Boo Boo's Bear Suit

He stays warm on his walks with a German footmuff and the bearsuit. Sometimes he gets so relaxed he falls asleep and we let him finish out his nap in the sunroom. He loves his walkies.

UTI, Psych!

Bo and his abuelito (grandfather), pictured to the left. We are waiting for another visit, soon.

Turns out that the UTI thought doesn't explain the numbers. We were sprung from the hoosegow, Friday (sorry for the blog delay, but it always takes me a couple days to shake that creepy no-day/no-night hospital feeling; like Vegas, but a lot less fun and a lot less good food). The only numbers out of whack were the white blood cells (WBC), and without any fever, any indication of inflammation, and the WBC dropping all on its own, our doc DC'd (which means discontinued, for those not in the "know"), the antibiotics. The surmise is an asymptomatic virus was hanging around. Okay with me. Those drugs made Bo nauseated and groggy.

They upped his calorie count in his TPN (IV feeding) and he's already gained almost half a pound! His knees got chubby almost over night. He's been burning way more calories than before, as he's gotten so active: rolling from side to side, practicing sitting up, reaching for and lifting rattles, practicing standing (with help from mommy). As a result, he had lost weight the week before that (I was alarmed).

Mystery Solved: E. coli Urinary Tract Infection

Pictured to the far left, a photo of one of the 100,000+ culprits, and near-left, the action figure. I'm relieved that we aren't being sent home with an unsolved mystery, and even more relieved that it isn't a line infection. The funny thing is, even though he seems to have a lot of bacteria in the wrong place, he still has no fever, and has spent the bulk of the day screeching with laughter. One nurse even asked us if Bo was really sick. Tough kid.

Mystery Lab Results = Hosptial Admission

The good news: Bo's bilirubin continues to drop, evidence that his liver is healing and actually in the normal range. The bad news: his white blood cell count is very high, so we have to get him admitted tonight to start antibiotics and get a blood culture in case he has a line infection (we'll probably be in-patient at least 3 days). The weird news: his CRP level is normal; this number indicates inflammation, and if Bo had an infection, it should be elevated, but currently is not.

This is a picture of our local hospital, it is literally a mile and a half down a hill from our house. And 2 of the 3 pediatric surgeons on staff here trained at Boston Childrens, the rock star hospital that saved Bo's life. So we feel very safe going here. That doesn't change the fact that hospital food is still hospital food, and that we will have to wake Bo up from his night time sleep and invariably keep him up way past his bedtime, after an already long day that did not include a proper late afternoon nap.

Clothes, Supplies and TPN

These onesies (side snap bodysuits) can be had at Walmart for a song and a dance (3 for $8). While in a beach town in New Hampshire, the shopping was quite limited, and so we found ourselves at the big W. This is the only product in the entire superstore that I am in favor of, however it is amazing. Since Bo's line is on his right side, and the shirt does not cross over on the inside, we can draw the line out mid-torso, instead of having to have it come out of a leg hole (by the diaper line) of a regular onesie. With the regular onesies, if he has a blow out over night, the big pool of pee and poo can easily contaminate his line, as the transition points, while threaded, are not hermetically sealed from the environment. The only down side is that they only come in short sleeves, and winter in Michigan gets quite frigid, so now he's in layers.

The top pump is the Curlin 4000, which Critical Care Systems offers. Our friends in Maine, 2 of the 4 oldest living MID affected people in the US, helped to design this. We will get ours next week, and hope it is better than what we have. The next pump is the CADD Prizm. It was provided by our second home infusion company, Apria. This pump is very loud and has a virtually useless alarm system, not to mention an inane user interface. It was obviously designed to be "user friendly" but this just means that you can't control anything on it. The rechargeable battery is as big as the pump itself, hardly convenient, if you ask me. Also, it is attached via a cord, so suddenly you have three pieces of equipment to worry about instead of just two: bag, pump, battery. If you don't want the huge battery pack, then you use a new 9 volt battery every day. Since there is no battery alarm, you have to pitch the battery at the end of the day. What a waste. Also, the tube locking mechanism requires either a key or a penny. So after you've done all these procedures to get vitamins into the TPN bag and attache the tubing to the bag, you go grab a filthy piece of currency, or better, a key that is covered in sticky adhesive because it's taped to the pump (there's no clever attachment other than this).

The last pump pictured is the first we ever used. The Abbott Gemstar is super quiet, has a very sophisticated alarm system, and the tubing locking mechanism is much better designed, not requiring a key of any sort, just a firm click to assure it's locked in (and it won't work if it's not locked in). As far as we know, only HomeMed, the home infusion company of the University of Michigan offers this pump. The rechargeable battery is about a third the size of the pump and attached firmly to the bottom of the pump, essentially making the apparatus appear an inch and a half longer. If you want to minimize size and weight, 2 AA batteries will operate the pump and they last 2-3 days. There's an alarm that warns you when the batteries are almost drained.

We currently have a huge hospital pump (from Apria) to infuse the Omegaven, but Critical Care says a second Curlin is all we need. YAY! I hope that's true. We tried to switch back to HomeMed, but since the UM refused to pursue the Omegaven protocol for us, the home infusion company wouldn't support our use of Omegaven, either. While we were happy to switch our medical care to DeVos Children's Hospital in Grand Rapids, MI, we really liked the service from HomeMed. The pharmacists, service, pumps, and supplies were really excellent. Shame.

Happy Thanksgiving!

We are so happy to be home. And the best gift for which we are thankful, aside from a warm welcome and home-cooked family Thanksgiving with our Kalamazoo family, is Bo's liver functions came back normal as of last week! You may recall that his direct bilirubin was at a high of 8+ in August. It was 0.4 as of a week ago today; the high end of the normal spectrum.

He's added a quarter inch and almost half a pound since our return from New England.

Bo's First Five Months in a Nutshell

After Bo's birth, we spent his first 5 weeks of life in the hospital ICU, at the end of which we were told that Bo was born with a very rare and life-limiting condition known as Microvillous Inclusion Disease. There are maybe 60 known cases in US history. They told us we would be lucky if he made it to 3 years of age. And that the only therapy to keep him alive would also be the mostly likely cause of his early demise, from liver damage due to nutrition via I.V. Those were very dark days for us, filled with grief and terror. Last week, we returned home from 6 weeks in New England, where we were seeking medical therapy in hopes of prolonging Bo's life -which our doctors in Michigan said was impossible. The change in therapy was simply substituting fish lipids for the lipids he was receiving, which were plant-based. We didn't know what to expect. We only knew that Bo's liver was already insulted and injured beyond anything we could manage ourselves (his bilirubin went up to 8, where the upper limit of a normal liver is 0.4). As of this past Thursday, his bili was 0.9 and dropping. We remain mystified and grateful for the love, attention and prayers everyone in the family has been sending us. Whereas we were not sure he would make it to his 100 days birthday, now we can even begin to hope for the future and plan for his life with us for years to come. And even though he will most likely remain dependent on an IV for his nutrition for the rest of his life, we continue to feel blessed and amazed that we can now even contemplate a 'rest of his life' to come. Truly a Thanksgiving for us. This is nothing short of a miracle.