Monday, January 16

What does this hospital stay involve?

Here is a little about what our stay involves as it relates to Madeline's care and Cystic Fibrosis.  Of course we won't know how this will all play out until we check in. This is what we know so far....

Madeline will be admitted to the hospital on Wednesday. She will first be given an IV until they can schedule her to get a PICC. We have been told that her PICC will be done on Thursday.She will be taken to the operating room to get a PICC (which is a long IV line) that is usually inserted by a specialized teams of surgeons. The PICC placement requires an anesthesiologist to administer sedation. The PICC runs from the insertion point at the skin to the arge vein that goes directly into the heart. PICCs often last longer than regular IVs especially if you need them for longer than a few days.

PICCs can create a lot of hassle too. Oftentimes they can get infected or get clots in there requiring them to be removed. Young children can often "accidently" knock them out by using up their energy  (MADELINE!) Once they are removed the team has to start all over again. Our last stay when Madeline was 3 months was similiar to this PICC issue.  She had to have her piccs redone since one of them got infected and started to clot.

She will be given two drugs through her PICC. They will need to monitor her levels of antibotics that is getting into her body since some of these drugs can cause permanent hearing damage (loss of hearing) and can damage the kidneys. The dosage of the medication has to be monitored so that it she isn't getting any damaging effect. They monitor her levels by continually doing blood draws daily. (not fun for a 2 year old!)

Her cf team is also considering doing a Bronchoscopy (Bronch). This procedure allows for doctors to examine her lung/mucus secretions. The mucus is often examined to find what bacteria is present in her lungs and how much of it is in there. This is also performed in an operating room and may help us see if Pseudo is growing directly in her lungs or to see if it may just be in her nasal passages/throat. If she has extra mucus (which oftentimes cfers have) they can suction some of it out to clear out her lungs.


While she is the hopsital she will get 2 weeks of IV antibotics to try and get rid of the Pseudo. She will also be doing her usual (2 times a day) nebulizer treatments and VEST (physical therapy). In between all of this we will do our best to squeeze in meals, naps, and of course playtime.

Madeline will also be in "isolation" during her stay at the hospital. This means that she will not be allowed to leave her hospital room during the stay. Doctors, nurses, and any additional medical staff will be required to wear yellow gowns and gloves as soon as they enter the room. This is for Madeline's protection as well as other cfer who could get Pseudo from her. It also helps prevent Madeline from getting "bad germs" while she is in the hospital...especially ones that would complicate her lungs even more.

I will be staying with her in her room (as they allow one parent to sleep there). Jack will be going back and forth between his hotel room, the hospital, and work when days allow him too.

Thanks to everyone for your continued support. We cannot thank you enough for your calls, emails, and messages of thoughts. It means so much to us as we tackle Pseudo head out. More updates once we check in to the hospital on Wednesday.


  1. Wow Sandy. That is a lot to handle for all of you. I will be thinking of you and lifting you up in prayer. Hugs.

  2. Which hospital are you going to? I'll be praying for you guys during your stay.

  3. Big hugs you guys! Isolation is tough stuff, but we will all be rooting for you at the Topel House!

  4. Ugh, my heart goes out to you. I wish so badly I could come and hang out with you guys while you were there! Great job staying focused and organized as you go forward. Please feel free to let us know if there is anything we can do! Kick some Psuedo booty!! :)

  5. It is strange how they do different things in different hospitals. Zoey has breathing treatments 4 times a day in the hospital, and they do her picc in the room. Insist they do it first thing in the morning because she has to do it fasting, a hungry two year old not so pleasant as I am sure you know. They let Zoey go to the playroom with a mask until she caught a cold but staying in the room is probably better, we came back from that hospital stay with MRSA. I don't know if it is different for your hospital but they only checked Zoeys blood the first few days then when they got the levels right they stopped. Good Luck

  6. thinking of you and madeline! i hope everything goes well, and I look forward to your update after you check in...

  7. Much love to you guys. Hospital stays aren't fun but try and make the most of the one on one time together.
    I hope this huge attack kicks pseudo right up the backside once and for all!! Sophs first ivs eradicated pseudo so I'm crossing everything that it does the same for M.

    Huge hugs, take care and let battle commence!!

    Be thinking of you all xxx


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