We just met with the surgeon and Stephen is out of surgery and doing great! The surgery was more difficult than expected, but all three hernias were fixed and the Mediport was successfully put in place. His breathing tube is out and we should be able to go back and see him shortly. Our little fighter did it again!!
So we are all settled into our room and getting ready for surgery tomorrow. They just drew some of Stephen's labs and did his IV, but he'll have some more labs later today. We lucked out and got the best room in the IMC (the intermediate unit that's between the PICU and the regular pediatric unit)! It's the biggest room with two sleep chairs. That means neither Bill or I have to sleep on the dreaded bench. It's pretty sad when you get excited over something like that. But the big bummer is that we have to move to the PICU (the pediatric ICU) tomorrow. Stephen will need to go to the PICU after surgery so they can properly manage his pain and manually do his dialysis. He'll be on very low fill volumes in order to let the stitches heal and doing it manually let's the doctors make changes at any point. But to put it bluntly, the PICU sucks. It's depressing, the rooms stink (some don't even have a bathroom at all and none of the rooms have showers), only one of us is allowed to stay overnight and there are no sleep chairs, just a bench, and we don't know any of the doctors or nurses. We've been in the IMC enough that we pretty much know all of the nurses, and they know Stephen. But hopefully we will only need to be there one night and then we can come back to our sweet room. Haha.
But really the most depressing thing of all is that we are back in the hospital period. We were packing up the car this morning and our neighbors assumed we were taking off for the beach. Nope. We should be heading to the beach, but instead we are stuck inside the confines of a hospital.
Stephen took a little nap this afternoon and Bill and I headed to our favorite snack place in the heart center for a cup of coffee, browse through the gift shop (someone loves candy), and to grab a few minutes of peace and sun in the healing garden; our favorite spot in the whole hospital. It's sad that I just wrote those words. That we have our "favorite places" to go to in a hospital. No one should know a hospital like the back of their hand unless they work in a hospital everyday. It just plain sucks and I would rather be anywhere but here right now. The only upside is that Stephen will hopefully never remember any of this or the pain he will be in following his surgery tomorrow.
Well the "big" day is right around the corner and I'm starting to get everything in order for us to be gone again for at least a week. The past hospitalizations have all been emergency admissions, so we were never prepared for any of our hospital stays. But since this is all scheduled, it's pretty nice being able to get stuff ready instead of running home for a few minutes to grab some clean undies and my glasses and running back to the hospital. Poor Billy, he's usually the one who has to run home first to get Stephen's dialysis machine and a few things for me. He tries so hard to get me the right stuff, but how can he really be expected to get me the right bra or underware when there are so many!? And when I was still breast-feeding, it was an even bigger challenge for the poor guy! So this time, I can actually pack up all the right stuff for Stephen and myself and make sure we have all of the necessities and Stephen's favorite toys.
The other thing I've been able to do is clean the house, pay the bills, and clean out the fridge. My parents always come and stay at my house when Stephen's in the hospital and it's always such a disaster! Especially since we leave the house in such a panicked rush. So they've always cleaned the house for us and stocked the fridge with groceries. But this time, I can make sure it's clean and not a disgusting mess. I can't make any promises on groceries (since I don't know when we'll get home), but I did just make a big batch of chocolate chip cookies so hopefully that will do!
Hopefully I'm just overreacting and we'll be home before the weekend is over. It certainly would be nice to be home for the 4th of July and Stephen's six month birthday! Can you believe he's going to be 6 months old!?!?!?
Here are a few pics I snapped this week. We like play "Where's Waldo" when Mabel snicks her nose in the pictures. She always needs to be in the mix, but I wouldn't have it any other way!
In the past two weeks, the Wubanub pacifiers (it's a soothe paci attached to a little stuffed animal) have become Stephen's favorite toy. I bought them for him when he was in the NICU, but it wasn't until recently that he's really been able to hold onto them and pick them up and put them in his mouth. Those paci's will keep him occupied for a good 45 minutes! So they now go everywhere with us!
Stephen's hernia and Mediport surgery is officially scheduled for June 30th. We met with Stephen's surgeon, Dr. Kim, on Monday to go over everything once more and sign off on the consent for surgery. I know it's necessary for him to get his hernia's replaced and for him to get some sort of port for IVs and lab draws, but the reality of him having surgery is now making me have second thoughts. One part of my brain knows that once the hernias are fixed and we have a good way of drawing labs, his dialysis will work better and the doctors will have a better understanding as to what is going on with his electrolytes, his albumin, and his IGG. And that will prevent things like his seizures and from his potassium from getting too high and affecting his heart. But the other side of my brain is thinking that I'm putting him through surgery when it's not completely and 100% necessary (it is necessary, but I feel like we could maybe put it off a little bit longer). I'm just in total conflict with myself.
I guess it's because before he needed surgery to save his life. He would not have survived had we not removed his kidneys. But he's surviving and doing great....right now. We know and we've seen that change in an instant, but he's doing so great this week. What if he goes into surgery and doesn't come out of it? Or say something goes wrong and he collapses a lung or can't come off the ventilator? Or he gets this Mediport and then gets a massive infection or blood clot that goes to his heart? I'll forever blame myself because I'm the one that pushed the Mediport so hard because I'm the one who always has to take him to the hospital for labs. And it's torture! For me and for Stephen.
I just hope that we're making the right decision and say a little prayer that Dr. Kim and the anesthesiologists are on their A++++++ game next Thursday.
We will be admitted to the hospital next Wednesday morning to prepare for surgery and then will probably be there another 5-7 days afterwards until Stephen's been weened off the painkillers and is dialysis is back to 12 hours from 24 hours. Unfortunately, we will be in the hospital for Stephen's 6 month birthday on July 4th. Boooooo!!!
As soon as I'm not feeling like death, I promise to get a Father's Day post up. But right now it's nap time in the Schwartz house, Billy and Stephen are asleep as I type, so I'm going to try to catch some zzzzz's too. But Happy Father's day to all the great Dad's out there. Especially to mine and the father of my little angel. Love you!
Sorry it's been a few days since I posted last. It's taken some time to adjust to our new routine, but we're getting there. Our feeding and medicine routine has become a bit overwhelming and I feel like I don't get anything accomplished because I'm constantly trying to get Stephen to eat, then putting his formula into his g-tube and administering medicines. By the time I finish that and get everything all cleaned up, it's practically time to start all over again. The biggest problem is that Stephen isn't eating well now. He's only drinking about 20 out of the 95 ml's of formula he needs (every three hours), so I'm having to either hook up his feeding pump or gravity feed the rest of the bottle by hand each time. It's not a huge deal, except I'm getting a bit concerned that he might have an aversion to either the new formula or an aversion to taking things by mouth. If it's the latter of the two, we could potentially have a big problem. So the doctors are going to have to figure something out to get him eating again. And we're now back to seeing the nephrologists every week. Oh and did I mention Stephen has terrible diaper rash again? Yep, he does. So I'm trying to wash his bum at each diaper change to prevent him from getting any kind of bacteria in the open sores. And...we now have to take an extra blood pressure reading at midnight when I hook up his feeding bag. As if I don't already have enough to do. But since Stephen doesn't sleep, I guess the blood pressure reading isn't that big a deal. Ugh.
We also met this week, for the first time since the NICU, with Stephen's GI and liver doctor. His liver enzymes and labs are good, but his liver is getting bigger and it's shown on the ultrasound that both the big and little liver bile ducts are having issues (I think that's he was saying). Unfortunately, I haven't been able to really fully grasp all the liver issues. The first time the doctor explained all of this to me it was over the phone in the hospital and this time while he was explaining it to me in the office, Stephen was actually throwing up from him pushing on his stomach so much. So both times, I had a difficult time concentration on what he was saying. Plus I also think my brain is just so jam packed with so much other medical stuff, the liver stuff just isn't sinking in. The bottom line is that we're now on a medication to help prevent colingitis (an infection of the liver), which is something Stephen will probably inevitably get, he definitely has Caroli's disease, and right now he doesn't need a liver transplant, but that's not to say that he won't eventually need one. Hopefully, he won't need a transplant, but maybe just a shunt to help blood flow through the liver. So the plan is to get the kidney transplant ASAP and then deal with any liver issues later down the line.
I haven't really mentioned this yet, but we're also seeing Dr. Kim, Stephen's surgeon on Monday. It's time to get his hernias fixed. The nephrologists have had to back off on Stephen's dialysis volume to prevent the hernia's from getting stuck down in his scrotum. So his dialysis isn't as efficient as it should be. So once the hernia's are fixed and healed, hopefully that will help improve the performance of his dialysis and maybe also make him more comfortable. Who knows? And since he's going to be under anesthesia, we've also decided to get Stephen a mediport. Labs are a nightmare for us. You all know that by now. And having accurate labs are crucial now. No more messing around with it. So he'll have a little port under his skin (nothing will be external) that the nurses can access to draw his labs and administer some of his IV medications. There is some risks of course with the surgery and with potential infections and clotting, but the risk of not knowing what is actually happening with Stephen's electrolytes and labs we think is greater.
If anyone has any experience with mediports, I'd love to hear your opinions. Good or bad. Trust me, I've had some bad already, so you won't offend me. And we trust Dr. Kim with Stephen's life and know that Dr. Kim would never do something that would risk Stephen's life. But we'll know more after our meeting on Monday.
Oh and did I mention I some how caught a sinus infection/head cold? Yeah, not cool. Let's just hope Stephen doesn't catch any of my nasty germs. Right now he's out for a walk with Dad.
We are finally home! We were discharged from the hospital around 4 pm yesterday afternoon, picked up Mabel from Bill's parents and headed home. And boy was it nice to be home! All four of us sleep great last night in our own beds for the first time a while, but had busy days today. Stephen and I had to get used to a fairly new routine today with more meds, more feeds, and more steps in our day (extra blood pressure readings, weight, and more steps to take in setting up dialysis), but he took an awesome afternoon nap in his crib and went to bed before 8 pm tonight; a new record. And I spent a good deal of time on the phone making follow-up doctor visits, talking with insurance and trying to get nursing for Stephen. Bill had a crazy day at work playing catch-up for being out of the office for three days straight and didn't get home until 10 pm. But we couldn't be happier to be home and hopefully we won't have any more of those "open ended" hospital stays in our future.
As you may or may not have guessed, we are still in the stinkin' hospital. We thought for sure we would be discharged today since the MRI came back yesterday without any signs for concern, and Stephen's labs yesterday morning were good. But as the night progressed last night, his blood pressure kept dropping throughout the night. They gave him two saline IVs which helped, but it's still disconcerting why his pressures are dropping while he's on dialysis. So here we sit...still.
Tonight they will try him on a new blood pressure medication to help raise his blood pressure while he's on dialysis and they started him on another new medication to help with some of the other values that were a little out of whack in his labs from this morning.
And then yesterday I asked one of the resident doctors if his IGG had been checked and it hadn't. So they also checked his immuno globulin's this morning and low and behold that was so low it was off the charts. So tomorrow morning they will give him an IGG IV to help boost his immune system. In the past these IV drips, which take hours, have also sent Stephen's blood pressure plummeting, so we don't anticipate on getting out of "jail" until Monday. Another freaking week spent in the hospital.
I think this next week we will need to have a frank discussion with his nephrologists on ensuring his electrolytes are kept in balance going forward. Since that was the root cause of these seizures and what sent us here in the first place. And they were the ones who discharged us last Saturday before they got his electrolytes back in check. Not cool.
Here are a few pictures of our brave little guy as we wait to go down for his MRI at 2 pm. The poor guy can't eat for 8 hours before the procedure because he is sedated during the MRI, so he's been a pretty unhappy camper so far this morning. Hopefully he'll fall asleep soon and stay asleep until it's time to go.
He's been such a trooper this time around! And it definitely helps that his IV is in his ankle/foot this time so he can use those hands to hold his pacifier and play with his toys.
More seizures last night (one lasting about 20 minutes), potassium is too high, and sodium is too low so they can't do his MRI today. Doctors are working on getting everything "fixed" so he can get his MRI and EEG but who knows when we'll be home or when this "episode" will end.
At this point he's been poked and prodded so much for labs and by doctors we just want to take the poor little guy home.
We're back at the hospital following seizure #2. Around 8 pm, Stephen had his second seizure as I was setting up his dialysis machine for the night. He was napping in his swing in the living room as I was getting some things prepped for dinner and setting up his machine. I went to go start waking him up and noticed his eyes were wide open again, staring at the wall and his arms were twitching. This one wasn't nearly as bad as the one the other night, but it was clear he was having a seizure, I quickly grabbed our little Flip camera to try to videotape the seizure. It's something the neurologist suggested on Saturday. I had pretty much laughed at him when he mentioned that because I thought how the he'll am I going to tape his sissies when I'll be freaking out that he's having a seizure! But thankfully the camera was nearby, so I got some video.
I called Bill to tell him and we debated about whether or not I should call 911 or drive him myself. Since the seizure ended within a few minutes, I threw Stephen in his car seat, grabbed a few items, and flew down the beltway to the hospital. Thankfully it wasn't rush hour, so I made it there super fast.
Right now we are still in the ER waiting to be transferred up to his room. Hopefully this time they will keep us here until he gets his EEG and MRI. He's already had an EKG while here in the ER and thankfully that came back fine (his potassium levels were high). Stephens and I had such a great day today while my sister was here visiting from PA, that it's really a bummer the day had to end this way.
I'll just cut right to the chase; Stephen had a seizure in the middle of Friday night/Saturday morning. And it was definitely the scariest moment since he was born to date.
Around 12:40 AM Saturday morning I heard Stephen making some gasping noises on the monitor. Thank god I was still awake because it wasn't very loud. It was a similiar sound he makes when he laughs, so at first I didn't think much of it and I could see on the monitor that his left hand was shaking under his swaddle blanket. I also didn't think much of it because he's always fighting to get out of his swaddle. But thank god I went to check on him anyway because his legs were also shaking and his eyes were wide open staring at the wall. I couldn't get him to look at me, so I immediately got Bill up and we unswaddled him. Bill picked him up and tried to get him to "snap out of it" but couldn't. It was then that we really realized that Stephen was having a seizure and his face started twitching.
We didn't know what to do and thought about calling the doctors, but decided to call 911. I have never before had to call 911 and was scared to death. As soon as I started speaking to the dispatcher, I totally lost it and admittedly got a little hysterical on the phone. Thankfully the dispatcher was very kind and worked at calming me down and gave us instructions on what to do with Stephen. And then as soon as I heard the ambulance sirens, I panicked again. What I didn't know about 911 before, is that they actually make you stay on the phone until you make eye contact with EMS, so Bill ran down the street to meet them and show them how to find our condo.
The EMTs and the fire department were here within minutes and immediately swarmed into Stephens room. I think there were like 9 guys in his little room evaluating him while I frantically tried to figure out how to detach him from dialysis. Within a minute or two of the EMTs arriving, Stephen stopped seizing and they swept him up and into the ambulance. I rode along with Stephen in the ambulance while Bill followed behind. Actually Bill followed in front since he made it to the ER before the ambulance! Which was pretty crazy considering we rode the whole way with sirens and lights.
In the ER, Stephen had a CT scan which didn't show any signs of brain trauma and we were admitted overnight for observation. It wasn't until about 5 AM that they finally got us up to his room and we were all beyond exhausted.
On Saturday we had a consult with neurology which left more questions than answers as to why he had a seizure, so we need to get an MRI and an EGG to try to answer those questions. Luckily, we can go those tests as an outpatient (we actually will probably go to Children's National Hospital downtown for the tests), so we were discharged from the hospital late last night. All in all we spent about 19 hours in the hospital and slept about two hours since Thursday night. Hopefully Stephen will get his MRI this week and they'll find it was a one-time thing and we can put this whole episode behind us.
Now all three of us are working on catching up on our sleep and trying to get back on our normal schedule. It has certainly been one heck of a long and stressful weekend.