On Monday April 9th (the day after Easter) Finn had his quarterly clinic appointment. Because of repeated upper respiratory congestion (a whole heck of a lot of colds this winter), we had decided to go ahead and do his 3 year-old chest CT scan early and add in a sinus CT. So, those were done first on the 9th. For those scans Finn had to be sedated and put under general anesthesia. It all went well, until he woke up. Those who know Finn know that he is quite feisty, independent, and opinionated. He was NOT happy about being woken up from the anesthesia. It took a while for me to calm him down, and that included a trip to the gift shop to buy an Elmo balloon. Eventually, I got him to watch a show on my cell phone and that helped him to calm down.
After his CT scans, we went to his regular clinic visit. I will admit that at this point he was in the end stages of his most recent "cold". If you had asked me if he was sick, I would have said "no" but he wasn't 100% either. (about 90% in my opinion) By the time we got to his doctor, they were already looking at his CT scans. The RT came in first and while his oxygen saturations were good she thought his breathing sounded coarse and that he was having some mild chest retractions. At that point she told us that she wanted to talk to the doctor about changing his neb schedule to daily nebs instead of "only when sick". She also changed his vest routine a little bit and told to use albuterol before every vest session.
Next came the doctor and nurse. The doctor took a good look at Finn and spent quite a bit of time listening to his breathing. She found his breathing to be coarse, but did not think he was having retractions. Then while the nurse took Finn on a walk, we went over the chest CT scan together. This is the report that we saw:
Impression: Diffuse bronchial wall thickening with nodular
consolidation/scarring involving the medial left upper lobe, left greater than
right superior lower lobe segments and medial basal left lower lobe segment.
Findings are consistent with diagnosis of cystic fibrosis.
In other words, his lungs are being affected by his disease despite our best efforts to this point. We also looked at his sinus CT scan together, but the radiologist report had not yet been completed. In looking at his scan together, though, the doctor felt that his sinuses were pretty packed-in.
So, it became obvious that it was time to change our game plan. Finn had been sick enough this winter to go through 9 rounds of antibiotics in 8 months. He often had a cough that would linger beyond the first 14-day round and then we would have to go for another 14-day round. (that happened at least 3 times) And clearly, his lungs were becoming more involved. So, the doctor felt that to up our game a bit it was time for daily nebs. Also, to help with his constant sinus congestion she prescribed Flonase. Finally, she suggested that we wait for his quarterly throat culture results to come back and then based on those results we would discuss a short hospital stay.
That brings us to this week. On Monday morning I got the call that his culture results were in. For only the third time in twelve throat cultures, Finn grew something. The bacteria he grew is often called H. Flu and it is the second time that he has grown that (the first being in October 2010). H. flu is often associated with sinus infections, so that makes sense that we're seeing that. However, H. flu does not explain the damage seen in his lungs. While it is still unclear what role H. flu plays in the progression of disease for CFers, it is not normally associated with the lung scarring that we were seeing in the CT scans. For this reason, the doctor wanted to go ahead with a bronchoscopy to make sure that there were no other bacteria growing in the lungs, and that if there was we would be aware of it and able to treat it. She also showed his sinus CT to an ENT who felt that by removing his adenoids we might be able to clear up some of his chronic sinus issues. So, we scheduled both procedures to be done at the same time. The doctor wanted us to wait in the hospital while the culture from the bronchoscopy grew out and run some IV antibiotics at the same time. The hope with the IV antibiotics, as well as the increased treatments that he will get while here at the hospital is that we can clean up what is going on in his lungs and help him out a bit. The culture results take at least three days, so that means we will be here until Monday.
This morning we arrived at the hospital at 9:30am for an 11:30am procedure. While we waited Finn enjoyed playing in the super-fun playroom that is located in the surgery center. He seriously charmed all of the nurses and doctors while zooming down the halls on a ride-on caterpillar. Seriously, he was being Finn, which generally melts just about everyone.
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| He loves this crib! To him it's just one big bounce house! And he loves to be totally closed in so he can just go to town in there! |
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| Our doctor laughed at this toy and said it must have come straight from the '60s. She's probably right. |
Our procedure got delayed until 12:15pm and by the time we had finally visited with all of the doctors (his pulmonologist, the ENT, and the PICC team) it was nearly 1pm. Poor Finn was past nap time and had nothing to eat all day, and no liquids since 9:30am. He was getting cranky. To combat that, the nurse brought back the ride-on caterpillar and Finn rode his way down the halls, through the big heavy doors, and right on in to the operating room. Every head turned and smiled as he rode past. I know I'm biased but our kid is cute!
We got him settled into the OR pretty quickly and I held him and talked to him while they gave him his gas and then once he was out he got a kiss and I was on my way. I went down to the cafeteria to grab some lunch and just relax. Then I headed back to the surgery center to wait. Finn was done relatively quickly and I was called back within an hour and a half (or so) of when I had dropped him off. Dr. Zemanick came to tell me that everything had gone well. His adenoids had been large and so they removed them, his sinuses were actually pretty clear (which is good) and his bronch showed that his airways looked better than she had expected. She did find some areas in the upper lobes of both of his lungs with a decent amount of mucus built up in them, so she took a sample from there so that they could see what bacteria (if any) he's growing. And we also find out that Finn has an "anterior airway" and is therefore more tricky to intubate. The anesthesiologist told to make sure and mention that from now on because it will take a more skillful hand and more complicated procedure to get Finn intubated. He made good record of it in his notes, but it's helpful for us to make sure the docs know. And then I finally went back to see Finn. I could hear him crying before I even got there! He had woken up without me and he was angry.
Once again we saw that Finn does not wake-up well from anesthesia. He also does not like being restrained and they had placed restraints on both of his arms so that he wouldn't pull out his IV line or his PICC. He would need both lines for the IV antibiotics that we are doing this weekend and they were rightfully concerned that he would pull them out.
I won't bore you with the rest of the afternoon details. Suffice it to say that Finn has had a rough day. He was tired, hungry, and just plain not himself. He did finally start to eat for dinner and he took his Pediasure before bed, so I'm hoping that tomorrow will just be a better day.
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| All tuckered out for his afternoon nap. See the arm restraints. We took them off not too much later when he wanted to hold his cup to drink. So far we haven't had to put them back on. |
Our friend and Relief Society president came to visit and it was nice to have someone to chat with while Finn just started at the TV. They have lots of Disney movies On-Demand here so we "watched" Toy Story 3 this afternoon as well as Cars 2 (1.5 times!).
They are currently running 3 IV antibiotics. One is given every 8 hours, one once every 24 hours, and the other one I haven't seen yet, so I'm not sure how often that one will happen. The doctors will meet on Monday afternoon to discuss all of the inpatients, so I'm not anticipating that we will be released until after that point. I'm hoping to be home by Monday night, but that will all depend on his culture results.
I'll admit that I have struggled with this and questioned if we were doing the right thing. At this point, I feel so new to the CF world, that I just need to trust the doctors, so I'm trying to let go and realize that just because Finn doesn't look sick doesn't mean he isn't sick. If I back up and take each procedure one-at-a-time, I understand the value and the reasoning behind each one, so I'm trying to hold on to that. Finn has been so upset and stressed by this though, that it's been a bit hard to see the bigger picture. I just keep thinking, "Why am I doing this to him?"
I just hope tomorrow is a better day and that when we wake up in the morning my charming, energetic boy will be back!
1 comment:
Wow! What a difficult thing to go through. Good luck with the rest of your stay there. You are certainly in my thoughts. Let me know if you need anything!
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