Savannah Jane

Today the process of ‘What is this?’ continues. We had a CT scan this morning to gather some more information. Savannah did great- wasn’t scared- asked a lot of questions. She was presented with a handful of silly bands and some lollipops after the test and we were on our way.

They should have some results for the pulmonologist to review in a few days. I feel like we are in such a weird position with all of this because, yes, there is something on her x-ray that needs to be treated. Sure, it could be serious. However, unlike most of the parents that are bring their child to the pulmonologist or Dell Children’s, we haven’t been having chronic problems. She feels great. it is almost by accident that we ended up getting these tests done.

I am a little amused when the doctors and techs ask me questions like ‘So how long has she been coughing?’ and ‘ oh is she really uncomfortable with her wheezing today?’ and I answer ‘ oh about a week ago when her cold started.’ and ‘oh she’s not wheezing at all- hasn’t in over a week’. You can see the slight confusion in their faces. She does have a really minor cough, but it’s not slowing her down and improves every day. Her breathing is fine, she’s not short of breath.

I am thankful that the tests so far have been non-invasive and painless. I have a feeling there will be some blood tests or biopsies in the future if the CT scan doesn’t tell them what
they need and that will probably require some ice cream at least as a reward.

We just hope they figure this out soon and we get our little girl back to 100% ( inward and outward) as quickly as possible.

I apologize for being so vague about what is going on with Savannah. There are so many variables right now and I was terrified enough about the really scary ones without burdening you with all of that. Bottom line is we still have to figure out exactly what is going on with her, but are making progress. She is in no pain, is feeling great and will be back at school tomorrow with her friends.

BUT, now that we’ve ruled out one terrible possibility, I feel better about giving you some specifics. So this all came out of the clear blue sky. Savannah has been a pretty healthy kiddo. She has had some respiratory issues, but they have been pretty mild compared to what I endured as a kid. I was a wheeze factory. She wheezes every once in a while, but it was nothing that I or her pediatrician were particularly concerned about. She has had a really healthy and wheeze free past 12 months.

A week ago Wednesday she woke up with a croupy cough that a steamy bathroom seemed to take care of. By Thursday, she had a fever and a cough, but was not terribly sick. Her school called me to let me know they had a case of the flu and two viral pneumonia’s diagnosed in other kids and said I might want to check with her doctor. Out of precaution, they said to bring her in.

As Savannah had pneumonia in late 2009, they decided to do a chest x-ray. It took forever to get the results this time. I heard the doctor on the phone with the radiologist and was wondering what was up. She came into the room a little pale and said ” I am about to completely freak you out.” She then proceeded to tell me that the radiologist saw some things that concerned her about Savannah’s X-Ray. Her biggest concern was that there were indications of Cystic Fibrosis in her lungs.

This was the point that the room started to spin a little. How could this be? My thriving little girl could not have Cystic Fibrosis could she? My pediatrician patiently went through all of Savannah’s records looking at her growth patterns and infection history and declared it ‘nearly impossible, but definitely worth of a trip to the pulmonologist’. Even if it wasn’t CF, it was something that should be looked at. She has some minor airway widening (called brachiecstacis) in both of the upper lobes of her lungs. There are a lot of possibilities for what is causing it, but CF causes about 30-40% of these kinds of issues.

I should mention that Conor was about to head out of town for the week that Sunday. I worked as best I could, made an appointment with the pulmonologist, shot a wedding and waited. I had called my OB in Seattle to check if I had been screened for CF, but as I hadn’t been a patient for a few years, they had to order my files. Without Conor’s supervision, it was down the rabbit hole of WebMD/Google searches. I don’t recommend it.

Finally on Wednesday, they called to tell me that I had been screened and was negative. CF is a genetic disease that has to be passed on by both parents to the child. I assumed this meant that it was impossible for Savannah to have CF. Hooray, right?

Move along to Friday, when we went to the Pulmonologist. I will say I was a bit flinty with the nurse. She had Savannah attempt a lung capacity test (which, went OK – but you know, she’s 5) and when she handed me the tube Savannah used and said “Oh just hang on to this for next time” I was so tempted to hand it back to her and say “Oh, we won’t be needing this”. I felt a little frustrated that she assumed my child had lung problems and would be a recurring patient. I just felt like telling them that MY kid was healthy – couldn’t they see that? I feel a little bad about that now, even though I maintain my kid IS pretty healthy.

We met with the doctor and he is lovely. Asked lots of questions, listened to Savannah’s stories and answered all of her questions, did a really thourogh exam and explained to me what HE saw in her X-rays. It is really amazing to sit with someone who knows what the heck they are looking at in an X-ray. There was a little progression (of the bad kind) between her 09 and 11 X-rays. He showed me the airways he was concerned about and  said that it was minor, but still ‘lung disease’. He then proceeded to ask about my CF screening – what type was it? Was Conor screened? He then said “Well, we need to start with a CF test for her”.

The room proceeded to spin again as he explained that the screening I had, while great, only screens for the most common CF genetic abnormality and it accounts for about 80-90% of the cases. We were then scheduled for a ‘Sweat Test’. CF kids (and adults) have abnormal amounts of salt in their sweat and the sweat test is a very non-invasive, easy test and it is about 100% accurate.

So I will say that I completely lost my mind on Friday. Dealing with this on my own for a week had completely worn me down and I needed my best friend and partner around for support. Single mom week is hard enough without dealing with a major medical issue.

Conor found me curled up at the end of Savannah’s bed when he returned on Friday night. I remember thinking I would just lie there for a moment when I went in to check on her, but I think exhaustion took over and I passed out.

We had a super fun weekend together. We blew off birthday parties and work for time in the sunshine. It was a good reminder to me that even if she was sick, or has a chronic condition – it doesn’t mean we can’t still have fun together. I should mention that her virus had completely gone away at this point and she was feeling great, so it was party time in the fresh air.

This morning (Monday morning) we were scheduled for her sweat test. We pulled up to Dell Children’s hospital and went to the third floor. Children’s hospitals are truly amazing places. We’ve had a little experience with them from Savannah’s hip dysplasia, but they are also such terrifying places. I hate seeing how many things can go wrong with a little human’s body. The floor we were on had prosthetics, the cardiac specialist, the pulmonoligists, the urologists, the orthopedics, the reconstrustive surgery docs and on and on. In the lab it was us and a bunch of kids getting blood work. You hear moms telling their daughters that ‘today might be a 5-8 vial day’. It just sucks.

So the sweat test involves stimulating a portion of the arm to open the pores. Then they attached a collection device that looked a little like the face of a watch with tube coiled in it to each arm. It collects the sweat. They wrapped her collection device up up and told us to bundle her up and ‘run her for 30 minutes’. It was 75 degrees here today. We had our little lady in a pair of leggings, flannel PJ bottoms, three sweaters, her fur boots and a flannel hat. Then, much to her extreme anger – she is a kid that HATES to be hot, ran her around the Strictly Peds complex for 30 minutes. I have to say that having Conor there was so fantastic. I think he has a future in personal training, because he had Savannah running the stairs, doing circles in the elevator, chasing me in the hallways and running around the building outside even though she was complaining.

We finished up, had a ‘great sweat’ as declared by the nurse and went home to wait for results. About four hours later, we learned that results were ‘normal’. Really and truly Savannah doesn’t have Cystic Fibrosis. For real this time.

While we were there, there was another little boy having a sweat test. He was about 2 1/2 -3. This is random, but I am hoping his family got good news today too. I have been thinking about them.

But now on to what DOES she have? We are going for a CT scan tomorrow and those photos will hopefully give the doctor some more information. We’re looking at the possibility of a ‘creeping bacterial infection’, some auto-immune diseases, TB, something called interstitial lung disease (which is a collection of a bunch of different lung diseases) and ??? We are not in the clear, but I feel like whatever it is, it’s manageable and we’ll get through it.

I will certainly keep you posted.

Thanks again to all of you who love our girl. Your prayers/vibes/good thoughts have been a refuge for me the last few days. Love to you all.

XOXO