We got home around 1PM Friday afternoon and yes it was good to be there, but I already had to take a nap! It's hard work (and stressful!) having to get all the medical equipment delivered and set up, do all the injections, drain flushes, mix and hook up TPN, and everything else on my own!!!
Unfortunately, our time home was short-lived. We didn't even make it 12 hours this round! BUMMER!!!
Ron seemed to be doing well but when I went to do his end of night flushes and Lovenox shot at 10:00 PM, I noticed he felt really warm. He said he felt fine, just a little headache but I took his temp anyways and it was 102.4. We were both rather surprised so decided to wait 10 minutes and take it again; this time it registered 102.7; at which point I decided maybe I should try another thermometer just to make sure. It took a little while to find another thermometer and when I finally took temp it came up at 103! I once more took it with the first thermometer and it was still 103! It has now been an hour so I called Dr. Shires number. Dr. Shires is gone for a few days but one of his partner's, Dr. Hagood, immediately returned my call and said because Ron's is such a complicated case, we needed to get to the emergency room. Of course, throughout this time I'm thinking...why did I not think to have them prescribe Tylenol suppository when we discharged from hospital to keep on hand??? (since he cannot take anything orally and you can't put anything in through TPN line, it's the only way feasible). Ron was insistent he did not want to go to ER and was wanting me to call the doctor back to see if there was anything else we could do! Obviously, I vetoed that idea!
After packing up a few days worth of clothes, toiletries, laptop and phones, I got Ron settled in the truck with an ice pack on the back of his neck, a cold wash rag on his forehead and a lollipop to make the ride a little easier.
Oh, what a night it was! We arrived at the ER at 12:15. They took him back to a room around 12:40 and then we began the process of recounting his medical history...ALL of it; first to the nurse then to the doctor. Of course, they felt it's most likely related to his most current hospitalization but must have everything to make concrete decisions. They did 3 rounds of blood tests, a urinalysis, CT, and chest X-ray. The CT showed no signs of abscess, chest x-ray looked fine, but urine showed signs of being a little dehydrated and his blood work showed a rather elevated white blood cell count and elevated creatanine (kidney levels) . His blood pressure was staying in the low 80's over low 50's and heart rate in the 120's which are other indicators of dehydration. They gave him 2 boluses of IV fluid (run bag of IV fluid into him at a very fast rate) and finally moved him to a room about 9AM. (Some of the waiting was for shift change to take place so they would have more staff on 6 West to be able to get him in a room up there). We were both exhausted!!!!
I must have looked especially lovely since every nurse/tech/doctor we encountered on 6 West said "Christie, you need to go get some rest!"
We dozed off and on throughout the day between doctor's visits and nurse's and techs doing their things. Dr. Liddell (infectious disease), Dr. Hagood (Shires partner) and Dr. Lee (Dr. Arslanlar's--GI-- partner) all came to see him throughout the day. Feeling was, PICC line must be the culprit. They also put him back on the anti-fungal since that's most likely the type of infection since it is hard to get rid of and very susceptible when on long term TPN. I finally left to get a very late lunch/early dinner and shower (yes, I was in the same clothes I'd been in since Friday morning and it is now Saturday evening!) and of course they came to take him to IR to have PICC changed.
They were so sweet last night to make sure all his meds, shots, blood sugar, vitals, etc were done at 11PM with instructions not to wake him until 5AM when blood draws are done.
Hallelujah, Hotel Presby was not booked...my same room was still open!...so I was able to get a much better night's sleep, too.
Today, he has had no fever and his white blood cell count has gone down quite a bit. BP is still slightly low but not too bad and not needing any intervention. He's feeling pretty good and has enjoyed spending Father's Day watching the US Open. All the kids came up so we had a good visit while Ron enjoyed opening all his cards and gifts. We, except Ron :( enjoyed yummy desserts R&S brought back from their engagement party in Florida. A&K had to leave early afternoon to head to Abilene for the night and then they will head to Lubbock for a couple of days.
Tomorrow, Ron goes back to Interventional Radiology for another scheduled fistula-gram. Hope is to downsize drainage tube again.
Prayer requests:
RESTORATIVE SLEEP! Still trying to get caught up after pulling the ER all-nighter
Tomorrow's fistula-gram
Definitive answers from blood cultures
A&K as they travel and seek God's wisdom
Good night! I'll try to send an update tomorrow after Interventional Radiology!
Love, Christie
My devotional that day was especially appropriate as I was able to share it with Ron when we were traveling back to Presbyterian Friday night.
"My peace I give you." John 14:27
Two painters were once asked to paint a picture illustrating his own idea of rest. The first chose for his scene a quiet, lonely lake, nestled among mountains far away. The second painted a thundering waterfall. Beneath the falls grew a fragile birch tree, bending over the foam. On its branches, nearly wet with the spray from the falls, sat a robin on its nest.
The first painting was simply a picture of stagnation and inactivity. The second, however, depicted rest.
Rest is not some...feeling that comes upon us.... It is a state of calm rising from a heart deeply and firmly established in God.
Henry Drummond
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