raising ladybug

Adela made a bit more progress today.  While we had to jump back to 0.5 liters per minute on her oxygen flow last night, she is now down to 0.3 liter per minute.  Here’s hoping we’re able to maintain that tonight.  Her various labs continue to improve with the exception of her electrolytes (sodium and potassium specifically).  While we were in the PICU, those levels were higher than normal, however now they are lower than normal.   She received some sodium and potassium supplements in addition to a multivitamin through her g-tube…and then promptly threw up.  While this has made all of us very nervous, the nurses and doctors explained that it’s likely due to her having trouble with the increased caloric value of her formula.  Right now, she’s at 22 calories per ounce and we need to get to 30 calories per ounce before we leave.

The main IV line is still in.  After an exam and an ultrasound of her veins, the nurse decided that her veins are far too small to put in a PIC line (that would have allowed the nurses to give meds through the IV and also draw blood).  Looks like we’re just going to have to take our luck with the main line not getting infected for the next few days until she doesn’t need as many labs drawn.

Adela has been awake since this morning and, so long as Mommy is close by most of the time, in a calm mood.  Nana has been able to entertain her for a little while with reading and a toy flower (which actually brought about multiple smiles).

Unfortunately, I need to head back to work tomorrow.  It will be difficult to leave Adela (and Ali) for those hours during the day while she’s still in the hospital, however I’m hoping that by next week, she’ll be at home.  I’m planning to just leave from the hospital in the morning, swing past home for a change of clothes, head in to work, then return to the hospital for the night.  Ali will have Grandma (Cindy), Grumpa (Carlos), and Nana (Netta) to help out while I’m not there (in addition to when I am there), so that makes me feel a little better, however I know I’ll feel uneasy until Adela is home and healthy.

Yesterday and today have been thankfully uneventful.  With the doctors cutting back on Adela’s heavy pain medicines and anti-anxiety medicines, she is waking up more and, when awake, is more alert.  Her voice is still very raspy and she isn’t talking much (understandable since between the combination of her vocal cords needing to recover from having been on the ventilator and her respiratory infection), however she is signing some to us.  Last night while she was awake, Ali even made her smile a little.  It’s nice to see some of her personality returning.

Her oxygen flow has been weaned to 0.4 liters/minute and, over the next few days, should continue to be reduced until she no longer needs either the extra flow or the oxygen itself.  We’re hoping that the main line in her neck can be removed tomorrow without needing to put in a different IV line to replace it, however we’ll see what the doctors say.  Also, the caloric density of her formula was increased a little today.  The doctors are increasing it slowly to make sure she tolerates it well.

After talking to the doctor, it sounds like there are three goal Adela needs to meet before we’re headed home:  she needs to be off the supplemental oxygen, be weaned off the pain and anti-anxiety medicines, and make sure that she’s tolerating her new formula at the higher caloric density.  Hopefully we’re looking at near the end of next week if we’re lucky.

Ali and I walked up to the UNC Student Store today and picked her up a little UNC Chapel Hill t-shirt for her to wear when she gets better.  Here’s hoping UNC wins against Oklahoma right now…

We have just moved up to Adela’s new room. While the PICU doctors cleared us to move this morning, we had to wait for a bed to become available upstairs. We’re now on the 5th floor in the CICCU (pronounced as “kick you”)…the Children’s Intermediate Cardiac Care Unit. The room is much larger than the one in the PICU, so all the family can be in here at once. Plus, there’s enough room to sleep in here with her.

Adela is now at her target rate for the formula flow (30 ml/hour), so her IV nutrition has been stopped. Also, we’re on the last day of her remaining antibiotics. The doctors were planning to remove her main IV line in her neck, but have decided to leave it at least through the night and possibly through the weekend. They just want some IV access for the next few days, so if they can leave the main line, they won’t have to put in another. Adela is notoriously hard to get an IV line into or to get blood from, so the less they have to stick her, the better.

Unfortunately, she’s now back to running a fever of 101.5, so the nurses took a culture to see if she has another infection. We won’t know the results of that until tomorrow. She did just get some Tylenol, so that should bring down the fever some.

We’re off the “contact precautions” again, so we no longer need the fashionable yellow gowns or blue gloves, but we are on “droplet precautions” because of her RSV, so we still have to wear the masks. We’ll probably have to wear them until we leave the hospital.

Oh, and “Go UNC!”. (We’re watching UNC play against Gonzaga right now.)

A lot happening today…

Adela did well with the increased formula rates overnight, so the doctors and we are in agreement that she’s ready to move out of the PICU and into a regular room.  We’re quite excited since this is a big step toward going home.  We know we’ll still be here for a week or so, but at least we’ll have moved away from the PICU (and all the emotional implications of being in an ICU room).  Even though we’re happy to be moving, part of us is nervous as well.  It’s been great having such attentive nurses literally ten steps away at all times and to have that high nurse-to-patient ratio.  However, hopefully we won’t need the nurses nearly as much up on the floor, so it should balance out.

In addtion to our moving today, Adela is going off her remaining antibiotics and the TPN (total parenteral nutrition).  That, combined with changing her remaining medicines to be given through her feeding tube, means that we will no longer need the main IV line in her neck.  The timing is good because as she’s been waking up more, she’s been scratching at the tape that covers the line and is making it leak just a little bit.  They’ll need to put in a regular IV line (probably in her foot) just in case they need to administer any medicines, but hopefully that shouldn’t be a problem.

Her labwork shows that her liver is still slowly improving and the doctors felt that she’s making such good improvement with her lungs that they didn’t order an x-ray for this morning.

So, all around, good news.  Hopefully our next blog post will be from the (relative) comfort of a little bit larger room upstairs.  Then Ali and I can actually sleep in the room with her rather than in the PICU waiting room!

Adela is taking it easy today.  They have started working on spreading out her “fixes” of medicines.  She seems to be doing ok.  They are also just watching her while they ramp up her feedings.  They said they would keep her here in the PICU until morning (unless they get a lot of traumas) and then send her upstairs!  So a little sooner than we thought, but we are so proud of Adela that she is doing so well.  Hopefully her doctors and nurses upstairs will be as attentive as possible.

Adela seems to be resting now…she drifted off to the sounds of the seashore from the white noise machine here in our room.  The nurse just came in to give her a dose of Ativan (which relaxes her), Lasix (the diuretic), and a few antibiotics in addition to a diaper change.

When the nurses took Adela down the hall for her fluoroscopy, they switched her from the high-flow nasal cannula (the plastic tube with the two prongs that fit in her nostrils) to the regular nasal cannula (which we have started calling a nasal cannoli).  She did so well with the change during the test that they decided to leave her on it.  That was one of the remaining hurdles that needed to be cleared before we could leave the PICU.  She can go “up to the floor” (to a regular hospital room) on oxygen, but just not using the high-flow device.

We still don’t have any results from the fluoroscopy.  Since the PICU doctors seemed to want the results of it right away, it will, of course, be tomorrow before the report is available.  Go figure.  The PICU doctors originally wanted to wait for the results of the test before restarting her continuous feed of EleCare, however I think they’re going to go ahead and restart it anyway tonight after rounds.

So, I will say goodnight to everyone while I decide whether to leave the seashore turned on or switch it to one of the other sounds.  I personally like the rainforest, however we’ve been listening to it for the past three days, so I think it’s getting a little old.  I might try the rain sounds…it would at least match the weather outside right now.

Adela is doing well according to the doctors.  However as they are trying to wean her off her drugs she is having some withdrawal that they are managing.  She gets restless and confused.  Hopefully the worst will pass in the next day or so as she adjust to not being on the fentanyl and just on her “milder” drugs and then they’ll work backwards on those.  She is going in at 2:30 for a GI study.  They put some barium chalk in through her g-tube and watch it for a little while to make sure her reflux hasn’t been a sign of a more serious problem.  I don’t know that it’ll show anything, but I understand they want to check before they restart her feeds at a higher level.  Especially after the original throwing up incident.

This morning, the nurses removed Adela’s arterial line in her femoral artery.  That was the line that was used primarily to monitor her blood pressure continuously and to draw blood for her “arterial blood gas” tests (which, among other things, tell how well her lungs are doing).  This afternoon, her Foley catheter was removed.

So, two more steps on the road to recovery.

Adela seems to be doing ok without the ventilator.  They are very slowly weaning down the force of oxygen she is getting through her tubes.  She slips between sleeping and slightly delirious from her meds.  They are working on the weaning process for those as well.  She is using her sign language and has tried to talk a little, but she is still very horse.

Unluckily for us we are now on full contact precautions (gloves, bright yellow gown, and mask) because one of her cultures last week came back positive for RSV.  This isn’t (hopefully) a big deal for Adela because she should be already on the mend from it, but the hospital is a little snippy about it and it sounds like we will have to stay on precautions until discharge (ugh!).

Adela was extubated at about 2:30 this afternoon and so far is doing fine.  She is on a HFT cannula.  Basically the nose tubes with warm air and a little extra oomph behind them.  They will work her down to traditional ones when she’s ready.  They are working with her on getting her to clear the mung left in her throat, but she is showing her tough side!