Tuesday, February 16, 2010

Full-time job

Sorry for the lack of updates. We are still alive here. Matthew actually came home from the hospital on Wednesday morning. He was still very sick, but the doctors thought he was on the up-swing. The rest of the day he was very uncomfortable and coughing a lot, so I decided to wait until Thursday morning to head to my parents for my grandpa's funeral. Wednesday night things got worse. Matthew seemed so agitated to me. He continued to work harder and harder to breathe. I finally put some oxygen (we have this at home for emergencies) on him to see if that would help. It did for a bit, but by morning, I didn't feel right leaving him with Steve so I could go to the funeral until I had a doctor check him out. I called the office and they told me to bring him right over. When we got to the doctors office, Matthew's oxygen saturation was 72%. (Normal is above 90, but ideally you want it as close to 100% as you can). They quickly put him on more oxygen, gave him a breathing treatment and wanted to send him by ambulance to the hospital. I talked them into letting me take him if Steve came over to the office and drove us, so that I could keep an eye on him from the back seat.

Let me interject here and say that the day was made even worse by the fact that I missed my grandpa's funeral. That was rough. I was torn in two directions and I couldn't be in both places.

Within a couple of hours of being at the hospital, it was clear to see that the poor boy just needed more oxygen and we probably could've avoided another hospital stay if we would've known how much extra oxygen he really needed. Thursday night he had some issues with vomiting, and they tried to start an IV again, and it took 4 pokes by anesthesia to get it in. And then it only lasted for an hour before it blew. I asked to restart his feeds at 1/2 the rate instead of re-poking him. The anesthesiologist said he didn't really feel like he had anywhere left to poke anyway.

Friday ended up being a quiet day, and they let us go home Saturday. But, in many ways, are house now feels like a (temporary) hospital. Matthew is still on oxygen. We have this huge oxygen machine (sorry can't remember the name of it) that sits in our living room, and 100 feet of tubing so we can take him throughout the house. He is also hooked to a pulse oximeter so I know what his oxygen level is. Matthew gets breathing treatments 4 times a day, CPT (chest percussion therapy) 4 times a day, and meds three times a day. I am running the role of nurse and respiratory therapist full time in my house. All while having our house on the market (and private showings multiple times a week), and taking care of the rest of my family. Hence the reason the blog has set silent.

I just want to say how thankful I am for my nursing back round. I'm sure a person could learn to do all of this, but boy oh boy, am I glad to have a jump start on things. And I'm not sad that I'm doing it, nor do I see it as a burden. I am so thrilled to be doing this from my home, instead of sitting in a hospital room!!

We have weaned Matthew down to 1/2 liter of oxygen at night and 1/4 liter during the day. His cough is getting more loose and he is able to clear his self better; I think we are on the downhill slope of this respiratory junk. Once we get rid of the oxygen and sat monitor, life will get more back to normal. In the meantime; my days are filled with medical treatments and lots of snuggling.


Anonymous said...

My sincere sympathy for your loss and being unable to share in the funeral with your family. Grateful that Matthew is improving. Prayers. Barbara

Tyler said...

Jill, I admire everything you do. You are an amazing person and will do anything for your family. It's good to hear that Matthew is on the upswing.

Diane, Tyler's mom

Bugg's mama said...

I have a special guy with SOD, too. He is 3, in a wheelchair, doesn't not talk, has cortical vision impairment, and seizures. And a head of curls. It's awesome. Most of the time. Thank you for sharing your story. I felt as if I could have co-authored it!

Love, bree

Lisa said...

Jill....you have been going through so much. I am so sorry to hear of your grandfathers passing.

Here's hoping that Matthew continues to recover and that things can be back to normal soon.

Sweet thoughts coming your way....

Kristen said...

Oh my dear friend, oh how I wish I could bring relaxation and rest to your tired bones. How does a massage sound? :)

You are amazing. I admire everything you do. Your thoughts and attitude are inspiring and enduring.