Sammy

I apologize for not updating sooner - as most of you know, no news is usually good news.

The good news is, we've been home for almost a week now. Sam appears to be doing well, but there are downsides.

We came home with a feeding tube installed, and it's been a real battle to keep it down and taped, especially with an increasingly active boy. Needless to say we are becoming intimately familiar with the best and worst ways to tape, glue and wrap feeding tubes. He is eating about 2/3 of the calories he needs during the day on his own, and we use the feeding tube at night to supplement, and for easy (relative) administration of medication.

Seems as though each trip to the hospital introduces new precautions, medications and processes that need to be administered. It's getting increasingly more complicated to keep sammy healthy.

Having said that, there is no price too great to have the family together. We are just hoping we can get into a rhythm and routine, perhaps generating some free time for luxuries like lunch, personal hygiene, date night, laundry and...sleep?



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Some more ups and downs today. Everything we are doing is focused on getting Sam to eat. He has a tray full of dozens of different types of bottles, nipples, straws, and sippy cups - all potential delivery vehicles for the food he won't eat.

They even tested his CRP and renal function today, changed his antibiotic to try and get his appetite started up.

He had another feeding tube put in this evening, we just couldn't wait any longer. He's been eating a little better, but when you're measuring what he eats in milliliters rather than ounces, just to make it sound like a lot of food, you have a problem. On the bright side, he did actually take about three ounces tonight, over the course of a couple hours. The best news is, he took it from his bottle. The tried and true bottle he's been using for months! So, there is hope he'll re-acquaint with the bottle and eat. We are fine with it either way, we just want to get our baby back home.

It's a beautiful day here in Minneapolis. We spent the morning enjoying the view of blue skies out the 7th floor window, trying a thousand different ways to get Sam to eat.

Dr. Shapiro ordered his feeding tube shut off so he would be hungry, and his IV was turned down to TKO (just enough flow to keep the vein open) to make him thirsty. No sooner was I on the phone to Esther explaining the turning down of feedings than Sam snagged the 1/16th of an inch of tube that was not taped down and ripped it out of his stomach. I didn't know how long it was, but knew I had more line in my hand than was in his nose. By the time the nurses arrived, the tube was completely out. Sam and I were both sprayed in some unpleasant combination of bile, prevacid and elecare. Guess we won't be needing that anymore...

Our neighbor Danielle (who happens to be a speech therapist) had offered to sit with Sam for a while so the other kids could enjoy some mom & dad time. We took her up on the offer, so while we went for a walk around lake Calhoun and ate sloppy ice cream cones, Danielle got Sam to take 1.5 ounces of Elecare! May not sound like a lot, but it really helped us help him get back on the horse, so to speak.

He ate another 2.5 ounces before bed (via a straw), so we're making some progress.

The Pulmonologist on call today informed us that because of the Pneumatoceles (holes) in Sam's lungs and the risk of associated infection, he needs 14 days on the IV antibiotics, rather than 10. It's a bit of a setback, but we'll just do the best we can.

Obviously we'd rather be home together, but we also don't want to bring him home prematurely if he's not on track for a full recovery.

We were also told that his NJ tube is not in his upper intestine, it's just coiled up in his stomach. The reason we were okay with the NJ tube is because it bypasses the stomach, ensuring he does still get hungry so we can continue to work on his recent feeding aversion. We'll be talking with the doctor about that tomorrow.

Our original thought was that it would take weeks to get on the schedule to have Sam's blood tested in Maryland, but when they found out that Sam's in the hospital, they found an opening for tomorrow! The lab techs drew 8mL this afternoon and it is now en route to the NIAID lab in Bethesda.

It will still take 2-6 weeks to get results, but at least we don't have to wait to get things started.

Since Hyper-IgE is where most of the medical team is leaning, it's important to get this result so we can confirm or keep looking.

We are still a little anxious about his Pneumatoceles. We are hopeful that tomorrow's x-ray will at least not show the holes getting larger or abscessed.

More tomorrow...

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We just found out that Dr. Steven Holland in Bethesda, MD will take a sample of Sam's blood and test it for the STAT3 mutation that causes Hyper-IgE Syndrome. This is great news as it will possibly give us a definitive answer on whether it's the underlying source of these infections. We still need to work out the details, but it's very positive news.

Sam's pulmonologist today also warned us that the Pneumatoceles (small holes or cysts) in Sam's lungs appear to be maturing on the latest x-ray. They'll be watching it carefully over the next 24 hours to see if they respond to treatment and Sam's natural (albeit weak) ability to fight off infection. If they start to abscess, further action will be needed.

We are hopeful, but certainly not out of the woods yet...

Today was a very eventful day. Sam has really struggled with eating, particularly from a bottle. So, even though he has been eating some rice cereal from a spoon for the past 24 hours, it's too little too late. It's been 5 days since he's eaten anything substantial and a feeding tube (nasojejunal or NJ) was ordered today. Not a fun procedure, but we all agreed he needs the nutrition. This tube bypasses the stomach, so at least we'll still be able to feed him as he regains his appetite. Hopefully this setback will not adversely impact the duration of our stay. He has 7 more days of the IV antibiotic, and a lot can change in 7 days.

We were moved from the 6th floor up to the 7th floor today. We feel good about this move, as so many of the nurses on 7 are familiar with Sam and we are familiar with them. It's been a hard day filled with hard realities. We miss the kids, we miss each other and would love to see Sam make consistent forward progress. We can't hang our hat on any particular diagnosis or theory yet. We are hopeful and prayerful that Dr. Holland in Bethesda, MD will accept Sam in the STAT3 study. This study would confirm or rule out Hyper-IgE syndrome. There are many other theories swimming around for which he's being tested, this one happens to be the most difficult to do and perhaps one of the more likely culprits.

In a lot of ways this has already seemed like our longest hospital stay yet. A lot of the choices we've had to make as a result of the timing of this round have made it particularly painful. We are grateful for the support of our friends and family. It's easy to feel isolated in situations like this, and the calls and visits are greatly appreciated.

Well, Sam has not eaten any food since Wednesday. He's getting the fluid he needs, but he's losing weight. The doctors are saying he'll eat when he's ready. You can tell from his cry that his throat is still sore and he's not feeling very well yet.

He is still on oxygen through a nasal cannula. His oxygen saturation stays high when O2 is removed, but his respirations/min go up as well. His body has learned to adjust oxygen levels by increasing his breathing rate.

He was moved from Vancomycin to Oxacillin today. The Oxacillin is more targeted to Staphylococcus Aureus, whereas the Vancomycin is more broad spectrum, often used as a "drug of last resort" for methicillin-resistant strains of staph.

He seems to be in pretty good spirits today, with plenty of smiling and talking. If we could only get him to eat something...

Sam has still been fairly lethargic today. He doesn't always appear stressed when he's sick, but he does now. Just this evening he started cheering up a bit. This boy is definitely enamored of his mom - I think in some small way he knows of her importance in his life and treatment. He's a very lucky little boy.

The doctors have some new theories, some old theories, plenty of strange and exotic tests to run, but no diagnosis yet. We won't prognosticate any further until we have something solid. We have resigned ourselves to the fact that this is our new life, so any diagnosis will be good news in the sense that it gives us a direction; a course for treatment, even if not a course for cure.

The other kids are having a blast in Hartford with the Roemers, only occasionally waxing homesick. the family distance is hard on all of us.

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The cultures taken from yesterday's bronch grew staph bacteria. Once again, a common bacteria is causing a very uncommon and severe reaction in Sam.

The good news is we're getting a lot of attention from our team of doctors. Being in the hospital really gives Sam's condition due weight. They are drawing blood multiple times daily to run a bevy of tests and studies.

The bad news is that this pneumonia requires a 10-day antibiotic course that can only be administered intravenously. We are earnestly praying that his bacteria will respond to the antibiotic. The earliest we'd be discharged is next Sunday the 15th. It's a tough sentence, but we feel up to the task.

The kids are staying with Esther's sister's family for the next week or so to allow us to focus on caring for Sam, re-sterilizing his living quarters, and work.

The next few days will be particularly difficult while Sam recovers from the bronch, fights off an infection, and gets back to eating food. We appreciate more than we can express your prayers and support...

Another bronch was ordered for this afternoon. Sam was anesthetized for it again. Due to his history of rare and serious pneumonias, it's no longer safe to assume that a simple 5-day penicillin variant will knock it out.

True to form for our medically complex conundrum, this one is serious. It's not pneumocystis, but the biopsy revealed a large ball of pus in his lower right lobe. It was successfully extracted, and Sam is recovering nicely. He is currently on 3 antibiotics to treat all of the possible infections. Once the culture grows, we'll be able to narrow it down.

Once again our frustration is getting caught up in the short game. The real issue is not the pneumonia, it's what's causing it over and over and over.

The silver lining to being in the hospital again is that this brings the issue to the forefront of the doctors' minds. We need the brain trust to invest some time into getting us a diagnosis and long-term treatment plan. We need the fence on the cliff, not the ambulance in the valley.

Dr. Paulson wanted to see Sam first thing this morning. Not a moment too soon really. Last night was rough, complete with some very labored breathing, vomiting and refusal to eat. Even with our toy stethoscope we were able to hear the rustling in his right lung. We knew what was coming.

The morning x-ray revealed a large occluded patch in his right lower lobe. Paulson conferred with Wheeler and they want us in the ER this morning.

Accepting that this is our new reality goes a long way in dealing with these setbacks. We are emotionally doing quite well. Exhausted but stable...

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Just 10 days after completing treatment for a less serious pneumonia, things really started spiraling downward over the last 72 hours.

We saw Sam's pediatrician Dr. Paulson late last week and his lungs sounded good. The bloodwork, however, told a different story. While his eosiniphils were down (that's good) but his overall WBC was way up, indicating a problem. His breathing really became labored and we went back to our 24-hour pulse-ox/hydration watch.
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