Saturday

Thursday evening Steve went to visit Natters and had a wonderful time. She was wide awake for over an hour and very responsive. He came home looking like a man in love. The girls are lucky to have such a wonderful daddy.

He did mention that an IV in Natalie's hand had infiltrated leaving it very red and swollen. Her nurse drew a border around the discoloration so they would know if it was getting worse.

I went in the same evening and had a totally different experience than Steve. After suctioning Natalie desatted and ended up at 100% O2. I waited for hours hoping to see her improve before I went home but she just did not recover from it. I left discouraged and sad. Her hand looked very painful and she seemed so uncomfortable.

I couldn't sleep so I called at 2am and she was not doing any better. Around 4am they drew a blood gas that looked great and did a chest X-ray. Once again there was no known reason for her requiring such high levels of oxygen. She gradually came down during the morning and by the time I arrived at noon she was sitting in the high 60's.

Friday we received word that Natalie would be moved to one of the private isolation rooms. As a result of discussion at the care team meeting, the powers that be felt she would benefit from being in a more quiet space where the lights can be lowered to her liking. We were nervous about the move as she would be disconnected from the oscillator and hand bagged. When lung volume is lost on this vent it is hard to bring it back up. As it turns out she handled it beautifully-she left pod D2 at 67% and arrived in her new private room at 67%. We were reminded of my move to a private room while I was on hospital bed rest. It saved my sanity but then again Natalie has had MUCH cuter roommates than I ever did.

We are hoping she enjoys her new space. While she is better protected from the sounds of conversation, crying and alarms, the small space amplifies the noise of the oscillator. That beast needs a muffler.

The repeat u/s on her kidneys shows the same lesions as last week. There was no real change in size. There is new debris in her bladder, though. The radiologist is now skeptical that she has fungal balls as usually they would see a change one way or another over the course of a week. She will remain on the anti-fungal meds as a precaution and they will repeat the u/s in a week. They offered to do another urinary cath for culture but we declined. I see no reason to put her through that when she has yet to have a positive urinary culture and she is being treated anyway. There are no good theories on what the debris or lesions in her kidneys could be.

The move to oral sedation went well. I am so grateful to the nurse who attended the care team meeting and pushed the issue of her sedation. Now that the morphine is oral she no longer needs IVs and the antibiotics can go through her PSC line. Everyone involved is glad to see Natalie spared numerous IV attempts.

Her CRP continues to drop. At rounds on Friday they were deciding between a 10 or 14 day course of antibiotics. I could barely contain myself. This child has been on and off more antibiotics than I can list. Now she is on one that is actually making a difference and I want them to be darn sure they go the full 14 days and get this infection. Luckily the attending agreed or I would have had a meltdown.

So, the best parts of the week from a medical perspective are the improving CRP, the move to oral sedation and the return of full feeds.

Natalie does seem to be feeling better over the last few days. We have not seen a marked improved in her respiratory status, BUT Steve just called for an update and she is sitting happily at 53%, a number we have not seen since the beginning of the week. I know better than to get myself worked up over it, but it certainly puts a smile on this mommy's face.

Natalie enjoying her new room...


Her hand is looking much better today, thank goodness.

I know there was more I wanted to say, but there is a very cute 2 year old who needs tending to before I go to the hospital. Thank you all for your support over what has been an especially trying week. We are all pulling through and so proud of our little warrior.