Friday, September 23, 2016

September 22, 2016

Zeke has been doing quite a bit better the last few days. He’s actually been really calm and sleeping really well. He’s been able to come down a bit on his ventilator settings so it looks like he’s starting to come through the rhinovirus he’s got. They were able to bring his rate down to 35, and he’s been as low as 68% O2. His pressures are still pretty high (33/7) because he has a good size leak in his vent tube. The tube’s apparently too small (he has a 4.0), so at some point they’ll have to put a bigger one in.
His blood pressure has stayed pretty low all week and hasn’t responded very well to the dopamine or leaving additional fluid on. His mean has stayed around the mid 40s even with pretty regular bolis’. Nephrology came by today and expressed concern that even with everything they’ve been doing to raise his BP, it’s still staying low (especially for him). They’re worried that the yeast that they found in his dialysis line is getting flushed into the blood. They recommended replacing his dialysis catheter and neonatal and surgery concurred. They have him scheduled to go to surgery tomorrow. While they’re taking his line out, they’re going to try to run it differently to leave room for ENT to put a trach in. Hopefully that works out because we think the trach will really improve his quality of life.

September 20
4910g (10lb 13oz)

September 21

Almost a smile... Only for Dad, never for Mom.

Monday, September 19, 2016

September 19, 2016

Zeke has been doing quite a bit better the last few days. He’s actually been really calm and sleeping really well. He’s been able to come down a bit on his ventilator settings so it looks like he’s starting to come through the rhinovirus he’s got. They were able to bring his rate down to 35, and he’s been as low as 68% O2. His pressures are still pretty high (33/7) because he has a good size leak in his vent tube. The tube’s apparently too small (he has a 4.0), so at some point they’ll have to put a bigger one in.
His blood pressure has stayed pretty low all week and hasn’t responded very well to the dopamine or leaving additional fluid on. His mean has stayed around the mid 40s even with pretty regular bolis’. Nephrology came by today and expressed concern that even with everything they’ve been doing to raise his BP, it’s still staying low (especially for him). They’re worried that the yeast that they found in his dialysis line is getting flushed into the blood. They recommended replacing his dialysis catheter and neonatal and surgery concurred. They have him scheduled to go to surgery tomorrow. While they’re taking his line out, they’re going to try to run it differently to leave room for ENT to put a trach in. Hopefully that works out because we think the trach will really improve his quality of life.

September 17
4990g (11lbs)

September 17

September 19
4990 (11lbs)

We went and bought Zeke a new bear with a recorded message from Gary - his Daddy Bear (all of the kids have them now). And yes, they share clothes :)

Friday, September 16, 2016

September 16, 2016

So, I've been here for a week and haven't updated. It's been a long, busy week, but I figured I should post something since I'm heading home tomorrow morning.
Gary and I were both home last week. We'd call and check in pretty regularly - a few times a day - and things seemed to be going fairly well, until Friday morning. I'll basically post a day-by-day update, because there's a lot that's happened this week.
**This is EXTREMELY long, somewhat detailed for each day. If you don't feel like reading it, I'll try to summarize it a bit in a few paragraphs at the bottom.**
9/7 - Wednesday
He was doing well. They'd weaned completely off the Fentanyl and had started a small amount of Methadone to try to counteract any withdrawal symptoms he may have. His feeds were up to 18cc/hr, still on the continuous feed pump. He was still on the Amphotericin B to continue treating for the yeast infection he'd had a few weeks ago. He'd had a decent amount of output from his ostomy, and some urine in the catheter as well. He was only on 35% oxygen, and was gaining weight slowly.
9/8 - Thursday
Everything was still going well. The pump was running fine, his heart rate, bp, respiratory rate was fine. His vent settings were low and he was doing well. They had increased his feeds to 21cc/hr. He was tolerating being off the Fentanyl. They received the results from the rectal biopsy they did during surgery the week before, and everything was normal, which is awesome. No real issues.
9/9 - Friday
Both my phone and Gary's somehow ended up off during the night. We woke up to a voicemail from one of the nurse practitioners, asking us to call her asap. Zeke had had an extremely rough night/early morning. His blood pressure had dropped to means in the 20's (they want it between high 40's-60's). His blood gas was terrible - ph way down, CO2 way up. He was on 100% oxygen, and still only satting in the low 80's. They thought there may have been a clog in his vent tube, since they'd try to suction and weren't getting much, and they weren't really hearing any breath sounds. They extubated, and tried to reintubate, but couldn't get the same size tube in because his airway was so swollen, so they had to go with a smaller size (down to 3.5 from 4). Because the tube was smaller, he had a substantial air leak (that continued to get worse after the inflammation in his airways started going down). They bumped his vent settings way up, and stopped his feeds. They started him on more antibiotics, in case it was a bacterial infection, and sent blood cultures and a viral panel. The cultures would take several days to grow, but the vrp came back positive for Rhinovirus, which is literally the common cold, but because Zeke's immune system is so compromised already, and his lungs aren't very strong, it hit him extremely hard. They'd done a few albuterol treatments to try to open up his lungs, as well.
9/10 - Saturday
Zeke turned 5 months old! I got back up to Birmingham Saturday afternoon. He was still on fairly high vent settings, and was pretty irritable and agitated.
9/11 - Sunday
Zeke's weight was up a tiny bit from Saturday (from 5010 to 5030g). His blood cultures were negative, but they weren't sure if it was a false negative, because when they took the cultures, his perfusion (the amount of blood in his capillaries) wasn't great, so they couldn't get enough blood to get an accurate result. His CRP (a blood test to look for signs of inflammation) was up almost double from the day before. They gave him another dose of the two antibiotics (vancomycin & tobramycin) to be safe. They started his feeds back at 16cc/hr. His heart rate and blood pressure were good, but not great. His blood gas was also good, and they had weaned both his pressure to 37/7, and his rate to 35, and he was getting 45% oxygen.
9/12 - Monday
Monday was a Monday... Zeke had an extremely rough day. He was really agitated and couldn't calm down or get any good, restful sleep all day. He was due for a new pump in the afternoon, but his pump clotted early in the morning, so he was off dialysis for a while. His blood pressure was pretty low (means in the low 40's), and his heart rate was high (averaging 180's, sometimes jumping over 200 when he was mad). They didn't want to chance his blood pressure crashing when they put him back on dialysis, so they put him back on the max dose of Dopamine (20mcg/kg/min) to get his bp up. Pump change went well, but he continued to be extremely agitated throughout the day. HIs gasses weren't great, so they went up on his vent settings and oxygen a bit. They did change his vent tube out today. They sent blood cultures from one of his dialysis lines as well.
9/13 - Tuesday
Zeke's weight was up slightly (4860g) on Tuesday. His blood pressure was still low - means dropping as low as the 20's at times - so they gave him a one-time dose of hydrocortisone, as well as giving some blood for more volume, and that seemed to help. He was still on a dose of 20 on the dopamine. The pump was running fine, and they were leaving on 10cc/hr of fluid. They changed some of his antibiotics. He did run a slight fever, but it didn't last long. HIs methadone was weaned, and he's tolerating being off the Fentanyl with no issues. Still getting his dose of Ativan every 6 hours for agitation. Feeds were increased to 18cc/hr, and he's been tolerating feeds well. Gasses were better on Tuesday, and his vent settings got weaned twice, his rate to 35 (down from 40), and pressure to 32/7 (down from 37/7). He was on 45-55% oxygen most of the day. Zeke seemed like he was feeling a ton better Tuesday. He was awake when I got to the hospital at 10am, and had been for a while. He only napped for about an hour and a half, and finally fell asleep around 8pm. He was content all day, just watched us walk around, and looked at his 'friends' (his toys).
9/14 - Wednesday
Wednesday was another rough day. Zeke was pretty irritable again most of the day. Weight was up to 5170g - 11lb 6.3oz (up 310g overnight). They had weaned his vent settings to a rate of 30 and pressure of 31/7, but around 9pm went back up to a rate of 35. He'd seemed like he was retracting a lot, and working a lot harder to breathe throughout the day. He was on 50-60% oxygen most of the day. His dialysis pump clotted again and had to be changed. They left it at I=O. His heart rate was better (averaging 120's) and BP was better as well (means in 40's-50's). They were able to wean the dopamine down to 13mcg. The blood cultures they took from the dialysis line on Monday came back positive for yeast. They decided to redo the cultures, and sent cultures from each arm and also from the dialysis line today. Nephrology wanted a CT scan to look for a possible abscess, somewhere that's harboring the yeast infection, but neonatology and infectious disease both agreed that a ct scan was too much radiation, and decided to do ultrasounds instead.
9/15 - Thursday
Weight was down 60g (2oz) to 5110g (11lb 4.25oz). The pump clotted again, so he got a new setup. His dopamine was still at 13, and his blood pressure means were in the 60's. They want several over 65 to wean the dopamine. They went up to 20cc/hr on feeds, and as they go up on the amount of breast milk he's getting, they're also weaning the amount of IV nutrition. As of now, 30-33cc/hr is a full feed (which would equal out to about 3-3 1/2oz every three hours). They started a low-dose versed drip, and changed the ativan to a prn (as-needed) med he can have every 6 hours. His vent settings were way up, due to bad gasses. (Rate of 45, pressure 33/7, oxygen between 60-70%) They decided against doing a ct scan due to the excess amounts of radiation. They did an echo (heart ultrasound) and renal (kidney) ultrasound, and both looked normal. They're waiting on the blood cultures to come back before deciding what course of action to take regarding the yeast.
9/16 - Friday
Today has been a somewhat better day. Weight is 5305g (up 195g). Vent settings are still the same (rate 45, pressure 33/7). Heart rate is better (140's) and bp has been good as well (means in 50's-60's). His dopamine is still at 13mcg. The pump has been running fine today, and he's holding steady at I=O. His urine output today has been 18ml, and his ostomy output has been pretty high at 58ml. He decided to extubate himself tonight, and when they reintubated, they put in a larger tube (went from 3.5 to 4.0). He still has a small air leak, but nowhere near what it was before. They took more blood cultures from his dialysis lines today - from both sides of the line this time. He's also been having a lot of issues with his PICC line not wanting to run or flush.
All in all, it's been an extremely stressful week. He hasn't been feeling well or doing very well, so neither have we. It's been especially stressful with him getting a cold virus, and especially learning that he still has yeast, because he's on a fairly high dose of a pretty strong antifungal (amphotericin b), and has been for several weeks, and that should have wiped out any yeast that he had. Yeast infections can be fatal, so we're pretty concerned about it at this point, that it's back, or still around, despite the meds. Apparently yeast cling to plastic, which is pretty much everything that's stuck in his body, and it's hard to get rid of the yeast while you still have the plastic lines in place. We're waiting on all of the cultures to come back to see what the next course of action is. On one hand, if he has to have his line replaced, it would be a good time for them to place the tracheostomy, as well as potentially put in a larger line that will be compatible with larger dialysis machines in the future.
His vent settings are way up, and we're hoping that he'll be able to come down some on those fairly soon. His feeds have been increasing slowly (he's back now to where he was before he got sick this time, about 2/3 of his total feed volume). Growth is good, as well.
We're praying for Zeke to get better. He's still not feeling well, requiring a lot of respiratory support, and seems fairly agitated, but he's strong and we feel confident that he'll recover from the virus and infection.
He has a little hat that he wears, called a tortle, that has padded tubes on either side of the back. It's supposed to help him keep his head midline (straight), to try to get rid of some of the flattening on the left side, as well as help to stretch out the tight muscles in his neck from having his head turned the same way for so long. PT has also been coming by to help him stretch and stuff.

September 5
4690g (10lb 2oz)

He's finally started getting used to laying on his right side, and doesn't fight it AS much anymore.
Most of the time.

September 6

September 6
4490g (9lb 14.3oz)

Zeke in his special hat called a Tortle for physical therapy

September 6
With Daddy

September 10
5010g (11lb .5oz)

Officially FIVE months old!

September 11
5030g (11lb 1.5oz)

September 12

September 12
He wasn't feeling well on his 'birthday' day, and I didn't want to mess with him too much, so I waited a few days to do his five month photo

September 12
"Hey, Mom... What's going on?!"

You can see LOTS of red in his hair in this one!

September 12
4840g (10lb 10.75oz)

September 13
Not liking his Tortle much today

September 13
4860g (10lb 11.4oz)

September 13

September 13

September 14
5170g (11lb 6.3oz)
September 14 
September 15
Mom got to hold me while I was off dialysis  
September 15
5110g - 11lb 4.25oz

September 15

September 16

September 16
5305g (11lb 11oz)
 Pre-bath picture. You can see all of his 'attachments' here.
*On one foot, under a sock, is his pulse-ox (oxygen monitor).
*Taped to his leg is his urinary catheter. 
*On the left side of his belly is his colostomy, and below that (you can't see it) is a tiny opening to the bottom portion of his intestines, called the mucus fistula.
*In his chest (purple line) is his dialysis catheter. It has two tubes - one tube pulls blood out and sends it into the dialysis machine, the other puts the clean blood back in. The tubes at the top of the picture are the dialysis lines, to and from the pump. The fat blue tube is actually a heater, to warm the blood before it goes back into his body to keep him from getting too cold.
*Also on his chest/belly are his leads -three stickers with wires attached. These monitor heart rate and respiratory rate.
*On his right arm is his blood pressure cuff.
in his left arm is his picc line (a central IV line). This is where he gets his meds, his iv fluids, etc...
*In his mouth are his vent tube (the big clear one), and his OG (feeding) tube (the small clear and orange one).

September 16
Post-bath. Happy and clean

September 16
Post-bath. As soon as he was clothed and swaddled, he fell asleep. Literally, almost immediately.

Friday, September 2, 2016

September 2, 2016

Zeke has done pretty good since surgery. The nurses actually had to turn down his fentanyl because since he wasn't on dialysis, it wasn't clearing out of his system. He was super sedated yesterday evening with his heart rate around 70 BPM. His heart rate is still pretty low today but we think it's a combination of the fentanyl and him getting fluid overloaded from being off dialysis.
They were going to put him back on dialysis yesterday, but he still had a lot of bleeding and blood in his urine. They didn't want to start it because the heparin would have just caused more problems. His urine cleared up today and they got him started back on dialysis with no problems. They're keeping him on I=O until they pull off the excess fluid he gained.
Hopefully tomorrow they'll want to start him back on feeds as he's still just getting IV nutrition.

September 2
Looking at one of his fun toys
September 2
4760g (10lb 8oz)
September 2

Wednesday, August 31, 2016

August 31, 2016 - Surgery Day


Zeke just went back for surgery. If everything goes well, it'll probably take 2-3 hours. Anesthesia said they were not doing the tracheostomy today.


Zeke is out of surgery and didn't have any complications. The urologist was able to go in and get an eye on what the problem was in the urethra/bladder. His urethral valve was completely scarred/closed over and blocking any drainage from the bladder. He was able to get past it and explore the bladder. We thought the fistula was between the bladder and the colon, but it wasn't. It appears that when he had surgery in Denver while he was in utero that they nicked the urethra while they were trying to oblate his urethral valves. So the connection between his colon was through the urethra right behind the valve. Due to how small his urethra is, the urologist was not able to get in and fix the fistula. He was able to get a catheter in so his bladder is draining (somewhat) normally now. The smallest scope the doc had was a 9 french and the largest catheter he could get in was only a 6 french. So he's got a ways to go before they can get in and fix it. He didn't have to get the vesicostomy though which is great news.
Now we're going to have to wait for him to get bigger before they can reattempt fixing the fistula. That also means that the ostomy takedown will now be pushed back until the fistula can be fixed.
Same thing with the tracheostomy. He's too small to move his dialysis line anywhere else and right now it's running right across his throat where the trach needs to go. He'll just have to stay on the ventilator until he gets a bit bigger and they have room to place the trach.
Out of all this, the good news is he didn't have to get the vesicostomy and get another hole stabbed in him.

August 31
4460g (9lb 13.3oz)

Swollen, Post-Surgery

Tuesday, August 30, 2016

August 30, 2016

Ezekiel has done really well over the last week with only a couple issues. He does have a big day tomorrow as he’s getting another surgical procedure done. His ventilator settings have stayed low throughout. He’s currently at O2 of 36%, rate of 20, and pressure of 21/5.
The biggest concern these last two weeks has been the infections. He had a positive blood culture last week that they started treating, but all his cultures since have come back negative. Since it was yeast infection, they’re going to continue to treat for another 10 days. They conducted a bronchoscopy last Wednesday (8/24) and the culture from that came back positive for strep and klebsiella. They started him on another antibiotic to cover it, but they’re not too concerned as it’s a lot easier to treat. It typically leads to pneumonia, but they caught it pretty early and started treatment so they’re not too concerned about it advancing. Now none of the infections are going to delay his surgery, so we’re still good for tomorrow.
The doctors conducted a bronchoscopy last week to try to see what was causing his difficulty in staying extubated. While exploring his airways they saw that his lungs have actually recovered very well and that’s not causing the problem. He actually has proximal bronchomalacia, which essentially means that the cartilage in his upper airway is not very rigid and is collapsing inward. That’s the reason that he struggles to breath once they pull his tube out. The ENT docs decided that the best thing for him is to get a tracheostomy which will allow them to reinforce that airway while getting the ventilator out of his throat. It’s another surgical procedure they’re going to do, but it should help him get to the point that he can get off the vent completely.
The surgery is going forward tomorrow and is going to consist of a couple different procedures. First, the surgeon is taking a rectal biopsy to make sure that he doesn’t have any mobility issues in his colon (Hirschsprung’s disease). Then the urologist is going to give him a circumcision so that he has access to the urethra. They’ll conduct a cystoscopy to see how the bladder looks and try to remove any obstructions in the urethra that’s preventing the flow of urine. If that doesn’t work, he’ll do a vesicostomy (install a drain from the bladder). The surgeon hopes that once they open up the preferential drainage for the bladder, that the connection between the bladder and colon will close up on it’s own. Following all this, ENT will install his tracheostomy. Right now the tunneled dialysis catheter Zeke has runs across his throat and they still have to confirm that it’s not going to cause any problems. That’s currently still up in the air and they have to do some more consulting with surgery.
As Amanda mentioned last week, he’s been having some gut issues. He’s been very irritable and has had a ton of gas out of his ostomy and in his intestines. They took a KUB (abdominal x-ray) Saturday and it showed massive amounts of air in his gut. Sunday morning they took him off breast milk and put him back on IV nutrition. They’re not sure what’s causing the issues (we think it’s the fortifier they’re adding to milk since all these issues started when that began). They’re just going to keep him off until after surgery.
The travel and stress of dealing with his hospitalization and the fact that he will be here for many more months has led us to request a compassionate reassignment from the Army. The nephrologist team has already spoken with the docs at John Hopkins in Baltimore and they’ve agreed to take Ezekiel. We’re now working through the process of getting the Army to approve my reassignment to what we call the NCR (National Capital Region). There’s a lot of assignments available up there and it will make life so much easier to be able to close to the hospital where Zeke’s at. Now we just have to try and get all our stuff together, sell our house, and find a new one in the next 2-3 months. So if anyone’s looking...

August 27
4530g (10lbs)

August 27

August 28
4660g (10lb 4.3oz)

August 29
4340g (9lb 9oz)
August 30
4420g (9lb 12oz)

Working with his toys. His PT is hard!

August 30

Sunday, August 21, 2016

August 21, 2016

Zeke has been doing ok the past few days.
On Thursday, 8/18, we decided to try to get him off the warmer. I went shopping to buy him some clothes, and his nurse and I got him dressed for the first time! We swaddled him up, put a thicker minky blanket on him, and turned the bed warmer off. They kept an eye on his temp overnight, and he did fine! He's been able to stay dressed and keep his temp up on his own for the most part. He gets a little cool when he's not swaddled or doesn't have a blanket on (he got a good bath scrub down the other night, and they turned the warmer back on for a little while after that, but as long as he's covered, he's good). We were hoping this would mean they'd consider moving him to a regular crib vs. the warmer, but because of surgery coming up, and the fact that he'll need to be open afterwords, they decided to keep him in the warmer.
On the morning of Wednesday, 8/17, they decided to start leaving 5 on with dialysis because he was starting to get dry. He had pump change Friday, 8/19, and it went well. Later that evening, his lines weren't flowing well, so they put tpa in for an hour to try to get rid of any clotting that was happening. Last night, around 3am, the pump clotted, so they replaced it this morning. He seems to still be doing ok though. His lines have been behaving much better than the ones in his neck did, and we've been able to continue changing his position without much issue.
Gary and the kids came up on Friday night, and while they were here, Zeke was still off the pump. We were able to hold him, and we took our first picture as a family of 6. Zadie held Zeke, and she loved it. Ezra really liked being able to touch him and look at him without being held, too. (Ryker was pretty interested in the olympics. lol) I've gotten to hold him several times this past week, even while he's been on dialysis. It seems to calm him down, and I enjoy it too 
His lumbar puncture cultures came back negative for yeast or any infection, which is awesome - that means he doesn't have meningitis or any infection in his brain. The blood cultures from 8/12 and 8/14 were both positive for yeast, and the culture from 8/16 wasn't counted because he was pretty dry and they weren't able to get enough blood to potentially grow anything. They sent two sets of cultures on 8/18, and one on 8/19. We should have results for all of those tomorrow or Tuesday.
Apparently yeast is a fairly difficult infection to treat and get rid of, especially in babies, and especially in babies with a lot of plastic in them (so all of Zeke's lines and his breathing tube). It can be fatal, so we're so thankful it's not in his spinal fluid, and are praying it was caught soon enough to be treated quickly.
Zeke has had a pretty upset belly the past week or so. It could be several reasons - they started fortifying his milk with a renal formula for extra calories, they started giving him liquid protein, they started the antifungal medication... all of which can be fairly hard on the stomach. He's been really gassy and uncomfortable. On Friday evening, they started a new med for GI cramping, called hyoscyamine (used for bladder spasms/cramping). It seems to be working - he seems less irritable today than he was on Friday.
He started spitting up a lot over the past few days, and they decided to change his feeds from 50ml over about 30 minutes every three hours, to continuous - he gets 17ml over the course of an hour, all day. He's not spitting up as much now.
He's still on the ventilator, and he will be until after they do the bronchoscopy. We're not sure exactly when that will be. They want to be sure there infection is gone, because they don't want to potentially introduce yeast into his lungs. The last I heard, they were going to wait to do the bronch until 3-5 days after his second negative blood culture. His vent settings are pretty low, though - rate of 20, pressure 21/5, and he's been getting between 25-35% oxygen for most of the past week. His settings are low enough for extubation, as long as he continues having good gasses, and his bronch goes well.
I talked to the surgeon the end of last week. He came in with a plan for surgery. He and the Urologist coordinated for August 31 to do the first part of the surgery (separating the bladder/bowel, trying to find/get rid of the blockage in the urethra, likely do a circumcision, and do the rectal biopsy to completely rule out Hirschsprung's). That is completely contingent upon the infection being gone at that point. Please pray that the cultures from the 18th & 19th come back negative! They're still wanting to treat for the infection for 10 days after they get the two negative cultures, and we need to get the surgeries started, because the timeline is all dependent on when they can do the first surgery.

August 17
4050g (8lb 15oz)

August 17

August 17
Mom got to hold him...
He was super agitated, and the 'adventurous' nurse was there tonight.

August 18
4130g (9lb 1.7oz)

August 18
First time in clothes!!!

August 18
All snuggly in his warm, fuzzy blanket

August 18

August 19
4170g (9lb 3oz)

August 19
Our first photo as a complete family of 6!

August 21

August 21
4090g (9lb .25oz)

August 21

August 21