Lab results
Labs looked good. Her immunosuppression level was a tad high but they’re not going to change anything. Labs again in three weeks and a well child check at her pediatrician’s office in the next couple. We’re just gearing up for Halloween here (with all our parties it will be an all week event).
Audiology check
Zoe passed her audiology test today with flying colors! We’ll be going back every six months until she’s three but so far there is no indication of hearing loss. She actually did very well cooperating during the test, even when they put the ear plugs in her.
We also did labs while at the hospital and we’ll get those results on Monday.
First steps!
Saturday night Zoe took her first steps; three to be precise. We were at a friend’s house and it was late as we were gathering the kids up to go. Paul put her on her feet and acted as if he was going to grab her hands but then stopped short. One, two, three steps. My theory is she was too tired to remember that she stubbornly refuses to walk. Since then I’ve only tricked her into taking one step.
A week in the life
What a crazy week. Saturday I found what I thought was blood in two of Zoe’s diapers (one at 11:00 at night) so Sunday morning her pediatrician sent us to the ER at Children’s. Murphy’s Law; everything that can go wrong will happen on Saturday or Sunday necessitating an ER visit. Those nurses and interns are so lucky! I brought her diaper with me and they got to test it for blood which, thankfully, came back negative but everyone was stumped as to the identity of the mystery substance. Jello dye? She’d only had two small bites. Amoxocillan? Very unlikely 12 hours later. They did a quick GI x-ray which came back clear and no one could tell me why she wasn’t peeing even though her liquid intake seemed fine. It was actually a pretty quick process but then no one could reach the transplant cardiologist who has to sign off before discharge. It took an hour and a half to track them down; I threatened to just leave but they know where we live so I stuck it out. All in all, it took just over four hours and Zoe was pleasantly upbeat and carefree. I had nightmare visions of our last couple ER experiences where she was terrified but either she had no recollection or just felt like going with the flow because she seemed to have the time of her life; she was even cooperative for the Resident. My opinion is that he must have been a third or fourth year resident because he was good and Zoe can smell fresh blood.
We’ve spent a pleasantly cold-free week and went in for flu shots today. Poor Noah, he HATES shots and puts up quite the fight. It’s hard to be patient with him since his sister gets poked about every other week. I just want to say, “man up; your sister deals with this ALL the time” but it’s not fair and his anxiety is real and a product of the differences between his life and hers. Although not very afraid of needles, she’ll probably have some irrational fear of worms or something benign like that.
On a completely different note, I spoke with a family today who’s child will be on the transplant list next month. I’m taking Zoe to meet them tomorrow and to answer more of their questions. It’s hard to find the words to say; wanting to be honest but not overwhelm. There are aspects of this experience I barely notice anymore but before her transplant the very idea would have seemed incomprehensible and more than I could bear. I have felt much of time very little information was given to us in preparation of what all this would mean for our lives. At times I’ve felt bitter about that but I think I better understand now; what can you possibly say that doesn’t bury them? The changes and adjustments, both physically and mentally seem to slowly evolve (at least some of them)and so are more easily integrated; a shovel full at a time. I guess you share a shovel full at a time so they have a chance to keep their heads up.
Will wonders never cease
Zoe has had another cold for the last week plus but on Thursday night she was up screaming for about three hours with the only indication of where it hurt being a couple pulls on her right ear. She finally settled down around midnight and slept on me for a couple hours before waking again. Her heart rate and respiratory rate were very high but I decided not to call in because pain elevates them. Friday morning she was her perky self except she had spiked a fever so I called and had the transplant coordinator paged and Dr. B ended up calling me back instead. It’s hard for me to know when I’m supposed to call the Heart Center and when I’m supposed to see my pediatrician. Everything changes as you get farther out from transplant but there is no definitive switch over and no one really tells you. So Dr. B said it was a healthy and normal response for her heart rate to go that high and she should see her pediatrician since it’s probably an ear infection but if there are no obvious signs of infection I needed to bring her in. Now here’s where the post title comes in. I asked him (since I had him on the phone) if I could give her things like Echinacea and Elderberry when she gets colds (not expecting an ok) and his response almost knocked me out of my chair. He enthusiastically, and with great interest asked, “do they work because with all the cold medications being taken off the market we’re trying to put together a parent resource of alternatives. You’re going to have to educate us on all this natural stuff.” Now this is the same doctor who wouldn’t let me give her Hyland’s Homeopathic Teething Tabs. This change is very welcomed and they’ve asked me to email in what natural remedies we use at home. Zoe can now take Elderberry when she gets sick but Dr. B called me back and said not to do the Echinacea because theoretically it could boost her immune system in a way cancelling out her immunosuppressant drugs and causing rejection. It’s just theoretical because there haven’t been any studies done (I guess no one would want to volunteer for that one) so he said not to try it. We’re happy with our Elderberry and here’s our personal round of applause for the Heart Center’s change of heart.
So back to Zoe. The pediatrican found a very red ear so they prescribed Amoxicillan hoping for success with a mild antibiotic. She had almost completely stopped eating solid food over the last 48 hours and was having very few wet diapers so I went over signs of dehydration with the nurse practictioner. After we got home she took a great nap, ate a good meal and then I gave her the first dose. An hour later I checked her temp and it was only a low grade fever. Hmm. She slept all the way through the night (her first 7 hour stretch) and when I took her temp it was perfectly normal. I’m not sure she needed the antibiotic after all but she started it and I get very little leeway to test out her body’s abilities because they get all nervous about those little things like sepsis. So I’ll grit my teeth, take a deep breath and push the pink stuff for the full 10 day course. It’s probably for the best since her body still isn’t producing much urine so something is obviously not quite right.
Run for Children’s
Sunday’s run was fun; wet, but fun. It poured the entire time we were there but the kids hung out in their plastic covered strollers and I ended up running more of the race than walking. Thanks to the Kleiners, Jack, Lacey, Wyndi, and Jenny who came out and braved the weather with us!
