April 16th…has been a pretty good day


I am still home. Lea headed off to Lubbock this morning to spend the weekend with Greg. I kept Catey (Lea’s 6 yo. daughter) today, while Brian and Brayton (Lea’s husband and oldest son) worked to clean up the mess at our shop. 70 mph straight winds ripped off a good portion of our roof, and it’s quite a mess.

The first report from Lubbock today came from Terry May, who has been staying with Greg this week. What a great friend. He headed home today, and before he left he told Greg he was leaving, and Greg opened his eyes, and Terry told him he would see him when he comes home. He said he thought he nodded at him, but he wasn’t completely sure.

Well, when Lea got there, she confirmed that he is nodding a little now, in response to questions. She said it’s a little dip of the chin. He was really moving both of his arms around again today. She said he is using his right arm a lot, and even rubbing at this eyes and the corner of his mouth with it, and scratching at his nose. She said once, he even had both index fingers stuck in his ears. We aren’t sure what that was about. She said it appears that he is trying to use his shoulders some, to readjust himself.

Lea was saying a prayer with him, and when she said Amen, one of the pulmonologists said “amen” with her, and nearly scared her to death. She hadn’t even realized he had come in. He said he is breathing totally on his own, just a little pressure support from vent, and said he is looking better every day. When he left the room, he raised his hand up and said “we’ll keep the prayers going”!

The nephrologist came by later, and they started the IV fluids this evening. He said if his numbers continue to decrease (creatinine, BUN), that he may get to go to a Tues/Thurs dialysis instead of Mon/Wed/Fri. Will just have to wait and see what the labs look like on Monday.

Back to my day here, Catey and I enjoyed our time together. This afternoon, I decided that I would see if she wanted to work on some quilt blocks with me, and she did. She loves crafty things.  I have been trying to squeeze in my blocks every month, for my guild’s Block of the Month challenge, and so far have managed to get them done, even though I haven’t been to a meeting since January.  I did the cutting and the “steering”, while Catey pushed the “gas pedal” for the sewing machine. She loved working on these with me. I may have a new quilter in the making. :-)

Here is a pic of the rest of the blocks I have completed, thus far.

Today sure has seemed like it was more good news than bad, and for right now, I will be thankful for that, and keep hoping and praying for more of it!

May Have Found a Piece to the Puzzle


Blood cultures revealed a fungal infection in Greg’s blood, and on the tubing of the central line they removed.  It’s a systemic yeast infection.  They started him on antifungal med today.  This is certainly a very serious situation, and am hoping and praying they caught it in time, that it responds to the medicine, and that we will see rapid improvement. It could be the cause of his respiratory distress, fever, and a few other symptoms he has experienced.

Being on the steroids, as well as strong, broad spectrum antibiotics for extended time period would have made him susceptible to this, as well as having a central line, and catheter, and being in ICU for as long as he was.  Any could be the culprit.

Updates


I’ve really been struggling with caring for Greg, myself, daily life, and keeping updates going out to everyone.  The blog updates have been very neglected.  I decided this morning that I could copy paste my recent Facebook updates here, to get my blog readers up to speed.

So, starting from right after the second craniotomy, and moving forward til today, this should get my blog readers up to speed.  It has been a very difficult road we are on, and the end is not yet in sight.

February 22, 2011: My sweetheart made it through his second craniotomy. Still have a tough recovery ahead, but surgeon still optimistic for good outcome. Sedated tonight.
February 23, 2011: Greg is still sedated and on vent, but surgeon came by and said CT scan looked beautiful. No leaks! Hopefully, will come off sedation and vent tomorrow. PTL!
February 23, 2011: Is feeling encouraged! They woke Greg briefly and he responded to commands. He will remain sedated and on the vent through the night.
February 24, 2011: He wasn’t quite strong enough to come off the ventilator this morning. Please pray for his respiratory funtion and strength to be restored soon!
February 25, 2011: Praise God!! Greg is awake and off the ventilator!! He is very weak but what a wonderful way to start the day! I am so happy!
March 1, 2011: Was hoping Greg would be much better by today. Still refusing to eat. Still complaining of pain. And just not himself at all. Praying these issues resolve soon.
March 1, 2011: Whenever Greg sends me roses, he always sends me peach roses. Today, on our 14th anniversary, I got three bouquets from family and friends. Two of those have roses. One has big roses, one has mini-roses. They are all peach. No one knew. What are the chances?
March 2, 1011: They have had Greg on Keppra, to prevent seizures. His behavior issues are getting much worse, rather than better. After researching this drug, I began to question them about it this morning, pointing out that his issues seem much more than a little frontal lobe aggravation. They are taking him off of it today. I am praying it is the answer to what is going on with him. Anyone have experience with this drug?
March 2, 2011: Greg is back on a ventilator this morning after going into respiratory distress last night, and again early this morning. We don’t know exactly what is wrong.
March 4, 2011: Greg got off the ventilator this morning. So far so good. Still don’t know exactly what went wrong. Just making it moment by moment.
March 4, 2011: Greg had a better day today. I am feeling hopeful again! Please keep the prayers coming! Thank you all!
March 7, 2011: Everyday is hard for and with Greg right now, but I do think we saw some small improvements yesterday. I am sad to have to take my friend Jill to the airport this morning. She has been a great cheerleader and comfort to me the past three days.
March 8, 2011: Greg seems to be the mystery patient. Now the term being used is failure to thrive and he is being evaluated for a long term acute care facility. Prayers plz.
March 9, 2011: Thanks for all the birthday wishes, cards, and blessings. I truly appreciate each and every one. The hotel mailbox was full of mail for me yesterday. Greg is back on ventilator today. Doctors are working hard to try to find cause of his problem.
March 11, 2011: Greg was moved to the Covenant Specialty Hospital (Long Term Acute Care Hospital) this afternoon. His surgeon assured me that they believe he will come back to us, but it is just going to take awhile. He said he believes that his body is just beat completely down. I came home today, his sister is with him, and Terry May is staying the night in his room with him. My deep appreciation to both!
March 12, 2011: Update from Lubbock today is Greg is more alert and responding to his sister and Terry May, who went to visit. Terry told him he was going to call me and asked him if he wanted him to tell me he loves me, and he nodded his head yes. He is on the lowest ventilator setting and they expect to have him back off of it soon, and then he can start talking again. But, I’m so happy for open eyes and head nodding right now!
March 13, 2011: Specific prayer request for Greg this morning: Please pray that they will figure out what keeps causing him to go into respiratory distress so that they may resolve the problem. He had another episode in the night, and they had to increase the ventilator setting again. Please pray for wisdom for the doctors.

I thank you all for your concern and your prayers.  I will try to keep the blog updated a bit better.

Good News (sort of)


Well, we got the go ahead on surgery tomorrow.  So, the tumor will be dealt with, once and for all.  However, the white blood cell count did not come down much, leading surgeon to believe it has nothing to do with infection, but possibly a bone marrow disorder of some type, such as leukemia.  So, surgery will proceed, and more testing will be done while in the hospital to determine what is going on with the blood count.  I’m hoping he is just having an extreme reaction to the decadron (steroid) they have had him taking.  He has had bad side effects from day one.  It will raise your counts, but not usually to the level of Greg’s.  That’s where we are now.  One thing at time.  And right now, it is goodbye brain tumor time!

Inside My Husband’s Head


Literally.  Now we have a visual of this unwelcome intruder inside Greg’s head.  The surgeon let me snap some quick photos of the MRI with my phone.   It is the blob between his eyes, and infiltrating the sinus cavity below.  We have our surgery date.  On January 28th, this thing is going to get eradicated! The surgeon feels very confident that he is going to be able to get him all fixed up! He may lose his sense of smell, and that’s sad…but, the least of what it could be.  We can live with that.

So, if you wish to see….

In this next set, I have drawn circles around the whole thing. The darker area in the bottom area of the tumor, in each photo, is the sinus cavity, that the tumor has infiltrated.  It has grown through the bone to invade that area.  The part that is mushrooming up is putting the pressure on the frontal lobes, and causing most of him symptoms.  It is causing swelling, especially on that right side where it has grown up farther.

The surgeon said he has treated one that had actually grown down the patient’s nostril.  At least Greg’s hasn’t gone that far yet! Looking at these photos, I can’t even imagine that.  I think I’m feeling a little more peace about it, and Greg seems somewhat  relieved this evening, as well.  At least we have a plan and a date!  Again, thank you all so much for the prayers and well wishes! I can’t express enough how appreciated they are and have been.

Follow

Get every new post delivered to your Inbox.

Join 39 other followers