Jennifer Ireland

A deserved day of rest...

Jen's restlessness and confusion went on through the night and into the early morning hours.  Her nurse and I spent quite a bit of time helping her back down into bed following episodes where Jen would get up and attempt to do things her imagination was creating.  By 1:30 AM, the on call doctor authorized the use of an different medicine to relax her and hopefully reduce her hallucinations.  Thankfully two small doses of Haldol worked and by 2:30 AM she was sleeping soundly for the first time in almost a week.  She woke up around 6:00 AM having difficulty breathing and is now requiring a small steady amount of oxygen.  This difficulty breathing is most likely a result of the amount of fentanyl she is getting around the clock.  Once on the oxygen, she slept through the morning and afternoon somewhat restfully.  She hasn't had much of an appetite the past 48 hours but sat up and ate jello on two occasions today while doing her best to carry on conversations with us.  Tonight, I am praying that she will sleep as well as she did earlier today.  I think I've praised them before, but the oncology nurses here on the 5th floor at North Kansas City Hospital are unbelievable.  They give comfort both in the way they go about their work and in the way they treat us family members around the clock.  I am constantly asking questions, analyzing their decisions, and making suggestions.  They don't get angry with me at all but sincerely understand we want Jen to be as comfortable as possible every minute of the day. 

Our two girls continue to be in good hands.  They have split time between our house and Jan's.  Various friends and family members have been watching them.  We typically rely heavily on Jan, but she is now freed up and able to spend as much time as possible here at the hospital with her daughter.  It is really important to us that Emma and Peighton see consistent routine and familiar, caring faces.  We are able devote our full attention to Jen and not wonder one bit if the girls are doing well.  Dennis, Tina, Jordan and Jason are also in town spending time with Jen and our girls.

Today Jen has endured more than anyone ever should...

First off, I know a lot of you out there were hoping for more frequent updates on Jen here in the hospital.  I haven't had much luck with internet access up here and my phone will not allow me to create a post.  Fortunately I was able to sweet talk a nurse on the 8th floor into giving me her username and password to log onto the wireless access up here.  I think it was less my "sweet talking" and more her just being a very nice lady.

Thursday was a fairly restful day for Jen.  There were no major procedures and not many visits from doctors.  Her nurses just worked on keeping her comfortable and in good spirits.  Her pain levels were slowly rising, but with the nerve block on the horizon she had something to look forward to.  The night became restless due to constant fidgeting from pain meds and the plasma infusion that started at 4:00 AM.

Early this morning they performed the celiac plexus block.  It appeared as though the procedure went well.  Following a two hour recovery, she was sent directly down to radiology for another paracentesis.  During both procedures they had her morphine pump completely off.  Shortly after the paracentesis, she was in an extreme amount of pain.  Those of you familiar with nursing know that patients are often asked to rate their level of pain on a scale of zero to ten -- ten being unbearable.  Jen was a ten this afternoon.  In an effort to prevent hallucinations and administer a drug that wouldn't require a lot of liver involvement, they changed the primary pain med from IV morphine to IV fentanyl.  It has taken all afternoon and evening to get her to a point where she seems somewhat comfortable.  At last check, she told the nurse her pain was at a five.  With so much pain and symptoms from high bilirubin, Jen is also having to deal with a lot of nausea. 

This evening she is surrounded by family.  She isn't able to do much visiting, but their is an environment of love around her.  Tomorrow we will hope that her pain will be back under control and she will be able to spend a good part of the day sleeping.  If we can get a couple of days put together where things are manageable, we'll attempt to get her home.

What day is today?...

I'm sure to Jen everyday seems identical from the previous.  She loses track what day of the week it is and how long she has been here in the hospital.  Today was a long day for her, but it is now 9:00 PM and she is tucked into bed ready for a restful night.  The last several nights she has been woken up frequently as they set up and delivered plasma.  Her blood's clotting ability has been low and they needed a good "window" of favorable labs in order to perform the celiac plexus block (nerve block).  The good news is that by 7:00 this morning they were able to get good lab results and by 8:00 she was in the pain center.  The painful procedure, which involves an x-ray guided needle in the back and an injection of a local anesthetic, went well.  Her pain level seemed to drop for about 5 hours today before the medicine wore off.  Friday they will repeat the procedure with absolute alcohol rather than the anesthetic and it should last much longer term.  Tomorrow there doesn't seem to be much planned for her other than rest and recovery from several very long days.  If the procedure is performed on Friday and the results are good, I'm guessing they could consider discharging her sometime this weekend.  That's just a guess, but our fingers are crossed.

She hasn't been able to read the blog, but we try to keep up with comments with my cell phone's web browser.  And as I've said many times, your support and prayers are priceless.  Thank you so much.

Thanks also to the visitors that have stopped into see Jen.  She does her best to stay alert and converse, but the battery of meds that she is given at various times through the day make it very hard for her to be herself.  She mentioned that she feels bad that people show up and she can't prevent dozing off or talking gibberish.  I told her not to worry, people are just concerned, miss her smiling face, and just want to say a quick hello.  Dennis and Tina were in town the past few days and were able to bring Emma and Peighton up to the hospital to see Jen for the first time since last Thursday.  Emma enjoyed shopping in the gift shop and lounging in bed with mommy.  Peighton was more interested in stomping through the halls in her new boots and exploring.  Jan loaded them up and took them home for baths and bedtime.

Not much has happened since yesterday...

Jen is doing pretty good today - all things considered.  Her spirits are good and they have her pain under good control.  The only problem is that they have thrown so many different pain medications at her that it is now time to simplify them.  They will work today on "weeding out" some of the medications that may not be that effective or may be unnecessary due to a heavier medication she is taking.  The amount of pain meds in combination with various nausea meds are making her slip in and out of sleep.  She often finds herself having conversations out loud and mimicking the actions she is making in her dreams.  It is humorous at times, but mostly frustrating and embarrassing to her.  Hopefully they'll be able to get it straight.  We are also waiting on word regarding the possible celiac block they have recommended.  This procedure should dull some of the pain in her lower back due to tumor or inflammation pressing against a nerve center.  The majority of the day is spent resting, watching TV, eating great tasting hospital meals (which she insists on eating), and getting poked and prodded.  I should mention that she had another paracentesis today where they drew 3 1/2 liters off her abdomen.  This will make her a little more comfortable.  The high volume of fluid drained has a lot to do with the IV fluids they have been pumping in.  They actually dropped the IV fluids today because they didn't seem necessary based on the fact she is eating and drinking fairly well.

You are probably wondering how the girls are doing.  So far so good.  Emma is bouncing back from a weekend with an ear infection and strep throat.  Peighton hasn't caught it yet - knock on wood.  The girls have been spending the majority of the time with their Nana (Jan).  Jan is getting a lot of help from friends who do a good job of keeping the girls busy.  This week, they'll get back in somewhat of a routine with Jana watching them during the day.  I do my best to spend an hour or two with them each day also.

I wish I could give good news...

Many of us get involved in medical situations where we have a lot of exposure to nurses, doctors, hospital environments, etc.  We learn the jargon, become familiar with different medications, and even get to a point where we think we can diagnose something.  Heck, I'm even guilty of thinking I could easily trade places with certain doctors and do the job.  The reality is, doctors are much more than well-educated people.  They have to also be people of strong character with a good emotional balance and the ability to deliver the best of news and the worst of news to patients and families...this is reason enough for them to be paid as well as most doctors are.  Don't get me wrong, there are some out there that have presented less than desirable people skills and bedside manor.  But the majority of the doctors that Jen and I have been around in the past 13 months have been great.

Unfortunately today we had to hear some disappointing news.  Following a couple of tests and scans, the gastroenteroligist has determined that a stint will not take care of her current issue.  There is no obstruction in her "common bilary duct."  Her liver has been compromised with a significant amount of disease since her last scan and no stinting is possible.  At this point, Dr. Pluenneke and a pain management specialist are working on a possible procedure to block some of the lower back pain she is having.

We are obviously upset, but her chin is still up.  We'll speak with a couple of doctors to seek any other possible treatments to ease her current symptoms due to the back up of bile in her body.  We are also working on getting some labs and reports back down to Dallas so they can determine if she can continue treatment.  Jen will most likely remain in the hospital for at least another several days.

Thanks for the continued prayers.  As usual, I'll keep you posted.

In the meantime, the girls (and their cousin Lilly) are always and uplifting sight when things aren't going so well...

Back in KC...

For all you faithful weekend blog readers - we made it back today.  We were surprised based on the weather in both Dallas and KC, but we landed at 11:40 AM on schedule.  Unfortunately we had to head directly to North Kansas City Hospital.  Jen was admitted so that they could expedite any prep necessary for a prodedure to correct her bilary obstruction.  Late this afternoon she had a CT scan.  Tomorrow she'll probably see a GI doctor in addition to Dr. Pluenneke.  Tonight she will try to get a decent night of sleep now that they finally got enough medication in her to make her comfortable.  I'll keep everyone updated.  In the meantime, stay warm!   

Just one of those days...

I guess it really started yesterday evening.  We arrived right on time to the airport to catch our flight to Dallas.  We are now able to pre-board all of Jen's flights due to understanding gate agents and a letter from the doctors in Dallas.  Once everyone else boarded, we found out the plane had a mechanical problem and we all shifted to a plane in another gate.  Our arrival in Dallas was about two hours late.  We checked into the hotel, ate a late microwave dinner bought in the hotel lobby, and tried to get to sleep by about 11:00 PM.  The downtown hotel was very nice, but the air units in the rooms did not have a fan function or would not stay on continuously.  Throughout the night the room alternated between cold and hot, noisy and dead silent.  It made for a long night and about three hours of sleep for both of us.  Next trip I'll remember my portable noise maker!

Today we arrived at the Baylor University Medical Center right on time.  Our hope was for her treatment to get started before 11:00 AM so that we could change our flight and get home early.  Unfortunately her labs came back with some bad news.  She had an elevated bilirubin level that indicates a possible blockage in bile flow.  This could also be seen in her eyes and skin today.  She is slightly jaundiced.  The doctors decision was to cancel the treatment and get Jen to radiology where they would do an ultrasound and look for a blockage.  The radiology appointment meant that we were definitely not getting out on an earlier flight.  The actual ultrasound was a little difficult for the radiologist and the radiology tech to read due the fluid in her abdomen, but they were fairly certain she does have a blockage.  This means that a stint will probably need to be inserted to get the bile flowing again.  Dr. Pluenneke already has the ball rolling on admitting her once we get back to KC and having the procedure done as soon as possible.

Shortly after leaving the hospital, Jan called and informed us that our flight was showing "canceled" online.  The storms in the Dallas area were just starting to brew and word was that the KC area was covered in a thin sheet of ice.  We ate a very late lunch at one of Jen's favorites - On the Border - and stopped into one of her favorite stores - Crate and Barrel.  Our next stop before the hotel (a new one tonight) was Target.  We both needed a fresh pair of undies and a change of clothes.  To wrap up a bad 24 hours, Jen was feeling nauseated and ended up throwing up her nighttime medications.  Fortunately she packed some extras this time. 

A couple of pieces of good news:  Assuming the bile issue is resolved this week, we'll come back to Dallas as scheduled and get back on track with her treatments.  We were also able to watch the encore airing of Gray's Anatomy which was nice since we missed it last night. 

As usual, the girls are in good hands while we're gone with the duo of Jan and Jana. 

Getting back into a routine...

As you could imagine, our schedule has been pretty variable since early December.  We have spent the last month doing a lot of traveling, bouncing around to doctor appointments, and squeezing in the holidays.  This week it finally feels like we are falling back into a routine.  Emma's school has started back up, Jen's treatments are now scheduled weekly, and everything has become a little more predictable.  Routine is good sometimes for peace of mind.  The only unpredictable part of each day right now is Jen's pain.  She has many tools to control it.  Now it is just a matter of taking the right combination of medicine and staying on top of it.  She had a bumpy weekend and a rough Monday but seems to be doing pretty good as of today.

Monday she had an appointment with Dr. Pluenneke.  Although she is being treated in Dallas, Jen still sees Dr. Pluenneke every couple of weeks.  He has treated her disease for a year and is like an old friend now.  He coordinates all of her medications and ensures that she is comfortable.  On Monday he tweaked some of her pain meds and did a quick physical exam.  The one bit of promising news was that the lymph node that "popped up" below her neck about three weeks ago seems to be consistent in size if not smaller.  Her ascites (abdominal fluid) also seems to have stabilized if not slowed down.  He recommended being proactive on her paracentesis and schedule them regularly rather than waiting on scheduling them when she feels ready to explode.  The more swollen she is during a procedure, the more difficult it has been to recover.  Today she had another one at NKC Hospital (her 4th) and they drew another 2 1/2 liters off her abdomen.  Tonight she is resting fairly comfortably in bed watching some TV.

We'd like to thank Melanie for a delicious dinner tonight.  I have deemed her the Casserole Queen.  Thanks to Stephanie for stopping in this afternoon to say "Hi" to Jen and deliver some waiting room reading material.  And thanks to Kristin Ries for filling in for Jana while she is out of town.  Kristin has some great experience having grown up with three much younger brothers and just seems to have the magic when it comes to handling our two little ladies.

Second treatment in Dallas went well...

Following a very turbulant but short flight on Thursday night, Jen's Friday morning treatment in Dallas went well.  During the treatment a funny thing happened.  Jen was sitting in the comfy chemo chair while the nurse accessed her port and set up the IV pump.  All of a sudden we heard what sounded like running water above our heads.  Jen jumped out of her seat and the nurse backpeddled just before gallons of water came pouring through the drop tile ceiling.  It ends up that a sink backed up on the floor above creating a mess (and some excitment) in the transfusion area of the office.  We had a late flight out of Dallas so we killed some time at the movie theater again.  I enjoyed "The Good Shephard" while Jen attempted a nap in theater seats.  She has now vowed to never go to a three hour movie again.  The commute to Dallas is now becoming fairly routine and we'll pack up and do it again next week.

I'd like to take another opportunity to say thank you to everyone out there that continues to keep tabs on Jen and our family.  Thanks for the prayers, blog comments, phone calls, e-mails, and much more.  We continue to receive child care donations here on the blog and countless offers of babysitting help.  Our recent efforts in finding a new treatment drug for Jen and the subsequent discovery of an opportunity in Dallas has created a burden of travel.  We have had at least a dozen people offer up frequent flier tickets, hotel discounts, places to stay, etc.  The support is best described as overwhelming.  Honestly, we feel guilty for not being able to show our sincere gratitude to each of you individually.  We just can't keep up! 

Below you'll find a letter from Jan and Randy Castle, very close friends of the family.  Knowing that so many people want to help financially with the direct and indirect expenses of Jen's treatment, they have created a "Fund." 

Dear Chris and Jen,

I wanted to let you know that Randy and I have set up an account for Jen at First National Bank of Missouri.  I hope that is ok.  So many people, including ourselves, ask what we can do to help Jen, and you.  It is our hope that this fund will be one way.

Praise the Lord that Jen was accepted into this new treatment plan in Dallas, however the expense you must be incurring for traveling, hotels, babysitting, eating out, etc. has to be mind boggling.  With that in mind, here is the account information we set up:

Deposits can be made to

The Jennifer Ireland Fund

First National Bank of Missouri

PO Box 1400

Lee's Summit, MO  64063

Or in person at any First National Bank of MIssouri locations at Lee's Summit, Oak Grove, Buckner, Independence, or Blue Springs, Missouri. 

Please let us know if there is anything we can do to help with this or anything.  We are praying constantly. 

Love you twoI

Jan Castle

In addition to your support being overwhelming, it is also humbling.  I have mentioned before on this blog that Jen and I both have been pretty hesitant to go out of our way for help with anything in the past.  Now we know better.  We can't do it without you.

Once again, thank you.  Have a great Sunday!

Happy New Year to Everyone

I hope everyone's new year is off to a good start.  Ours has been good so far...except for one minor detail.  I was drained of fluid once again on Tuesday.  They got 3 liters this time.  Can you just imagine 3 soda bottles in your body!  Still shockes me every time.  After having the fluid out, I had the usual back problems, hard to walk, lots of pain.  Once we got home I quickly took some of my many pain killers and took a nap.  When I woke up I felt sick to my stomach, so it was time for some nausea medicine.  Wednesday morning Chris left very early for a 24 hour trip to the Carolinas.  He will be back Thursday afternoon just in time to head out on our 6 pm flight to Dallas.  Poor thing.  I spent the day in bed not feeling well.  With the help of my meds, I am feeling much better now.  I had a wonderful dinner...my 2 best friends dropped by to make me dinner, grilled cheese and tomato soup.  It was delicious!  Thanks Melanie and Stephanie...I love you both to pieces.  Right now I am relaxing and waiting for my mom to bring the girls back.  Jana will be spending the night to help out.  We thank God for her every day.  She has been so good.  I hope everyone has a great Thursday.  We will write again after round #2 is through.  Have a great night!

Chris and I at Christmas