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Almost Home… I Hope

4 Aug

Things are looking up!  Jody’s desensitization process went well and since then, he has been receiving the antibiotic in question without complication.  Although his condition has been downgraded (meaning he is less critical), he remains in the ICU because the hospital is full and there is no bed available for him on another unit.  We are hoping he will be discharged either Monday or Tuesday, but we have learned from past disappointment not to count on discharge until the actual order is written.  Once home, he will continue his IV antibiotics for probably another two weeks.  He has become quite proficient at administering his home IV’s, and can do so independently, so it is sometimes frustrating to be sitting in a hospital doing what could be done at home.

I was able to stay with Jody over part of the weekend, and he is in good spirits.  I’ve teased him that he is not allowed to pull any stunts that will buy him more time in the hospital simply because it’s the start of “Shark Week” on the Discovery channel (which we don’t get at home).  All kidding aside, he is anxious to be home and to spend time with our girls (remember, he was just away from them for our two weeks in Israel, and then hospitalized the day after we got back).  I know our girls are ready to be back in their normal routines, and to have their Daddy home again.  Hopefully tomorrow will be the day?!

Desensitization

1 Aug

This afternoon Jody was finally moved to the ICU so desensitization could begin.  This is the process of re-exposing him to one of the medications suspected of causing his anaphylactic reaction.  The procedure begins with small, gradually increasing doses of the medication and will take eight hours to complete.  Every 30 minutes for the eight hours his dose is increased.  Should any of these dose increases be missed, the entire procedure needs to be restarted.  This is one of the reasons they decided to move him into the ICU.  There, Jody is his nurses’ only patient and she can keep a very close watch on him, as well as keep up with the frequent dose/bag changes (she has 14 bags of the antibiotic to hang throughout this process).  The hope is that after this is finished his body will again accept this medication without complication.

Jody is about four hours into this procedure and so far things are going well.  But then again we really don’t know if this is the med that caused the anaphylaxis in the first place.  The problem of identifying which was the culprit is that they were given around the same time; one, the new one, was given orally, and the other, the old one, was given intravenously.  This desensitization process is being done on the old (meaning, he’s had it many times in the past), IV drug.  At this point they have decided not to reintroduce the oral drug, and will replace that one with another IV one.  It is unfortunate though because the oral antibiotic is said to work better at treating the infection then the IV med they are replacing it with, plus, there is less risk for damage to the kidneys.  And some of you know that Jody has a history of acute renal failure related to toxic levels of antibiotics.

Whether or not this is the drug that caused Jody to stop breathing, we are thankful the desensitization seems to be going well.  I am praying that Jody get’s a good nights sleep (despite all the interruptions), and on the contrary, that his nurse stays alert to all the frequent medication adjustments required of this process.

Anaphylaxis

31 Jul

This morning started out quite eventful for Jody.  He was given his first dose of antibiotics (one new to him, and one old) and went into anaphylactic shock.  This is a severe allergic reaction which can be life-threatening.  Jody’s tongue and throat swelled, so much so that it blocked his airway, and he briefly lost consciousness.  A code team was called and they were ready to intubate him (put a tube down his throat so he could breathe), when he finally started responding to the medication given to reverse the reaction.  Praise the Lord for his protection over him!

We naturally assumed this reaction was related to the new antibiotic, however, the physicians feel it could also be from the old one (one Jody’s had many times).  An allergist came to see Jody today and explained that sometimes, and for no apparent reason, the body can develop a reaction to medications taken without harm in the past.

Jody’s team of doctors feel it is important for him to receive both of these antibiotics in order to fight the infection in his lungs.  It was decided that he will be moved to the ICU (as soon as a bed opens up), where he can be closely monitored as they attempt to reintroduce these meds.  The challenge will be to figure out what dose to give and how fast to infuse them so that Jody doesn’t experience this reaction again.  If everything goes well, his stay in the ICU should be for a minimum of 24 hours.  Please pray the doctors hit the nail on the head the first time around so that Jody doesn’t have any repeat episodes.  Also pray for peace for Jody when the antibiotics are restarted.  Thanks for reading, and thanks for your prayers and words of encouragement.

Back to Reality, Back to the Hospital

30 Jul

Yesterday we returned from our trip to Israel.  I thought my first post back would be about how great the trip was (which it was), and about how much we did and saw (way too much to cover in one post), but instead I’m writing to inform you that Jody is in the hospital.

First of all, I want to say how very proud I was of Jody throughout this trip.  A Holy Land tour is by no means relaxing. It requires lots of walking, stepping, and hiking up mountains with sometimes little breaks in between.  There were many times throughout the trip when I (and others) felt tired, or winded from the climb.  At such times I would look at Jody, making the same trek, but with only 35% lung function, and my heart would fill with pride and admiration.  I know it wasn’t easy for him, and we took “breathing breaks” for him to catch his breath, but he always pushed on, and did so without complaint.

During the last week of our trip I noticed that Jody seemed to be coughing more.  I wanted to believe that it was from all the activity of the day loosening things up, but I had my suspicions.  Further into that week I thought he sounded “junky,” and seemed to be a little more short of breath than normal.  A few random checks of his oxygen level (we had packed our portable SpO2 monitor) showed his oxygen level, although not alarming, was a little lower than normal.  All in all, he seemed to be well (not nearly as “sick” as I have seen him with infections of the past), so it’s easy to rationalize things to be okay.  But, I have learned that the signs of a CF infection can be very subtle, and I am starting to be able to pick up on those subtle changes in Jody.  I also know that left untreated, a CF infection can progress rapidly, and quickly takes a lot out of a person.  Because there are no flashing red lights over Jody’s head indicating when he gets sick (although I really wish that was the case), and because I have seen the results of waiting too long to call, I have learned to err on the side of caution, and call the doctor sooner rather than later.  This morning Jody made the call, and after being seen in the CF clinic, the decision was made to admit him to the hospital.

It’s hard to say where this infection came from.  Jody’s doctor felt he probably had something brewing even before our trip, but that the activity of the trip may have exacerbated it.  He was glad we were able to take this trip, and said we should have no regrets about it, which we don’t.  How could we?  How could we regret walking on the steps that Jesus walked, or being baptized in the Jordan river, or renewing our wedding vowels, or taking a boat trip on the Sea of Galilee?  Infection and all, there are no regrets!

Practical Ways to Support Someone in the Hospital

13 Apr

Illness is hard!  Hospitalizations are stressful!  Whether a hospitalization is the result of a one-time episode of sickness, or frequently as the result of a chronic illness, they are always difficult.  Having experienced this in our family, I have learned some things along the way; things I wish I had known before now, things I wish I would have done differently to help others battling illness.  Almost all of us will either experience time in a hospital or know someone who is or does at some point in our lives.  The intent of this blog post is to give you ideas of practical ways you can support the people in your life who are walking through sickness.

1.  Encouragement – Acknowledge the tough time they are experiencing, and let them know you care.  This can be done through cards, emails, phone calls, texts, and visits.  This really does make a difference, so don’t hesitate to send repeated words of encouragement.

2.  Prayer – An illness/hospitalization affects the whole family, so pray for everyone involved, and let them know you’re doing so.  Instead of simply saying, “I’m praying for you,” let them know how you are praying specifically.  Here is an example from an email I received the last time my husband was in the hospital, “I’ve been praying for you a lot, hoping that you can find God’s peace in the midst of the storm.”  It’s easier to believe you are being lifted up in prayer when people tell you specifically how they are praying.

3.  Provide Meals – Meal planning can be a daunting task when things are well, so as you can imagine, it becomes a real burden when a loved one is sick and/or hospitalized.  Providing meals allows the family to focus their energy on more important tasks.  Please note that it is unnecessary to bring a fancy three course meal; a simple main dish is blessing enough.

4.  Acts of Service – Think of practical things you can do that will lighten their load.  We have had friends shovel the snow off our driveway in the winter, and mow our lawn in the summer.  This may have seemed a small task for them, but it was a huge blessing for us.  Once, while my husband was in the hospital, we even had a friend call to say she wanted to drop off a “few” things from the grocery store.  When I got home this is what I found (and this picture doesn’t even show the food in the fridge and freezer).

5.  Be the Initiator – Forgo the natural tendency to say, “If you need anything, let me know.”  While well intended, this statement is not overly helpful.  It is very hard to call someone and say, “Will you bring me a meal?  Will you mow my grass?  Will you watch my children?  Etc…”  Instead, offer a way you are able to help.  Examples include specific dates you would like to drop off a meal, or days you are free to help with childcare.

6.  Practical Gifts – Aside from the obvious cost of medical expenses, a hospitalization is not cheap.  Typically it involves a lot of driving back and forth (and therefore multiple tanks of gas, particularly when a distance is involved).  There are the costs of parking for days on end, meals for the non-hospitalized visiting family member(s), and in my husband’s hospital, there is a daily fee for the use of the room phone and TV.  If you are in a position to do so, consider giving a practical gift such as snacks for the bedside, a card for the caregiver with $5 that says, “You’re next (hospital) meal is on me,” a gas gift card, and/or any other creative idea you can think up.  Gifts do not need to be extravagant to say that you care.

7.  Fun Gifts – Lying in bed (or sitting at the bedside) day after day can get quite boring.  I was once really excited to receive a Taste of Home magazine and my husband has been given woodworking and home renovation magazines as well.  Crossword puzzles are another example of fun gifts.  One friend of ours often gives us crafts for our kids to do at home.  This gives them something fun to do while their Daddy is hospitalized, and keeps them occupied for whoever is watching them.  Consider this gift for your friends with children, and especially for children you know who are in the hospital.

8.  Don’t forget – A hospitalization places a lot of stress on a family.  At times it can feel like ones world is being turned upside down while everyone else keeps on living their normal “happy” life.  While life cannot (and should not) stop because you have a friend who is sick, don’t forget about the hard time they are experiencing.  Continue to encourage them, even when you don’t get a response.  Remember, they have a lot on their plate, and are probably being inundated with phone calls and messages.  Responding to each of those can be time consuming, but I can assure you from personal experience, your messages will be listened to, read, and appreciated.

I hope this post has been helpful in giving you tips on how to support people you know going through a hospitalization.  My husband and I are so thankful for the friends and family in our lives that have, and continue to, stand beside us, support us, and encourage us during periods of illness.  The support of people who care makes all the difference in the world.

Disclaimer: The opinions in this post are mine and may not be the same as those of others experiencing illness and/or hospitalizations.

Discharged

23 Mar

Farewell Hopkins

It’s been 10 days since Jody was admitted to Johns Hopkins, and he is finally home!  The last few days progressed as we had hoped; uneventful.  His nebulizers, physical therapy & chest PT’s were all well tolerated.  There were no more episodes of bleeding.  His pain is gone, and although not perfect, his breathing is better, just like the doctors predicted would happen with time post embolization.  Jody will continue to do another week of IV antibiotics here at home, and will begin pulmonary rehab a few weeks after that.  We have a follow-up appointment in the CF clinic next week.

Once again we want to thank everyone for the support we received.  We enjoy reading your comments and knowing that you are praying for us.  Thank you for the phone calls, visits, meals, help with babysitting, gas gift card, and to those who contributed to our extra special blessing from Victory Church, we don’t even know who you are, but thank you nonetheless.  This support makes going through a difficult time, a little less difficult.  We know that the road ahead of us is going to be hard, and that hospitalizations will most likely become more frequent.  We will need your continued support to help us through those hard times, and we hope you are up for the challenge.

A Good Day

20 Mar

Today was a good day.  Jody’s oxygen saturation is improving, so he spent most of the day off oxygen.  This afternoon he walked around the unit for 10 minutes with physical therapy.  This was his first activity since the bleeding the other day and he tolerated it pretty well.  His oxygen level does drop with activity, but for the most part, he is asymptomatic with it.

This evening Jody was transferred back to a regular room.  I imagine tomorrow they will start his nebulizer treatments and chest PT’s.  He is now off all continuous cardiac and O2 monitors so he is feeling rather free and is looking forward to a “real” shower.  He won’t be missing this less-than-private sink cabinet/bathroom all-in-one in his previous room.  There’s nothing like sitting on the toilet when a doctor walks in.

IICU "Bathroom"

We’re thankful for a good day, and are hopeful this is a step in the right direction.  Please pray that the increased activities tomorrow will also be well tolerated, and without another episode of bleeding.  Thank you for all the comments, words of encouragement, and prayers, they are all so appreciated.

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