This week has been full of challenges. Brendan has had a lot of problems since coming home from the hospital. He had so much swelling in his airway and irritation from the procedures that he has needed suctioning almost every 15 minutes around the clock. Nobody is getting much sleep.
He can’t wear his cap for more than a minute or two. He just can’t breathe past it.
When I changed his trach on Sunday, we pulled the old one out as usual. Instead of playing his little games or even just talking and waiting, he went into full respiratory failure. His airway closed. Putting the trach back in right away fixed the problem and he is OK, but I will never forget that moment. It is so frightening.
I have had several calls with his ENT’s office and they say that all of this is not unusual for everything they did and that he should be improving. He is. He slept for a couple hour stretches last night without suctioning. It has been bad enough that I actually felt like he may have gotten sick with a virus or something too. It is not knowing that is the most stressful. I am still waiting for the next date for procedures, I am a little more scared going in to it knowing how hard his recovery has been.
We’ve tried to just go about our day as normally as possible. All of this hasn’t really slowed him down that much. It just makes more work for us.
The boys love to play with their doctor kit and give their animals checkups. I am sure not many kids resuscitate their patients with an Ambu bag. We end up with another one of these every time we are in the hospital.
It is still over 100 every day and we find ways to get outside. Bill and Trevor devised this bucket-drop game. I love taking these rapid fire still shots. So there are a lot of pictures tonight, but just in sequences.
Brendan insisted that he get a turn too. He was able to wear his cap long enough for one drop. But once his shirt was wet, he said it was too windy and he wanted to go inside.
We are excited about a little tech project that “went live” tonight. Since everything you have ever thought of has been done before, we were able to find a man that documented setting up a web based remote viewing of the pulse-oximeter machine.
Using a tiny little computer called a Raspberry Pi that is connected to the pulse-ox, we have a little web server that collects the data and broadcasts it to any browser on our local network. It uses Google Gauges code to display it so pretty!
Fortunately the base scripting was already done for me, I just had to get it all set up for our machine. So cool!
Poor Brendan! I hope he heals very soon. You must have been terrified changing his trach. I’m so sorry to hear he has to go through this after doing so well.
On a brighter note, Bill has given a whole new meaning to the phrase “just a drop in the bucket”! 😉 You captured some great pictures. It’s nice that there is still some fun and a way to beat the heat a little.
What a very cool thing you discovered to monitor the pulse-oximeter! I don’t know how you do it! I am in awe!
Lots of love and healing hugs,
Gramma xoxoxo
This has been a rough week. I can’t imagine how frightening it must have been to see him struggle so badly! His poor little system is just exhausted trying to recover. I am glad his ENT team seems to be so much more on the ball than the attending physicians you have dealt with and were able to reassure you that these side effects are not unheard of for what he had done. Here’s hoping that longer stretches without suctioning continue and everyone can get some more sleep!
With all Brendan has been through…….He really looked like He was having “buckets of fun”. He may not have the healthiest body, but he certainly knows how to… 😉 have fun. 🙂 😮 🙂 It is a joy to see him playing, in spite of everything.