A Note from John!

Currently I’m in the process of regaining strength and rebuilding my immune system. I am no longer on any medication, but have a long way to go before I’m at 100%. My immune system is such that if I don’t watch my diet or physical limitations I can easily get sick quickly. Pray for me to know my limits since I will/have tried to do too much too fast, and pray I don’t put myself back in the hospital for not taking my recovery seriously. It’s been difficult for me to make the adjustment from my active self to the life of a patient, and so making the adjustment is proving just as difficult.

I want to thank everyone who has been praying for me throughout this uncertain time. The amount of people who have contacted me or my family to let me know that I am in their prayers has been mind-boggling, and I am eternally thankful. Most of all, I want to thank my family for being the perfect model of support and encouragement throughout this entire experience. - John

We're thankful that the doctors gave John a clean bill of health, but he was asked to lay low for several more weeks before doing anything. His immune system was shot to begin with, and the strong antibiotics and steroids also took a toll on it. It seems that any time he tries to actually DO anything, John gets a sore throat, cold, or upper respiratory something or other. I think I'm going to hold him captive until spring!!!

Thank you, so much everyone, for your prayer support. Now that the worst has passed, I have come to realize how physically and emotionally exhausting this ride has been, and just how much the Lord carried us through it all! Love and appreciation to you all! ♥ - Kerry

Home again, home again, jiggedy jig...

So. John is home. (Here is where we insert the big sigh of relief.)

When John's blood cultures returned negative, the doctors began to suspect that the Zosyn was causing his low white blood count. Once they removed both antibiotics from his treatment, John's white count began to rise and his fever left. He was discharged Wednesday afternoon taking only the Lovenox injections. And, he only has one more of those to go, until he's done with them! After a month of being poked and prodded with sharp objects at regularly scheduled intervals, it will be a welcomed relief for John to be able to relax and recover. We are all hoping for some much needed rest in the days ahead!

Thanks again, dear friends, for your concern and for your prayers! ♥  

I am boasting...

If I were to label today, it would be called "chaos." At least, that's what it felt like.

John texted me this afternoon with the news that he wouldn't be coming home, because his fever had returned. Sigh.

Ron & I didn't get in to see John until after 6 this evening, so today we received the nurse's update. She read the doctor's report to us, but she couldn't really answer any technical questions we had concerning the report. This is what we learned:

• John's white blood count is still low, platelets are low, but RBC is "okay." This is all pretty general, and I hope to get more details tomorrow.

• The doctors are looking at the Zosyn as being the cause for his low white blood count, so they took John off of it.  

• John's evening "drip" of Vancomycin was skipped, because his blood work showed that the level of it in his bloodstream was too high. They are planning to put him back on a lower dosage of Vancomycin tomorrow morning, but in the meantime, John is running a fever once again.

• So far John's blood cultures have been negative, eliminating MRSA from the culprits. Phew. However, we are waiting to see what else might grow on the cultures and the PICC line itself. It takes at least three days for that, so I suspect that John won't be coming home tomorrow either.

• John is exhausted and only has short periods of time where he has any energy. He is becoming pretty discouraged and is still sleeping most of the time.

We are working with an infectious disease doctor and an internist at the moment. I'm no doctor, but I'm wondering if we shouldn't be focusing on his blood chemistry instead, since they aren't finding any pathogens. I think I'm ready for a second opinion. Anybody know where Gregory House REALLY practices?

The chaos comes into play whereby our house is in shambles with two major rooms emptied into all the others because of work being done by our contractor, who discovered more major electrical issues to deal with in addition to the project he was hired to do. While this is no surprise to us or anyone else who knows our house saga, it is difficult to keep on top of this and John. Additionally, I took a trip to the doctor's with Josh, who is now on amoxicillin for a sore throat, swollen tonsils, and fever of 102 and who has been told to stay home from school and work until Friday.

2 Corinthians 12:9 says, "And He has said to me, "My grace is sufficient for you, for power is perfected in weakness." Most gladly, therefore, I will rather boast about my weakness, so that the power of Christ may dwell in me."

Back to the hospital they go...

Well, John's back at Chester County hospital.

Yesterday as the day progressed, John wasn't feeling real great. In addition to his stomach bothering him, his temperature was climbing slowly into a low grade fever; and after everything he's been through to date, the doctor didn't want to wait until this morning to see him. So, around 11:00 last night Mom and Dad and John were off to the hospital.

In the ER they did bloodwork and discovered that his white blood cell count was low.  His PICC line had started causing some discomfort and had some white marks on the skin around the site, so they ended up taking that out and putting in a regular IV. He also had a chest x-ray and a number of blood cultures done. They won't get results from the blood cultures for 48 hours, so they're saying he'll be in at least through Tuesday.

In the meantime, they've decided to start treating for MRSA.  In addition to the blood thinners and antibiotics that he was already on, he's now also on Vancomycin to treat that. However, as soon as they started administering that his arm was itching and he started getting hives.  Apparently Vancomycin can cause irritation in the veins and is really intended to go into a PICC line. But, since they'd just taken out his PICC line, they opted to move his IV line into a bigger vein in his upper arm, cut back the dosage, and put him on Benadryl.

Sometime today he's supposed to see a hematologist and an infectious disease doctor, and hopefully we'll know something more definitive when the cultures come back on Tuesday.

Mom and Dad didn't get home until 6:30 this morning, so they're both still catching up on some sleep.

Please continue to pray: that the cultures would show something definitive, that everyone would get the rest that they need, that John wouldn't react to the new drugs he's on, and ultimately, that John would heal and return to good health.

Thank you!

The Status Quo.

We are so thankful for the progress John has made over the past several weeks. We've had several visiting nurses, but Frank is the one we are seeing on a regular basis. Frank has been a great combination of empathy and quality care, and he is the perfect personality to be caring for John. We like him A LOT. This is a good thing, because John continues to have some trouble with his PICC line site bleeding, and as a result, we see him quite frequently.

John is still a very sleepy guy, but he continues to gain a little energy and strength each day. Some of the difficulty John is experiencing now is sleep related. Since he has to take meds every six hours (taking around 45 minutes to an hour for the whole process), it's difficult to get that 6 am session administered on time and to stay awake to disconnect the line when it's empty. (He actually slept through his antibiotics this morning for the first time.) In addition, because John can't do much physically, he spends a lot of time during the day snoozing in front of the TV, and this affects his ability to sleep at night. 

I just scheduled three follow-up appointments, the first of which is on October 31st with the hematologist. I'm hoping we'll get news that the PICC line can be removed and Lovenox discontinued at that time. Ten more days!

John is starting to think past the immediate situation to the future. He is hoping to find a full time job, so that in January he can work by day and attend evening classes. We are praying that God will open and close the appropriate doors and make His way crystal clear.

Thank you, friends, for caring! ♥

John Update

A number of you have contacted us recently asking about John, and now that I am a little more rested and have gained a tad more brain power, I thought I'd post an update.

John has been home from the hospital for a week now, and things have been relatively uneventful.  John is still exhausted and spends most of his time sleeping or watching TV. Jen teased him yesterday about doing something "more productive," but he said he's so tired and it's hard to get motivated to do or think about anything, even just to read. He's struggling with having to administer his meds every 6 hours -- having to be up at midnight and then again at 6 am.  (It takes about 45 minutes for the IV to complete.) John says he feels like all he's doing is waiting to administer the next IV or injection.

The visiting nurses are scheduled to come out to draw blood once a week (to check that the blood thinners are working and make sure his kidney and liver function is normal), but they have been here two additional times in the last week for problems related to the PICC line.  He's had bleeding at the site, which has required more frequent changing of the dressing and is a concern because of the blood thinner; and John is currently experiencing numbness in his fingers, which we are hoping is not a symptom for other complications.  John is still not out of the woods when it comes to the possibility of the clot moving to another area of his body where it could be life threatening (the lungs in particular), and the drugs he's taking and the PICC line itself are not without risk either.  Plus, even though they made a diagnoses, the particular pathogen which caused this syndrome was never identified.  Thankfully, though, the antibiotic he is taking now has been effective thus far.

We continue to be blessed by the outpouring of support: the prayers, meals, calls, visits, texts, etc. Thank you all so much especially for your prayers -- Ron and Jen both came home today with stories of people praying for John from all around the country, and John was pretty amazed by that.

Thank you! ♥

Testing. 1. 2. 3.

I am not a writer, and therefore do not intend to become a blogger.  Why then, you might ask, did I start a blog?  I am actually "pseudo-blogging" - that is, blogging for technical and design reasons - not because I have anything profound, creative, or exciting to share.  At least for the moment. ♥