Clinic Visit
Hi everyone! This is my first official blog post so please be patient with me as I learn how to share my thoughts and experiences with you all.
The topic for this first post is a typical yearly cystic fibrosis appointment. Wyatt is required to go to the cf clinic every three months (when healthy), and once a year (usually right around his birthday) the appointment includes blood work and x-ray.
Leading up to this big appointment I always feel very anxious. You never know how the scans will come back. This year I would say was Wyatt’s healthiest year. He really did not get sick often and fought off viruses quickly. My anxiety for this appt was more towards Wyatt’s reaction to the testing. Last year he had to do the chest x-ray in an awful machine. He had to put his legs through a saddle type seat (comparable to a baby swing) and then his arms are lifted above his head and a clear plastic is closed around him. Last year he was losing his mind for the whole x-ray and was saying “mommy please help me”. It was absolutely awful and it was the first year he was able to ask me for help and I wasn’t able to help him. This was followed by blood work, where I had to hold his arm while they did the blood draw. I left the appointment feeling awful for putting Wyatt through all that without being able to help him. This year, the weeks leading up to his big appointment were filled with memories of last year. We tried to prepare Wyatt for the testing but he doesn’t quite understand yet.
Wyatt’s appt was scheduled for 10:30 but we arrived at Children’s Hospital at 10:00 to get all the testing out of the way. When we go to these appts we need to be prepared for a long visit. I brought Wyatt some handheld toys that can be easily washed after, plenty of snacks, hand sanitizer, and masks to cover his face. Since we are right in the middle of an awful cold/flu/ RSV season, Wyatt wears his mask at all times throughout the hospital (I bring extra in case one falls off, gets wet from his breathing, etc).
We first went to blood work but the requisition form wasn’t there. I phoned the clinic in the meantime to make sure the form was sent there. Instead of waiting around we head to the x-ray department. X-ray was full of patients waiting to be seen and there was a half an hour wait. We check-in but go back to x-ray. By the time we are getting blood work done, it is 10:25, so my plan to arrive early was pretty useless. Wyatt sat still and did not try to pull his arm away when the needle went in. He cried for maybe 10-15 seconds and then he was absolutely fine and sat still for the remainder of the blood work. By 10:35 we were done and Wyatt got a sticker to celebrate doing well. This is huge progress from last year.
Next, we go back to x-ray and wait. Wyatt has a little snack and plays with the toys we brought. He gets called into x-ray at 11:10. Much to my relief, the x-ray technician says that Wyatt does need to go in the awful machine he’s gone in previously. He just has to sit on a stool very still while they take the picture. Wyatt was very cooperative and they got the images they needed in less than five minutes. This was a huge relief! The hard part is over.
We now head to the cf clinic for his actual appt. We get there at 11:20 and head straight to isolation to ensure Wyatt isn’t around anyone else with cf. The nurse comes in and we get a weight and a height. Good news-Wyatt grew taller. Bad news-Wyatt lost 1.2 lbs since his last appt in the fall. Usually this would cause me to worry because people with cystic fibrosis have trouble gaining weight properly, but Wyatt had a cold over the holidays and was not eating properly. For the time being it is something we are focusing on getting back up to where he was, but trying not to worry too much. He has a regular pediatrician checkup in a couple weeks so we see where his weight is at then.
The nurse then attempts to check Wyatt’s oxygen level with a little thing that clips onto Wyatt’s finger. Wyatt has to stay very still for this to work and at this point he has been at the hospital for close to an hour and a half so he is not very cooperative. Once the nurse sees oxygen get to 97% she is happy with that and takes the clip off his finger and attempts to get his blood pressure reading. He also does not cooperate with this test so after a few minutes she gives up. This is often something Wyatt does not sit still for but they try at every appt to get him used to it.
At 11:30 we are now in our own room. The room is deep cleaned between cf patients and is required to be vacant and aired out for at least 30 minutes between patients. We usually see the physiotherapist to ask questions about how physio is going but we told the nurse this wasn’t necessary at this appt because we have no issues with physio. We are also informed the dietician is not in today.
At 11:35 the pharmacist comes in to chat. He goes over all the medications that Wyatt is on and confirms how often we give them and the dose. This is a great way to make sure that we are following the proper protocol for his medications. This is also a great time to discuss any questions we have about the medications that Wyatt is on. I like to know the purpose of all the medications he takes. The pharmacist then said something that really stuck with me. He said all the treatments we do with Wyatt and how vigilant we are with doing them is setting Wyatt up to have a great baseline for his lung health as he gets older. I do not need any credit for Wyatt’s health, but it definitely is nice to hear that all the work the whole family does is really benefiting Wyatt’s current and future health. We then discuss some issues with our insurance and he gives advice about approaching our insurance company. We also chat a bit about some of the new drugs coming out. Total time he was with us was half an hour. Medications area huge part of keeping Wyatt healthy so speaking to the pharmacist has become a major part of the appt.
At 12:05 the nurse comes back in for a throat swab. This is done at every appt in order to determine if Wyatt is culturing any bacteria. This is very helpful if he gets sick and needs to be prescribed an antibiotic. Wyatt is a jokester and of course when the nurse asks him to open wide he does the opposite. Tickling his belly seemed to work because he opened wide and she got what she needed.
At 12:10 the pediatric respirologist (fancy name for children’s lung doctor) comes in to speak to us. I knew she would have the x-ray images by this point so I am feeling a little anxious until she says that his lungs have not negatively progressed since his last x-ray a year ago. Since Cf is a progressive disease, it is very reassuring to know his lungs have not progressed this year. She also lets us know that he officially has gone a whole year without needing antibiotics! This is a huge accomplishment. When Wyatt was just a baby he would go on antibiotics many times a year, sometimes as often as once a month. This is the first time he has gone a full year fighting colds without needing antibiotics. The Dr then listens to his chest and takes a look in his ears and mouth.
We are told that the dietician will phone us to discuss Wyatt’s weight loss and give suggestions to get his weight back up (this could possibly include an increase in his digestive enzymes he takes).
At 12:20 we are done. We go to the front desk where Wyatt gets an early birthday present from the clinic. We also pick up an extra special gift that was left for Wyatt from a fellow cfer named Beckett. It is a superhero cape that Beckett used to wear and now has passed down to Wyatt. Beckett is one of the strongest and bravest children I know and I am so thankful that he chose Wyatt to give this extra special gift to. At this age Wyatt does not realize how special this gift is but one day he will and he can look at the card Beckett gave him and know he has a friend in Beckett that he can talk to (from a distance) about cf, or just life in general.
Wyatt then collects his bravery beads to add to his collection at home. Every appt he gets beads for different things he did at that clinic. They get added to a string and each appt more beads are added. This is now the end of his appointment.
After the appt we head to get a toy and a happy meal. This is the light at the end of the tunnel that can help push Wyatt through these appts. It is a long day for Wyatt and after being poked and prodded we always make sure to reward Wyatt.
I know this is a long post so thank you for reading! I wanted to give everyone an idea of what a typical appointment includes for Wyatt. If you have any questions please let me know or leave a comment below!
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Awesome post! Keep up the great work! 🙂