Beads of Courage

So this past clinic visit was the first one that I was not able to attend. It was a bit tough to be at work all morning and wonder how things were going. Luckily for me my work day goes by so fast that before I knew it, it was lunch and P.J. had finished up at the hospital. A quick three hour clinic, that might be a record! I was able to get an update from P.J. on my lunch break and hear the answers to all the questions I had sent with him to ask. I was a bit worried about Nash's belly size...seriously, it's huge! They agreed that it is large but not hard so all is well. I guess he's just chubby, weighing in at almost 24lbs! (80th percentile for weight!!!) I was also curious to hear about the ultrasound results and if his liver enzymes were still showing as being a bit high and if so, what that meant.

The ultrasound did show what they expected, that Nash would need to start on a new medication for his liver. I was a bit stressed to hear about the new medication but was told that it was pretty standard for CF patients to be taking it. The new medication is called Ursodial or "Urso" and from the information sheet that P.J. brought home my understanding is that in CF patients there is a malfunctioning protein that causes salt and water imbalance. This can cause bile to become think, the flow of bile becomes slower and a blockage can occur which can then cause damage to the liver. The Urso acts like a cleanser and he will have regular ultrasounds and blood work to continue monitoring his liver.

Our problem this week is that every time we try to give him the Urso he projectile vomits. I called Clinic to see if this could be some type of reaction but apparently it's just that gross that he's making himself sick. Awesome. So, it's been a stressful week with the physio battle every night and trying to get him to take this new medication. He's also learned how to spit so when we try to give him the Aquadeks that he's on (which stains bright orange) he spits it out. This is the stuff he use to suck back as a newborn. Guess he's now figured out that it's disgusting.

One thing that was new at this clinic visit is that Nash has received his necklace for "Beads of Courage". This program runs in many Children's Hospitals across Canada and the US but is new to the Alberta Children's. Each time a patient has a procedure, admittance, clinic visit etc. they receive a new bead in representation.

How do single moms do it?!?!

Nash is sick...again. It started off with just a runny nose a few weeks ago, which he picked up from being at daycare. Our dayhome lady had sent me a text to let me that one boy had a runny nose and then asked how I would like to proceed. I asked if he also had a cough and with the answer of, "no", decided to send him and just asked her to keep me posted on if it developed into anything more than a runny nose. It's so tough to know what to do but can I really keep him home every time someone has a runny nose?!?

Well, it didn't take long for Nash to also have a runny nose and then one evening he developed a low-grade fever. Because of this he wasn't able to go to daycare the following day. With P.J. getting ready to go away for work and being crazy busy with work and with me having my first "official" week of work (before students), I couldn't just not go. I stood there holding Nash, looking at P.J., with no clue what we were going to do! Our school board was starting that morning off with a welcome back breakfast and after arriving late, still had to figure out what we were going to do with Nash for the day. Our plan all along was that with P.J. owning his own business that he would just stay home but we quickly realized that our plan would not always work. Be have no backup plan. We have no family in Calgary and any friends that we do have that don't work, have young children at home so we can't expose them.

I have one friend who was on holidays from work but at home so I asked her if there was any way that she could come watch him for a couple of hours in the afternoon.  I told her I would hate to get her sick and I wouldn't be upset if she said no. She said she could come for the afternoon and I went to the staff breakfast, stressed to the max, while P.J. stayed home for the morning. Once at the breakfast someone who knew I was pregnant came up to me and asked how I was feeling, could I eat any of this stuff or were smells making me sick, etc. Well I then had to tell him that I had a miscarriage and literally stood there and said, "Awkward!" as I put some food on a plate and fought back tears (I was only able to fight it for a few minutes when a walk through the hotel was required). Man, what a day!

Well then the cough started and as usual, I called CF clinic in a panic and they called in a prescription for antibiotics that P.J. could pick up (he had to take Nash up to Children's anyway to have a routine ultrasound) so that we could have them on-hand in case I felt like we should start them over the long weekend. While I had our nurse on the phone I asked her what her thoughts were about the daycare vs nanny situation. Her advice to me is that yes, this year he will likely be sick 10 times and 3-5 of those times he will be required to go on antibiotics. Well, that made me stop in my tracks. When I think about how long it takes for him to get over being sick and the thought of him being sick 10 times...well, that doesn't leave much time for him to be healthy. But again, she made reference to the point that if it's not now, than it'll be when he starts preschool or kindergarten.

So with Nash being sick for almost a week and no sign of getting much better P.J. left to go away for work for a week. It also just happened to be the same week that school started for students. I started Nash on the antibiotics that night and the next day brought him to daycare worried that I wouldn't actually be able to leave him there with his cough.  Being that he no longer had a fever, and had been sick for a week it wasn't likely that he was contagious, he stayed for the day and had some good naps. The week went on and I really felt for any single moms out there! How do they do this?! I've been getting up at 5:30am, doing drop-off at daycare, work all day, do pick-up at daycare, home at 6:00pm, supper for Nash, an hour of physio (which takes an hour and a half), give Nash a bath and get him to bed, laundry, dishes...holy crap, I'm going to burn out FAST! I basically wanted to cry every day I was so tired and called P.J. and told him that this whole "being a single parent thing" sucked!

I still stress about whether being back to work full-time and him being a in dayhome is what's best for him but at this point it is what it is. I love my job but I sure do miss being home with him every day and hope that his health does not deteriorate because of him being around children that are getting sick/are sick/getting over being sick, germs and bugs that I bring home from school and me not being able to do as much physio as I could do while home with him all day. One thing we do need to figure out is a backup plan for when he is sick and not able to go to daycare. I called my parents and asked them to move back to Alberta, specifically Calgary, but sadly they said no. So...if anyone knows of a retired nurse, who lives in Calgary, that would like some extra cash, that would be ideal! Send them my way!