Crazy Week, Boring Blog Post.

Today was one of those stressful days. Where we walk that line of whether or not we will be hanging out in the hospital by day’s end. I’m happy to report that I am currently typing this from my recliner while Liam farts away in his crib next to me. At Home. After three days without pooping (I know, I know more poop talk.) Liam was feeling bloated and uncomfortable all day. It’s a slippery slope between a few days without a B.M. and not tolerating feeds and more importantly meds. With a bowel resection surgery in his history we would need an x-ray to check and an IV to administer both his anti-siezure meds and, ironically, his motility drugs. We’ve got an awful lot of medical equipment in my house but IV equipment and an x-ray machine aren’t part of it all.

Still camping out in the woods and not out of them yet Liam did poop for us many times today which has helped but things like this can be tenuous until he is back to his normal self. Prune juice is helping move him along but the resulting gas can further distend his belly and cause unneeded pressure on his lungs. A ball of wax I would rather not mess with right now. He seems to have turned a corner over all though and we are optimistic tomorrow tomorrow will be a better day than today.

Instead of just raining, this came in the middle of a downpour. On Wednesday our little life of routine was thrown a curve when Karin and I came to the decision that our daytime nurse just wasn’t the right fit for Liam and our family and asked the nursing company to assign someone new to the case. This is something that is very common in the homes of home-nursing patients but the first time we’ve made such a request. I have fired people in my various day-job positions (though not my current one even though I’ve been there almost 5 years.) but this was different. While this is most definitely a Job to them, we are in essence “firing” them from our lives. We made the request on her day off and her supervisor was accepting and understanding of our decision (as if she had a choice in the matter) and would assign her to a new case immediately.

Except that due to a communication slip our nurse was not informed of the change and both she, and our new nurse arrived the next morning for duty an hour before the nursing company office opened. I would have to give her the bad news rather than her boss doing it. I should mention that I am not saying that she is being fired from her Job. Just from this job. She will be re-assigned somewhere, as she should be but it may effect the amount of hours in her paycheck for the next few weeks. I calmly sat her down at my kitchen table and professionally listed the specific instances that bothered us and caused the change and told her that we have asked that she not return to our case. She bid us good luck (without even asking to say goodbye to Liam, the patient, of 6 months.) and left.

I am still reeling from it all honestly. This woman spent 7 hours a day, four days a week, in my home helping take care of my child for 6 months. I don’t particularly mind being the “bad guy” and disagreeing or being frank to anyone when it comes to taking care of my boy, actually I’m pretty good at it, but when the job in your home the level of familiarity can make it difficult to not fear hurting some one’s feelings. By the job’s very nature the lines of personal/professional are blurry. How can they not be when this woman has seen me in my pajamas? ( one of the many annoyances of home nursing is not being able to wander half-asleep to the bathroom in my underwear. Pajamas no matter the season – Booo!) Nonetheless, the change was necessary and once the next month of transition is over we can bounce back into some sort of routine.

For the next few weeks the company will try and hire a new nurse with trach and vent training to take our case while we take care of Liam ourselves. Karin and I are excited at the time we will get to spend alone as a family. While the level of Liam’s medical needs make nursing care a long term necessity for the benefit of the entire family we are fully capable of going it alone in the daytime for a few weeks. Today alone proved we (admittedly this we is like 80% Karin 20% me, as I spend the days at work) have the skills to take care of him. We will still have our night nurse three nights a week so we’ll be able to get a slightly better night’s sleep almost every other night.

Tonight there’s no nurse but that’s ok. Karin is sleeping after a long and tiring stressful day and I am decompressing with the boy after a long tiring day at work. Hopefully Liam tolerates his overnight feed fine and we move on to the next thing. Otherwise we muscle through another day of worrying about going to the hospital. Either way, all three of us will get through it.


  1. Our daughter was assigned two separate speech therapists by the state, and I fired both of them because they were lunatics. The first girl (and I mean girl, because these therapists are fresh out of school noobs who have no life experience) tried physically forcing my daughter's hands into sign language positions so roughly that Livvie was terrified and hysterical. The second girl watched her go up on her toes with the joy of a beautiful early spring day and started spouting that Livvie had sensory issues and was almost certainly autistic. After that we were done, and I took on the job myself.It's tough to do. I can't imagine being in your position. You and your wife have my heartfelt respect.

  2. Karin and I have been extremely lucky in that we have been very happy with 95% of the medical care professionals that have come into our home. We had issues with people in the hospital from time to time but our current PT, OT and Speech therapists are fantastic with Liam. ( I hear you on the fresh out of school noob thing though) Our Early Intervention care co-ordinator hand picked us a dream team. Good for you on taking on the job yourself, Livvie will respond and learn from your cues better than she would anyone else anyway.As far as being in my position, while I appreciate your respect, I'm sure that you would do just as my wife are doing and get through each and every day appreciating all the things that make it worth while; like seeing that big boy smile when I walk into a room. I firmly believe that parenting (when done right) is always difficult. We, each and every one of us, have our own challenges and difficulties. Ours may be different than yours but when it all boils down to it parenting is about worry, frustration,guilt, fear, love, and pride.Thanks for reading and good luck with the kids.

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