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| The boys after Great Strides |
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| The girls after Great Strides (Bree was exhausted!) |
On April 7th, Finn's ENT gave him the diagnosis of chronic CF sinus disease and recommended surgery. The first available appointment we could get for him was May 23 (also the last day of school for Kai). Since Bree still needed me at night, Reid needed to do as much of the hospitalization as he could. So he took the day off of work and took Finn in to the hospital. Luckily, the University of Colorado has bought out our local hospital. And since they also own Children's Hospital Colorado, the local hospital is slowly turning into a Children's Colorado outreach area. There are now Children's doctors in the Springs for most specialties, including ENT. Because of all of that, we were able to do Finn's surgery and overnight stay at one of the closer hospitals instead of having to go to Aurora. That was certainly a blessing. The ENT coordinated with Finn's CF team in Aurora and decided that he would be on 24 hours of IV antibiotics (the IV version of Augmentin) after the surgery before being discharged. Surgery began at 11:30am promptly on the 23rd and I arrived right as Finn was arriving in the PACU at about 1:15pm. We had warned the nurses that Finn would not wake up well from the anesthesia and to take us back before waking him up, but they apparently didn't believe us. By the time they came to get us he had woken up and was ANGRY. Two nurses attempted to hold him down to no avail. By the time we saw him he had ripped out all of his lines and there were blood spatters on the bed. I didn't exactly say "I told you so", but it was something similar. Once he saw me, he allowed me to hold him and cuddle him and he told me he had to go to the bathroom. They talked about getting him a bedpan for about 10 seconds before they decided that wasn't a good idea and so I carried him to the nearest restroom. On the way, the nurse tried to calm him down and reached out to pat his arm. He angrily told her, "Don't touch me!" and slapped her hand away. I think it was at that point that she decided she was done. When we returned to his stretcher she switched with another nurse. The new nurse came in and said that sometimes the older nurses get "crusty" and that made me laugh. But the new nurse was much nicer and more patient. Granted she didn't have to hold him down while he was kicking and screaming so she didn't have it as hard as the other one. Anyway, he was sweating a lot and they took his temperature as he seemed feverish. He had a slight temperature that eventually dropped and they attributed it to the warming blankets that they use in the OR. After an hour or so in PACU (which apparently is a long time) we were moved to his room on the 4th floor. There we had to get a new IV inserted, give all of his medication instructions to the new nurse, and get him settled in. He was happy watching the Disney channel and he tried a bit of apple juice. It was at this point that I left to head home.
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| Waiting for surgery |
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| Getting ready to go back to the OR with daddy |
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| In his room after surgery. The poor kid couldn't sneeze for two weeks without blowing out all kinds of blood. |
For the night it was just me, Kai, and Bree at home. We had Freddy's for dinner and then something strange happened. We had time. Extra time where we normally have to hook Finn up for treatments. I noticed this strange phenomenon at dinner as well. Normally after dinner is ready, there is at least five minutes of lining up and mixing medications. It felt very strange to not have to do that. It felt even stranger to not have to hook anyone up to treatments or "have" to watch television to get through the evening. In fact, for that very reason I didn't want to turn the TV on. I just wanted to enjoy normalcy. It was at this point that I realized that for the last 4 1/2 years our lives have had a schedule that we have not really chosen. Taking care of Finn has dictated that we do treatments, give medications, etc. For four and half years, I have not been away from him for more than a few hours at a time. The only exception to this was the 24 hours I spent in the hosptial after Bree was born. Other than that, Finn's care, treatments, and medication has landed squarely on my shoulders. I did not realize that the burden even felt remotely heavy until it wasn't there. That night without Finn I felt free. And then I felt guilty. Guilty for feeling happy about it. Guilty for being glad that Reid was the one who was staying the night with Finn. Guilty for feeling free from treatmtnets. And the reality hit that Finn will never have that feeling. I got away from treatments and medications and CF care for 21 hours. Finn will never get that chance. I can not even comprehend how that will feel for him. I wish I could take it all away and just make it better.
When Finn was first diagnosed I often found myself frustrated with the never-emptying cabinet of medication. I'm a goal oriented person and I like to have goals to meet. If I am sick, finishing a round of antibiotics is a good goal and an "end point". It nearly drove me batty that we would finish a bottle of medication only to have another one arrive in the mail. I quickly realized that "finishing" medication was a luxury that I had never appreciated before. It is a luxury that everyone else in the house will experience, except for Finn. How do I explain that to him? I know one day he will ask. And in a small way he nearly did last month. I've done lots of reading on how to answer questions and parent a child with a specail health concern. I only hope that I can do a halfway decent job when those really hard questions come up.
Anyway, back to our night. There was a thunderstorm that night so I decided that instead of sending Kai to his room alone, I would have him sleep in Reid's spot on the bed. He was thrilled to sleep in the room with me and I was glad to have someone nearby. The next morning we had more free time where treatments would normally be, so I took the two kids to a baptism at the church. One of Kai's friends was being baptized and since he is coming close to that age I want him to see as many baptisms as he can so he will be prepared.
After that we headed home and got ready for Finn and Reid to arrive home. When Reid pulled into the garage, Finn was asleep in the back seat. I posted the following on Facebook that afternoon:
A little boy's face lit up when he saw me come get him out of the car this afternoon. I carried him into the house and he snuggled and loved on me for quite a while. He listened to his brother tell him all about his night sleeping in "mommy's bed" and said "Oh. My. GOSH!" at all the appropriate times. After getting his share of cuddles he asked for chocolate cake and chocolate milk and now is happily building his brand new Lego set that he earned for being brave yesterday. He is very happy to be home from the hospital!
And we were happy to have him home! The cultures taken during the sinus surgery were growing out Staph within the first 24 hours, so he came home with another 10 day prescription for Augmentin. When we went to clinic in June he was still clearing mucus from a cold and the surgery so his CF doctor extended the prescription for another two weeks. Tomorrow will be the last of his augmentin. I'm hoping we can have an antibiotic-free summer!
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