Our “Speciality” in Kids with Medical Issues

I mentioned in an earlier blog that Seth and I specialize in kids with medical issues. Here’s the story of how that came about and some of the kids we’ve had with medical issues. 

It started gradually with kid I shall call Gronckle (for his resemblance to the dragons in How to Train Your Dragon – fattest cutest thing ever). He was about seven months old and was generally healthy except for being an ongoing MRSA carrier with occasional outbreaks, and having a really severe case of eczema. 

We eventually figured out that he was reacting badly to the proteins in dairy, and needed a hypoallergenic formula. It took us a damn long time to convince the doctors at the clinic we take the kids to that foods could have anything to do with eczema. I lost all patience with the doctor and got snippy which never gets me anywhere. Seth, on the other hand, remained patient and calm and ultimately succeeded, over the course of several visits, in convincing the doctor to write a script for the hypoallergenic formula so Medicaid would pay for it rather than our paying for it out of pocket. (We were spending $80 per week on hypoallergenic formula at that point, and it wasn’t financially sustainable for us.) 

The whole experience managed to gain us the respect of the particular doctor involved. In our county we are required to take foster kids to a particular clinic that has a couple of doctors and couple of nurse practitioners. It is explicitly for foster kids and prevents us from having to try to find pediatricians who will take Medicaid. At first I was frustrated with the set up but have come to recognize that it is a gem, and I wish other counties would do the same. So the fact that we had earned the respect of one of the two doctors there was rather significant.

After Gronckle went home to his grandmother, we got Mouse. I’m not sure how we wound up with Mouse, but it’s one of those things that makes me almost believe in divine intervention. We needed her as much as she needed us. 

She was four months old, exceptionally tiny, and exceptionally fragile. She had sustained a head injury from falling off the couch onto a hard tile floor, and had developed subdural and subarachnoid hematomas. Thank God she was so young because her fontanel had not yet closed, so that her head just grew bigger to accommodate the blood and fluids under the surface of her skull, rather than putting too much pressure on her brain. 

That said, at the time we didn’t know how much brain damage, if any, Mouse had sustained. She was significantly developmentally delayed. And she was a very very sick little baby. She couldn’t keep down food, and was deemed failure to thrive because she couldn’t gain weight. She would wake up every two hours in the night for food, but then vomit most of it back up. Her cry was so weak we could hardly hear her (hence the nickname “Mouse’). Her head kept growing and growing and we were so worried that she would need a shunt placed in her head because the fluids around the injury site were not breaking up and draining, but rather were increasing. The number of medical appointments she had was absolutely staggering. She was seeing 2 to 3 specialists per week. 

And for three months we seemed to make no progress. She stayed 12.5 pounds, couldn’t gain weight, couldn’t lift her head, and wasn’t developing. 

We decided, based on Seth’s instincts, to try the special formula we had used on Gronckle on Mouse in case by some bizarre coincidence her vomiting was food intolerance related rather than caused by her head injury. 

And lo and behold, it worked! She slowly started to gain weight, she started to lose some of the lethargy and pallor, and the projectile vomiting ceased. And it turned out that time was what was needed to heal her head injury, because eventually the fluid stopped accumulating at the injury site and started to break up. With a lot of physical therapy, she began to be able to hold up her big head. She started hitting developmental milestones one after another after another. 

By the time she left us to go home, Mouse was fully healed and was a giggly happy goofy little two-year-old, albeit still with a big head. She was on target for everything developmentally, and had hardly any specialist appointments anymore because everything was healing the way it was supposed to.

And this time, it was the other doctor at the clinic whose respect we had earned.

I can’t tell the story of Mouse without also telling the story of Seth and his nursing school journey. One of the many times that Mouse was in the hospital while she was in our care, he looked around at the exceptional nursing care we were receiving, and thought to himself “if I were going to be a nurse this is the kind of nurse I would want to be.”  Within a few days it had translated into “that’s what I want to do – I want to be that kind of nurse.“ And just like that Seth gave up his career in the printing industry, applied to nursing school, and began his journey to a career in nursing. He has one semester left and is determined to go either into pediatric ICU, or labor and delivery. I laugh at the latter because this is the guy who said, before we got Mouse, that he had no idea what to do with a baby. Mouse changed everything for Seth. 

After Mouse, we got the twins, who came to us with severe second-degree burns from a bath that was way too hot. And after the twins, we got Tiny, who is a severe case of failure to thrive, has significant heart issues, we suspect has dwarfism, and has congenital skeletal deformities. 

In short, we have developed a reputation of being the folks who will take the kids with major medical issues, and heal them. The woman at the county who works in placement knows that we will always take the medical cases and duly calls us when they come up. The doctors at the clinic take us seriously when we express concerns or make suggestions.  And we absolutely love what we do.

Fingers crossed our kids continue to thrive.