Last Thursday, Debby noticed that our happy, spunky little eight week old vomited breast milk and had some gunk in his eyes. Like any good mom, she made an appointment with her pediatrician for the afternoon. I didn't think much of it and elected not to join her as he seemed like a typical baby and a typical first time mom. Debby called me from the pediatrician's office to tell me that 1) Zachary had projectile vomited in the doctor's office and 2) that when they checked his diaper they found blood in his stool (solid, not diahreha btw). The covering pediatrician was calling an ambulance to transport him to Stanford's Lucille Packard Children's Hospital because they suspected either pyloric stenosis or interseception. I ended up driving our otherwise seemingly normal baby because the ambulance driver couldn't get our infant car seat set up in his ambulance. When we arrived at Stanford's ER room, they did three ultrasounds to confirm the suspect diagnosis so they could proceed with surgery to fix a rather common and fixable condition. None of the three ultrasounds showed either pyloric stenosis or interseception. Because he was still sick, they admitted him into the hospital to get an IV drip and to figure out what he had.
At first they thought it was some kind of gastroenteritis, but they wanted to rule out bacteria based illnesses and recommended doing a spinal tap. As soon as the spinal tap was completed, the administered anti-biotics in case the spinal tap cultures came back positive. We were real scared to get the results of these tests because Debby's sister had meningitis and Encephalitis , leading to life changing results for everyone in Debby's family. As soon as we gave Zachary anti-biotics, he started having terrible diarrhea, just like his dad and my mom get when we get anti-biotics. (We're both allergic to penicillin, but he wasn't given penicillin exactly.)
Since it was New Year's Eve, the hospital's staff was quickly changing so that those who had to work Xmas would have the New Year's Holiday off. The people we were working with were suddenly gone and new teams came on. Here's where things start getting confusing. This is a teaching hospital where Pediatric Physicians work with Pediatric Residents to help patients but also to teach them about all kinds of strange diseases. The team was convinced that our boy had a Congenital Adrenal Hyperplasia which is a rare Jewish genetic disease that correlates to High IQ, large penis size, difficulty dealing with stress, hairy men. lol Frankly, everyone who knew us thought this sort of made sense. However, my brother-in-law the internist and our nephrologist friend both expressed extreme doubt and attributed the diagnosis to young doctors looking for exotic stuff (aka zebras).
In order to "figure out which hormone Zachary was deficient" of, we would need to get a good line to connect into his heart in order to pull out a ton of blood with which to run many tests against. This is a surgery requiring anesthesia (on an 8 week old). The endocrinologists also expressed doubt, but everyone wanted to make sure. In addition, dealing with the dehydration was deferred pending the determination of the hormone deficiency. The endocrinologist did a test that definitively showed that he didn't have CAH.
In the meantime, he had so much diarrhea that he was unable to retain any of the breast milk or fluids that we were giving him the whole time. He was dehyadated. Debby started saying that we should just focus on getting his dehydration under control as prolonged (3-5 days) without water or food will cause neurological damage.
By the time CAH was ruled out, Zachary had lost 25% of his body weight, was listless and clearly was essentially dying. You can see the email below for the general flavor.
As a result of all this, essentially his kidney stopped working and kidney doctors needed to get involved in order to get him back. In order to stop the diarrhea, they stopped providing him any food or nutrition through his IV. That was two days ago. His diarrhea still hasn't stopped which means we can't get his electrolytes in order.
Yesterday, Debby discovered that the line going into his heart to be used to provide a blood transfusion and nutrients post-starvation, was leaking. The nurses ignored her all day until we brought it up with the doctors. The IV lines were leaking and again our babies treatment would need to be postponed. The doctors actually filed incident reports this morning about the failure of the nurses to keep the IV line clean and as a result the nurses filed an incident report that we have too many people staying in the room at night. Debby never leaves, her mother pretty much stays with Debby and we have hired a night nanny to hold him and keep him calm all night while he cries for milk.
Today, they are moving him to Intermediate ICU in order to have better nurses keep his IV line open. He will also have another surgery today to put another line into his heart. As a result of the nurses complaint, we can probably only have one person in the room and Zachary will probably need to sleep in a crib crying all night with tubes coming out of him. The good news is that the nurses in IICU are experienced at keeping the line open. He's not going to IICU because he is in critical condition. He's actually looking a lot A LOT better since he's been receiving nutrition through his veins and the transfusion. He's going so that they can make sure to keep his IV line open and we can get his electrolytes back in order.
We're probably here for at least another week. His kidney condition is acute which means that once this is fixed, he won't have any kidney problems. In this process, they've stress tested all of his organs and evidently he's incredibly healthy. In addition, neurology does not believe he has suffered any neurological damage. His general demeanor supports this as well.
Unfortunately, we still don't know what started all this but it's probably something viral plus a diareah from the anti-biotics. That's my our opionoin as well as my brother-in-law the internist. We may actually never know.
I'll post an update every day so we don't have to tell everyone individually what's the latest.
Couple of other points:
We love visitors. He's not contiguous. The parking is free for 45 minutes . (725 Welch Road, Stanford). When you visit, let's not talk about Zachary's medical stuff the whole time as that's our life when you are not here. Since everyone wants to know what to bring, bring us baked goods and food that we can enjoy and more importantly, we can share with the nursing staff which results in Zachary getting much better care. The hospital food sucks so if you want to bring us dinner, we appreciate this greatly. In addition, since mornings are busy with doctors, the later the better. Laura Cooper will coordinate dinners. email her at coops4@sbcglobal.net.
When you do visit, plan on 15 minutes and if there's not doctors and stress, we'll probably ask yo you to hang out with us. We love all the support and have actually started taking people up on their offers. My mom slept on Eli and Margarita's futon last night. (I think a first for my mom). The Kleins are grocery shopping for Nory today.
In addition, since we took from the blood bank, we'd appreciate it if you went and made a donation if possible. There's a lot of sick kids here.
Thanks Thanks and More Thanks,
Love,
The Zwellings
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