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. 

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.

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!! 

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!

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. 

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. 

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.

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

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:

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.