Day 181

Avery is still showing signs of progress at home.  She is becoming more interactive and loves to watch people when they talk to her.  She is still gaining good weight.  We met with her PA in the pulmonology office last week and they were pleased with her progress.  We started weaning her oxygen by taking her off oxygen support altogether during part of the day each day.  We are supposed to build up to two times a day for two hours each in which we remove oxygen and just watch how she does.  So far she's done great with it and doesn't show any signs of labored breathing.  One possible concern we are watching is the neurology office in their last checkup seemed to be a bit concerned with Avery's head size and the firmness of her soft spot as potential indications of problems with her shunt system.  They requested a new head ultrasound be done, which we did last week.  I watched it and could tell that the ventricle on the left size was really quite abnormally large based on what I've seen in these images in the past.  This could potentially indicate a problem like the shunt beginning to malfunction or clog up and not drain out fluid like it's supposed to.  When these devices fail, they are sometimes accompanied with symptoms like being in pain or uncomfortable.  Avery has been acting more irritable the last three days or so, but it's unclear why.  We have a follow up visit next week to sit down with the neurologists and talk about it.

On the plus side, we had a great experience in the hospital the other day when we had taken Avery in for an appointment, and the physical therapy / occupational therapy people were there at the same time, so we got to get Wren and Avery side by side, sitting up, and looking at each other.  It was really fun, and besides having the girls together in Wren's room for Christmas, I don't think we've had the girls touching or being side by side pretty much since they were born.

Wren's progress has still been up and down of late.  Since we last wrote, she has gone through another transition of spending time, the time about a week, on the ventilator, and switching back to the oscillator again after a CO2 spike.  She has been back on the oscillator a week or two now and is finally back to settings again where she could be weaned off, but the doctors are choosing to hold off to give her more recovery time for her lungs.  For us, this translates to not getting to hold Wren once again, and her being uncomfortable because she can't move.  You can see in the pictures she is also wearing a sock on her hand, those have been making appearances on and off in part because she started scratching her face with her fingernails a lot, and in part because she started grabbing all of the tubing she could find, like the g-tube connections, the vent connections, and other general wires, and yanking on them hard.  Her new pastime is keeping the nurses and RTs on their toes by popping out her trach tube a few times every day.

Yesterday, we had a bit of a scare with her that turned out to be a non-problem.  While I was there reading to her, she was resting peacefully for part of the time, then suddenly started moving a lot in discomfort.  This is normal for her, because she is still having withdrawals from pain killers, and from time to time starts to get really fussy and arches her back, kicks her logs, cries, and so forth.  So while she started fussing I tried comforting her, and she pushed really hard on her trach tube which had the effect of pushing the trach some out of her throat rather than popping the tube off of the connector.  Suddenly, her face and lips turned purple.  I was too surprised to react appropriately to it, but fortunately the medical staff is well trained to deal with these situations.  When her nurse of the day Gretchen saw the color change and a heart rate drop off the chart, she felt for a pulse and immediately yelled out for someone to call a code and to get people there immediately.  Before I understood what was happening, I was moving out of the way for several doctors and other people to run into the room and start checking out Wren.  A code was called over the hospital intercom and other emergency staff came showing up.  I watched Wren's nurse administering CPR, and no pulse returning for a moment, and for a brief second I was afraid I could watch the worst happen, but almost as suddenly, her pulse returned and her oxygen sats returned as well after the RT quickly switched out her trach for a new one.  While this was going on, I had no idea what was happening, but luckily there were great nurses to comfort me while I stood feeling helpless.  After things settled down, it was clear that some simple problem was likely to blame, and people filtered out.  The doctor had an EKG and ultrasound ordered to check on her heart, but it appeared that the issue was most likely related to her vagus nerve.  The doc told me that sometimes when trach kids put a lot of pressure on the trach, they can press against this vagal nerve, which if done with enough force, can cause them to suddenly pass out and lose heart rate for a moment which is what happened.  So, not a big deal, but I was definitely freaked out for a short moment there.  It turns out that Wren just wanted some extra attention...or maybe she didn't appreciate me reading Hitchiker's Guide to the Galaxy to her.  She is ok and back to normal now and has had no other such weird scares, but wow, this girl keeps us on our toes.

I'm adding this to the list of things she's going to be grounded for when she finally comes home.  So far her grounding is up to 10 years.

Day 160

Wow, it's been three weeks since we wrote anything.

Our Christmas was absolutely awesome.  The amazing staff at our NICU got together and sponsored Christmas for us which meant that many generous people bought gifts for us and all of our kids.  We have a pretty big family, and the fact that they did this for us was no small feat.  It was a great experience for our kids to see how many people care about us.

Wren in the PICU had still been on the oscillator, and as a result we had been unable to hold her for something like 35 days.  We had told our nurses there that we were hoping to bring our entire family into the Wren's room on Christmas day assuming everybody was healthy (no small miracle).  When we got in that day after opening presents at home, Kyndall our nurse and Sabrina (RT) had been planning to surprise us with getting to hold her.  This is a bit of a production since the oscillator uses thick, rigid tubing that has very little wiggle.   After about 20 minutes of prep time, however, it worked!  Shannon got to hold Wren, which seemed like a perfect ending for this great Christmas.

I watched Shannon holding our daughter, and seeing our entire family in the same room for the first time, and it struck me that this had to be the most blessed Christmas we have had together.  

While we were there we sung a Christmas carol while Wren watched her brothers and sisters.

                                     

A few days after Christmas, Wren transitioned to a conventional ventilator.  She seemed really happy and was doing well on it, but after a couple of days, her CO2 suddenly spiked and she had to be sent back to the oscillator again.  Sadly, she tested positive for another bacterial infection, which looked like a repeat of MRSA according to the lab.  She was put on a set of antibiotics once again, and back to the drawing board.  Within a week or so, she seemed to be back to making progress.  However, about a week ago suddenly her CO2 once again spiked, and our fears were again confirmed when she was found to have ANOTHER bacterial infection, a couple of days after her last antibiotic course had run.  This time, it involved, MRSA, Klebsiella, and one other one that I can't remember.  The result was she started feeling sick again and her respiratory needs went back up.

This was the third time she got some kind of infection since at the PICU.  I hope that this rate of infection is not normal, because this poor baby cannot seem to make any progress at the rate things are going.  All of the infections she has gotten have been with bacteria that are commonly present in a hospital setting.  So, if she was at home, she wouldn't be at such risk of these infections, but she can't seem to get home to us, because she keeps getting sick which halts her progress.

As of today, she is again getting back on track.  Her antibiotic course is almost done, she is now receiving full feeds of 70 mL / 3hr via the G-tube, and her TPN is no longer needed.  I talked to the nurses and doctor a couple of days ago about the need to get us holding her and helping take care of her again, and she was doing well enough today to support putting her back on the conventional ventilator once again.  We are hoping it goes well this time, but now I am cautious.

                       

On another note, Avery continues to do really well at home.  She is eating a lot, sleeping very well, and starting to smile once in a while.  It's great!  All she needs now is her twin sister.