Hang in there, I’m almost done.
Zach was at Children’s for eight days. His first night we were told he could be there anywhere from seven to twenty-one days in order to receive his antibiotics through IVs. Because he was so little, his poor little veins kept blowing out just about everyday. It was hard on him, us, and his nurses. They didn’t like having to poke him. He was also a hard stick (he gets that from me) so each time he needed a new site, it took several tries. After a few days his docs decided to attempt to insert a PIC line to avoid needing more IV sticks. Because it seemed to be his fate at the time, the PIC line couldn’t be inserted, and then they moved on to insert a central line. This was performed successfully, however I was nervous to think of my son having a direct line from the ports into a giant vein in his chest. As parents, we kind of like our kids in one piece, their blood inside their bodies at all times, etc., so to think that anything could be attached to the ports and go straight into his blood stream was harrowing. While it made me nauseous, it worked very well for him. He could move his arms and legs, no more pokes in his scalp (which was the one spot he left the IV alone, even though it looked horrible), and it actually allowed him to be held more easily.
He started making big improvements as each piece of monitoring equipment was removed. Less cords and attachments meant he could be held. When I got to hold him, he felt safe and comfortable. When I got to nurse him, he did much better as well. Children’s is a breastfeeding friendly hospital, and the staff goes out of their way to ensure breastfeeding success even in times of grave illness. They supplied me with pumping supplies and stored any extra milk. If I wasn’t there, they fed him the stored milk. I received vouchers for free food from the cafeteria, there was a sign on his door asking to knock first because of a breastfeeding baby, there was a pumping room with a hospital grade pump, and they provided a lot of encouragement. I was worried about losing my supply and having to wean because of this. I am so grateful this wasn’t the case, because Zach continued to nurse for a total of seventeen months.
As doctors tend to do, some of them got a little too scientific at times. Zach’s intake and outputs (meaning amount of food taken in compared to dirty diapers) were monitored closely. That he was breastfed complicated matters a bit–there’s no way to know for certain how much he was taking in at each feeding. I would fill out a feeding form to track his feedings, but like a lot of breastfed babies, he often nursed for comfort. I know it would have been easier for the doctors to have a bottle of formula (or breast milk I guess) with a set number of ounces, subtract the amount consumed, enter amount into this line, correct for the output weight of the last diaper, multiply by some coefficient derived by a researcher, add his weight, and come up with a number that can be compared to a chart to determine if he was doing well. As I scientist I respect this simplicity, as well as its ability to remove some accountability. When he nursed, I was forcing everyone to go on a little bit of faith. And it turned out just fine. At one point as a precaution, a doctor ordered an NG tube insertion so he could take feedings directly to the stomach when he was too tired to nurse, and to top him off with formula or breast milk after each feeding. They were “so certain” he wasn’t getting enough, despite my objections. I conceded to the NG tube, as it was also a means of administering his nasty tasting oral medications. They were amazed when his stomach was full after a feeding and the tube backed up when they tried to give him supplemental nutrition. I wasn’t. I knew my baby was full. The NG tube didn’t last long. I just might know my son :).
This teeny tiny four month old baby was on a lot of medications while he was there. There was the antibiotic, then an anti-seizure medication, probiotics to offset what the antibiotics were doing to his digestive system, and supplements of calcium and vitamin D. About every two hours something was administered. He eased into a dosing schedule that was easy to follow when he came home. On day eight, Zach’s doctor was impressed with his improvement and didn’t think it was necessary for him to stay in the hospital to have his antibiotic administered, and suggested he could come home with a load of equipment for us to give it to him. I was shocked. I was expecting the back and forth from Lincoln to Omaha to go on and on, and here this was the last day in the hospital. The idea of giving him the antibiotic through a pump at home scared the living crap out of me, but I knew getting home was going to be good for him and the big kids. After what seemed like a rapid fire tutorial on the procedure, we were packed up and ready to go (okay, so it took several hours to complete everything). He came home with prescriptions for all of his meds and a lot of swag. The nurses were happy he had done so well and was going home, but they were going to miss his chubby little face. I was (and am) so grateful for the care they gave Zach. Nurses don’t get enough credit for the work they do.
We got home and got ready to give him his first at home dose of rocephin. After nearly vomitting, I called my mom (RN extraordinaire) to oversee the process as all confidence went out the window. After the first time, the next times were easier after learning the process. And by easier, I mean how it’s easier to hit yourself over the hammer each time you do it. You’re thinking “but Sara, that doesn’t get easier!” And I reply, “Yes, I know.” After completing his course of antibiotics at home and a few visits from the home health nurse, he was ready to go up to Omaha for follow up appointments with about ten thousand different doctors. He got the all clear from all of them, and was ready to have the central line removed. The surgeon who inserted it also removed it, and it was as simple as pulling it out of his chest. When I saw how long the tube was, I was about to scream “YOU DID WHAT TO MY BABY?!?!?” (sometimes motherhood can be a bit irrational), but I held it in. A tiny pressure bandage was all he needed. I still think ten stitches and five layers of bandages would have made me feel better, instead of thinking my baby was going to lose all of his blood if he got bumped by something. Again, irrationality. I can’t help it.
He was all better, clinically. He was on probiotics for a long time after the antibiotic ended to restore his intestinal flora, which aided the breastmilk. Then the little guy had to fully recover. He lost his neck strength from lying in bed and from the effects of meningitis. Looking back, I had unreasonable expectations of how long it should take for him to truly be all better. I thought maybe a week or two, but it was more like several months. He was a hearty eater and slept well. That boy didn’t leave my side after this experience. I needed to know he was okay.
His journey continued towards receiving services from the Early Childhood Development network, where we met his many wonderful therapists and care providers. Again, that is a story of its own that is ongoing. As is necessary after meningitis, he had to undergo hearing testing to see if either meningitis or his medications damaged his hearing. He sustained significant hearing loss that continued to worsen, and he received a cochlear implant in September. Again, this is another story.
At this point, my baby is better but facing a world of unknowns, and I was the navigator. It has been an exhausting three years, but worth every moment. Because of Zach many amazing people have become a part of our lives. He continues to amaze me with his accomplishments. Zach is a very willful, stubborn child, and those traits have served him well. Don’t tell him he can’t do something, because he will do it. That’s been part of my method, “don’t do that, blah blah blah” and then he’ll do it and I’ll think “ha!!! Gotcha to do it!” He’s just like every other little kid in most ways.
While I have never met anyone else with PMG, in the internet world I have made many amazing connections. Back in my Babycenter.com days, I met a mom with a little girl the same age who was diagnosed with PMG about the same time. They have had a lot of similar experiences, and it is neat to get to see her advance as well. On Facebook, I have found groups with families of people with PMG, mostly parents, but there are several members who have PMG as well and lead wonderful lives. This is what I was looking for, happy stories. I have found a place to celebrate and commiserate. The PMG Awareness Organization was recently founded to educate and support research regarding this condition. I can’t say enough about this group. Check out their website to learn more about PMG and how the organization helps people like Zach.
A lot has happened in a short amount of time, and looking back on it, I see that it was a whirlwind. I kept moving one step at a time and one day at a time. It’s one of those experiences that you don’t know if you could do it again if faced with it again. After a few battle scars, we are no worse for the wear. Now it’s great to see my little man grow and thrive. And I’ll be writing a lot more about him.
Thanks for reading my story.