Tuesday, October 29, 2013

No more double diapers!

So we met the best doctor in the world today. Honestly, if every doctor would take notes from him, the world would be a better place. When he walked in, he addressed Parker first. He made Parker feel comfortable with him before addressing us. That's really important to us! You're not here to see us, so you don't need to come in and go straight to firm handshakes and cold introductions. He took one look at Parker and said, "he looks good to me, so what are we doing in here?" We were in one of their urodynamic study rooms. So we explained that Parker was post transplant and that his bladder had never been used. His reaction to that was "oh, we don't need video studies! That's overkill. Take that catheter out and let that boy pee! He will do just fine on his own!"

 Can I get an Amen!? He will do ultra sounds and check ups regularly just to make sure that his bladder is stretching appropriately, and that urine isn't backing up into the kidney. But, the Foley catheter is officially out! He also went ahead and scheduled the stent removal. It's a minor, short outpatient surgery. He said it usually takes about 20 minutes, but Parker will be put under. He asked when Parker's last nephrology appointment was scheduled for, so I told him it was November 21st, and he immediately said "Oh well we have to get this stent out before that so we can get you guys home for Thanksgiving!". So stent removal is scheduled for November 18th. We do our first ultrasound Monday to check on his bladder, so say a few prayers! 

He's so big! 

He found the stickers! 

Monday, October 28, 2013

Our first appointment

Today we went in for an appointment and actually came home after. Everything looked great as far as labs. Parker's creatinine, which measures kidney function, is still 0.1, which is the best it can be. Super kidney is kicking butt and taking names! He's now only on 6 medicines, which is a lot less than before. He's still taking all of them by mouth, and he's even trying some new foods. He doesn't take any bites, but he walks around nibbling and slobbering on things. So far he really likes cookies and chips. Go figure, huh? 

He is such a huge ball of energy now. We have a hard time keeping him still for feeds and diaper changes. He is constantly running all over the place. 

As far as city life, it is pretty cold up here. We had to go shopping for some true winter clothes. It doesn't get cold like this back at home often so we didn't have much to bring with us, especially Parker. We get out for a little while every day for fresh air, but try not to keep Parker outside for long periods of time. 

Tomorrow we go to the hospital to see urology, and hopefully they can take this foley catheter out. It's a potential source of infection and a pain in the butt when changing his diaper. They are also going to schedule his stint removal. Right now he has a stint placed in his ureter to keep it from collapsing. Since his "plumbing" had never been used, it was a little shriveled. He should be able to have it out by six weeks post surgery.

Right now our last appointment here in Philadelphia is on November 21st. If all goes as planned, and we don't have any more hiccups- knock on wood- we could be home by December 1st!

Thursday, October 24, 2013

Freedom... Again.

Well we are fee from the hospital again. The doctors are all in agreement that Parker most likely picked up a virus before we left the hospital the first time. He is now fever free and acting like himself again. We got a couple days of strong antibiotics to protect him, just incase it was bacterial, but all the tests were negative. Needless to say, we are all enjoying ourselves. Jason and I got our first home cooked meal in over two weeks, and Parker has his freedom to roam and his toys back. We don't go back for clinic until Monday. Tuesday we see urology to have a few tests done and see if we can take this Foley catheter out. Say a prayer that we can, because this is just another source of potential infection, and a pain in our behind during diaper changes. In the meantime, we are going to try and enjoy our weekend! 

Helping mom deflate the air mattress.

Reading my book.

Snuggle in mommy's lap.

He thinks he is so grown. 

The best home cooked meal, ever! What's sad is this was cheaper than a pizza delivered to the hospital! 

Tuesday, October 22, 2013

Not so smooth sailing..

Last night was wonderful! It was our first night back at the apartment, and we all enjoyed it. Parker slept through the night with no fussing or interruptions. But, a little while after we woke up this morning, Parker felt really warm. Jason and I both probably took his temperature 20 times each, and it was coming in over 101 each time. Finally, we called the nephrology department and let them know what was going on. They wanted us to come in just to get a urine culture, so we did. Next thing you know we are going to the ER to be admitted, getting blood work, and starting IV antibiotics. So far everything looks fine. His urine WBC came back low, so they don't think it is a UTI. His labs look great, and his creatinine is still 0.1. We took a blood culture, which should be back in 24 hours. Just like anything else, though, Parker's fever broke on the way to the hospital, and has not spiked again since we've been here at 11:30 this morning. We are all hoping that this is nothing, but all agree that it's better safe than sorry. With him being less than two weeks post-transplant, his immune system is pretty suppressed, so we would rather rule everything out, and being treating with antibiotics just in case. So we are hanging out at the hospital again for the next couple days.

Apparently someone forgot to tell him that he is sick, though! 

Monday, October 21, 2013

We have escaped!

We were finally discharged from the hospital today. We waited around most of the day, because we had some insurance issues with one of our medicines. The tacrolimus- his most important anti-rejection medicine- costs over $1,000 so the pharmacy had to have all sorts of paperwork from the insurance company to fill it out. Around 5:30, the nurse finally came in with discharge papers. Jason and I had flashbacks of when we brought Parker home from the NICU. We both felt like we had to rush him out of there before they stopped us and made us stay! We got back to the apartment pretty late this afternoon, and have been unpacking and getting medicine and food ready. My big guy, however, has been non stop playing and running around. I swear this kid acts like nothing ever happened. 

Sunday, October 20, 2013

Don't blink..

It is pure craziness how much can change in the course of two weeks. Okay, not even two weeks. 

Two weeks ago I was hooking my son up to a dialysis machine before bed. Tonight, I am changing pee pee diapers for the first time. He still has a catheter in place until at least Thursday, but we were able to lose all of the bulky tubes and drain bags that went along with it. Now his catheter drains into a diaper, that is inside of two other diapers, and a maxi pad. What can I say, I am OCD, and had to make sure the catheter stayed away from poop. I am pretty sure it is safe! A little bulky, but safe.

Two weeks ago, had you tried putting a syringe-no if you would have tried putting anything- near Parker's mouth, you would have been met with the godfather of all tantrums! You would have needed an army of people, or shackles and chains to hold him down. Today my son took medicine by mouth 11 times and did his mouth swabs four times. I never could have imagined him doing this! We use these swabs to coat his mouth with antibiotics to prevent thrush.

Two weeks ago my child had a weird anxiety about stuffed animals. I never knew exactly what happened. All of a sudden, one day he was petrified of them. I never questioned it, I just kept them away from him. Tonight, like the last few nights, he is snuggling with his teddy.

Last week, had a nurse come in trying to get vitals, all hell would have broke loose. It would have taken the nurse, Jason, and I, just to get the job done. Tonight, I proudly watched as my son never even blinked an eye. He wasn't even phased by the fact that she walked in, much less that she was touching him. 

 I feel like my "baby" is gone- physically and behaviorally. While I know he had to grow up, and it's in the best way possible, part of me is sad. I handed them my baby, and in return they gave me a healthy little man! How do you ever repay that? 

Friday, October 18, 2013

Mr. and Mrs. Popularity..

Jason and I were pretty popular today. It seemed like a never ending parade of people coming in and out of the room all day long. 

First, we had a representative from Apria Healthcare come by. She is a godsend, and if I didn't tell her that one hundred times, I didn't tell her once. Our home medical supply in New Orleans that was in charge of supplying his feeding essentials, couldn't supply everything that we needed. They couldn't give us the actual feeding tubes, the tape needed to secure it, or the new technology to make sure the tube was fixed in the correct place. We were having to get creative with how we got our feeding tubes. Not to mention, the tubes didn't have measurements on them, so that you could tell how far into his belly you were. Therefore, in order to check the placement of the tube, we were having to use a stethoscope, which is apparently dinosaur technology. Here, their tubes have number markings, and I know that his tube needs to be between 32-33. They also use PH strips to test placement. If the PH of his residual is less than 5, it's in the right place. So I was mentioning to the nurse how impressed I was, and that I only wished we had this technology, and the next day our CHOP case manager called to tell me she was arranging that we switch medical supply companies. Today I got a phone call from Apria, and by 1:00 she was here with everything. She gave us everything we need to go home with for a five day supply, and she will be contacted by the case manager when we discharge. When they contact her, she will ship out a months supply automatically. I literally had to do nothing! It was absolutely amazing! Plus, she brought us a backpack for our feeding pump, which our current provider did not do. I had to purchase one out of pocket for $175. 

After she left, we got to meet with our transplant pharmacist. This is something that our local hospital didn't have. Well at least we never met with one. We originally met with Krisha during evaluations, and she gave us the big picture. Today, she went over our complete med schedule, including dosages and side effects. She set up our account on an app called MyMedSchedule, which will really help. Plus, she gave us a list of do's and don'ts for over the counter medication. 

Next on the agenda was our nutritionist. We went over the feeding plan, which will be SO much easier than before. Pre-transplant we had three different powders that we would mix together with water. It was quite the concoction with 10 scoops of this and 1 cup of that, plus 2 tbs of the other- it was craziness! Now, all we do is mix four "juice boxes" with 280 ml of water, and tada you are done. I love simplicity. The plan is for him to have three big boluses during the day of 240 ml's, and then run continuous feeds over night. It's really not too much different than we were doing before, and whatever it takes to make our super kidney happy is what will happen. 

In between all of that, we had transplant coordinators trying to get insurance and pharmacy paperwork done. There was insurance trying to get information for case management. There were doctors, residents, fellows, nurses, CNA's, and anyone else under the sun coming in and out. 

The good news is that all of this is being done, because Parker will be ready for discharge in the next few days. We are still trying to get his Tac level right. It was still a tad low today in the 6's, and it needs to be between 8-10, so we are going up on his dosage a smidge. His c-diff pain is under control, but his bottom is completely raw. He is still having a lot of dirty diapers in one day, but the good news is that there is a lot less in each diaper. Unfortunately, because of the c-diff, now we are being sent home with a Foley catheter and a drain bag. Before, they were going to let us discharge without the drain bag, and double diaper, but now there is a high risk for infection if we do that. Hopefully, we can remove both the catheter and drain bag by the end of next week! 

Some of the best news is that my big guy is taking ALL of his medicine by mouth, which is a huge deal for him! We are so proud of him! 

Looks like winter is on it's way up here. That means we all need coats and winter clothes. :( 

Post transplant... By Patty Martin 10/18/13

Ok... So I know most of you have read the little updates.  But here's the doozy!   Post transplant.... I have been (still am) in a lot of pain since I woke up in recovery!  This has been by far one of the most painful surgeries of my life!  (second only to removing the tonsils after age 40). Some, I expected.. Some not so much.  The one thing they warned me about was the exhaustion.... And man they weren't kidding.  I have slept more in this past week than I thought possible.  Now... The big question.... Would I go through it again knowing what I know now?? Absolutely!!  Without a doubt, I would do it again tomorrow.  Especially after my long visit with the Porche's yesterday.  Parker is having his "little hiccups" as I call them.  But to see the color in his cheeks and see pictures like yesterday with the ear to ear smiles... It was alllll worth it!  Seeing his progress, just gives me all the more peace in my soul. I know I made the right decision in giving such a special gift!  I will bounce back from this... I have no doubt!  It's just been a little slower road to recovery than I'm used to.  I mean really... Anyone who knows me... Knows I don't like to sit still for long... I'm used to doing for myself by this time post surgery... Not this round. I am truly blessed to have Mom up here with me taking such great care of me.  But,  there's no place like home!  I go to the Dr. on Monday for my post op check up.  If all goes well,  we will be home by next Friday... Which is not soon enough in my book.  

I want to say "thank you" to each and every one of you for your prayers, love and support.  Without all of you... All of us here would have gone insane by now. I LOVE YOU ALL!  I have also been blessed with an amazing family and awesome friends!!  
These are my incisions.  Worth every ounce of pain. 

Especially for this:

Thursday, October 17, 2013

Too good to be true..

For the last few days, I have been cautiously optimistic. The saying "too good to be true" kept playing over and over in my head. I kept trying to push it back, but I knew that things were going so good, that the only thing it could possibly do was take a turn for the worse. Tonight we found out that Parker's diarrhea problems were not related to the anti-rejection medicine, Cellcelpt, like we originally thought. They took a stool sample, and he tested positive for C-Diff. This is a highly contagious bacteria that usually occurs when someone is on antibiotics. Parker will have to be on Bactrim for a year post surgery, and we are already fighting this. I am really nervous about this. His poor bottom is completely torn up already.

So the doctors have started him on a stronger antibiotic called Flagyl, and put him on isolation. I've been wiping down everything in the room with antibacterial wipes, and have changed all the bedding, and his clothes. We are consulting Infectious Disease tomorrow, and asking the doctors about using a probiotic to help reproduce good bacteria in his belly. I know that this can be extremely difficult to get rid of, so we are trying to be as proactive as can be.

We are both pretty deflated at the moment, so the mood in the room is kind of somber. We hate that he has to go through all of this. Everything was going so well until the evil c-diff arrived! :(

We did get a few smiles from him today even though he isn't feeling good.

One week post transplant!

We are now officially one week post transplant. Although, there are times that it feels like time is barely moving, I feel like this week has flown by. No one could have ever made me believe then that he would be doing this good now. His Tylenol is no longer given round the clock. Now, it is being given PRN- or as needed. His urine output is much better today after the IV fluids, so we are sure that he was just dehydrated. The two doses of lasix may have been a bit too much.

Today's plan includes three major changes. First, we are going to start condensing his feeds into more of a home regimen. He will get continuous feeds overnight, and then three boluses during the day, which is doable for us. We are going to slowly start introducing this into his schedule, just to make sure he is tolerating it. Second, we are changing one of his anti-rejection medicines, because we are positive that it is causing excessive diarrhea. Yesterday, Parker had 12 diarrhea diapers in 24 hours, and his poor heinie started to break. The doctors think that by changing him from cellcept to imuran for a little while that this should clear up. Just to be sure, though, they are running stool cultures to rule out anything infectious or viral. Lastly, we are planning to remove the drain bag from his foley catheter. This has been a source of pain and annoyance for him for several days. We have all tried different ways to be able to secure his catheter so that it isn't tugging or pulling, causing pain or irritation. For two nights now, this has been an issue. He squirms too much for us to be able to control it. Eventually, he squirms to the point where the catheter is no longer secured on his leg, and is pulling very tight on his private areas. Everything that we have tried has failed. We have had some pretty sleepless nights because of it. Once we get rid of the drain tube and bag, he will be double diapered and that will allow him to move around a lot more.

Other than these three changes, the only thing that we are waiting on is to get his tac level back this afternoon to see how his prograf levels are doing. It won't be extremely accurate since they held his dose last night, but we are hoping that it can help us adjust his daily dose to where we need it.

This did not last long, but he is so darn cute! 

Wednesday, October 16, 2013

Working out a few small issues..

So, yesterday we did two rounds of lasix to help pull off some of the excess fluid that was in his belly. He was weighing a few pounds more than he should have, and his belly was really distended, so this was necessary. When we woke up this morning, the first thing that we noticed was that Parker's urine output had slowed significantly and that his urine was really dark. Those are not good things for a patient with a brand "new" kidney, so they called in the renal team to take a look. His blood pressures were a little low, his eyes were sunken in, his urine was very dark. Basically, we took off too much fluid and he was now dehydrated. The doctors gave him a few boluses of IV fluid and added some free water to his formula and things have started to perk up a bit. We also did an ultrasound of the kidney, just to make sure that urine wasn't backing up into the kidney. This was a pretty amazing experience for us. This was the first time that we have gotten to see our baby with a healthy kidney!

The morning got off to a pretty rough start with our nurse. Parker's Prograf- which is an anti-rejection medicine- has to be given at very specific times- 8 a.m. and 8 p.m. Before the medicine can be given in the morning, they have to draw blood for a tac level. This will tell us exactly what his Prograf level is so that we can make adjustments accordingly. This morning, however, it was 9:15 and the his tac level still had not been drawn. So, his medicine is now an hour and a half LATE! You know that this was not a pretty situation, because now I am pissed! The nurse was pretty much trembling in her shoes after I said what I had to say. So around 9:30 his kidney team came by to round, and the nurse was just giving him his medicine. Of course, I make sure that they are well aware of this, so that they can also handle the situation. They began questioning her as to why it was so late, and poor girl was literally shaking. She didn't have a good excuse, other than she was rounding other patients, and they had a hard time with Parker's heel stick. The doctor's weren't accepting it, though. Needless to say, the doctor laid into her when she left the room as well. I don't think that anyone will have that problem with her again. I'm sure she will be in the room at 8:00 a.m. sharp!

The only other issue that we are having is actually his tac level. Yesterday it was in the range of 5.4 and we are looking for a range of 8-10, so they gave him a "supplemental dose" yesterday, just to give it a boost. Today, however, his tac level was over 12. So tonight we are holding his Prograf, and making changes accordingly in the morning. This is going to be a trial and error situation for a little while. This is why we have to be in clinic twice a week for six weeks once we are discharged.

Once his hydration and tac levels are controlled, and he is on a home feeding schedule, we are ready to talk discharge. He is doing amazing for only being six days post surgery. The only pain medicine that he is on is Tylenol around the clock. His incision looks beautiful. There isn't any more drainage, and it is healing pretty nicely.We are planning on going home with the catheter, but have an appointment to meet with urology two weeks from the day of surgery, so sometime late next week.

We are pleased with his progress. Other than the dehydration, the issues that we are having are minor and to be expected.

This was his urine this morning. Not enough of it, and way too dark! 

This was our outing to go to the ultrasound department.

Waiting for our ultrasound

 This is our beautiful new kidney! 

Cruising the hallways, waiting on the elevator.

He is sitting up for small periods of time now. 

This is his incision which gets really close to some private areas as you can see. It looks great for six days post surgery, though. No redness or swelling.

Tuesday, October 15, 2013

Snuggle time!

Guess who made a trip out of bed tonight to get snuggles! That's right, my big guy did! Just excuse us, a week in the hospital makes you look scruffy.

A much better day today..

My favorite thing about this hospital is the way that they keep you included in everything. When they make rounds, there are 6-7 doctors all out in the hallway with their computer stands. Before they even begin, one of them comes into the room and invites you to join them. They actually involve you in the conversation by asking you questions, and welcoming your feedback. In their eyes, as a parent, you know more about this child than they do- which is true. This is new for me. I've experienced some doctors that when I offer feedback, have told me that I don't have a medical license, so I don't know what I'm talking about. Those encounters infuriated me. Yes, you are right when you say I don't have a medical license, but I can guarantee you that I know this child 1,000,000 times better than you ever will. I wish that all hospitals would take this protocol into consideration.

During today's rounds we discussed how well Parker was doing. His electrolytes, such as Potassium and Phosphorous, look way better this morning. His Potassium is now 3.7 and his Phosphorous is hanging in at 4.0 This is much better than the mid 1-2's we have been getting back the last few days. His platelet count came up from 67 to 146, which is a huge relief. They were monitoring this, and if it would have gotten too low, they would have considered a transfusion. Also, his white blood count came up from 3.5 to 9.4, which is really good for him. The lower his white blood count is, the more susceptible he is to infection. Lastly, his test for EBV came back negative, which is a good thing. This is one of those viruses that we will have to test for frequently, because they can be dangerous in transplant patients.

 His pain management is pretty well under control, so the pain team took him off of the continuous dilaudid drip yesterday around 11:15 and since then has only needed three rescue doses at 1:45, 6:45, and midnight. It is now almost 2 p.m. and he hasn't had another dose, yet. So, we are now 14 hours with no pain medication, which is pretty darn good for five days post surgery. They have him on Tylenol round the clock, and that seems to be doing well. They are planning to change the pain plan for rescues as well. They are going to leave the option for IV dilaudid rescues for extremely severe pain, but are planning to change the general rescue doses to oral oxycodone, which isn't nearly as strong.

One of the big concerns yesterday was the drainage coming from the incision site. Every time that they change the gauze out on the incision, they have to weigh it to measure how many ml's of fluid is in the gauze. Yesterday, one gauze change was getting over 120 ml's, and there were quite a few dressing changes. Over night last night, the gauze only had to be changed once, and there was only 20 ml's of drainage on it. So far this morning, the dressing looks great, not saturated at all, so hopefully the drainage issue may be coming under control.

His feeds are almost at full capacity. The fluid goal for him now that he is post-transplant isn't much difference from pre-transplant. Pre-transplant, he was getting 1,182 ml's of fluid a day, which is 40 ounces. Post-transplant, the goal is 1,100 ml's a day. I'm really glad that this didn't increase dramatically like we were told to expect. Initially, they told us that he could require as much as 2,000 ml's a day, which is pure craziness for a two year old. At this exact moment, he is getting just over 1,000 ml's a day, so we don't have far to go before he is at his full nutrition. Full nutrition, of course, is a requirement to go home, along with a nutrition schedule.

The Nephrologist's main concern today was his weight. He is still up quite a few pounds from before surgery. All of this weight is fluid related from during surgery. During surgery they had to pump his body with tons of fluid- over 3,000 ml's- to jump start the kidney. They have started giving him doses of Lasix to help rid his body of this fluid through his urine. Luckily, it is already working wonders. His belly was really distended, because of the fluid, so I am hoping this will help to relieve some of the pressure.

We had a lengthy discussion, or training, today with the renal transplant coordinator. We talked in length about lab work, medicine, infection, rejection, when to call in, who to call in to, etc. All of the things that we need to discuss in order for everyone to feel comfortable once we do get to leave the hospital.

Parker will only be going home on six medicines as of now. Of course, this could be subject to change before we leave. Three of those medications are anti-rejection medicines-Prograf, Cellcept, and Prednisone. The Prednisone is a steroid that we will slowly taper down to a minimal dose over the next eight weeks. The Prograf and the Cellcept are the major medicines that protect his kidney. These have to be given at exactly 12 hours apart. Right now they are being given at 8 a.m. and 8 p.m. When we do labs we have to get labs at 8 a.m., before his morning dose, to get an accurate level of how well he is absorbing the medicine. Other than those three medicines, he will be on a prophylactic antibiotic, Bactrim for a year. An anti-fungal swab for his mouth to prevent fungal infections such as thrush, called Nystatin for six months. Lastly, he will be on Zantac, because some of the medicines can cause tummy issues, so they want to make sure it doesn't cause reflux. The only problem that we are having with this so far is that the Cellcept is causing some diarrhea issues. Parker has been making stinky heinie's all day! 

As if all of these things aren't already great, some of the best new of the day is that a bed finally came available on the floor, and we were just moved down here. Of course, the bed came open 20 minutes after Parker fell asleep for his nap, but that's how it always works, right?

There are three main things that we are working on now to get him discharged from the hospital. First, we are working on perfecting his tac level, which is the level of anti-rejection medicine he is absorbing. We have to have this absolutely perfect before leaving the hospital, and his is pretty low right now. The information that I got yesterday was incorrect. His tac level was not 9.5, it was 1.5, which is not good. They are looking for it to be between 5-10, so they gave him a second supplemental dose today to help bring it up. Then we have to find the perfect dose for every day use, and that will be a lot of trial and error. Second, once we have him at full feeds, we have to find a daily feeding regimen that works for him. The only reason that this may be difficult is that some of his medicines are better without food, and some are better with food. Third, we have to do a second round of lasix today to get some more fluid off of him. Hopefully, this second round will pull enough fluid off of him so that he doesn't need any additional doses.

In the meantime, we are having Urology come around in the next few days to consult on his bladder. Apparently his bladder is a lot smaller than expected, so they are leaving the catheter in for a few weeks. We will most likely have to go home with it. If we do, the plan is to disconnect it from the foley bag and let it drip into his diaper. The problem with that is that you don't want him pooping near the catheter, because that is a risk for infection. So we will have to double diaper him. This means putting one diaper on, cutting a hole in it for the foley to go through, and then putting another diaper on top of that. Essentially the inside diaper will catch the poop, and the foley will be pulled through the hole and into the outside diaper, which will keep the catheter safe from the poop. Before we go home, though, they will have urology come by to take a look at things and see how his bladder is progressing and stretching. Hopefully, it is doing well enough that we can take the catheter out before leaving, but I'm not expecting that.

Essentially, Dr. Beluarte said it's not impossible to be getting discharged by the end of the week, but we are not expecting that. The beginning of next week seems more likely to us. We especially don't want to get our hopes up to something that is only a "maybe". We are just grateful that he has done so well through all of this that they are even considering discharge that early. The doctors honestly can't believe how well he is doing, which is wonderful, but kind of scary. It's almost too good to be true!

The best news of the day was a story that the ICU attending told me. She asked if we knew exactly how powerful this kidney really was, and I was kind of confused as to how she meant it. She apparently was in the operating room, and she says that the kidney actually started to produce urine before it was even inside of Parker's body. She said that as soon as they connected the ureter to the kidney, Parker began to pee, which is completely amazing! She also said that it has been a long time since she has seen a creatinine of 0.1, which is perfect! She told us to make sure that we let the donor know that she is a true hero, especially in her eyes. I explained that we have all let Patty know how much she is a hero over and over again! We will continue to tell her that for the rest of our lives, too!

Monday, October 14, 2013

Making great progress, but frustration is setting in...

Today has been a very rough day on all of us. The events that transpired were all really good progress for Parker, but it wasn't easy. In the hospital, the doctors rotate every few days, which is expected. I mean, everyone needs a day off, right? The problem with this is that when new doctors come on, they haven't seen him themselves. They want to get a chance to see first hand what is going on, which is understandable, but can be frustrating for us, since we have already lived it once. So the doctors that came on today came up with a plan pretty quick, which was great, but made decisions on certain things a little too late in my opinion. The plan was great, and I completely agreed with it. We really needed to start feeds to get something in his belly. We are on day 5 now, and he's been on TPN IV fluid the whole time. The "real food" would help to bring his electrolytes and blood sugars up, and get his bowels moving. His Potassium and Phosphorous have been continuously low since surgery, and his formula has both of those in it, so it would help raise them. His blood sugars have also been dipping down, so of course food would help to bring those up as well. We needed to get an NG tube back into his nose and ASAP. This was a feat in itself. We got the tube in, taped it all down, and called x-ray to come verify placement. Well, after further review, the nurse had the tube too far in, and it was actually in his intestines. So, the doctor told her to pull the tube back 4 cm and redo the x-ray. This wouldn't have been so frustrating if we wouldn't have already taken the x-ray board out from underneath him. Now we have to raise him up again and move him around. Then we have to take the tape off of his face, pull the tube back out, and re-apply the tape. So we go through all of this, they perform a second x-ray, and low 'n behold it's still too long. Luckily this time we were smart enough to leave the board underneath him while we checked the x-ray. So, the doctor orders our nurse to pull the tube back another 4 cm. Now we have to rip the tape off again, pull the NG tube back and re-apply more tape. Oh, and then get a third x-ray. I guess the saying "third time is the charm" holds true in this situation, because the tube was finally in the right spot. So as long as he held down his feeds with no vomiting, and his electrolytes came up, they would be happy to send us to the floor. We started feeds out at a low rate, only 12 ml's an hour. We increased the rate four hours later to 17 ml's an hour, and he handled it like a champ. The plan is to increase feeds at a rate of 10 ml's every 4 hours until we get to 42 ml's per hour. This will be his full feed for now.

The second issue of the day was pain management. Last night we were all packed and moved down to the floor when the team realized that their pump wouldn't accommodate Parker's continuous dose of pain medicine. So, when the pain team rounded this morning they had two options for us. The first being that they were calling pharmacy to see if they could dilute the concentration of his dilaudid. If the concentration was lowered, then he could get a higher rate per hour, and the machine could handle the dose. If pharmacy wasn't able to accommodate this, then we would stop his continuous dilaudid altogether and see how he handled things. After all, he could always have "rescue" doses when he needed them. Well, guess what? Of course pharmacy couldn't dilute the dilaudid, so we had to stop his continuous pain medicine. He was doing great with this. He was two hours out with no drip, and he had just crashed out for a nap. Jason and I decided to leave and get lunch while things were quiet and peaceful. We could both use the fresh air, and a decent meal, so we walked a couple blocks to a little restaurant. When we got back to the room, Parker was up, and I could immediately tell something was different. He was loopy! I asked the nurse at the station what happened, but she didn't have much information for me other than they had to give him a rescue dose of pain medicine. When our nurse got back from lunch, she said he woke up, looked around, and went frantic. She said he was in a full out crazy episode. She said that she honestly thought his "fit" was because we weren't here, but she couldn't get him to calm down, so the doctors decided to give him some for sedation. Guess we have learned our lesson. Lunch will be in the room from now on. I'm happy to report that after this dose at 1:45, he has only needed one other rescue dose and it was five hours later. All-in-all I would say that he's handling things pretty well for being 5 days out from surgery.

The last issue of the day was the central line. The renal and surgery teams ordered for it to be taken out yesterday, but the ICU team wasn't quite on board. They didn't want to pull it out until he was tolerating food on his own. So, by late this afternoon he was tolerating the feeds fine, and the nurse went to draw labs out of it. Low and behold it wasn't pulling back well. Apparently, in one of his fits today, he twisted it, so the ICU team finally got on board and decided to pull it. This was probably the most traumatic experience I have ever been through. Jason left the room, fortunately, because I honestly don't think he would have handled it. Actually, he well told me that he wouldn't have. It took three grown adults to hold him down while one of the nurses removed the sutures and pulled it out. I was one of those adults, and watching your child thrash around a crib with his entire body coming off the bed, arms and legs wailing in the air, is the worst feeling ever. He was turning bright red, and he was drenched in sweat from head to toe. The nurse got all of the sutures out, and went to remove the line, but there was a lot of resistance. They called the attending into the room immediately so that he could handle things. The line goes extremely close to your heart, so the nurses didn't want to pull too hard and cause any damage. When the attending came in he was able to get it out rather quickly, and most importantly Parker was safe. After this experience, I was completely drained and had a major migraine.

His afternoon labs came back much better. His phosphorous and potassium came up a good bit and are in normal range now. His blood sugars went from 70's to 120's, which I'm told is a wonderful thing. Most importantly, his tac level, which measures his anti-rejection medicines, looks great! The goal was for his tac level to be between 5-10, and it came back at 9.5 even with a little spit up last night. Overall, everyone is pleased. Surgery, nephrology, and now ICU are all ecstatic with his progress.

This is the point where late decision making has now cost us. At 3:30 this afternoon, the renal floor called up to see if we were going down today. Since the ICU team couldn't give them a difinitive answer, they had to give our bed to another child admitting. Well two hours later, the team decides that we are now approved to go to the floor. I didn't get up immediately, but after a little bit I decided to start packing. Big mistake. The renal floor called back up to tell our doctors that they did not have an available room or bed for us. So, guess who is stuck in the ICU for one more night? Yep, that's right. Us!

Like I said, everything that occurred today was a huge step in the right direction, but it was draining for all of us. I'm whooped. If you text either one of us today, and we didn't answer, don't take it too personally.

Sitting up some..

Dripping in sweat after central line removal 
 And then too worn out to stay awake...

For those of you who come in contact with Parker frequently, be ready to wash your hands ALOT. And I mean ALOT. My skin is raw and burns like fire.