Wednesday, August 31, 2016

August 31, 2016 - Surgery Day

12:20pm

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.



3:15pm


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

Tuesday, August 16, 2016

August 16, 2016

Zeke's day didn't exactly go as planned. His blood culture from the 14th (Sunday) came back positive for yeast again. They're going to continue treating with amphotericin b, and send cultures in daily until they come back negative. The cultures from the lumbar puncture should be back after 72 hours (so sometime Thursday afternoon/evening), so we'll know if it's meningitis or just a blood infection.
Because of the infection, they decided not to do the bronchoscope today. They want to give him time to rest and recover before messing with him too much more.
His belly was pretty distended this morning, and he hadn't had much output from his colostomy since yesterday afternoon. The np and dr came in and were kind of squeezing/massaging his belly, and he had a ton of stool come out (something like 20-30ml). He's still been pretty gassy, but he's had a total of 60-70ml out of his ostomy today.
I've had a migraine all day, so I didn't come in until around 7:30-8:00pm. When I got here, he was pretty agitated, and they said he had been for a little over an hour. They asked for a one-time dose of pain meds for him, but didn't get it, and he finally decided to calm down. Right now he's just hanging out looking at his mobile.
His vent settings are still fairly low - pressure 22/6, rate of 25, and currently his oxygen is set at 24% and he's satting 95-100%. His blood gasses today have been good, and the last one was actualy weanable, so we're just waiting for night rounds to see if they're going to wean the rate or pressure at all.
His weight today was 4150g (9lbs 2oz). Dialysis has been running smoothly. He's been at I=O since the morning of the 13th (Saturday), and doing well. He's continuing to tolerate his feeds as well.
All in all, a few setbacks today, but he's stable and seems happy at the moment.

August 15
Mom taking advantage of being off dialysis and holding Zeke.

August 15
4060g (8lb 15.25oz)

August 15
First time in the bouncer.
He liked it!

Monday, August 15, 2016

August 15, 2016

It's been a while since our last update. We were both home for most of the past week due to a birthday party, and the older kids starting school. Life has been a little hectic for us. So this will probably be fairly long.
Gary and I both came up last Monday, August 8, for a family meeting with all of the departments that are currently working with Zeke. Our goal was to get everyone in the same room and get as much information and as much of a plan as possible. The meeting was fairly helpful and informative.
There are several surgeries Zeke will need, and they're trying to consolidate those as much as possible into two, maybe three, total trips to the OR. The first surgery will be mainly a general surgeon and the urologist. Urology will go in and do a cystoscopy (basically use a camera to visualize the bladder and urethra, and try to figure out what is causing the blockage), and try to get rid of the blockage so Zeke is able to urinate normally. He will also likely need to do a circumcision at this time as well. They will also close up the connection (fistula) between the bladder and bowel - urology likely from the inside of the bladder, and surgery from inside the abdomen. Surgery will do a rectal biopsy during this surgery as well, to completely eliminate the possibility of Zeke having Hirschsprung's. If it's still negative, they'll be good to reattach his intestines. If it's positive, they'll remove the bottom portion of his bowel (from the mucus fistula down), and just attach his intestines that are at the colostomy to his rectum. During this procedure, they will be able to see the health of the abdominal cavity, and will hopefully be able to determine whether peritoneal dialysis (PD) is going to be an option.
Once the first surgery has healed (they say 6-8 weeks, but it will likely be longer, depending on the state of things during the first), they'll do another GI study, this time on the lower portion of his bowel, to make sure things have healed properly and he's ready to be 'put back together.' After this, they'll do his colostomy takedown, and reattach his intestines. Likely, during this trip to the OR, they'll also place his g-tube (a tube directly into his stomach to make supplemental feeds and giving meds easier once he's off the IV and og tube).
The plan is to get the first operation done as soon as the surgeon and urologist can get their schedules coordinated. They said it would possible be in the next few weeks, which is what we're hoping for. The sooner they can get things moving, the sooner Zeke can come home.
If they find during surgery that Zeke's peritoneum is unhealthy and too scarred, or there is too much scar tissue and adhesions basically 'sticking' his organs and stuff together, which most of the doctors think will be the case, they'll be unable to do PD and will have to keep him on hemo long-term. If he has to stay on hemo, they'll be able to transition him from 24-hour dialysis on the aquadex machine, over to the intermittent machine at around 6 kilos (about 13lb 4oz). This will likely require a larger dialysis catheter, as the catheter he has now wasn't made for dialysis, and that machine requires a higher blood flow. Smaller diameter = higher pressure, so this one probably won't work long-term.
During the meeting, they also discussed possible reasons he wasn't able to stay off the vent for more than a few days at a time. They had extubated him the day before (Sunday, 8/7), and were hoping he'd be able to stay off, but weren't sure he'd be able to. (He was re-intubated on Tuesday, 8/9.) They were concerned about the possibility of bronchomalacia or tracheo/laryngomalacia - basically floppy lungs or airways. Their theory is that the positive pressure from the vent keeps either his windpipe or his lungs open (whichever is 'floppy'), and even though he's on low oxygen settings while on the vent, once he's extubated he can't keep his airways open enough to oxygenate his body. Neonatal said he'd talk to pulmonology and ent about doing a scope to see whether either of these was a concern. There really isn't treatment for either condition, other than waiting for him to grow and his tissues to 'toughen up.' (Our almost 3-year old Ezra had laryngomalacia, and was on oxygen at night for a while because his airways would partially collapse while he was sleeping. Luckily, he outgrew it around 18 months). Because there is no treatment for the actual issue, they have to work around the problem, which most often consists of placing a trach (a tube directly into his airway through his neck that hooks to the vent, vs the tube in his mouth). This lets them have a more 'normal' life. They're planning to do the scopes tomorrow, and that's something they can do here at the bedside. We're praying everything looks good. Depending on the results of that, as well as his blood gasses, they're hoping to try to extubate again this week.
We're loving this new tunneled cuffed catheter! Dialysis has been going well, also. His pump changes have been uneventful and quick for the most part.
His weight has pretty consistently been around 4 kilos (just under 9lbs) for the past week or so.
On Friday, Zeke started running a fever. It wasn't high - beetween 100-101 - but any temp is enough to cause concern. They immediately started him on antibiotics and sent blood for cultures and a full cbc. The cultures came back positive for yeast, so they wanted to do a lumbar puncture to test his spinal fluid for meningitis. They immediately started him on an antifungal and decided to treat as if it were positive, but waited on the tap because they didn't want to cause problems with the dialysis lines. They finally did the lumbar puncture today, and said that it will likely take 48-72 hours to be sure nothing is growing. He hasn't run a fever since Friday, and seems to be happy, other than being a bit irritable. In order to do the LP, they had to take him off the heparin (which means off dialysis) for at least 30-45 minutes before, and 6 hours total, to try to prevent unnecessary bleeding. Of course, I took advantage of him being off the pump and held him for a little while.
Over the past week, they've made a few changes to his meds and feeds as well.
*He was on a lower dose of Fentanyl in his iv drip, and was able to get prn doses of Fentanyl. They didn't like that they couldn't really track how much he was getting, so they did away with the prn order, and just increased the amount in the drip. He's still on the Versed, as well. There was talk this week about trying to start methadone back again and wean some of the sedation, but then he got sick, and they decided to wait on that.
*They started fortifying his milk with a special renal formula, and reduced the amount he was getting in his feeds from 65ml/3hr to 50ml/3hr, and added back some iv nutrition (tpn) at 5ml/hr (which keeps his intake at 65ml/3hr), because some of his levels were fairly low. They also added extra supplements. He's getting sodium chloride, bicitra (citric acid),
*They started him on pulmocort aerosolized into his vent once a day to try to help strengthen his lungs.
He's been having good output from his colostomy, but with the fortifier in the milk, he's had a ton of gas and his belly has been pretty bloated. They've had to 'burp' his colostomy bag a ton to get the air out of it.
I've been able to swaddle him some this week, and it seems to help him calm down sometimes. He's still having issues with his temp, but they said that's normal with the cool blood from the dialysis going into him constantly.
He's been a lot more alert and aware since I've been back this week. He's looking at his mobile and tracking people more, and I've been working with him to try to reach for his mobile - I'll take his hands and hit the guys on the mobile, and then he'll try to do it some. Earlier tonight, he had both arms and both legs moving at the same time - it looked like he was trying to fly away.
The nurses have been able to move him into different positions, and PT/OT have started coming in to work with him some as well. We talked today about getting him a tortle, which is a little hat with either one or two padded tubes on it to help keep his head repositioned. They also want us to work on trying to move his head midline for about 30 seconds at a time several times a day. He's been trying to move his head to the right some on his own, if we put his mobile on that side, but after a while he just gets frustrated, so we move it back to where he's comfortable.
We were able to get him into his bouncer today for about an hour. He was not happy at first, but once he got used to it, he settled down and went to sleep until they came in to hook him back up to the dialysis.
He's had some hurdles, but has been able to overcome them, as usual. He's pretty amazing, and we're so thankful for him. He turned 4 months actual (7 weeks adjusted age) this past Wednesday, August 10th!

August 8
4100g (9lb .6oz)

August 8
Family meeting day

August 8
Family meeting day

August 12
4010g (8lb 13.5oz)

August 13
4060g (8lb 15.25oz)

August 13

August 13

August 14
4080g (9lbs)

4 month photo, a few days late.

August 14

Friday, August 5, 2016

August 5, 2016

Zeke has continued to do really well throughout the week. He did have to be reintubated the beginning of this week because his PH was going down and his CO2 was rising. He's done awesome on the ventilator since then and he's already back down to a pressure of 15/5, rate of 20, and 28% O2. They're already talking about extubating him again, probably the beginning of next week.
He hasn't had any issues with his feeds and is now up to 45 CCs every three hours. They're increasing the feeds by five every 12 hours so barring any issues he'll be up to a full feed (65 CCs) by Saturday.
The pump was been running amazingly well. The new catheter that they placed in his chest is awesome. He's been able to change positions all over the place without effecting the pressure in the pump. Most importantly, he hasn't had any bleeding since they placed it. This new flexibility has allowed them to start doing physical therapy to get his muscles working and try to loosen up his arms and neck since they've always been stuck on one side.
One of the nurses is fairly brave with her positioning of Zeke. He's been able to lay on his stomach for a while and she even got him sitting up in his boppy. He seems to like the new variety in positions.
This coming week we'll be having a meeting with all of the department leads to try and figure out what the next steps are going to be. We've been getting somewhat conflicting plans of attack going forward so it'll be easier to get all the different specialties together to talk about the plan for Zeke.


August 2
3940g (8lb 11oz)

August 2

August 3
4090g (9lb .25oz)

August 5
4070g (8lb 15.6oz)