Pictures of the J-tube...Don't look if you are squeamish!

I have to clean around this a couple times a day...the two scabby looking holes underneath are where his drains were.

If you look in the middle of Paul's incision you can see a stitch coming up through his skin...not sure where it is coming from...he had staples in his incision.  It kind of looks like a bee stinger...I guess the doc will remove it Tuesday...

And the saga continues...

We got a phone call at 7:00 this morning.  It was a Home Health nurse calling to let us know that she had received an emergency message that she needed to come out first thing this morning to draw some blood.  She told Paul that his glucose numbers were very high and they needed to see what was going on.  His glucose numbers? Nobody said anything about glucose last night.

Paul told the nurse about what happened last night.  He told her that we had been to the ER and they had drawn blood there.  He told her that they said all his numbers were fine.  She told him that she would call the hospital to see if they would give her the lab results and then call us back.

At 7:30 the nurse called back.  This time I spoke with her.  She said that she did not need to come out because the hospital gave her Paul's lab numbers and said that everything was fine (including the glucose number).  Evidently, his blood sample that was taken yesterday got really messed up....

The nurse agreed with us that this whole incident should have been handled differently.   In theory, they should have come back yesterday after they had the outrageous numbers and drew a new blood sample.   Ironically, we still don't know who called us.  The lab told the nurse the only people they told was Dr. M's office...Dr. M's on-call didn't know anything about it...

I really wish that Home Health would have a dedicated nurse coming to our house.  We have seen four different nurses this past week.  We really liked two of the four.   The one yesterday was nice, but  because she was in a hurry to get Paul's blood, she did not take the time necessary to get a good blood draw.  She brought her kids with her because she didn't have a babysitter.   She had put some Cathflo in to his PIIC line because there was a blockage not allowing the blood to flow out.  Solutions could go in, but nothing could come out.  I won't explain all the reasons for this...too much technical stuff... anyway, she left for a couple of hours and came back to see if it worked. She was able to get a blood draw when she came back.  So, she hurried and took the blood and left.

As we have discovered from several nurses, PIIC lines can be "iffy" to get a good blood draw.  Especially since the two ports come out at one spot (Paul has his TPN going through one of the lines at all times).  They said usually you get a better draw if it is from a vein...

Oh well...he is alive and doing well!  I am going to get him a milk shake today and see how that works!

Never a dull moment...just got home from the ER

At approximately 6:00 tonight I got a phone call from some guy.  He asks me if my husband is a patient of Dr. M.  I tell him yes.  He says in a panicked voice, something about calling for Dr. M's office.  He proceeds to tell me that there was a problem with the blood labs Paul had drawn today (a Home Health nurse draws his blood twice a week because he is on TPN).

The guy tells me Paul's potassium level was extremely high and I needed to get him to the ER immediately! I asked him which hospital to take him to.  He said the closest one.  He said this is very serious because most people that have this high of numbers would probably be dead.  He then proceeded to tell me that he is not sure what they will do, but that Paul will probably need to be on dialysis.   I was really freaking out at this point...I ask the guy should I call 911 and have an ambulance take him.  He asks me, "Is he breathing"?  "Does he seem okay?"  At this point I felt like yelling at the guy, of course he is breathing you idiot,  he just finished some chicken noodle soup!  Seriously, if he wasn't breathing don't you think I would have called 911 before now?

Anyway, I look over at Paul who has this puzzled look on his face, like what is going on...I hang up the phone and proceed to tell Paul that we need to get him to the ER immediately!  He looks at me calmly and asks why?  I said, "This guy just told me that your potassium levels were way too high and you need immediate attention" (I didn't tell him about the dialysis part or that he should be dead).   

Paul says other than my heart has been racing a bit, I feel fine.  I was in panic mode and he could tell.  He told me to calm down that he really wasn't feeling too bad.  I called some friends to help out with the kids and told him to get in the car.  He told me he needed to go to the bathroom first.  I was thinking, how can you go pee at a time like this?   Didn't he know he was lucky to be alive at this moment?

Our friend came over and could see that I was in no shape to be driving my husband to the ER.  After all, I had just been told that my husband is lucky to be alive and in my mind he was a time bomb waiting to explode.  So, he drove us to the closest hospital.

We arrive at the ER and I started to tell them about the phone call.  They got Paul back quickly and started checking him immediately.  They hooked him up to an EKG, drew more blood to check his potassium levels, and monitored his blood pressure.  His heart rate was ranging from the high 90's to low 100's which is high for Paul.  He usually runs about 60's to 70's.  His blood pressure was a bit high as well.

I started to bawl.  This sweet nurse took me out and got me a drink.  She told me not to worry that everything would be okay.  All I could think was that my poor husband was going to have to have dialysis...

In the mean time, I had called my sister, who had had potassium issues in the past, to ask her what she thought.  She told me that it could have been an error because that had happened to her.  She said something about the blood cells opening and spilling extra potassium  (evidently there can be errors because of this on potassium levels-this can happen if the blood tube gets shaken up.)

Thankfully, my sister was right.  The nurse came in and told us the blood work had come back and his potassium levels were just fine.  She told us that they should not have panicked us and just done a retest on the levels.  Evidently, she said the same thing as my sister, this can happen with potassium levels.  We were so relieved!

The ER doctor came back in to tell us the same news.  He told us that since our doctor is out of town, he called the on-call doctor filling in to let him know the update on Paul.  He told him that Paul was at the ER because they had re-tested his potassium levels and they were fine.  This doctor did not even know there was an issue to begin with.  He knew nothing about Paul's potassium levels.   So the ER doctor was stumped as to who called us... so were we... I thought the guy had said he was the on-call doctor calling.

We asked the doctor why Paul's heart rate is running higher than normal.  He said he didn't know, but that he should be okay.  Could be all the sugar he is getting in the TPN. We will see our doctor on Tuesday.

So now, the mystery begins.  We don't know who called us.  The ER doctor was hoping they hadn't called the wrong patient...that doesn't sound too good.  What if some poor guy is out there with high potassium levels and doesn't even know it!

As for me, I am thinking it was someone calling from the lab or from Home Health... Whoever it was, they really need to learn how to tell people that they need to get their potassium levels checked.   Did this person not know that there can be errors?  How about just telling the person they need to go to the ER to have their potassium re-checked to make sure that it is okay, because it may be a little high.

Thanks to our friends who came to hang out with us at the ER.  It made it much more interesting!   I am sure you feel a lot more educated about potassium levels, as do we!

Sorry, due to the holiday we haven't been in touch...

Are you kidding me?  We finally got a phone call from a dietician yesterday afternoon.  Yep, Paul was sent home from the hospital last Thursday with no real information about what to eat and what not to eat or any real advice at all.  He was told by his doctor this is just time for experimenting...try whatever you feel like you can handle.  He told Paul not to stress about eating too much because the TPN would give him his nutrition.

I don't blame the doctor for not giving us more information, but I do feel like the dieticians should have met with us.  The only reason why I knew what "dumping syndrome" is because I did research on my own.  Through that research I also discovered that  Paul should drink either 30 minutes before or after a meal (but not during), that he should be eating six to eight small meals a day, eat high protein, eat very little sugars, don't eat fresh fruits and vegetables, and a few other dietary guidelines.

Paul had a dietician assigned to him in the hospital.  He is the one who determined how much to give him in his J-tube feedings  and PPN.  He was in the hospital for 11 days.  The dietician met with him personally one time to tell him they were going to change the J-tube feedings.  I never met him.   Don't you think in the 11 days at the hospital, someone could have met with us to tell us what we needed to know about his dietary needs?

Paul had been home for five days before someone finally called.  It was a dietician from the Home Health company we are using.  She asked him how he was doing.  He told her that we were a little frustrated because no one had really bothered to give us much information about his dietary needs or address any concerns we might have about it.  That is when she told him that due to the holiday, no one was able to contact him sooner.   

Sorry, not trying to sound too cynical here, but cancer doesn't take a holiday!  I have noticed that it is quite difficult to get the help you need during the holiday season.  Granted, the hospital was very busy, which I am sure does not help the staff who is working.  Truthfully, the only people I really noticed that didn't give us much attention or help us was the dieticians and the respiratory team (oh yes, and that one nurse who totally neglected Paul in his time of need).

Paul came home with some lung congestion that was affecting his oxygen levels...fortunately our Home Health nurse detected that and told us the breathing exercises he needed to be doing to clear his left lung.  Thank heavens it worked!!!  Ironically, no one caught it at the hospital even though his oxygen levels were about 92.   In addition, she explained the redness and swelling in his left arm was due to phlebitis.  We had asked the nurse earlier that day about it and she just said it was nothing.   The Home Health nurse told us to use heat compresses on it.  I wish the nurse at the hospital would have told us to do that...she just looked at it like she didn't know what it was.  Fortunately, the phlebitis has also been clearing up on its own....it did look pretty scary for a while (the redness was moving up his arm).

All in all, I am grateful for the care Paul received while in the hospital.  I have realized the value of a great nurse and the CNA's who help them.  They are definitely the patients advocate!

Adjusting nicely at home...

It has been so nice having Paul home.  Christmas was great!  He is doing much better at home.  He has only thrown up one time since he has been home....that was because he ate too quickly.  He has to eat really slowly (little bits at a time).  I have managed to get around 1500 calories a day in him for the past 2 days.  Obviously, we need to get him to more like 2800-3000 calories a day to maintain his current weight at 181 pounds (then we can get him off of TPN).  He weighed 192 lbs. the day of his surgery.  He is on TPN 24 hours a day...this helps him get the nutrition he needs.  He needs to be as strong as possible for the upcoming chemo!

I feel like I am becoming a pretty decent nurse...I have to flush his J-tube twice a day...I am getting really good at flushing out his PIIC lines...attaching his TPN...changing his dressings around his J-tube, etc...Actually, it isn't really that hard, just can be a little time consuming.  It is kind of a process to get him showered!

We are so grateful for all the help that we have received from family and friends.  We truly have been blessed!  We love you all!

Paul is home!!!

So, they stopped the J-tube feedings yesterday and started a PPN (partial nutrition through IV).  That helped tremendously!  He is not having the nausea and vomiting issue like he was...

They put in his PICC line today and radiology had him drink the lovely contrast to see how he is doing.  They said he has some slow motility going on in his intestines.  Could be because of pain meds...anyway this could be another reason his body is rejecting the tube feeds into his intestine.  In addition, you could see that his intestines looked swollen.  He just needs time for the inflammation to go down... We will slowly be working on him eating each day.  Eventually, we need to get to the point that he can eat enough to sustain himself without the help of TPN or tube feedings.  Right now, we just need to focus on him getting strong enough to face chemo and radiation next month...that is where the TPN will help us!

Anyway, we were able to bring him home this afternoon.  He is so happy to be home.  The nurse came by tonight and helped us hook him up to his TPN and showed us how to take care of "things".  I am glad that another nurse is coming back tomorrow night to make sure we really know what we are doing!

The girls were so excited to see their dad!  It was a great Christmas present for me to be able to bring him home.  He is sitting in his new recliner (early Christmas present) and watching television...it is so nice to see him sitting there!!!

Well, I guess it's time for a PICC line...

The doctor has finally decided that it is time to change the way Paul is receiving his nutrition.  The J-tube is just not working out so well.  He keeps vomiting.  He still gets nauseous and has a little bit of vomiting when they turn off the feeding, but it could be some residual effect...who knows?  So, now it is a different plan.  The will be putting in a PICC line tomorrow.  He will be receiving TPN (Total Parenteral Nutrition) through the PICC line.  A benefit to this happening is that he might come home tomorrow evening or Friday.  I think it would lift his spirits a lot to be home for Christmas.  He has not been his normal, happy self.  He is just so depleted...

I really hope this helps Paul.  He has been suffering so much.  I hate to see him go through this...