Tuesday, September 20

Clinic and Culture Results

All three of us enjoyed our overnight in Baltimore, Md over the weekend. The city helped wash away a lot of our worry and drained the roller coaster of emotions we had  after Madeline's clinic visit. I am always thankful for ordinary distractions to take the obvious away from us for a few minutes- the inner harbor and city of Baltimore helped do just that. It allowed me to forget about Cystic Fibrosis for a little while....

We immersed ourselves in waterfront dining, drinks at the hotel bar, and a Laurie Berkner concert. We shared a king size bed all snuggled together. We watched Madeline squeal in delight as she danced and ran around to the street steel band concert. It seemed like the little things this weekend were a big deal.....

And that may be due to the fact that the Pseudo doesn't seem to be leaving Madeline's lungs. In fact, we learned that it may be extremely hard to eradicate Pseudo at home. We went over our "options" with the Madeline's doctor (s) at the clinic. They recommended admitting her to the hospital now for IV antibiotics for 14 days or trying one last (different) inhaled drug that we have not tried called Colistin.  It's been said that 80% of cf (children) patients can eradicate Pseudo through the use of inhaled antibiotics (such as TOBI  Cayston, and/or Cipro) after a few rounds. Since Madeline has been battling Pseudo for over 9 months and we have tried all these drugs with different combinations it appears that Madeline falls into the 20%. She represents the 20% of cfers that cannot get rid of this bug with at home antibiotics. There could be many reasons for this- all of which we are not exactly sure. The most common possibility would be that the Pseudo could be down in her airways further making it hard for inhaled antibiotics to reach.

In the waiting room before clinic

Because she continues to be non-symptomatic and is gaining weight every visit, the doctors are continuing to give us options. Once this round of at home antibiotics are finished we will have run out of options. Then, the only option will be for her to be admitted to the hospital for IV's for 14 days. This. Is. Exactly, What. We. Have. Been. Trying. To. Avoid.

So if Madeline was admitted she would require a PICC line. This is a thin catheter that is inserted into her vein (usually in her arm) and threaded up near her heart. This procedure would require madeline to be under anesthesia and is preformed in the operating room. Picc lines are used because IV's often fail after a few days of constant use. She would receive 2-3 drugs intravenously for 2weeks. It was also recommended that Madeline would have a bronoscopy while under the anesthesia for the PICC. (click here for info about a bronscopy). This procedure would give us an idea of what kind of bugs are in her lungs and tell us where the pseudo is.

There was some great news at clinic too. We learned that Madeline gained another 1.5 pounds in 6 weeks and now weighs 32.5 pounds! She continues to remain at the 80th percentile. Her doctors are very  pleased with her consistent nutritional status.

The culture results came in yesterday and of course our enemy was present- pseudo. It's hard not to be able to "fix" you child in circumstances like this. We will continue with our at home antibiotics  for 3 months until Madeline begins to become symptomatic or we decide that we need to admit her because it is just "that" time. The doctors continue to support our decision either way and tell us that there is no "right answer." As a mom I felt the ground move from under me when the doctor mentioned at clinic this: "I cannot guarantee after she is admitted to the hospital fo 2 weeks with IV's that Pseudo will go away. I just cannot tell you that." And this fact may be the hardest part. There is no "fix" that is 100% guarenteed.

As hard as this is, we are hopeful and we will continue to fight this fight.
Madeline is a fighter and so are we....


  1. Boo for the Pseudo. What a beast and a huge pain in the tush. I pray this round of meds work some magic and keep your girl out of the hospital. FABULOUS news on her weight though. She is such a beauty!!

  2. Sorry to hear about the Pseudo. I know the first hospitalization is the hardest but it will kick it and then you won't have to worry any more. Seamus has had multiple PICCs and scopes and they are never easy but I always think that in the end, it's going to make him healthier so they are worth it. Hopkins knows their stuff so they will only do what's best for Madeline. If you want to talk on the phone, message me on FB. I can give you the low down on Hopkins hospital, nurses, cafeteria, etc.


  3. Hey sandy I'm frustrated for you all. What I can say is when soph first grew pseudo at 6 months, we did 3 months cipro and colistin and then 14 days ivs. And we eradicated it. Unfortunately for us she picked it up again around 2 years of age and we tried everything again but no luck and now it's here to stay.

    Point is colistin did work for soph and still continues to keep the numbers down and has actually reduced them to some extent, so I'm hopeful it will help M. I hope that you knowing how well soph is gives you some comfort of Mr P. I went through all the emotions under the sun when we finally agreed it was going nowhere. It's hard but I looked at the positives, no lung damage at all, no symptoms and we react to any coughs and colds quickly.
    Sounds like you had a great over night trip and M is doing awesome nutritionally.

    Lots of love coming your way and we are right behind you with the fight. It ain't over yet!


  4. Oh, Sandy, so sorry to hear this! Hate Pseudo so so much! Best news is that the weight gain is awesome and she is well! Well done to you! I do hope you work out a good plan of attack that you and the team are comfortable with! We are in the same situation, actually just returned from clinic and we too are trying to decide the best plan of attack! Our stories are so similar! Tommy has cultured PA now on and off for 2 years, and although a very light growth we are now going to look at a bronch in December then IV's depending on what we find! It is all just to much sometimes, but hang in there, we are fighters together! Let me know if you want to chat!! Big hugs to you and your gorgeous girl!!


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