, when is she going to be well???? Poor Terri couldn't even eat her lunch because she was suctioning so much. Maybe she lost her appetite. Can't blame her, really. Every cough produces secretions. And they have to go somewhere. When she's sick like this, it's just plain disgusting, as my friend Susan does a great job of writing about in her most recent post.
It's so incredibly frustrating that she's sick again. Maybe I rushed her back too soon. I don't know. Trying to make sound decisions for her with limited information is completely wearing me out. I'm back to feeling like no one can help us with her medically. And that's such a sucky feeling! I was talking to Susan about it earlier in the week. I told her that I think I might have a vague understanding of what caregiver burnout must feel like. For example, putting Harlie to bed requires ten steps that aren't required when putting the boys to bed.
I have to:
- Change her trach ties (or trach depending on the night)
- Put special paste around her g-tube (both morning and night)
- Put lotion on all her scars (she asks for it for her leg, it must feel tight or something) - she has a lot of scars, too!
- Put peroxide and bacitracin on her surgery site for her BAHA (both morning and night)
- Put drops in her ear (she's woken up with it being bloody three mornings in a row)
- Put her pulse ox probe on her toe and turn pulse ox on
- Turn on her air compressor, oxygen concentrator and humidifier through her trach collar and hook her up
- Give her night medication and water through g-tube
- Repeatedly suction while doing all the other stuff (especially when she's sick)
- Clean her hearing aid with an alcohol swab
And that's just to get her in bed. That doesn't count when I have to get up throughout the night to empty the condensation from her circuit or suction her. The reason why I feel like I might have a vague understanding of caregiver burnout is because by the time I take out her hearing aid (the last thing I do, because I read to her and tell her I love her when she has it in) I am DONE. And when it comes to opening the drawer and taking out that alcohol swab and cleaning her aid, it feels like someone just told me I have to walk to the nearest shopping mall. While carrying my car. The "little" stuff just doesn't feel so little anymore. Everything feels so big. And taxing.
Friday night she coughed all night long. The entire night. We still have to use a baby monitor so we can hear her when she needs us (and hear the alarms, too). So, when she coughs - we hear it.
Then at 4am, Murphy comes in our room and says, "Mommy! I feel like I'm going to throw up!" So, of course I yell, "Well get to the bathroom then!" And so he ran, and luckily, he made it. I, being an awesome mom, tossed him a washcloth from afar to clean his own face. No, not really. I wiped his face. Reluctantly. And then washed the skin off my hands. NO GI BUG FOR ME, PLEASE!
I went downstairs and got him a throw up bowl, a Gatorade and some Tylenol (he had a fever). And then I put him back to bed. He slept the rest of the morning.
But, it was a long night. Tom and I were absolutely miserable. This house has had a sick person in it for too long. Something's got to give. Oh, and I forgot to mention that ever since Harlie's ER and hospital stay more than a week ago now, she has had several accidents per day. I don't know what is going on with her. Luckily, no sign of blood. But, something isn't right with all these accidents. She is back in pull ups again, and I'm trying to be patient but it is getting super annoying. Clearly, I need to make a GI appointment. Which, I have decided to call one at Children's National Medical Center in DC. I have heard from several people that their GI department has stepped it up in recent years. And I just can't take the chance of having a repeat of our last experience. No way. The fact that I would rather drive to DC proves it.
So, it's now Saturday and I was supposed to meet some friends for a six mile run this morning. But, to be honest, I was not feeling well. Plus, I was so tired from our sleepless night. So, I skipped it this morning. Which was a good thing because Murphy got more sick. He was crying because his throat hurt so much. I thought maybe he had strep. So, I was going to take him to the doctor. I told him to go upstairs and get dressed. While he was sitting at the top of the stairs getting dressed (I don't know why he likes to get dressed there!!) he threw up. All down the stairs. Thankfully, our stairs are hardwood instead of carpet. But, oh what a mess! The poor guy was crying and I couldn't even get to him. And he had thrown up all over himself and his shoes. Ugh. I went into the kitchen (Brandy was working) and we had to laugh. I felt bad laughing. Trust me - I wasn't laughing at Murphy, just at the whole situation.
So, we got that all cleaned up and got Murphy all changed and washed. And then we went to the doctor with our throw up bowl. The office was super busy - seems this winter has been hard on a lot of people. He doesn't have strep. So, she gave us a script for Zofran. And he hasn't vomited since. But, he's been miserable!! He hasn't said a word all day. And his fever this afternoon was 103.9! I feel so bad for him.
Harlie's coughing lasted all day long. Except for a brief period when she fell asleep on the couch.
|Them and the dog (who wasn't miserable).|
Well, this post has been far too long. As has the week. My fingers are crossed that things will start looking up soon. Real soon. Because I think I'm hanging by a thread over here.
Thanks for reading and thanks for all your love!