raising ladybug

We decided to put Adela back on her formula a few days ago since she was seeming a bit sluggish lately.  She never really bounced back from her cold to where she was before.  Before the cold, she was excited about trying new foods, was running (well, walking fast) around the house, and just generally in a very happy mood.  Since the cold about a month ago, she’s kind of fallen backwards in all three things.

It’s surprising, but the formula does seem to make a difference.  We started back on the formula Friday night and when she woke up on Saturday morning, not only was her mood better, but she was more active too.  That, and a better appetite has seemed to stay with her all weekend.  Of course, now we have to figure out why.  We can’t leave her on the formula because she doesn’t need to get too many calories (plus, we’re trying to move away from needing formula anyway).  But, if there’s something she’s getting in the formula that she’s not getting in her regular diet, we can’t not give her the formula.  Catch-22….

Well, looks like Adela has a cold.  Sniffly nose and cranky attitude.  She hasn’t wanted to eat much the past two days, but we’re trying to hold off on giving her formula since she just came off the formula.  We’d like to see if she can get over the cold on her own.

We’re pretty sure it’s not the flu since she doesn’t have a fever, so we’re thankful for that.  One of the odd things about having an egg allergy is that you can’t get the flu vaccine (both the shot and the nasal spray are off limits).  Since the flu vaccine is actually grown in chicken eggs, we don’t want risk her having an allergic reaction to the vaccine.  So, this year, we’re going to be practicing “flu avoidance” — plenty of hand-washing and avoiding sick people.

We visited Dr. Seashore late last week and got some good news — Adela doesn’t need to be on the formula anymore.  Since she’s eating both regular meals and getting formula at night, her weight is increasing at a faster rate than normal, so the plan is to stop the formula at night.  She was only getting about a quarter of her nutrition through the formula anyway, so this isn’t a big move nutritionally, but it’s a big move symbolically.

So, we’ve had her off the formula through the weekend and all seems to be going well.

Dr. Seashore wants to leave the feeding tube in through February.  His reasoning is that if she gets sick (like catches the flu) and her appetite drops for a few days, we’ll be able to get some formula in her to help her recover.  Hopefully, by February, most of the flu season will be over and she’ll be healthy enough that if she does catch the flu, the risk of her having a nutritional issue will be small.  We’re OK with that, but we’ll be looking forward to getting it out in February.

Last night’s retest of her electrolytes did show that her sodium was still a little low so we will be going home on that supplement.  The doctor said that it is her kidneys dumping the sodium but that it is just that they are still healing from the trauma.  The kidneys are not doing anything else that makes them think there is a problem with them.  Steven and I have learned how to give her her different feedings and I just learned my first lesson – don’t rush the bolus feedings – she puked!  They will be doing one more lab test this afternoon – actually anytime now.  When they get the results back (by 2 or 3) we will be cleared for discharge.  They are pulling together all our paperwork and supplies to take home.  There is also a health home care service that has been set up to provide her supplies every month as well as a few visits from a nurse to help us learn to care for her g-tube.  She already has follow-ups scheduled with her doctors.

We are just continuing to rest.  They are still looking at discharging sometime tomorrow.  She has been tolerating her feeds just fine and we are waiting to hear that she maintained her electrolytes without supplementation overnight.  We have had lots of people in and out all morning doing their check ins.  We have met with the dietitian and the vendor from the medical company, so we are set up for home.  The plan is for her to be on the continuous pump for 12 hours overnight and then 4 bolus feedings during the daytime.  They have all said it is more of an art-form than a science and it will change over time.

Adela continues to improve. Here is a rambling about today’s topics.

Her sodium is at normal levels so she doesn’t have to continue her salt treatments – thank goodness – because they were making her throw up.   She is still not sleeping a lot but the doctors seem to think its more just being in the hospital then anything else.  She is at her goal amount on her feedings (50ml per hr/26kcal) and seems to be tolerating them so far.   We are also waiting to hear about a possible diagnosis of fructose intolerance and a karyotype on her liver tissue.   Her latest blood panel shows that her hematocrit is up – which means her liver is producing red blood cells. That is a good sign because it isn’t the first thing that your body spends energy on – so it means that there is less (or nothing) going wrong in her body (like infection, etc).

She has met the goals for discharge for going home as long as she can keep up her sodiums and feedings. They are tentatively thinking Friday with plenty of follow-ups.

Adela is still having some confusion with her sleep schedule so I’m writing this a little blurry-eyed this morning.  The grandparents have been very good about entertaining her at odd times.  On the medical front they re-swabbed her and it came back negative for the virus so we are off banana suits!  Her doctor, Dr. Seashore, this week is very nice and is working on getting her formula amounts right for her sensitivities and her growth needs.  Her electrolytes are looking good.  If we can get a little weight gain going will be on the road to home.

I know that it’s been a few days, but things move so slowly I had to wait to have more to report to you.   Adela is starting to feel better and made some good milestones.

Here are the updates:

- She is able to sit up in a chair a couple of times a day.  She is playing with toys and using her baby signs.  She does still seem a little hesitant to talk.

- She received her last doses of Ativan and Methadone this morning.  She hasn’t seemed to have any withdrawal symptoms in the past day or two.

- They have been ramping up her calories in her formula and switched her multivitamin and she seems to be responding well to both.

- She just had her central IV line taken out.  All her numbers are looking better.  Her sodium is still just a little off and they are going to check her levels later in her urine (if they can get a sample).

- They also just finished an ultrasound on her heart to verify that it was functioning better than before and that looks positive.

- Her latest blood test shows continued improvement in the liver as well as her electrolytes which they have been supplementing for a few days.

Here’s hoping everything continues onward and upward.  The doctor today said that we might be home by the end of the week!  Just in time for the Easter Bunny!

Adela was able to come off the oxygen yesterday afternoon and is doing just fine.  Another step towards going home.  Right now they are trying to figure out her feeding.  That seems to be our only big hurdle left.  They are having to replace a number of her electrolytes.  She also seems to be a bit runny (poop wise).   Her doctors here on the floor think it could be refeeding syndrome or her renal tubular acidosis coming back.  They have taken her off her diuretic to get a better idea about her kidneys.  The dietitian came to see us today and she doesn’t seem to think that it is refeeding syndrome – her thought was that the multi-vitamin they put her on might upset her system since she does have sensitivities.  She is getting them to switch her over to a better one.  Hopefully we will see her tolerating her feeds soon!

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.