Long Overdue Update
9 Months – that’s how long we stayed out of the hospital. Not counting minor admissions of less than 3 days 😉 We did have two of those in between. Ian was in the hospital for the last 10 days fighting pneumonia and sepsis. While we were in the hospital, I was kindly reminded that a lot of people check this blog for updates. SORRY – we have been too busy having fun to update!
We had an absolutely wonderful summer. We went for walks, played at the playground, we even took Ian to the zoo and a birthday party!! We did a lot of playing on our front porch in the evening where Ian would sit and splash in a little tub of water and Owen would run under the sprinkler. Aside from his “normal” struggles with pseudomonas, a bacteria that is colonized in Ian’s trach, Ian stayed healthy and we were all happy.
Ian is professional at sitting. He can turn on his bum in circles and can scooch a little bit side to side. We are working on pulling himself up to stand and some walking with support in his walker. He has made significant improvement with putting things in his mouth. His new favorite is veggie chips. It is really the only food item that he will put all the way into his mouth. I think he likes the salty taste.
Last Monday Ian gave us a little scare. I knew he wasn’t feeling well, but I figured it was pseudomonas. For this, we do an inhaled antibiotic that usually clears it up for about 10 days and then we have to start it again. We had switched to a new antibiotic in hopes of keeping it at bay for a little longer and Monday was only 5 days off. So, I just figured the new antibiotic didn’t work as we had hoped and we started back on the old one. Monday morning, just as I was walking out the door with Owen for school, I could tell Ian was being a bear. I quickly helped the nurse do a few things before I left and figured I would be quick dropping Owen off and would be able to get Mr Grumpy Pants calmed down. Dropping Owen off takes maybe 15 minutes. As I hurried home, Ian’s nurse called about giving him some of his rescue meds. These help him calm down so he can breath. So – I ran home. Not only was Ian struggling to breathe but he was shaking. I immediately called for an ambulance. We always take Ian to the hospital in an ambulance when he is sick because we have learned that even if everything is under control when we leave, that can change. Usually I tell them he is fine, we are getting packed up and we just need a safe ride. This was a little different, it actually felt like an emergency. I grabbed our emergency bag and we left.
Long story short, Ian had Pnemonia and was septic and his left lung had collapsed. He spent 5 days medically paralyzed and sedated. It took him another 5 days to recover. Yesterday (Friday) after 10 days in the ICU, he was finally discharged. Owen had been sick about a week prior, so most likely Ian caught a virus that he just wasn’t strong enough to fight off. We had had such a good long 9 months that I this was a wake up call for us. Maybe it was our warning going into cold and flu season to be extra careful.
The good news out of this admission – Ian is off Oxygen. He has been on O2 for most of his life. Sometimes we are able to turn it off, but we have not kept him off for a full 24 hours since he was probably 2 months old. Thursday when we were weaning it down, we got to the point of turning it off. I fully thought we’d be turning it back on later in the day. But we didn’t. We’re not sure if the steroids that he was on for the pneumonia or not, but we decided to start him on an inhaled steroid. He’s also not been desatting (dropping his 02 levels) at all when he cries. This is new for him and a little inconvienient in a way, b/c since he can’t make noise, the alarm has always let us know when he is upset. This kid may actually learn to cry for a little bit!! I’m also feeling pretty encouraged that this might be his ticket to getting off his vent. Usually when we take him off the vent, we have to supplement with Oxygen. Today, Ian was off his vent for an hour and a half with no O2! The only reason I put him back on was that he was just sick and I didn’t want to push him too much.
Last but not least, I want to let everyone know that we are hosting a blood drive in honor of Ian’s 2nd birthday. Yep – Ian will be 2 next month!!!
The blood drive is on October 24th at Oakmont Presbyterian Church from 9 – 2. Ian has used so much donor blood over the last 2 years. He used 2 units during this admission alone. There are so many people out there who benefit from blood donors. People often need blood transfusions with surgery. Cancer patients use blood products. And kids like Ian need blood products when they get sick. If you are eligible to donate, please consider joining us on the 24th. This is also the day of the Oakmont Halloween parade. So with any luck – Owen and Ian may show up in their costumes!!!