Wednesday, November 25, 2015

Always the "interesting kid"


Today's post isn't really about A2, other than to say he's making huge strides at PT recently and has started crawling!! 

So today, we took my oldest stepdaughter to Group Health for her 3rd knee surgery (she's 12). The plan was to just remove the whole meniscus because it looked on the MRI like it was basically disintegrating. But our Dr knew the images weren't very clear & there was lots of signal from scar tissue left by her last 2 surgeries. So anyway, that's not what was going on with her knee. Her plica band was out of place so he removed that & part of her previously removed meniscus was attempting to regrow itself, so he cauterized that to remove the frayed tissue. 

But I knew something else was up because he took us to the consult room to discuss things. He said something about it being for patient privacy, yada yada. But the last 2 surgeries, he didn't take us there & I even commented that when I worked at Harborview you only went to that room when things didn't go according to plan. He chuckled it off, but then after he told us about her knee he said that she was fine, but she's always the "interesting kid" and nobody wants to be "interesting" in the OR. This time, the anesthesiologist noticed a slight change in her heart monitor. All her vitals were fine & whatnot, but the rhythm was indicative of Wolff-Parkinson-White Syndrome & they were going to get a full 12-lead EKG to confirm & consult with a cardiologist to make sure she was ok to discharge home & follow up with our pediatrician & then a pediatric cardiologist later. (Which they gave the thumbs up for.) From the little bit I've read about WPW, it sounds like it can be a complete non-issue or it can be full on life-threatening. 😕 There's only one symptom Bri's ever complained of that could be related, so I'm assuming she's on the non-issue end of the spectrum if she does have WPW. But, better safe than sorry!

So they are sending a report to her Dr. to be able to make the referral. It looks like Group Health's only ped cardiologists are in Bellevue. If that's the case I will probably just ask them to send us to Children's since we already know their routine & I'd rather drive there than Bellevue. Besides, maybe I can combine her appointment days with A2's! 

Obviously the clinic is closed tomorrow, but I will call Friday morning to see if Dr. Asomaning will just give us the referral without being seen in the clinic. Keep you all posted. 

Tuesday, November 10, 2015

Kidneys, aka trouble makers...and other things

Today we went up to Children's for yet another kidney ultrasound & consult with our nephrologist. Things got off to a bumpy start in radiology when I realized that he had a minor blowout somewhere between the car & the ultrasound room. So, after we got him cleaned up, we were ready to go! The tech was able to get all the images she needed but it was a lot more work to keep him still than last time! The kid got ultrasound jelly up to his armpits, on his nipples, all over my arms, and even on my necklace! It's a good thing he's cute!
Waiting for the tech to confirm that she had everything she needed. 

Then we headed up to Nephrology to meet with Dr. Hanevold. Everything was very encouraging. His right kidney is greatly improved & downgraded from grade 2 to technically still grade 1, but the radiologist even commented in the report that it was a "minescule trace" amount of hydronephrosis. The left kidney was also downgraded from a 2 to a 1, but was still much more obvious. She still wants to be sure that it resolves so we will see her again but not until sometime just before his 2nd birthday. She said no need for a special trip up, just combine it with another visit day. Plus by then we will have results from his genetic testing so just in case it turns something up, we can talk about that too. 

Which reminds me, I owe you guys several other updates! 

Yes, he got a third helmet. We went all out decorating this one since he was going to be in it for Halloween. 
Boooooooo, lame white helmet we ordered. Until dad fixed it up:

Aaaaand complete with the costume on Halloween: 

No results from Children's in Philly yet. It's been a full 6 months now, so hopefully soon, but they did say it can take up to a year. One thing I realized today is I never got super clear about what all this testing is looking for. I'm pretty sure when we started all this I posted about the whole amount of DNA vs the spelling of DNA issue. We know he has the right amount. We just don't know if he's got "spelling errors" or not. The study in Philadelphia won't analyze the spelling of all his genes, just some. But I don't know if they select those genes based on his personal health history, or if it's a predefined set. Guess I ought to call & find out. 

Last but not least, his clogged tear ducts. He had an appointment to clear the duct on September 16th. Dr Weiss had said that since he was doing it in the OR with full sedation, he would put in tiny little stents to hold things open & improve the long term outcome. Unfortunately, he couldn't get the stents in. He was afraid he was going to tear Arron's tear duct. So he cleared the blockage & put him on some antibacterial eye drops because they had been blocked for a while & there was lingering infection. This was the first time in his career that he couldn't get the stents in. And of course the CT scans Arron had done before & after surgery didn't have the fine facial details he needed to take accurate measurements & find small enough stents. So fingers crossed they don't clog again & if they do, he will probably order a new CT to have a better look at what's happening internally. 

But I'm falling asleep typinv, so I guess it's time to go. 


Monday, August 10, 2015

To helmet, or not to helmet, that is the question.

We are up at Children's to see Arron's surgeons in part for regular follow up and in part for them to decide if he needs a third helmet. 

On the one hand, I do think the helmet is limiting his gross motor development. On the other hand, his head is still pretty obviously lopsided. But, how often have you walked up to somebody & really evaluated the symmetry of their head? Ugh. So torn. Oh so ready to be done with helmet therapy, but also want to get the best possible outcome for my tiny sir. 


Monday, July 20, 2015

And for his next act...

About 2 weeks ago I got a call from the daycare that I needed to come pick Arron up. His eye had crusted shut while he was sleeping & they wanted him evaluated for pink eye. By the time I picked him up, ran home to change (it was that crazy hot week), and got to Group Health the poor lil guy had spiked a temp of almost 103. Turned out he had double pink eye & double ear infections.  😥 poor dude was miserable. 

Btw, huge shout out to our pediatrician Dr. Forester Johnson at Group Health. He was booked solid and the scheduling & nursing staff told us we could wait 2 days or hit up Urgent Care. So to Urgent Carr we went. The triage nurse was hoping to take us to the Seasonal Illness clinic but his fever disqualified him. So she touched base with Dr. Johnson directly. As soon as he heard we were in Urgent Care he said he would absolutely see us himself instead of leaving us to wait the estimated 4 hours downstairs. Yay!!

Anywho, everything seemed to resolve with the antibiotics but then his crusty eyes fame back, but no irritation in the whites. So I took him in on Thursday & Dr. J thinks he's got clogged tear ducts & wants us to see our pediatric ophthalmologist. So I called Children's and they had a cancellation tomorrow morning at 7:40. I wasn't excited about the time, but wasn't about to wait until November, which was the next appt available. 

Thankfully the wonderful people in Guest Services at Children's were able to get us a free hotel room in Northgate so I don't have to wake him up at 4:30 & leave at 5:30. 

We are expecting that he will need a very minor procedure in September to clear them. They just run a probe through the duct into his nasal passages but he has to be put under general anesthesia for it. Hopefully our ophthalmologist doesn't think it will take any more than that. 

I'll let yinz know tomorrow!
Chillin on the hotel bed. 

Saturday, May 30, 2015

One more time...

So we met with the nephrologist who was very positive overall. The dilation in his right kidney is still grade 2, but vastly improved from what it was back in January.  She's not concerned with that one at all. His left kidney was downgraded from a 3 to a 2, but is much more obvious on the ultrasound that the right. I could even plainly see the difference. 

So she wants us to do another scan in 6 months and make sure it's continuing to improve. She seemed confident that it would be, but also cautioned that persistent dilation could start to impact how his kidneys grown & develop. It doesn't seem to be doing that now as they grew appropriately for the 3 months between scans. 

We also met with our Craniofacial Pediatrician who is also a geneticist. The last time we were up there, he had blood drawn and we began genetic testing to look for any indication of what may have caused his craniosynostosis, kidney problems, respiratory infections, ptosis, or blepharophymosis. She had our results back & everything was normal! PTL! Granted, this was a fairly limited test, but it was good news regardless. 

The Children's Hospital in Philadelphia is doing a research study that allows us to get additional testing without trying to fight our insurance company for approval, which they almost never give for this type of testing. So we figured we might as well go for it since they can use his previously banked DNA & we feel that in this instance, knowledge is power. It generally takes about 6 months to get those results back so we will see her the same time as Dr. Hanevold. 

She did say that she is very pleased with Arron's development. While he is slightly behind in motor skills, it generally doesn't mean anything in the long run. His cognitive development is right on track & is a much better indicator of his future development. So that was also encouraging. As a first time mom, you worry about everything your baby does (or doesn't do) and if it's on time or not. So her bringing that up unprompted really did a lot for me. :-) 

We appreciate your continued prayers for improvement in his kidneys & happy follow up appointments. Craniofacial still has a few things they're following related to his skull shape to make sure it doesn't interfere with his hearing or swallowing. 

Wednesday, May 27, 2015

In Seattle

We are getting his ultrasound now & then we will meet with his nephrologist after to discuss the results. 

Friday, May 15, 2015

Now to decorate!

Well this helmet fitting went way better than the first one! The first one he SCREAMED the whole time she was messing with it. This time he was a little fussy but nothing crazy & it needed a lot of trimming. It was nearly down over his eyes and his ears were pretty smushed. He was also very ready for a nap by the time we left. But here's the new look: 

So after paying for this helmet we've officially paid our maximum out of pocket expenses for the year and all future appointments/surgeries/medications/hospitalizations for the year are covered at 100%. Woo hoo! Although that means we've already racked up $4,000 in medical bills this year. Some of that was covered by Children's charity care program but the vast majority of the care has been outside Children's having now spent $1,200 on helmets alone. Crazy to me how insurance works that we were responsible for $600 of his $100,000 in bills for the surgery but at the same time pay $600 for each $4,000 helmet. Weird. But we are on the upswing now & hopefully it's good news on the 27th and we are almost out of this chapter of our lives where it feels like we live in Dr offices. 

One more picture for the road. And don't worry, we'll get some Sounders stuff on it soon!

Thursday, May 14, 2015

Not impressed.

This pretty much sums up Arron's opinion on sweet potatoes. 

This was from back in March, not sure why it didn't publish...so here it is now. 

Saturday, May 2, 2015

On to the second helmet!

Well Arron has outgrown his first helmet. We saw his surgeons 2 weeks ago to confirm that they want him to have another helmet. Then on Tuesday we went for the measurements & scanning at the Hangar Clinic. They submitted everything to Group Health & I got the authorization in the mail yesterday. 

So here we sit, waiting for helmet number two. 

Saturday, March 7, 2015

Time is flying!

I can't believe this little guy is six months old!! We are going to try solids for the first time this weekend. He's doing well & his head seems to be rounding out nicely! 


I like his physical therapist a lot, she's great. He's decided she's sneaky & not to be trusted. It's funny to watch him suddenly realize that she's doing a stretch or massaging his neck while he's playing. He's making progress but we still have a long way to go. He's not sitting up yet & because of his head turn & tilt, he's also now setting his hips lopsided so he keeps his eyes level with the horizon. Lots of work to do.

We have his next round of appointments in Seattle on Monday, March 30th. So keep the prayers coming, and wish us luck with the sweet potatoes tonight! 

Saturday, February 14, 2015

Ultrasound results

We had Arron's follow up kidney ultrasound on Monday the 9th. 

The nephrologist called me on Wednesday to let me know that while it showed very minimal improvement, his kidneys were still not back to normal. She is hoping that we just didn't wait long enough between scans. So we are getting another scan on Wednesday, May  27 and then seeing the nephrologist immediately after to discuss the results. Hopefully everything will be normal & that will be our only visit with their clinic. 

Otherwise, he's doing well and has started enjoying time in his exersaucer. Even to the point of jumping himself to sleep! 

We started physical therapy and our therapist said he's doing a lot of things well but we still have a lot of work ahead of us in other areas. So keep the prayers coming as we continue on his recovery journey. Thanks!

Monday, February 2, 2015

Helmet day!

I was super nervous about this appointment and how he would react to the helmet. And then he woke up at 6:30, and didn't go back to sleep until about 10:25. He's usually toast after being up for about 2 hours. He got to sleep for about 45 minutes instead of his normal 2 hours and was rudely awoken by having his helmet put on. He screamed. Like, SCREAMED. 
This was the third trimming & he was less pissed, but still mad. 

For anybody that's talked to me about my son, the first thing I say is that he's a very chill baby, and really doesn't cry much, unless there's a legit problem. Today, he was not that baby. He was tired and cranky. And we woke him up. Once the helmet was off for her to go trim it, he settled down pretty quickly. But she had to trim it 4 times before she got the fit she wanted. 

He was so exhausted by the last time she brought it in that he had passed out sitting up. So she got the measurements she needed of his head and we even got the helmet on him while asleep. She snapped the pictures for the surgeons of the fit and said, well normally this is when I have you guys practice putting it on & taking it off, but I understand if you want to skip that since he's sleeping. So we skipped that & just took him home. 
He wore it for almost five & a half hours before he really started getting upset. So I took it off to have a little play time & nurse. He doesn't have to sleep in it all night just yet, but tomorrow I'm going to try to keep him in it most, if not all day. 
Immediately after we got home. 

Having some play time. 

Still a little short for the bouncer...but he will get there!



Friday, January 30, 2015

Change of plans

Arron's helmet did not arrive at the clinic today. So obviously we aren't picking it up today! The poor tech was so frustrated and kept apologizing. I told her, hey if I'm going to squak at somebody, it's not you. It's somebody at corporate. You did everything you could, you called them and confirmed it needed to arrive today, they screwed up not you. Plus I'm not super heartbroken over this change. I was afraid I would have a screaming baby all through the Super Bowl as he adjusts to life in a helmet. Now that's delayed a few days. 

So I'll post a pic on Monday of him in his helmet. But in the meantime, since I promised a pic, proof that he still hates tummy time. 

Thursday, January 29, 2015

Time to breathe...

Okay, sorry I haven't posted anything since we got home from the hospital, but things have been a little hectic and overwhelming.  The doctor's actually removed a much larger piece of Arron's skull than they had previously anticipated.  It was supposed to be a thin strip in an L-shape.  But once they got in there, they found that there was a small depression in Arron's skull, and the bone in that area had already begun to thicken.  Dr. Hopper was concerned that Arron's skull would not push itself out if he left that thicker piece in place.  So, he took out, what looked to me, to be about a 2.5-inch-by-4-inch piece.  Because the piece of bone was much larger than expected, they had to make a second incision on the back of Arron's head to be able to get the bone out. That incision is looking GREAT because he's always wiggling his head back and forth so it has pretty much no scabbing on it.  The one on the top of his head is harder to see because of all of his hair, but it's got a lot more scabs on it. I'm sure they're ready to come off, but I'm too chicken to try and loosen them since his stitches haven't dissolved yet.
This is the incision on the back of his head. 

This is the expected incision on the top of his head.

I can't remember if I covered this before, but they pull the bone out, and have a fancy little machine that crushes it up like gravel, and then most or all of it, actually goes back in his head, to give his skull something to work with to knit itself back together.  They said we didn't need to worry about holding him any different or anything, just try not to poke him in that spot, just like we wouldn't poke him in his soft spot up top.  Seemed to me like it would hurt if somebody touched the gravel that had just replaced part of my skull....but I'm not a doctor.  So I just smile and nod!

He's doing well for the most part, but it hasn't been particularly easy getting him off the Oxycodone.  I actually called the clinic yesterday for advice on how to ween him off of it.  I'm guessing at this point, it's more like tiny withdrawals than lingering pain issues.  At our follow up I'm going to suggest that they create some sort of a guideline to print and send home with parents for at home dosing.  For me, I was scared that he was going to be in pain if I spaced the doses out too quickly and since it takes 20 or 30 minutes for it to kick in once you give it, he was just going to be screaming that whole time, making his head hurt even worse.  And the fellow that did our discharge said they just like to see them off it within 2 weeks of surgery.  (The ARNP informed me yesterday, most kids don't need it for more than 4-5 days after surgery, and after a week, they start to develop a tolerance and then need to be weened.)  So I probably spaced things out too slowly and kept him on it longer than he needed it, but we are getting there.  He's down to the absolute smallest dose that's still therapeutic, and he's only getting it every 8 hours.  If we can maintain that schedule all day today, tomorrow I will try every 12 hours.

We had his echo on Monday, and that looked totally normal. PTL! So we don't need to see a cardiologist.  He's had his blood pressure checked twice since we came home, and they were both normal!  So, as long as his  follow up renal ultrasound looks okay, the nephrologist will just chock it up to too much fluids for his little body to deal with so quickly, given the small size of the ducts for draining his kidneys.  So fingers crossed that we have normal ducts in 11 days!
Rocking the sock that helps them get a good scan for his helmet.  You wouldn't know it by this picture, but he screamed most of the time he had it on.

We got him scanned for his helmet on Monday too, and he's already had some positive growth!  Woo hoo!! We pick up his helmet tomorrow afternoon, and then we will have to do the break in over the weekend.  :(  Hoping it goes smooth and I don't have a screaming baby all through the Super Bowl.  Pray for me.  Or him.  Or both. And the Seahawks. GO HAWKS!!!

Okay, back on topic...we follow up with our surgeons on Monday the 9th, and he also has his follow up renal ultrasound that day.  That week we will do a trial run with daycare to make sure all is going well and the gals running his classroom feel comfortable with him coming back, knowing what to do if his helmet gets turned funky, etc.  I go back to work the following week, on Tuesday the 17th since Monday is a holiday.  We won't see our pediatrician at Children's for another 2 months or so.  Our regular pediatrician just put in a referral for his physical & occupational therapy so we can get his neck fixed so he doesn't just flatten out again because of his torticollis.  So everything is moving in the right direction, now it's just going to take time, and work with the PT.  I'll post a pic once we have his helmet.

Monday, January 19, 2015

Home!

We are home!! 

So they couldn't do the echo today & wanted us to stay so they could do it in the morning. We asked if it would put him at any risk to go home today and then come back later this week to do the echo on an outpatient basis. The answer was a resounding no, no risk. So we are home and will have his echo later this week. 

We also spoke to the nephrologist who said that his renal ultrasound showed excess fluid in one of his kidneys. She assured us that this is common among babies & most outgrow it. It could also be related to how much fluid his body was trying to deal with. So they are going to have us take him in for weekly blood pressure checks at our local pediatrician. We will also have a repeat ultrasound in about a month to make sure it's getting better & not worse. Assuming his BP checks look good, and so does the follow up ultrasound, we will only be seen in their clinic once, to discuss all the results. But if his pressures are bad down here, that will change the plan. 

So yay! We might all get some sleep tonight!! No beeping machines, vital signs, etc waking us all up! Although, he sleeps through a lot of everything lately...

Echocardiogram...maybe...

So because today is a holiday and its non-urgent, they can't do his echo today. Which means another night in the hospital. 😔 The chief neurosurgery resident just came to get our opinion because, as he put it, we have entered the gray zone. Yes he needs this study done, but he wouldn't be at any risk going home tonight & coming back in a day or two for the echo. We said we would like to go home as long as it doesn't push the echo out too much farther. (Everything happens slower in the outpatient world.) 

He's going to make some more phone calls & should be back in an hour or two to let us know what the teams think. 

#babycleavage

What a difference a night can make

Arron's swelling is almost completely gone! He can open both eyes & I think that's doing a lot for his attitude. Now he can see his nurses instead of being attacked by a thermometer or blood pressure cuff he can't see coming. 

His blood pressure is petty much back to normal without any blood pressure medication so that's great news. His heart rate is looking better but it's still a bit higher than they'd like it. So we will get the echocardiogram sometime today and as long as there's nothing crazy on it, we get to go home today!! 

Sunday, January 18, 2015

Hurry up & wait

Arron II had his ultrasound, we are just waiting for the results. Our nurse had to go with him & stay to keep an eye on his monitor and said it would take about an hour. So Arron & I took the opportunity to leave the hospital to get dinner at our favorite Thai restaurant up in Northgate. It was a nice break. 

Our nurse said that once his ultrasound report is back the night shift nurse will text page the hospitalist to come and talk results with us when she can. We won't see the nephrologists again until morning. 

They have ordered an echocardiogram for tomorrow just to check for any possible issues. If his vitals were to stabilize they may cancel it, but we will see. She said his BP looked better during the ultrasound but I don't know where it's at now. We also have orders for BP meds if he creeps up past a certain threshold but he's been just barely under it all day. I'll post again after we get the ultrasound results. 

Nephrology

We saw the nephrologists & they are starting with an ultrasound of his kidneys looking also at the blood vessels coming into his kidneys. They suspect that this is just a temporary problem & not something more serious, but they want to make sure. They may do a chest X-ray later to look at his heart, but they weren't sure about that yet. 

So far all of his labs have looked good. The nephrologists decided not to order more kidney labs because the function tests were good & the other tests would look for more rare issues. The only other labs would be looking at his hormones released by the kidneys but the IV fluid he's had can mess with those numbers. So they are holding those for now. 

They had to page the ultrasound tech to come in so no idea when it will happen. I'll post more when we know more. 

New plan

The neurosurgeons got one of the pediatric hospitalists involved since the issues he's having don't seem to be related to his surgery. His incision looks great and everything went really well in the OR. They are ordering more labs and he will probably have a nephrology consult to make sure there's nothing going on with his kidneys. The labs they ran so far haven't shown any issues with his kidneys but they are going to start digging to find the cause(s) of his issues. 

That's all I've got for now but I'll try to keep the updates coming. 

More specialists

His heart rate is still up & for the most part, his BP has remained elevated. When I talked with the hospitalist last night she said she was actually more inclined to do a nephrology (kidney doc) consult before a cardiology one. Blood pressure issues in kids are frequently related to fluid levels, which is managed by the kidneys. 

So she ordered a urine analysis to look for protein. They didn't find protein but they did find glucose. So they checked his blood sugar which was fine. She was also able to have them run some tests off his blood samples from yesterday to look at kidney function and it all looked fine. I'm assuming we will still consult with them to talk about why he has glucose in his urine. 

Unfortunately, those tests got us no closer to an answer on his heart rate or blood pressure. So they did an EKG, and other than it being too fast, everything looked normal. He's still got a nice healthy sinus rhythm. I'm hoping they will order a cardiology consult along with nephrology. So he's still the interesting kid, which is not who you want to be in a hospital. 

In a little better news, I had told the nurse last night that he seemed much more lethargic & less responsive on the oral oxycodone than he was on the morphine. So we cut his dose in half & that has been much better. We still seem to have good pain control but he actually wakes up when you mess with him. And he's eating about 2.5 ounces every 4 hours. Certainly not up to his normal intake, but better than sleeping so hard he's not eating at all. 

So unless something drastic happens, I don't see us going home today. 😔 glad I brought an extra outfit & they have laundry on site here!

Saturday, January 17, 2015

Progress?

They've moved us out of the ICU & onto a regular surgical floor. I have serious mixed emotions about this. His heart rate is 178 and after the transfer is BP is back up to 122/65. On this floor they will only check his vitals every 4 hours instead of hourly. But if his wacky vitals meet the criteria he'll have them every 2 hours & be seen by a risk nurse. Which is really an ICU nurse making sure that kids shouldn't actually be up in the ICU. 

One of the first things our nurse asked was, are his feet always like this?! So I told her no & about the discussions around his poor perfusion upstairs. She said she wasn't entirely buying that explanation but she was getting ready to go to lunch when we got here. So hopefully she can push for more answers when she gets back. 

From ICU to Neuro floor

After several conversations they are moving us to the neurosciences floor as per the original pre-op plan. His blood pressure is looking much better and the slight elevation that remains is consistent with a bit of post-op pain. Ideally, they'd like him to be about 80/40. His last pressure was 95/59 which isn't too far off. He's been as high as 160/80. His heart rat is still in the 160s with spikes up to 185 even while resting (should be in the 120s). 

Since they see a nice, normal sinus rhythm from his heart, the docs are holding off on the EKG for now. It's unlikely that they would find anything on the EKG with what they're seeing on the  1 lead he's got on. They think this is just his response to the pain & anesthesia. 

As for his cold, purple hands & feet, it comes & goes. His pulses are good & strong whether his extremities are cold & purple or warm & pink. So they think he's just diverting that blood flow either to his belly to digest what he's eating or to his head to help with healing. Unfortunately that increases the pressure in his head, which increases the pain. Which makes him cry, which increases his pressure & heart rate, and increases his pain. 😞 



So please continue to pray for Arron, the docs, and Arron & I. If his heart rate doesn't start to come down soon momma bear might get a bit pushier in running some of the easy tests just to rule things out. 

I did have a long chat with his nurse because I know they often have a different opinion about the best plan of care & a little different perspective after 12 hours of monitoring a patient than a Dr who just stopped & poked their head in for 45 seconds. She said she thinks the floor is an okay call because they don't really have a reason to sit on him in PICU anymore. He's got some suspect numbers but without something a little more concrete, it's hard to justify keeping him. If his pulses were bad, or his pressure was different in different extremities, then it'd be a whole different story. But for now we just have to hurry up & wait to see what he does. 

The plan

Okay well it's not much of a plan but overnight he made some improvements but not enough. His feet have been turning purple & getting very cold intermittently, his blood pressure looks better, but still not normal, and his heart rate came down a smidge but then he has weird episodes where even without any stimulation it shoot way up again. 

Our night shift nurse encouraged me to advocate for at least an EKG. We have the same nurse now on days as yesterday. So she said she's going to be pushing for at least an EKG, but also an echocardiogram and cardiology consult. They can't hear a murmur and his pressure in his extremities is equal, so it's not his aeorta. But better safe than sorry. Plus, we are already here and we are looking at non-invasive tests, so there's no reason not to do it. Giving him blood pressure meds every 6 hours is not really feasible long term. 

So please, continue to pray. For him, for the Drs, for my splitting headache, and for answers. Obviously I'd like to see him leave the ICU today as planned. But I don't want him going anywhere until we have this stuff resolved. 

Friday, January 16, 2015

Vitals

His blood pressure is up again & now his heart rate is up & staying up. They drew a bunch of labs but they all came back normal. On the one hand, it's good news. On the other, it offers no clues as to what's going on. So they just gave him some Tylenol to see if it helps at all which would indicate that it's pain related. If we don't get much response from that, they'll give another dose of morphine. He may require more diagnostic imaging tomorrow to make sure there's no swelling in his brain. The surgeons don't think that's the issue, but they want to rule everything out. His rhythm looks good & normal, so they don't think it's an issue with his actual heart. It's just a matter of figuring out what it is, so they can treat it. 

Unless something happens overnight, this is probably my last update for the night. 

Update

He's still pretty out of it, but he's also needed multiple doses of morphine. His blood pressure was elevated and so they've had to give him several doses of a blood pressure medication to get it back down. They said its a fairly common reaction to the anesthesia but that doesn't help me worry less. 

He finally ate something around 6 pm but before that he was just too out of it to be able to eat. They wanted him to start slow so we only gave him 2.5 ounces which made him mad. But at least I got to hold him while he ate. Now he's resting quietly. 

So, we still need your prayers that his blood pressure & heart rate will normalize without further medication & that his pain can be brought under control more easily. They won't even try changing him over to oral pain meds until he's eating better. And right now the morphine makes him too tired for that. But if we withhold the morphine to try and wake him up so he can eat, he screams & gets so worked up that he won't eat anyways. So we're stuck in a bit of a vicious cycle. 

ICU

We are in the ICU with him now. He's still really sleepy. He's a little swollen but not too bad. They said he'll probably get puffier before it goes down. He's starting to fuss as I'm typing so the nurse is going to get him a dose of his pain meds. I'll keep the updates coming as I can. 

He's done!

We just talked to the doctors and everything went great. He only lost about 40 ccs of blood and they don't give blood unless they lose over 100ccs. His hematocrit looks good & his RSV didn't seem to cause any issues, his oxygen levels were nice & stable throughout so his breathing tube is coming out. He's headed to get his CT now and then it will take them about 45 minutes to get him settled in the ICU. 

Surgery has started

We got the call about 10 minutes ago that they started the surgery. Our next update should be in 30-45 minutes to let us know how he's doing half way through. 

Things are under way.

They took him back to the OR at about 7:45 this morning. We haven't heard anything yet, but they told us it often takes an hour & a half or even 2 hours for anesthesia to put him under, get all the monitors on & lines in, and get him positioned before they actually start surgery. 

He did better than I expected this morning. He was hungry, but didn't cry about it too much and then fell back asleep. I'll post when we know more. 


Thursday, January 15, 2015

All clear!

We were given the all clear today in the preanesthesia clinic. They actually paged one of the anesthesiologists assigned to Arron's surgery tomorrow to come & look at him. After listening to his lungs, she gave the all clear for surgery tomorrow. She did explain to us that it generally takes 8 weeks after an illness for a child's airways to return to normal. Arron is only about 5-6 weeks out from his RSV. 

She said that it mostly just means he may require a little extra oxygen during his surgery and they need to be extra vigilant during his surgery. Normally they pull the breathing tube out at the end of surgery before he goes for a CT & then to the ICU. She said depending on how he does in the OR, they could end up leaving him intubated for a while in the ICU. So we continue to covet your prayers for his well being; as well as wisdom for Dr. Hopper (his plastic surgeon), Dr. Lee (his neurosurgeon), and his anesthesia team. 

He's had his third & final hibicleanse bath to reduce the bacteria on his body & lower the rush of an infection post-operatively. He's sleeping now & I'll wake him around 2:30 for one last feeding before his surgery. 

1 down, 1 to go

We were seen in the neurosurgery clinic this morning & the ARNP listened to his lungs & thought he should be fine for surgery tomorrow. His cough isn't in his lungs, it's just gunk in his throat. 

For the moment we are relaxing at our hotel and will head over to Children's in about a half hour for his next appointment with the preanesthesia clinic. Assuming they give the thumbs up, we will get some labs drawn & then head back to the hotel. We check in tomorrow at 6:15 a.m. for surgery. 

Almost there

We are on our way to Seattle for our last round of preop appointments. We are staying in Seattle tonight & then we check in for surgery at 6:15 tomorrow morning. 

We got his initial scans done at the helmeting office and confirmed insurance authorization for both the surgery & helmet therapy afterward. 
Hopefully everything goes off without a hitch when we meet with anesthesia later today so we get the green light for tomorrow. I'll let you guys know when we get the okay. Thanks for all your support.

Tuesday, January 13, 2015

Prayers please

Arron had RSV back in mid-December and was hospitalized for a night because of low oxygenation. They told us the cough would linger for a while but things seemed to be improving. Today he has been very congested & has trouble staying asleep on flat surfaces because he coughs so much. 

I can't decide if this current congestion is him getting sick again, or related to him teething. His pediatrician here in town said his lungs sounded totally clear and his surgeons on Monday didn't seem overly concerned but said its anesthesia's call. They will know best if intubation is likely to cause pneumonia or not. So, please pray! Pray for healing in his tiny body, wisdom for the anesthesiologst we meet on Thursday, & that he's well enough for Friday's surgery. I'm sure that by now our February 27th spot is gone so unless they could get more OR time, we would be beyond the 6-month mark & not have a choice in surgery. He would need the full, open surgery (cranial vault remodeling). 

I also seem to be coming down with a cold, so I'm having dad hold him as much as possible. And when my sinuses freak out, my teeth hurt, which triggers headaches. So I'm a hot mess right now. We appreciate your prayers & support!

-McGinnis Family

Monday, January 12, 2015

Pre-op round 1

We met with his surgeons (and a zillion other people) for our first round of pre-op appointments yesterday. Looks like we are all set for surgey on Friday. They also got us hooked up with a discounted rate on a hotel room for Thursday night so we don't have to drive back late Thursday and then up crazy early on Friday. 

We also enrolled in a research study investigating the cause(s) of craniosynostosis. It's just a simple blood draw for the little guy that they'll do as they start his IVs on Friday morning. Arron & I will also have blood drawn as part of the study. They are looking for genetic variations that may cause cranio. There are already 3 or 4 genetic conditions that they know cause it and Arron will be screened for all of them. If he tests positive for any of the known conditions, they will call us & let us know. 

Crackin grins for daddy at the doctor's office:


Thursday, January 8, 2015

The backstory

When Arron was born, we noticed that his left ear was folded over on itself.  The docs weren't too concerned about it and said it appeared to be related to his position in the womb and not that it had formed incorrectly.  But over time we noticed that he had a VERY strong preference for ALWAYS looking to the left, and usually up at an angle like this:


 It didn't seem like a huge deal, so we just kept trying to reposition his head to have him looking straight ahead.  (We had very little success.) We also noticed that he was developing a pretty nasty flat spot on the back of his head because he was always laying on the same part of it.  So at his 2-month well baby check, I brought it up to our pediatrician.  He diagnosed Arron with torticollis, which is a tight or short muscle in the neck that causes this extreme preference for always looking to one side.  He thought that the flat spot would correct itself over time, and was nothing more than positional plagiocephally. Plagio is not a big deal of generally corrects itself once babies start sitting up and quit putting pressure on that same spot on the back of their head.  He did recommend though that we go get Arron evaluated at Seattle Children's Craniofacial Clinic just to make sure that nothing more serious was going on.  I agreed that it was better to be safe than sorry.

So on December 8, we met with Dr. Wenger at Children's.  She's an awesome Craniofacial Pediatrician as well as a genetic counselor.  After talking with us for a few minutes and evaluating Arron, she said she wanted to get a CT of his head, to make sure it was just plagio and not craniosynostosis.  Cranio is when one (or more) of the sutures in the head fuse prematurely.  It's important because those sutures are what allow the skull to grow and accommodate Arron's rapidly growing brain.  When they fuse too soon, it causes pressure in the brain which can lead to blindness, seizures, developmental delays and eventually death.  So she went and worked some magic with radiology, and off we went!  He did awesome during his CT.
Unfortunately, his scan revealed that he had craniosynostosis in the lambdoid suture, the most rare suture to have fused.  Cranio as a whole only impacts 1:2000 babies, but lambdoid is only about 5-10% of all cases.  Go big or go home I guess!
So after one VERY long day and a few naps for Arron up at Children's we knew what we were up against and that we would be getting a call in the near future to set up a surgical consult with our plastic surgeon and neurosurgeon.  We knew that there were two options for surgery, but one involved removing a large portion of the back of his skull, reshaping it, and then putting it back in with plates and screws that would dissolve in about a year.  It would be roughly a week in the hospital, but then it would be done and over with.  The other option is a far less invasive surgery, that generally only requires 2 nights in the hospital, but then requires helmeting therapy afterwards to correct the shape of his head.  But more about the decision making in my next post.  For now I have to go feed the lil guy and get ready for work.