Well, that sucks...

Doc guest post, and kind of a long one...

We will have pictures and description of our trip to the aquarium as a family last Saturday when we get a chance, but we are a bit tied up now.

We drove up to St. Louis Sunday. Honestly, it was not a bad drive, just a little bit of rain. Diaper changes were uneventful and our wolf-cub just sat back and enjoyed the vibrations of the car. He was SUPER unhappy when we got to Haven House, but this is not unusual for any kid after being in the car 8 hours. Evelyn does the same thing. But when your kid is as sick as ours, you contact the Cardiology fellow after 3 hours of unhappiness. Of course, as soon as I paged the fellow, Rowan decided that he was going to be calm, cool, and collected. And that the pacifier was something he really liked. He finally figured out the pacifier! Which is great, because he was a little fussy overnight Sunday night, but easily consoled. So not a bad night, really.

Monday morning, he was still a bit fussy and we went ahead to the hospital because we didn't know the time for his pre-cath ECHO/EKG appointment. The front desk told us it was at 11 AM and it was like Rowan said "Mom, Dad, I don't think I can make it that long" and started acting funny. So we took him in to the ER just to make sure. Literally, as the ER doc walked up to see him in the triage area, he decided it was time to look really terrible. He was sweating (not unusual for him, but keep reading) and was not easy to wake up. His hands and feet got really cold and looked blue. He started breathing really fast, even for him. Then when they took his temperature it was 40 C (104 Fahrenheit). All of this = he is super sick. The Cardiology fellow on just happened to be one that followed him the majority of his last visit and that we had a couple of longer conversations with. Needless to say, it was a huge weight off our shoulders to not have to go through everything and skip to "So how were things at home?". It also meant that he got up to the CICU really fast.

You never think you will be happy to be in the CICU again. But knowing the doctors really know him (literally) inside and out is a major comfort. The docs thought at first that Rowan could do without getting intubated (tube put in for the ventilator), but that did not last long. He just continued to look crummy with his respirations and the VBG (shows levels of different gases in the blood, assesses how well you breathe) showed that he was not doing well. So he got intubated and got a central line (IV that goes in almost to the heart) and an arterial line (this gives a constant reading of blood pressure for monitoring). In typical Rowan fashion, his arterial line caused problems and had to be taken out. When we left last night (Monday night), they were waiting on an instrument to help with putting an arterial line in a different place. His vital signs and labs improved slowly throughout the day and we went back to Haven House for the night.

Last night, we got a voicemail in the middle of the night (freaky, but it was okay). His Foley catheter (to drain his bladder, placed because they need to know exactly how much he is peeing) had been showing any urine output (which is concerning), but was repositioned and he started urinating very well. The thought is that the catheter was not in quite the right place. Urology is going to come look at him because there may have been some damage to his urethra (this happens sometimes and generally causes no long-term issues). He is now peeing like he should even without having had his diuretics (water pill) for a while, which is great.

This morning, his vitals and labs all look better, if not drastically better. His heart rate is down to "I am calm and okay" levels, his hands and feet are cool, but not ice cold like they were yesterday. His blood pressure is great without any pressors (he was on these to keep his blood pressure from dropping). His temperature has slowly recovered to high normal. They were able to get an arterial line in his left arm. He is starting to need less ventilator support. All good things.

The plan moving forward is primarily to get him stable and back to his baseline. Then we will do his cardiac catheterization. If he is ready for his surgery, then he will be put on the schedule and get the next stage of his repair. If he's not, then we figure out where to go from there. They would want to keep an eye on his pressures to see if he could maybe outgrow them being too high. How likely that is will be a discussion we will have with the team and with the surgeon.

Even if everything goes horribly wrong, we are so happy for getting our month at home with our little wolf-cub. We realized that yesterday when he declined so rapidly that we have been completely right to be on edge for the last month. When he gets sick, he drops hard and fast. And if it happens that he doesn't recover, this time, or the next, or the one after, we were able to have him home, see our puppy, lie on the living room floor and hang out with us, see Evelyn dance and twirl around him, meet all our Tulsa friends, hang out on the back porch with Dad, take a walk around the neighborhood, and see all the fishes with little sister (even though he slept pretty much the whole time). We treated him like a normal kid. Just a normal kid who gets his food through a tube, medicines every four hours, CPT twice a day, labs twice a week, physical therapy, occupational therapy, speech therapy, and a shot twice a day.

Just a normal kid with an abnormal way of doing things.

4 Months

Today Rowan had his 4 month well child check.  As far as growth goes, he’s doing great.  His SAT levels are still doing well and he seems to have returned to his usual self.  We are trying to keep it together for just a few more days, but knowing that drive to St. Louis is only 3 days away SUCKS.

We’re doing all we can to stay sane and enjoy the next few days without being emotional basket cases and spoiling the time we have.

Rowan is Growing.

Rowan is Getting Stronger.

Rowan is more AWAKE!

Hard to know what next week will say…but we’re hopeful.  We like this guy. We want to keep him around.

Also – Camille makes awesome turkey taco stuff.

Hanging Out At Home

Our plans to go out and about haven’t worked out so far.  We’ve had some really poor luck the last few days. Yesterday, Doc and I both were exhausted.  Doc had been on call, and I had been dealing with Mr. “But I Slept All Day At The Hospital Why Should I Sleep At Night?” who…didn’t want to sleep.  So we stayed in because I couldn’t walk a straight line without my caffeine drip.

Today we were going to go to the aquarium this afternoon. We had an appointment scheduled with the CF doc this morning and were going to go this afternoon.  Then our appointment got rescheduled for mid-afternoon and we had family pictures this afternoon at 4…so it didn’t work out.  We are going to go out – so help me…BUT

We spent some quality time at home, and Rowan didn’t seem to mind! Enjoy!

 

 

 

 

 

Outta the Hospital–Part Deux

Well, we didn’t make it out in time for the Millington Family Egg Hunt at my parent’s house – or for the trifecta of birthdays on Saturday for my sister, brother, and mother.  BUT…we did make it home early enough for me to take some “really mom!?” pictures to lord over Rowan should he ever bring a girl home.

In a Word… UGGGHGEHRRHRHRHRH!!!!?!?!?!?

So.

Rowan is now at St. Francis in Tulsa.

He’d been sweating a ton and having diarrhea with the morphine/Ativan withdrawal.  On top of that, he was still getting Lasix (a medicine that makes you pee out extra fluid and most heart patients need some amount of it).

So we were worried that with all the sweating his electrolytes might be off and they did a few blood tests.  Turns out his sodium was “critically low” which means he had to go to the hospital last night at 10pm.

I need to just carry a piece of paper that has Rowan’s entire medical history, allergies, current medication doses and concentrations, surgical dates, etc. on them to hand to any health care personnel he sees because it takes WAY to long to go over his history with every doctor and nurse he sees.

Rowan was admitted for low sodium but his potassium and chloride were also low.  Solution – IV fluids.  He started them this morning and his numbers are improving at a good steady rate.

Meanwhile, Rowan looks fine.  Rowan is acting fine. Rowan’s vitals are great. I think he’s pretty confused as to why he’s there.

I’m pretty much trying not to cry ‘round the clock because I was SOOO excited to get to introduce Rowan to my brother and sister-in-law and nephew.  I was counting the days until Rowan got to be a part of a family holiday this Sunday.  Now it looks like that might not happen because he’s in the hospital.

I KNOW that anyone with numbers like his would be admitted to the hospital and this is something he needs…but there is a giant part of me that looks at him and goes “oh come on! I can draw blood and give IV fluids at home…it’s just one more thing….” but I’m just whining.  Also I think you may need some sort of official medical training for that…

Maybe I can hide eggs in Rowan’s hospital room….

Sigh.

Hope is Hard

Despite the fact that Rowan’s medicine for his lung pressures is a long shot, he keeps giving us reasons to be hopeful.

His oxygen saturation levels were in the 70s almost all the time at the hospital.  In the last few weeks, they’ve been trending up to where he is almost always in the 79-85 range.  We haven’t had to turn his oxygen up in four days.  We’ve even been able to turn it down for about an hour every now and then before he starts to have problems.

He also keeps getting stronger.  He did a push up yesterday. He can hold his head up for a minute at a time on his own.  He likes his pacifier and is trying really hard with it.  He now gets fed in chunks and has over half the day off of the feeding tube.

He’s getting so much better from what we can see and assess from the outside.  We are finding more and more signs that we can be cautiously optimistic that the inside will reflect that.  We’re only 11 days away from his next cath.

If We Cannot Come Out–Bring ‘Em In

 

Last week I had a bit of a “cabin fever” break down.  I was so tired of not leaving the house.  I really wanted to see friends and feel normal.

 

 

 

We can leave and go out now, which is wonderful, but it’s hard to feel normal.  People stare all the time when they see Rowan with oxygen.  I’d rather them ask questions than just stare. 

 

 

So – in a desperate attempt to feel “normal”, we decided to invite people over Sunday night for a casual BBQ.  If it’s hard to go out, then we’d invite people in.

 

 

 

It was incredible to just hang out and relax with friends and family.  We had an amazing evening.  Late, when both our kids were asleep and Doc and I were settling in, we couldn’t help but feel like life got brighter. 

Rowan acted like a baby.

Our house was full of happy sounds and laughter.

Evelyn hit a sugar HIGH from Root Beer. 

It was perfect.

Perfect.