Saturday, September 24, 2011

Lots of firsts..

This week has been filled with many more "firsts" for us.
  1. Tuesday- Sept 20- was our first day of dialysis training. The dialysis team has quickly become part of our family. After all they will be taking care of our son for the next few years, we have to keep them happy! They didn't ease us into the situation at all. There was no feeling out the waters or watching. We were thrown in full throttle. Well, at least I was. Jason got to watch. It's okay, though, because when he gets back from work in a few days, it's his turn. I have been training every day since Tuesday, though, and am happy to report that I've been getting A's everyday! Well, we don't technically get grades, but they've all said it.
  2. Wednesday-Sept 21- was Parker's first bottle ever! Yes, he has graduated from the NG tube to the bottle. He did great for his first time, too! He's still a tad bit confused on how it works, though. He does a lot of "rooting", which just means he shakes his head around looking for the nipple of the bottle and can't figure out how to latch onto it. He eventually figures it out, though. The downfall is that he wears himself out when he starts rooting and gets lazy 3/4 of the way through his bottle. He doesn't always finish, but we are working on this. 
  3. Thursday-Sept 22- I was allowed to start holding him. Daddy is jealous he wasn't here for this, but he will get plenty of time next week. So I have spent tons of time with him this week spoiling him rotten.
  4. Friday-Sept 23- Parker was taken off of the canula for good. He is now breathing all on his own and his SATS have stayed above 95. 
Parker is doing amazing now that he is able to be dialysized properly. His blood pressure is under control without medication. He is no longer "fluid overloaded". He is taking 55 cc's of milk every three hours, which is what the average baby his size would take. The nephrologists are working on getting the number of PD cycles down so that we can get to an overnight schedule instead of the 24 hours a day we are doing now. All of our medical supplies have been ordered and should be here this week. Everything is coming together and preparing for us to come home. We cannot wait!

    Tuesday, September 20, 2011

    Finally caught a break..

    The past week, since surgery, has been yet another rocky roller coaster. During surgery, the doctors had to remove Parker's first peritoneal dialysis catheter. This catheter was put in when we were at Ochsner, only a week after he was born. We had no problems with it before. It never leaked or anything, but it was right in the place that the surgeons would have to make the incision to remove the kidneys. So after the surgeons were done with the nephrectomy, they put another pd catheter in place. The problem was that the new pd cathether and his incision would have to heal; therefore, the pd catheter could not be used for a few days. So the doctors also put in a hemodialysis port during surgery. It felt like the were going to put holes all over my poor baby. :( I knew it was what was best for him, but at the same time, it's hard to accept.

    Many of you may not know the difference between peritoneal dialysis and hemodialysis. I do not claim to be an expert, but I will try to explain it in the simplest of terms. After all, this is how it was explained to me too. Peritoneal dialysis is what is generally done on babies as small as Parker. The doctors pump diasylate into his abdomen, let it sit for a while, the diasylate collects toxins, and then they drain it out. These cycles continue (at this point) all day. When we come home, we will have him on a set schedule. He will be hooked up to the dialysis machine at night while he is sleeping and it generally takes 8-12 hours to complete. Hemodialysis is quite a bit different. Parker's hemodialysis port is in his neck. The port is used for a period of two hours. During this time the dialysis team removes a large volume of blood from Parker. The blood runs through a machine that will filter all of the toxins out of it. Once the blood is clean of toxins, the machine pumps it back into Parker. Parker is so small that they couldn't remove enough blood from him to prime the machine. (This is why we have had to use blood from the blood bank. This, plus the blood transfusions that he required after surgery.) Hemodialysis is typically too stressful for babies Parker's size. Hopefully, now that you know what it is, you can see why.  His dialysis team, however, is amazing! This was only the second baby this small that they have hemodialysized and they were successful with both. I, personally, think they deserve an award just for that and so do others. The team was asked to publish a study based on the first baby that they hemodialysized. They were told it was impossible and that it had not been done. Well our team made it possible, but they refused to publish the study. They said that the patients privacy was more important.

    Friday--Two days after surgery, the surgeons told the dialysis team that they could try to start peritoneal dialysis (PD) again. Well, it was a little too soon. After about 3-4 cycles we noticed that there was a small amount of leakage coming from his incision. They stopped PD and told the nurses that they would continue on hemodialysis the following day. The nurses were given orders to stop Parker's blood pressure medicine, because hemodialysis makes his blood pressure drop. I mean think about it, they're removing a whole lot of blood. Makes sense, right?

    Well, the following day, guess who got his blood pressure medicine? Apparently, there was a lack of communication somewhere. The day nurse gave him his medicine like usual. When the dialysis team began the hemo process his blood pressure started falling and the dialysis team immediately stopped. So now we have gone two days with no dialysis. Parker's kidney levels (BUN and creatinine) are holding just fine. Dialysis is not emergent at this time, but poor thing is so poofy!

    Sunday, the hemodialysis went just as planned. He handled it like a trooper! Monday, however, Parker decided he had other plans. When the dialysis team tried hemo, his line was kinked. Nothing would flow out of it. So, they called us immediately and told us he would have to go back to surgery to replace his hemo port. We, of course, rushed to the hospital. When we got there, they had made a few changes to the plan. They were trying PD again, instead, to see if his incision and PD cath had healed. If we had complications with PD, then we would go to surgery to fix the hemo port. If PD went fine, then we would remove the hemo port. We are now 22 hours into PD and have had no complications. No leakage. The goal was to get 150 cc's of fluid removed by 2:00 p.m. today. When I spoke to his doctors at 8:30 this morning, they had ALREADY gotten 150 cc's removed and still had 6 hours left of treatment. The doctor said she would talk to the rest of the team and see about having his hemo port removed! This will be one less thing that he has holding him back.

    So, Parker is back to himself and proving his point, just like his mommy and daddy! Oh, and by the way he is spoiled rotten already. It's not just us who says this either. The whole team has said it. It is his way or no way! He puts them in their place quick! We will definitely have our hands full, but we can't wait! :)

    Thursday, September 15, 2011

    Children's Hospital

    On Monday September 12, 2011 we were moved from Ochsner Medical Center to Children's Hospital. Of course it seemed like we waited forever that day for the transfer to happen. Well, we really did wait forever. The two hospitals are only 10 minutes apart, so once the transport team from Children's got there, everything happened pretty quick. This was Parker's first experience outside and his first vehicle ride, ever. Two monumental moments in his life. Well, they are in my opinion at least. When we got to Children's we found out that, although he was in the NICU, he would have his own room. This is definitely a plus. He gets more privacy and we can close his doors so that the other babies and machines don't stress him out too badly. We spent the rest of the afternoon Monday meeting with doctors, nurses, the dialysis team, etc. It seemed like the train of people was never ending- and it still is!

    Tuesday morning started bright and early. His nephrology team called us when they were doing rounds, (pretty early) and we headed straight to the hospital. Throughout the day we continued to meet with doctor after doctor. We saw nephrology, urology, cardiology, respiratory, surgery, anesthesia, dialysis and so on and so on. You get the point. It has been a draining couple of days. The final decision was made late in the afternoon that we were going to surgery Wednesday morning and both kidneys were going to be taken out. Once that decision had been made we then had to meet with all of those doctors previously mentioned to sign consents. Personally, I think my signature might be worth something and they aren't telling me.

    Wednesday morning Parker was supposed to be taken back at 7:30 a.m. Well, we all know how that goes. Ten thirty rolled around and he was still in the NICU patiently waiting his turn. By 11:00 he was just getting to the O.R. and we were expecting him to be there about 6 hours. We waited around, signed some more consent forms, got some lunch, paced the floors, and read a few magazines. It felt like time was moving as slow as molasses. Then, around 2:00 the urologist came out and said both of Parker's kidneys were out and that he had done much better than they expected. It only took them 3 hours and he did not require any blood transfusions- yet. We still have our fingers crossed on this one. We will see how he does in the next few days. So, this doctors part was done. At this point, the general surgeons are still working on him and putting in his hemodialysis port. He told us that it should only take another 30 minutes before surgery was completely done. Well, once again we know how this works. Almost two hours later and we still haven't heard anything. I'm getting pretty nervous and I'm being fussed because my leg is shaking so fast I'm apparently "moving the whole chair".  It was true, but I couldn't do anything about it. They finally came and got us so that we could go back and see him. Fortunately, he was still back there for good reasons. He was extubated immediately after surgery, which was amazing! We were told that he would be on the ventilator for 2-3 days, so this is a huge step for him! Before surgery he was on 3 liters of oxygen at 30% and now he is on 1 liter of oxygen and it's room air! He has made huge strides and he's fresh out of surgery! Once we got back to the NICU,  his hemodialysis took about 2 hours, so once again we were in the waiting room pacing the floors. Our dialysis manager did let us go and see him in between. She's amazing! When we left him last tonight, he was breathing so much easier, he still hadn't had to be given morphine, and he was resting peacefully. We know today will be worse, because the anesthesia will wear off, but he's already doing so good!

    Thursday, September 8, 2011

    Roller coaster Ride

    I have decided that the best way to describe our NICU experience, so far, is to compare it to a roller coaster ride. Now, I'm certain that it is not this way for everyone, but for us and our condition, this is the perfect analogy. You see, the climb up the hill is when doctor's prepare you for things. For example, "We have decided to do surgery on Friday to remove one or both of your son's kidneys, but we wanted to prepare you." When you reach the top of the hill, you have accepted things and are ready to face them head on. We realized that even though surgery scared the daylights out of us, it would relieve him of the discomfort, get him stable, and get him home. Then, the descent downhill is when they completely change things up on you and throw a curve ball into the mix. For instance, "We have decided not to do surgery on Friday. Instead we will transport him to Children's Hospital on Monday and his team of nephrologists there will make a decision."

    Ultimately, this is for the best and we completely understand, but it is still so emotionally draining to continuously prepare yourself for things. Children's Hospital is where Parker's long-term team of doctor's will be. Ochsner was just a starting point for us and we knew this all along. Ochsner only has one nephrologist and in his words "That's not fair to Parker." He cannot be there at all times, which is what happened last week and we need continuous care. Now that Parker is stable and off of the vent, we were given the option of several very good doctor's in the area to choose from. Ultimately, we decide to stay with Dr. Aviles. He was the doctor at Children's that I met while I was pregnant and could have kissed for all of his positivity. I have complete faith in him and his team. So, since his team of doctor's will manage Parker's case long-term, it makes complete sense for them to be the one's to decide if and when Parker has surgery and the specifics. So first thing next week Parker will be transported to his new home away from home. The doctor's will let him get settled in and then evaluate his condition before making a definitive decision. I am overall happy with this. Surgery is irreversible after all.

    Wednesday, September 7, 2011

    Long awaited update

    I know that it has been quite a while since my last post and I do apologize. There were a few things that made me wait so long. The main one being that I wasn't feeling so hot. I let stress get the best of me and was extremely nauseated all weekend. No matter how well you think you can handle things, you don't always do that well. So I will pick up where I left off, just to give you an idea of what's been going on.

    Friday, Jason left around mid-morning to go home and take care of a few things. Let's be realistic, it would be nice if every day things could come to a halt when you're in the middle of something so serious, but they don't. Tropical storm Lee was on it's way and we had a few things to pick up. (we knew it wouldn't be anything too serious, but they were expecting a lot of rain and heavy winds) He had business to take care of with work.. Bills and mail to pick up, etc.

    Now, since Parker's delivery, the pediatric nephrologist had been out of town. When do you think he will come back and want to meet with us? Of course, it's the one time when Jason isn't with me. So, I go upstairs and meet with him and we talked for a long time about everything ARPKD means for Parker. Of course, this is the first time I meet this doctor, so he has yet to find out about my semi-OCD tendencies and all the research I've already done. The final conclusion of the meeting was that we would wait through the labor day weekend and see how Parker did. They would decide on Tuesday (yesterday) whether they were doing surgery or not. I am crushed and by myself! Here we are again talking about surgery. I thought we had left this hurdle in the dust last week, since all of his labs were doing so good, but apparently not.

    Saturday, the weather started to deteriorate and we were now going to be stuck in the hotel for a few days waiting it out. Jason says he now knows what it feels like to be put in an old folks home. He said he just hopes those people have a big window to look out of like we did.

    Between Saturday and now many things have changed. Parker had to be put on blood pressure medicine (we knew this was possible), a shot to produce red blood cells, and a stronger diasylate. He was able to be taken off of the vent, and he did very well with that. He was put on a comfort flow canula and he held his own. It made him really mad at first, but he eventually got over it.

    So, Tuesday comes around and the long awaited decision of surgery is made. On Friday September 9, he will have surgery. He will only be two weeks old, and my little man is already facing major surgery! I know it is what's best for him, but it still scares the daylights out of me. We do not know, yet, if they are taking out one or both of the kidneys. We will find out definitely tomorrow. There are several different doctors working as a team to make the decision that is best for Parker.

    After surgery, the main goal is to get Parker back off of the ventilator and onto a dialysis schedule. Yes, you read correctly. I did say "back off of the vent". He has to be reintubated for surgery. They do not expect it to take long for him to be taken off of it this time, since he's already been able to tolerate breathing without it before. Hopefully, 1-2 weeks after surgery we will be moved to Children's hospital, which is only 10 minutes away from ), where we can begin dialysis training. Once we begin dialysis training it should only be 3-4 weeks (fingers crossed) until we can bring the little man home.

    So at least now we have a plan of action and a long term goal. Please keep him in your prayers. The next week will be so tough for him.

    - Posted using BlogPress from my iPhone

    Friday, September 2, 2011

    In true "Kristen" fashion..

    So, in true "Kristen fashion", there is a storm in the gulf for labor day. You didn't think mother nature was going to let me get off easy this year, did you? Of course not. There are very few birthday's that she has let me enjoy without the threat of one, so by now I am used to it. At least this year it is a minor storm, but could it be going any slower? I mean 10-20 inches of rain is a tad bit ridiculous. I know that quite a few of you talked about coming visit us this weekend, but we ask that you please stay put and stay safe. We will see y'all again soon, don't worry. No need to put yourself in harms way.

    I know that I didn't update yesterday about Parker, but if you notice I did change the blog a little. I was starting to feel like it was a little drab, so I did some updating.

    Parker is doing great! Today is his one week birthday! His kidney labs are still coming back low. His BUN came down from 24 to 21. His creatinine went up from 1.2 to 1.3. His sodium is staying up and his potassium is staying low, which is important. His platelets are finally holding steady (they have been dropping a little each day). They had discussed another platelet transfusion for tomorrow, but the doctor said he is happy that they have been holding in the same range for a few days so he will hold off. He is tolerating dialysis well. They are doing 40 cc's and letting it dwell in his belly for 30 minutes. They are upping his diasylate from 2.5% to 4.25% in an attempt to drain more fluid from around his lungs. His ventilator settings are lower than they were pre-surgery and doctor Vic plans to ween them down at 12 again. He is now on continuous feeds of 5 cc's of milk every hour, which is more than the 3 cc's they began yesterday.  Dr. Vic is in the process of weening him off of the fluids that he was getting and using strictly milk. Like the doctor said, there is more substance and vitamins in the milk than there are in the fluid. So far they have removed well over 300 cc's of extra fluid from him and his dialysis port is holding up well. No leakage and no complications. His first surgery was a success! Parker's pediatric nephrologist should be back from vacation any day now, so we are anxiously awaiting our meeting with him. We believe that we will get much more info once he is here. Parker seems so much more comfortable overall. He is awake and looking around much more now. He has the funniest facial expressions and is even trying to smile every now and then. The vent makes it a little difficult, though. He already hates the camera. Every time you take one out he closes his eyes and the smiles come to a stop. Wonder who he takes after? lol

    Oh and we had more pee pee today! The doc always tells the nurse to save it and show us. He laughs because I always say if I could frame it that I would. (I truly mean that, too) My poor son would have a room full of framed diapers if it were up to me. Yes, I know that sounds a little creepy, but I get quite excited about this subject.