BROCCOLI!!!!

Today was our first official introduction of solid foods for Meatball. He is just short of 6 months, which is the age at which babies are supposed to be "clear" to start solid food, but he more than meets other criteria, such as the ability to sit unsupported and the ability to pick something up and put it in his mouth. Loss of the tongue thrust reflex as well, I'm assuming, although the fact that he is feeding himself means that it is left up to him.

I say "official" because on Thursday when I was eating a salad, he swiped a cucumber, and a few weeks ago he stole a carrot from my sister but was stopped before he could eat it.

He already knows how to handle a piece of steamed broccoli pretty well. He grabs hold of the thing and gums on it for awhile. If he gets little pieces in his mouth, he gnaws on those for awhile and spits out the parts he can't handle yet. Same goes for the cucumber.

At this point, he needs to be closely supervised, particularly in a restaurant high chair, but it's still a win over spoonfeeding and mush.

the new sandbox

Borrowing the concept from Musical Daddy's entry on the nephrology consults, here are the changes in The Boy's medicine:

He is now on two anti-hypertensives and a diuretic instead of three hypertensives and a diuretic. He takes Isradipine (that's the correct spelling) three times a day, Enalapril/Vasotec two times a day, and Diuril in the morning. These are all small volumes of liquid, already mixed. The dose of the Enalapril is lower than it was a little while ago and is twice a day instead of once a day. The Isradipine is not as strong of a medicine as the Minoxidil. We'll monitor, of course, to be sure that his blood pressures stay okay.

He also will be taking less BiCitra, only twice a day, and they may even wean him from it entirely. Good thing, because he's not fond of it.

The big change, which may be temporary, or may not be, is the nebulizer. Breathing problems are another issue to be filed under "everybody has problems," and I am certain that many kids need them from time to time. For us, it's just another thing to add to the fun. For tomorrow and the next day, he gets it every 6 hours. After that, he is eligible for it every 4 hours when he is awake but only requires it twice a day unless he seems to need it more. He isn't fond of it. The treatment that we gave at 6 PM consisted of having to wake him up (since the thing doesn't work unless it is held vertically) and following his head around as he moved it around on Musical Daddy's shoulder. I would have said "rested" but resting implies stillness.

We can do this, just like we do anything else.

Next week should be the surgery to remove whatever is on his liver. It shouldn't be major but won't be just a simple in and out either. I hope that we are sent directly to the oncology floor after the surgery for his recovery, because we are already starting to "like" it there.

Getting going?

They're looking to release The Boy sometime today! They are sending him home with new meds and a nebulizer. Fun stuff.

We still have to wait a bit for everyone to sign off on his discharge, but since he hasn't had a fever and has been feeling better, they don't want to keep him.

Daddy and The Boy were in the playroom when he called me to let me know.

More info as it happens, but certainly the sooner we get out the better. My only concern, of course, is the biopsy that has yet to happen but it wasn't going to happen this week anyway.

Sleep is for the weak and change is for the better

Musical Daddy got CRAP sleep last night because people kept coming in to bug them. The Boy is getting breathing treatments every 4 hours, with CPT (chest physical therapy, I think) every 12. When I saw him this morning, he was much closer to normal even than yesterday. He was eating eggs and a bite or two of bagel with jelly, and thanks be to everything holy he decided to enjoy about 3 ounces of yogurt. That stuff might have a prayer of helping with the nasty diarrhea that he's still getting due to the antibiotics.

From the nephrology department: they decided to go ahead and play with The Boy's meds even though originally they weren't going to. That's fine--if they'd like to switch it up and try to get it right without using the strongest drug available, I'm all for it. More good news: they want him off the BiCitra if possible, or at least on a lower dosage. They may switch to a bicarbonate supplement instead, which is more difficult to dispense but is easier to tolerate. Considering that recently our attempts to give the BiCitra have caused screaming fits worse than vein-finding adventures or botched port accesses (not that we have experienced those things frequently but once is more than enough) have caused, I'm all for finding an alternate solution or at least cutting it down. My sentiment about this medication is that for the most part, his old team seemed to just up the dose and then leave it there without checking in to see if perhaps he did not require as much anymore. I'm glad to see that, particularly because he is a new patient, they are interested in seeing if perhaps there are better ways to get things done.

No major news about surgery to remove and biopsy the spot on the liver. Surgery sent a resident but that's the last I heard. This person said that The Boy's incisions looked good. Well, they should since most of them are over a year old. Musical Daddy's account of this exchange is much better than mine, as he was there.

I don't care too much about being "Home for Christmas." I have always had a strong affection for the holiday even though I am Jewish. The music is brilliant, and the displays are fun to see. Lately, though, the music has lost its luster for me, as has the holiday in general. I just don't care. My kids got presents every night of Hanukkah. My kids are being raised Jewish anyway. Were we still living close to my husband's family, I suppose we would have been included in their celebrations. As it is, we have a webchat date. I haven't listened to much holiday music even though usually I love it. I haven't actively been listening to music in general. I just turn my radio in the car to the classical station and enjoy whatever I happen to hear.

There are a lot of things for which I have lost my passion, and it is impossible to communicate that to others, particularly when I attempt to come across as a normal functioning human being. It is especially difficult for people to understand how hard things are when they don't even try and would prefer to judge from afar, and pass their sentiments along to others. But I digress.

My mother is at the hospital now. Musical Daddy is sleeping and will probably do so all day. I am waiting for Meatball to wake up so that I can feed him and then take him with me to spend most of the rest of the day with The Boy.

Switching it up a bit, kidney style

I just had a long conversation with one of the nephrologists. He'd like to switch things up for The Boy eventually in terms of his hypertension medications. The Minoxidil, which he has been taking since August, is really not a great thing to be on long-term. They'd like to try something different for him if they can. He said that maybe Minoxidil is the only thing that works but possibly they could try something different.

He also would like to switch him off of the Cozaar and back onto the Vasotec (Enalapril) because taking both can cause hyperkalemia (um...yea...we know that). For those who are not accustomed to speaking in medical terms, hyperkalemia means too much potassium in the blood. By the way, The Boy's potassium was a bit over 4 today, which is great.

The new drug to try will be Izradipine. Not sure if I spelled that right but in future posts I will have looked it up. It is in the same class as Amlodipine/Norvasc (which is the drug he was on after his initial diagnosis and surgery). It is also in the same class as ProCardia, which has been his rescue medication of choice. Izradipine is somewhere in the middle.

He said that they don't want to screw with things right away and certainly not while he is still recovering from something.

Although, with the Minoxidil having a reputation for being cardiotoxic, his 200-plus heart rates on Friday night and into Saturday probably didn't help.

So that's the update from the kidney department. More later.

Summary: The Boy looks very good and is getting back to normal.

Efficiency at its finest

The Boy's oncologist said that what he would like to see this week is The Boy's issues to resolve, the biopsy to be done, and for us to be out at the end of the week. That means that as long as we are here, we just go do it. They will transfuse platelets as needed, but they really need this biopsy to get done.

So do we.

The Boy has been better overall. He has been off and on with the fever, and the breathing issues are still there. The heartrate is a bit high for him but not ridiculous. He ate and drank a bit too. Playing with blocks got him out of bed, and listening to the music therapist was fun.

We have consistently enjoyed the new hospital because it is a children's hospital, and they try to keep the family in mind with everything they do. The brand new facility doesn't hurt either.

Breathe

We're not entirely sure what we're dealing with here. The cultures are coming back negative and the virus tests are too. The antibiotics aren't doing much for him in terms of getting his fever down. He is getting some respiratory therapies. The chest x-rays are relatively clear, but he has developed a wheeze and has a horrific cough. He's very uncomfortable.

What I'm not sure about is whether they tested for something fungal. I think that last time he was in the hospital for a long time, they started him on Diflucan and that seemed to clear things up. It took a LONG time for them to figure it out. We'll ask them tomorrow.

I guess we were thinking viral because of the cold/flu symptoms.

Nights at the hospital this time around are VERY hard because The Boy just isn't getting quality sleep.

I really didn't see him much today. I have difficulty dividing my time between my children, and it seems as though everyone is happier when Meatball is with me and The Boy has Daddy or Grandma, regardless of whether we're all together or not. Only problem is, I miss my Boy time. He's sweet and nice, and he's so much fun even when he is feeling crappy. He's such a character these days.

I was searching through a drawer full of photos in an effort to find baby pictures of me that look like Meatball. I also found my baby book. Apparently at 18 months I could sing my ABC's and Twinkle Twinkle, name all the Sesame Street characters, and count to 5. I will scan some of those old pictures so that we can compare. He really does look a LOT like me. The Boy does too, although he resembles Daddy so much. And Grandpa (on Daddy's side).

It's hard to believe that I'm getting tired already and it isn't even 10:30.