We are home

"I have always looked at life as a voyage, mostly wonderful, sometimes frightening. In my family and friends I have discovered treasure more valuable than gold."
--Jimmy Buffet (A Pirate Looks At 50)

We have arrived safely at home. Jack is enjoying visiting with his kids.
Home phone number is 704-274-5514.

We will be settling into normal routines over the next couple of weeks (plus a number of doctor visits) and will plan our trip back to Boston in July. Thank you all for the encouragement, good wishes and prayers!!

We have a plan!

"Each of my days are miracles. I won't waste my day; I won't throw away miracle."
--Kelley Vicstrom

Jack's platelet count was 24 today!! Even the doctors are excited! We are working on getting the oxygen stuff picked up and tomorrow we are going to the clinic for more labs and a day of paperwork - DISCHARGE PAPERWORK!! Everything will be spelled out on that volume of paperwork - medications, doctor appointments, return visit to Boston, etc. A copy for us, Charlotte doctor, and anyone that I may need on the way home (God forbid!)

Our plan is to work on packing up the apartment today and tomorrow and begin the trek home on Wednesday. We will take our time and just do as much as we feel like.

Jack is on the phone now making his appointment with Dr Parker (our Charlotte doctor) for next week. He needs to see him every two weeks for a month and then monthly after that. We will also get our appointment for July in Boston to see how much progress we have made with all of this. I will have to start planning our trip to the Cape or wherever since I will know the dates.

Needless to say but we are both very happy, relieved and ready to go home!

"Afoot and light-hearted I take to the open road, Healthy, free, the world before me, The long brown path before leading wherever I choose."--Walt Whitman ("Song of the Open Road" Leaves of Grass)

Jack & Cheryl

The promise of a new life. . .

"The future is not some place we are going, but one we are creating. The paths to it are not found but made, and the activity of making them changes both the maker and the destination."-John Schaar

Yesterday we had a long outing since we did not have to go to clinic - took a ride down to Cape Cod. Drove by Nobska Lighthouse, the beach, around Woods Hole, by the Martha's Vineyard ferry, Yarmouth and Hyannis. Jack said that it was his favorite road trip to date. Maybe I will plan a few days at a bed and breakfast in July when we go back for the checkup. (I am planning on doing it before we go to Boston this time - the news from Boston last time did put a damper on the Maine excursion last summer!)

This morning we braved the snow and showed up to the clinic at 9AM. Jack got one bag of platelets (with no adverse reaction [yeah!]) and they removed his central line. We will go back in Monday morning and discuss what the plan is to get us sprung. I even called Blakely to warn her - she is in charge of getting the townhouse sterilized (cleaned, change linens, air filters, etc). Even if we get our note to go home the middle of next week - we will need to watch the weather and it will be a 3-4 day trip since I am the only one that can drive and Jack has his limits to the riding thing.

Will keep everyone posted.

Day + 34

We are watching platelets more than anything right now - his white and red counts are hanging in, we just have to wait to finish the anitbiotics for the infections, pnuemonia, etc and give them some time to get come back on their own without all this extra work to do. We also don't have comparative numbers from last year ( we were already on our way home!)

We have tomorrow off from the clinic (which concerns me because that is always how trips to the hospital start - so let's all cross our fingers that this will go well). Todays platelet count is 10 down 2 from yesterday. The plan is that unless there is a huge increase in the platelet count, on Friday we will be giving Jack platelets (more finger crossing!! and then they are going to remove his central port. It has served it's purpose well at this point and we do not want to leave it in to chance an infection in that.

We just got back from lunch at Whiskeys - Jack even had a meal out of the apartment or hospital. His horizon's are starting to expand a little.

Later we are taking a field trip to take Blakely to the airport - it was nice having her here to help interpret what it is that Jack seems to need at any particular second. I am sure that he will notice the service quality drop that he will experience tomorrow!! He needs to be brought back a little at a time to real life!!

Blakely feels that it is time to prove that I am actually still here taking care of Jack - it can be challenging sometimes but the weather also discourages me from walking out the door and following the street towards the sunset!!

Counts

We are back to watching counts - his white count is 3.0 (normal range is 4.0 - 11.0) and red count is 3.25 (normal is 4.6 - 6.2). These are on there way up and pretty much on schedule considering all the infections and antibiotics supress these from coming back.

The platelets are always the issue for us it seems - right now his count is 12 (normal is 150 - 400 and they will not even think about letting him come home until the counts hit 50). I think that they were considering giving him platelets today in clinic but no one wants to do that. We have to go in tomorrow at 9 AM and take blood again - I am figuring that if there is not some kind of improvement , then he will have to get platelets.

Blakely is going home tomorrow night so we will be left on our own again. Jack is still taking breaks from his O2 (breathing?) but the doctors aren't worried unless he gets dizzy or short of breath so I will let him work that out on his own and see what happens(?)!

Blakely is in charge for a few days

She can figure out Jack's dinner requests that are very random yet very specific at the same time. (Even if she did turn off his O2 the first night!)

We made a trip to the hospital on Sunday - They checked his vitals and took some blood. That was our first adventure out dragging oxygen tanks with us. Today we took a ride to Glouster, MA (had to vacate the apartment for the cleaning ladies). Drove along the beach, stopped for lunch then made a quick driving tour of Boston for Blakely.

We did bring Jack back to the apartment and then Blakely and I went to the Skywalk Observatory in the Prudential Center (50th floor)and got some education (and a drink at the Top of the Hub (52nd floor of Pru)).

Tomorrow is clinic day so I will be able to find out where his counts are now and see what the plan is around the oxygen.

Jack's 3 bastard sons showed up!!

"I cannot even imagine where I would be today were it not for that handful of friends who have given me a heart full of joy. Let's face it, friends make life a lot more fun."--Charles R. Swindoll

Even though the pictures did not come out great - the visit was. These guys are nuts - it was one hell of a road trip but we sure loved seeing them!!

We got a delivery of all this oxygen equiptment last night about 10PM and everything worked great until we fell asleep and the very loud alarm kept going off. It was not a banner night however the tech came back first thing in the morning and switched out the machine (it was not something that I had missed!). Things seem like they are working so far and Gene, Lloyd and Phil even offered to go to the hardware store and get duct tape or gorrilla glue if Jack had a problem leaving the nasel piece in place!!

The guys did get him a new puzzle so that should distract him from pulling out the oxygen.

Jack is napping now from all of the day's excitement and tomorrow I get to bring him into the hospital to visit a nurse and the fellow on call - they did not want to release him for 3 days (another Monday holiday) without someone checking on him. Monday is cleaning day so I will have to take Jack for a car ride or something to let the girls come in and do their thing.

Who would have thought?

Guess who is hanging around the apartment? That is right - Jack got sprung with strict instructions from Dr S to be good.

You will see from the picture that he did not quite get off of the oxygen yet - We are expecting the home health equiptment company to show up tonight between 8 and 9:45 to deliver more portable tanks and a machine for in the apartment. I also have 5 more prescriptions to go downstairs to pick up also.

We have to go into the hospital on Sunday so someone can look at him and make sure he is behaving and then back to the clinic on Tuesday.

A better day

"I think these difficult times have helped me to understand better than before how infinitely rich and beautiful life is in every way and that so many things that one goes around worrying about are of no importance whatsoever."--Isak Dinesen

He must have been on his best behavior because it is Valentine's Day! Still don't have the RSV test results back but the physical therapist girls did hook him up to portable oxygen, put a mask on him and paraded him around the circle that is 7 East. Jack says that it was the Valentines day parade - Jack, the 2 PTs and a nurse. Makes the New Cumberland 4th of July Parade look massive!

Jack was awake for most of the day when I was there today and he assured me that he would be done and ready to go home before the apartment lease is out. Very optimistic today but I am a little skeptical - I guess that is what works for us - a little balance even if it is not a meeting of the minds! It was a least nice to be able to share some of the obstacles that are outside of the hospital room and get a response!

They have reduced his O2 to 2 liters from 5 and his stats are holding there own (not great but keeping the alarm from going off). Kathy Finn came by tonight to take me out for coffee ( Dr S wanted to make sure that I wasn't falling apart so she assigned Kathy to babysit!). Kathy did bring Jack a box of chocolates and brought me a shaving kit - I guess they are worried that I am not shaving my legs since Jack hasn't been out of the hospital for over 2 weeks??!! I did get Jack a meatball sub that he actually ate for dinner - Valentines Day dinners are easier to provide when the hospital cooks set the bar fairly low!

Hope everyone is doing something a little more romantic!! I think that next year - I will have to make the arrangements!

We are starting to push the envelope. . . .

Jack must like to stress me out - he is going to pay for this someday!!

The RSV test should be back tomorrow so we can get a better idea of where we stand. Still have over 2 weeks of medication for the PCP - they did change the antibiotic that they are treating that with since the original one is keeping his counts down. It would do that to anyone that is taking it but we could all handle it better than Jack can right now. I also had Dr S send out a message to Dr Berk since Jack's oxygen stats do not really seem to be improving. I would like to get some answers on this so that I can figure out if the 2 weeks that we have left with lodging up here will be enough or if I should start scrambling now to see if I can extend the apartment for a week or 2 or if I need to prepare to pack up and find a hotel. Jack will not be able to come back to the apartment even until he weans off of the oxygen.

At this point , I have no idea how long we will be up here but as long as Jack gets better and comes back with me, I will work the other stuff out.

still going slow

We are going to retest to see if he is clear of the RSV to see if we can get Jack moving outside of the room - 2 weeks in the hospital has made him very weak. Physical therapy did come in today to work with Jack to start to build up his strength. Need more improvement on the oxygen front as well.



Jack has also had a combination of not eating / or losing what he does eat. We surely have an uphill battle still but on the bright side we are not dealing with any new issues. He will be getting some blood tonight since his red blood cells have dropped - his platelets are also low but since there is no bleeding, we are going to let that go a little and see if they will come up on their own.

It is snowing now so I may be a little later going in tomorrow morning. I am sure that will not be a popular move but it is going to warm up as the day goes on and it will end up as rain so I will have to see what the morning brings. That and my cold still hangs on but it is improving and is not even on the radar in the grand scheme of things.

A little spark at last!

I am not sure if it is the fact that I spent more time then usual outside of his hospital room and he got nervous or what but this evening he was awake for the better part of 4 hours, ate a little (even though that was a short term victory) and he replaced his oxygen after using his nasal spray!

This morning, I did go down to the ER myself to verify that my illness is nothing dramatic. I know have the most expensive cold in history I am sure. Thanks Dr Tedmon for your assistance – and for you to offer up trading the Bahamas for Boston in February. Very kind but aren’t you glad I did not take you up on that one! I thought it was enough when I called you to help us pay our mortgage!! (Luckily I just needed the name of the Jr. High school the he went to with Jack – this is not our usual bill paying computer so it has been asking me random questions).

When I got back from the ER and showed Jack my bracelet he did ask me what room I was in. From there I went back to the apartment – ate some soup, paid some bills and took a nap. When I got back to the hospital for the second time – Jack had taken his oxygen off and tried to explain to me that the nasal spray was the replacement. I checked his stats and his O2 was in the 70’s. I went and got the nurse to correct this – she did tell me that she had been in there lots when I was gone and that he was good - had gotten up and wandered around the bed a little, et. She thinks that he saves all of his foolishness for me!! What a guy!

He is not up to phone conversation still but Mary insisted that I put the phone to his ear so I did and told him to grunt so she would know he was there – I think the pig grunts were a little on the dramatic side and probable scared Mary more than she already is. Sorry, Mary.

Jackie – what you wrote on the blog was very sweet. He has not read it yet but I did tell him about it and he did get a little teary eyed.

When I left tonight, he told me to be careful which was a normal admonishment until about a week ago so at least tonight he is showing signs of his old self. That is great because I missed him!!

There was also a pretty snowfall for my drive home so tonight I will sleep much better than I have in a while!!
Goodnight all.

Lets get the cards & letters coming!!

We are 24 hours into the antibiotic for the PCP and have started a Immune System booster to see if that will help with the RSV. Everyone coming into the room is fairly decked with masks and gowns since we are under airborne precautions. We got moved to a reverse air room to draw out any germs that are flying around and these days there is an abundance.

I no longer have a fever - just sore throat, cough, runny nose and gererally feel like crap. Made a deal with the doctors that I would go home after dinner time and get more rest.

I would say Jack may be about 1% better today. The breathing is a little easier and he is leaving the oxygen on more consistantly. He still seems very down and out of it.

Leslie, I think you might have a great idea since he is too sick to even look at the blog - that if everyone sent cards to him in the hospital then he would know that folks have not forgotten about him and what he still needs to fight though.

The address at the hospital is:

Boston Medical Center

88 East Newton St

7 East, Room 14

Boston, MA 02118-2999

We have diagnoses and a whole new set of challenges

Here is what we have to date:

• Diagnosis #1. Pneumocystis carinii pneumonia (PCP) is a fungal infection of the lungs.PCP is a pneumonia caused by the fungal organism Pneumocystis carinii (now renamed Pneumocystis jiroveci). This organism is common in the environment and does not cause illness in healthy people. However, Pneumocystis carinii can cause a lung infection in people with a weakened immune system due to any of the following conditions:Cancer ,Chronic use of corticosteroids or other medications that affect the immune system HIV/AIDS ,Solid organ a,d/or bone marrow transplant PCP in those with AIDS usually develops slowly and is less severe. People with PCP who do not have AIDS usually get sick faster and are more acutely ill.Symptoms : Cough -- often mild and dry , Fever , Rapid breathing , Shortness of breath -- especially with activity (exertion) Exams and Tests -Sputum induction (to detect Pneumocystis carinii) was how they found it in Jack.Treatment -The main treatment for PCP is with drugs that kill the bacteria (antimicrobial therapy). Antibiotics can be given by mouth (orally) or through a vein (intravenous) depending on the severity of the illness.People with low oxygen levels and moderate to severe PCP often take corticosteroids as well. This is usually a 21 day protocol so I will need to get a better idea of how he is reacting in the next couple of days from the doctor - that may have an affect of whether we are out on the street, if I need to extend the apartment????Outlook (Prognosis) Pneumocystis carinii pneumonia can be life-threatening, and respiratory failure can lead to death. People with this condition need early and effective treatment.
  
• Diagnosis 2-Respiratory syncytial virus (RSV)Respiratory syncytial virus (RSV) is a very common virus. This virus causes mild, cold-like symptoms in adults and older healthy children. It can cause serious respiratory infections in young babies, especially those in certain high-risk groups. (JACK)Causes --RSV is the most common respiratory pathogen in infants and young children. In healthy adults and older children, RSV is usually a mild respiratory illness. Although studies have shown that people produce antibodies against the virus, infections continue to occur in people of all ages.Each year up to 125,000 infants are hospitalized due to severe RSV disease, and about 1-2% of these infants die. Infants born prematurely, those with chronic lung disease, those who are immunocompromised, and those with certain forms of heart disease are at increased risk for severe RSV disease. Symptoms -Breathing difficulty or labored breathing , cough ,Cyanosis (bluish discoloration of skin caused by lack of oxygen) ,Fever .Nasal flaring ,Shortness of breath ,Stuffy nose ,Wheezing Note: Symptoms vary and differ with age. Infants under age 1 are most severely affected and often have the most trouble breathing. Older children usually have only mild, cold-like symptoms. Symptoms usually appear 4-6 days after exposure.Exams and Tests -Rapid tests for this virus can be performed at many hospitals on fluid obtained from the nose.Treatment -Antibiotics do not help in the treatment of RSV. Mild infections go away without treatment. Infants and children with a severe RSV infection may be admitted to the hospital so they can receive oxygen, humidified air, and fluids by IV.A breathing machine (ventilator) may be needed.Outlook (Prognosis) In older children and adults, the disease will usually be quite mild.Some evidence suggests that children who have had RSV bronchiolitis have an increased risk for asthma.
  There is medication for this that is given under a breathing tent - the doctors have called the pharmacy to see if they have any (but since it is usually a kids disease they would need to see if they have enough that would make a sensible dose for Jack). Also this is not the kind of equipment that they use in Boston Medical so there has been discussion of moving him to another hospital for this protocol.
  This can also be transferred so everyone is gowning and masking before going into Jack's room and they wanted to ensure that I was not pregnant since it could cause complications.
  
• 3rd issue - I have been running a fever, sore throat, headache, etc. Not sure what that is about - just run down or what. I did just get a call from one of the doctors that was making rounds and seems Jack was coherent enough to share since the doctor called to find out what is going on with me. If I am still sick in the morning - I guess I will hit the clinic or ER and get a few tests of my own. We are a party kind of couple!
  
• I hope that the antibiotic for the PCP has a dramatic effect in the way Jack feels - my major concern as if the above wasn't enough is his attitude. He has gone too long without feeling well and seems distant from the process. He is usually on top of asking what is going on and what is next, etc but he seems to have lost a little interest. I will have to ask the doctors for an attitude adjustment pill.

Day & 19

Jack was a little less resistant to keeping the oxygen on but we still had a few discussions around it. Nurse Leeann explained to him that if he did not keep it on he would have to go back to ICU or be restained. She loves Jack (they bonded last year when he was a lot more personable than he is now!) and she was concerned and explained to him that without the help his O2 is at an unsafe level and that she was worried about him.

Dr Berk came in for a consult and believes at this point it is a combination of Jack being a shallow breather to begin with and then he came here and they made him sick, gave him lots of fluids and he has been bedridden for a week. They did a cat scan but he said that even though it was a little blurry ( Jack must have moved) that he did not see anything there that really concerned him.

They are still giving him antibiotics in case it is a bacteria that has not shown up yet. I would feel a whole lot better if there was more improvement or if we at least knew more about why his O2 level is sooo low.

As for me - I am exhausted and more than a little frustrated but will keep on keeping on!! Time for dinner and bed!!

An uncooperative patient

"It is easy to dodge our responsibilities, but we cannot dodge the consequences of dodging our responsibilities."--Josiah Stamp

Jack had many tests today and his liver and kidneys are bouncing back nicely.

His breathing however is awful. his chest sounds like an old creaky house with rattling windows. Took more fluid off, more chest xrays, more tests, etc but our biggest challenge around this is Jack himself. He promises the doctors and the nurses the world and as soon as they leave the room he is taking the oxygen off. I put it back on and he yells at me that he is on a break - ( I am thinking that him being on a break from breathing is not a good plan). I feel like I have been fighting with him all day but he will have to get over that. I just hope that this takes turn for the better tomorrow so things will go a little smoother.

I am beginning to get over the pain!

"Giants-Patriots Super Bowl the second most-watched TV show ever
Associated Press
NEW YORK -- The New York Giants' thrilling win over the New England Patriots was the most-watched Super Bowl ever, with 97.5 million viewers, Nielsen Media Research said Monday.
The game eclipsed the previous Super Bowl record of 94.08 million, set when Dallas defeated Pittsburgh in 1996. More people watched Sunday's game than all but one American television broadcast ever, the "M-A-S-H" finale in 1983, which was seen by 106 million viewers.
The game had almost all the ingredients Fox could have hoped for: a tight contest with an exciting finish involving a team that was attempting to make history as the NFL's first unbeaten team since 1972.
But the Giants ended New England's bid for perfection, 17-14. Throughout the game, the teams were never separated by more than a touchdown."

Well since my parents are Giants fans – I guess now I am an orphan and need to get adopted. Anyway it was a good game – a Superbowl that you had to watch until the very end and the Patriots had a great season. George and Terry did suggest that if I had trouble dealing with it that I could steal some of Jack’s meds to ease the pain! Thanks for looking out for me, guys!

Jack’s kidney and liver function are improving. Right now he is starting to develop trouble breathing and a cough because of all the fluids that he has gotten and lying in bed all of the time. He did get moved upstairs and out of the ICU so there will be less things attached to him so maybe we can get him up and around a little more!

Superbowl attire

Jack woke up and reported that the sitter was mean - she would not let him do anything unless a nurse was in the room. Seems to me that she did a great job.

He has been given some lasik to start dealing with some of the fluid that he has collected in his body. He was sounding wheezy and had a cough so we need to make sure the fluid does not collect in his lungs (He got yet another chest xray today). His blood pressure seems to be holding even with the lasik (everything these days is a balancing act) so if all of this holds up we should be kicked upstairs to the oncology unit. As you can tell from the picture, Jack has actually spent some time out of bed today although he can't go far - there are a lot of things tethering him to the bed.

So far we have managed to get some chicken wings and Nurse Debby just came in with some salsa and chips so we are feeling a touch like we are having a normal football day.

Next year hopefully we will be home having a superbowl party at the house with a hospital theme!

This is a more normal state for the last few days. . .

Another Superbowl from the hospital

"The Giants may be a team of destiny but the Patriots are a dynasty."

Jack got his platelets at 10:30 last night and I am pleased to report that it went very well (A non event!). I got ready to leave a little after 11:00 once I was convinced there would not be any adverse reaction (Jack was sleeping) but I had to hang around for another half hour while we found a "sitter" for Jack. He did have a good night - slept well (is still asleep as I type!) and I had no reports of him trying to escape.

I brought him his Patriots shirt and we are all set to go! Will update again later as the day progresses.

Still in ICU - Day 3

Still no fevers and Jack is on oral blood pressure up medicine which seems to be doing its thing until about an hour before his next dose is due. We are managing the in between time with fluids - next week we will have fun taking medication to get all of this extra fluid out of his body - but one thing at a time.

I just took myself an hour nap in this chair so I am less tired but I believe there has been some
permanent damage done from the wooden arm and my ribs not interacting well. There is wireless access from here so I have been able to update the blog but I can't (or am not allowed )to use the cell - I did get caught a couple of times! The best way to communicate until we get sprung is through email (czaney @hotmail.com) or the blog.

Jack has been sleeping for the most part of the last 2 days so that is good. He has had a guard (nursing assistant) stationed in his room for whenever I am not here since he has attempted to get out of bed and has been unhooking all the special monitoring lines and tubes to make a break for it. He is also still fairly confused - complaining that they wouldn't put the flowers on the music (?) and going on about pillow choices 1, 2 or 3??? I am sure he will explain all that when he wakes up more and that it is something that I should be handling but I will need clearer direction!! He has also promised not to get out of bed without help but since he is not making much sense - don't really believe him!

Still nothing from the cultures so the source of the fever is still a mystery. They repeated his bloodwork since his platelets came back at 11,000. If the second result is the same, we will have to go down the path of giving him more - have to weigh that risk with the risk of spontaneous bleeding from the platelets being so low. Results just came back from that - he will need platelets. Let's cross our fingers that that will be as uneventful as when he got them last Monday. The will pre-medicate him with steroids, Bendryl and Tylenol. His white blood count was 1.9 this morning (second result was 2.3) so he will get a growth hormone shot to boost those up some as well.

They have just brought up his gourmet dinner of Salisbury steak (I think?) so I will try to convince him that is work eating and if not - his carnation breakfast.

Still in ICU

Jack hasn't run a fever today (yet - knock on wood) and all of the cultures and skin biopsy have come back negative so we still don't know why he started running them in the first place. His bouts of low blood pressure have taken a hit on his kidney and liver (both are still functioning) so we will learn more on that in the next couple of days. The damage should be able to be reversed and have no perminent affect.


He did not sleep well last night and so has been making up for it today. They put him on the IV blood pressure medicine last night but have since weaned him off of it during the course of today and also he has let go of the oxygen assistance so we are making progress towards getting him at least out of ICU and into a regular hospital room. He has not really eaten too much today since he is sleeping though all the meals - not that he loves the hospital food anyway.


It also seems that in between sleep and awake he is working on all the problems at work - something about the team and calling someone's boss, etc. Nothing real clear but I will be sure to note any break throughs so he will be able to follow up! The doctors asked him who I was when I walked in the room and he did come up with Mrs. Zaney so I will have to make sure that he knows my first name when he wakes up.