Clinic Visits the last few weeks, and a ped visit, and life.

Last week and this week were mostly the same. BUN is elevated (but stayed stable this week, and didn’t continue going up). I was not surprised that his BUN was up, because I’ve felt that he was a little dehydrated, but I was surprised it didn’t come back down. Then again, he might be vomiting more than I think. He’s better during the day (I think), but wakes up several times at night to vomit. They’re all small vomits, but they probably add up more than I think. They increased his intake to 1110 mL last week and we are still finding our groove with that quantity.

His sodium is down, which could mean that his little kidney that could is slowly turning into the little kidney that just couldn’t. Poor little kidney, it’s worked so hard for 9 months now… So he has a new prescription (I think that makes 9 meds again, though I’d have to go count) for sodium somethingoranother that’s slipping my mind. He was on it at discharge from the NICU, but was able to stop it for a while. At least now he has the tube, right?

We are still planning to replace the catheter and start dialysis at some point. I think he’s over the C-Diff, so that point is coming up sooner rather than later. It’s been a nice few weeks of pretending we don’t still have that looming over our heads. Part of me was hoping that they would have changed their minds, but I think with the recent jump in BUN and the sodium thing… even I am not sure I want him without a catheter.

Teddy has tried solid foods and had no interest. At first, he would accept food in his mouth but gag and vomit when it reached his throat. Now he vomits when I put it on his lips. So we’re done with that for a while. I can’t afford that much more vomiting, and honestly, him eating food with his mouth like a regular human is not my highest priority. Would it be nice? Sure. But whatever. Maybe I’m just tired, but I guess I see that as more of a long-term, after-the-new-kidney goal.

I’m researching blenderized diets in an effort to continue keeping him off of canned formula and eating real, whole foods like a regular human would… just liquidy and through his tube. Need to talk to the nutritionist about this plan, I’m not sure how on board she will be, but we’ll see. I can be a pretty determined son of a gun when I need to be. πŸ™‚

Let’s see…

Pediatrician says Teddy is actually developmentally delayed now… he’s far enough behind, she wants an eval by the Early Access people. So I have a phone call in to them, but haven’t heard back. She would ideally like him to get some physical therapy and maybe speech, too (to help with the oral issues). I’m interested to see what they say. She said that she thinks he *can* sit, he just doesn’t really want to, and she likened it to the Terrible Twos. Um, except he’s 9 months. And while I think it’s clear that Teddy has a mind of his own, I also just don’t think that a 9 month old is capable of anything resembling “terrible two’s,” which I don’t even believe in anyway. (Self-fulfulling prophesy, much? Twos are just misunderstood.) So I really like our Ped, and I’m choosing to believe I just misunderstood what she meant by all that.

Also, we’re not as bad off on Teddy’s vaccines as his medical records want to make it sound. True… he’s not as vaccinated as your typical child. But while I was pumping last night at 2:30, I did some plotting, using the CDC’s list of recommended vaccines and spacing intervals. Here is what he has left of the “infant” vaccines (I left chicken pox off this list… I have every intention of him getting natural chicken pox immunity, which I think will serve him better in the long run.)

3rd hep b 16 weeks (11/22) then done.

3rd dtap in 6 mo. (feb)
4th dtap in 6mo (aug 2013)
then done until age 4

3rd HIB 2 months (oct)
4th hib 6-9 mo (apr 2013)
then done

2nd Ipv in 2 months (Sept, hopefully)
3rd ipv in 2 months (Nov, hopefully)
Then done until age 4

2nd Pcb 8 weeks (Sept, hopefully)
3rd pcb 8 weeks (Nov, hopefully)
4th pcb 6 months (May 2013)

1st mmr feb 2013Β  (10 months after last IVIG)
2nd mmr age 4

1st hep a 12-23 months (probably Feb)
2nd in 6 months (prob Aug)

 

So… two in September, three more in November/December. Then a few scattered about in 2013, with the last one August 2013. So we are not doing bad. Just have to keep him infection-free, so we can stay on track.

 

In other news, my birthday was last week and I treated myself to the luxury of writing Dr. Mandsager a letter explaining to him why I will drive to Iowa City for any future perinatology needs I might have. I thought he deserved to know. The jerk. I’m not going to mail it until they’ve sent me my records, though.

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4 thoughts on “Clinic Visits the last few weeks, and a ped visit, and life.

  1. I am glad that things are going reasonable well. I read your day in a life post, holy moly women, you are going to need a long vacation at a 5 star resort when the harder part of this journey is over.

    I totally agree with you that the two’s are terribly misunderstood. We always had “terrific twos”.

    For some reason, based on what you said in one of your other posts, I though you were a vaccine free family. It seems like his kidney would really have to work hard to work through all the stuff in a vaccine.

    I hope this doesn’t come across as nosy or nasty, just wondering outloud. Families need to do what’s best for them πŸ™‚ I know when J had cancer they pushed me to vaccinate him (all the kids) I finally had to not so politely tell them where to shove their vaccines that are not tested for carcinogenic effect.

    1. We are vaccine-free, except for Mr. Teddy. He needs to be current with his vaccines to be considered for a transplant. In the grand scheme of things, particularly considering the toxicity of antirejection meds (and side effects, which include cancer), though I don’t love that he’s getting them, I’ve come to terms with it. I’d rather he have a new kidney. πŸ™‚

      1. You are not serious? I hate that the transplant board gets to play God. A friend that I made through a cancer group just lost her little girl. They wouldn’t give her a liver transplant because she had other disabilities. If I were in your shoes I would do the same thing πŸ™‚

      2. In all honesty, I don’t even really disagree with the reasoning. I have always believed that vax can be beneficial to some people. Since he will be on immunosuppressants the rest of his life, he will be much less able to fight off anything he is exposed to, and if he does get sick, he will be more likely to become seriously ill.

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