Let the Games Begin

Averi has had quite the beginning to her hospital stay.  She was admitted at 6:00 last night and we were shown to one of the smallest rooms I have ever seen.  After answering all the routine questions about her diet and care we started her feed and she quickly fell asleep for a nice relaxing evening…

At 9:00, the IV team showed up start her IV.  After poking her twice, they diverted to the nurse coordinator who poked her twice more and then paged the nurse practitioner from the NICU.  Two more pokes and 3 hours later they finally got an IV started in the crease of her right foot.  She screamed so hard that petechiae (those broken blood vessel red dots on her skin) burst all over her face and arms.

(Warming all her extremities in hopes of finding a vein.)

Dan was spending the night and at one point asked the anesthesiologist what would happen if an IV wasn’t started.  He explained that Averi couldn’t go into surgery without first getting a platelet transfusion.  Luckily she was finally able to get the transfusion at 1:00 in the morning.

At 3:00 and 6:00 the nurse returned to poke her several more times, including her head, in hopes of getting enough blood for several tests.  Both times the blood clotted and was unusable.  It was decided that they could wait until after her central line was put in to do any more tests.

This morning, after a restful night, Averi was taken to the OR for her procedures.  First the ENT came and conducted an MRI of her head to see what is going on with the lack of hearing in her right ear.  After that the oncologist did the spinal tap and put a little bit of chemo in her spine.  Finally, the surgeon, who also did her second G-Tube placement, put in her central line.

(Dan put the socks on to keep her from pulling her IV out.  Note the crib made of PVC pipe to take into the MRI room.)

Everything went as well as it could have.  The surgeon said he was able to go in through the vein on her neck, which is preferred but not always possible, and placed the line in the center of her chest.  We originally thought she was going to have a picc line, which is attached to the arm, but hers has two ports that come out her chest and are taped down on her stomach which is much easier to keep out of the way and can be covered up with plastic wrap while taking tub baths.  They refer to it as a double broviac catheter.

It took 2 more hours for her to be returned to her room and she sounded horrible when she got there, which is normal.  She was on a little oxygen but they quickly weaned her off it and took out the IV (yippee, no more pokes).

A chest x-ray was done in the OR so all she had left to get were an echo and an EKG.  She was still really out of it from the anesthesia so the echo and EKG went really well.  Once we were back in the room again the nurse came and got several vials of blood from her broviac for testing.  Averi slept right through the whole thing.  It was wonderful!

(Dan was so tired, he almost fell asleep during the echo.)

At one point we met the nurse practitioner that will be over her chemo treatments.  I asked her how quickly Averi would get sick once we started (would it get worse each month or start bad and stay there) and she said the first few months would probably be the hardest.  Great!  She then told us that they haven’t had a patient with MDS for several years.  There’s just more proof that Averi loves the word RARE.

Since everything was done for the day, I decided to head home and spend some time with Kaili.  Not too long after my return home, I got a call from Jennifer, who had gone over to visit Averi and Dan, that Averi had a fever of 103.8 and the results of another chest x-ray showed severe pneumonia.  They don’t know for sure where it came from but the speculation is that she aspirated on her spit during intubation.

She was given a breathing treatment, antibiotics, lasix, and some Tylenol.  Then the PICU doctors were sent up to examine her and learn her medical history so that they can be ready if she gets any worse and needs to be sent to their floor.  She won’t be able to start her chemo until she recovers from this and her temperature stays below 100 for 24 hours.

For the time being she is finally a little bit awake but burning up.  Hopefully she will have a less eventful night and be able fight off the infection in her lungs.  I could be wrong, but I’m pretty sure she’s not supposed to get sick until after the chemo starts.  Of course, with Averi, we should expect it.