Under Control, 2 weeks after surgery

It looks like her nausea is under control, finally.  It must have been the vancomycin that caused it, and the extreme weakness.  Yesterday, she was able to walk down the hall 3 times, and shower, and tolerate feedings.  She got stronger and more steady with each walk.  Her infection in the face looks better and better as well.  She still feels wiped out, and keeps signing that she's "done with this!"  But once we get back over to the Ronald McDonald House, she'll be fine.  Today marks 1/3 of the way through the 6 weeks of having her mouth wired shut.

Dr. Franks just came in and said that if she has a good day today, he'll release her to the RMH tomorrow.  So Katie is all for that, and will make sure she has a good day, just so she can get out of the hospital!  I asked if we'd lost any bone healing time due to the infection, and he thinks not.  So 6 weeks is still the goal - one month from now.  Even though they'll treat it as if it was a bone infection, it likely wasn't - they just want to ensure they treat it aggressively so as not to have further problems.

All's looking brighter.  Thanks for your prayers.

Bacteria ID'd & PICC line

The cultures from her face came back today, and specified e coli and candida as the two main culprits infecting Katie's face.  That kind of surprised me - I'd never heard of contracting e coli other than from eating undercooked food!  However, in researching it a bit, "These bacteria can also cause infection of the prostate gland (prostatitis), gallbladder infection, infections that develop after appendicitis and diverticulitis, wound infections (including wounds made during surgery), infections in pressure sores, foot infections in people with diabetes, pneumonia, meningitis in newborns, and bloodstream infections. Many E. coli infections affecting areas outside the digestive tract develop in people who are debilitated, who are staying in a health care facility, or who have taken antibiotics." (Merck Manual).  I guess it is definitely contractable from surgery.

So they changed her antibiotics to target these two bugs very specifically.  It has wiped her out - she had no energy at all today, though I did finally convince her to take a short walk this evening.  Then we played a game of chess and watched a movie, plus a sweet video of Cami's family that she sent to us.  She's started wanting to drink, but can only swallow very small droplets of water from a straw at a time.

She got her PICC line inserted today, as she'll have to be on these antibiotics for 6-8 weeks.  We have to be very aware of any nausea, because since her mouth is wired shut, vomiting would be dangerous, as she could inhale it through her trach.  So we have a pair of wire cutters by the bed, and if she has to vomit, we are to cut the mouth open to allow proper expulsion.  But they want to avoid that at all costs!

Katie is still very discouraged - any notes of encouragement directed to her personally would be appreciated.  You can Facebook, Instagram, SnapChat, email, text, or use any other form of contact.  She likes getting messages on her phone.  Email me if you'd like her contact info:  whick@juno.com. 

Drain Removed

The drain that was put in during
surgery on Saturday and removed
today, because it wasn't effective.
The washing out of the infected
area was effective, however.

Evidently, the drain they put in the side of her face during the surgery on Saturday wasn't working as advertised, so Dr. Franks took it out at her bedside today.  That wasn't pleasant!  The infectious disease Dr (Richardson?) said they haven't yet got a firm ID on the "bug" that has attacked her face, but there are a "lot" of different bugs growing in the petri dish.  She says that's a bit unusual for a facial infection, but may indicate there was some communication between the mouth cavity and the jaw joint during the initial surgery, as the mouth DOES have many varieties of flora growing in it.

She can't tell if any of the infection has entered the bone, but thinks at this point that there are good signs that it has not:  no fever, and a much improved look to the infected area after only 48 hours. In any case, whether it's only affected soft tissue or not, she'll be on strong antibiotics for an extended period.  The vancomycin really zaps her strength! Her intestines started working today, so there's another sign of progress.

I extended my stay here for another week.  I hope things are more settled by then.

- Glenn

Improvement

Today, Katie made some good improvement.  She's back to eating (Ensure, on the pump), she showered, she sat up in the chair for 3 hours, and the swelling and redness has diminished.  They took her off one of the 3 antibiotics they had her on, and her pain has been under control.

I've made arrangements to postpone my departure from here (Charlotte, NC) to next week so we can get her out of the hospital and back to the Ronald McDonald House (RMH) before I leave Pam and Katie alone here for the remainder of her recovery.  There is no way we could do this without the both of us while things are so critical.  Once we get a good routine going at the RMH, then I think Pam can handle it.  But right now, there is so much that needs to be done at night, and one person can't handle the care both day and night.

Thanks for your prayers - they're working!

Dreaded Infection!

After KT got out of the tub this morning, her FIRST morning out of the hospital, Pam noticed an abscess forming on her left jaw.  NO!  We've been here before in 2011 - not a happy development.

Dr Matthews is evidently out of town, so he sent Dr. Franks right over to the Ronald McDonald House to examine her.  He said he needed to aspirate the cyst in his office to see if it was clear fluid, or pus.  So we went on over there, and sure enough, it was purulent, full of infection.  So he readmitted Katie to the hospital tonight.  Katie was beside herself with grief!  Since she's been through infection from a previous surgery, it really scares her.  Surgery is scheduled for 0730 tomorrow for Dr. Franks to go in and reopen her up and clear it all out surgically.  We're hopeful that it hasn't compromised the new bone in her jaw.

This is all twisting, turning journey that we'd have love to have avoided.  I called the local Bishop today and he sent over the missionaries, who helped me give KT a blessing.  Please keep her in your prayers.  And thanks for the emails, cards, texts, SnapChats, and packages that you've sent.  They have all helped to keep her hopeful.  But I will say, she is extremely discouraged right now.

DAY 7: Discharge!

KT is so thrilled to be able to transition to the Ronald McDonald House today!  It is such a comfortable place, and they have therapy dogs that come each week to visit with patients - how do you beat that?!  Plus, it has a tub, and although she won't be able to fully submerge, because of the rib incision, she will be able to soak the lower half of her body.  They removed the bandage from her chin this morning, change her prescription from Loritab (it gives her a bad headache), and got everything else in order for us to go "home."  It'll be nice to be off this night shift - I feel like a zombie...

Ok, for some humor:  since KT's jaw is wired shut, she cannot speak, so she uses her iPad app to do text-to-speech.  For several days, she used a British female voice, which was sometimes hard for me to understand, so yesterday, she switched it to a deep male British voice.  Imagine me dozing off in the middle of the night, and suddenly being brought to consciousness by the deep male voice saying, "Sorry, Daddy, but I have to go potty!"  Oh, man, it just made me laugh!  My goodness, it's nice to find humor in what has been a very stressful situation.

I got my ticket last night to return to work on the 5th of January.  It'll be hard to leave Pam & KT here alone for the last month of her jaw being wired, but it will work.  When I come back to get them, maybe we'll go do something fun together here on the East Coast.

She's got a long way to full recovery still, but things are going in the right direction, for which we are very grateful.  Thanks for your prayers in her behalf.

DAY 6: Discharge Soon?

EVERY single time I got KT settled down last night, someone came in to disturb her and woke her up.  She didn't have a very restful night for that reason - our timing was off horribly!  But...I monitor her pulse rate pretty closely all night, and last night was the first night it has ever gone below 100 bpm, which is a sign that her pain is decreasing overall.  In fact, at one point early this morning, I saw it at 67 bpm, which is pretty normal.  She was resting so well at that moment, and of course, someone came in and woke her up.  If it's not the main nurse, it's respiratory, or labs, or vitals, or housekeeping or something else.

Saline solution for hydration,
and feeding tube for milk. If
she can get discharged today,
we'll blow this joint!

Her sense of humor is coming out on occasion, though she still feels pretty sorry for herself: "Why do I always have to be in pain?"  She says she's ready to blow this joint and get over the the Ronald McDonald House (RMH), so we'll see what the Dr. says today.  Her swelling has definitely gone down, and the regular nebulizer treatments have thinned out her mucous substantially, so no more troubles with plugged trachs.  I think we could handle her care from the RMH, which would make her so much happier (and us)!

Her blood pressure is still pretty low, but we went for a good walk this morning.  She's not as dizzy, just weak.  It's nice to see her giggle every once in awhile now while watching a movie (The Avengers).  I'm getting QUITE good at understanding her sign language now, if I do say so myself, though she continues to use the text-to-speech app on her iPad when I don't quite get it, or when she communicates with the nurses.

We had a SECOND fire alarm on the 3rd floor last night!  Crazy.  Seems very unusual to have two fire alarms in one night from the same floor, different hallways.  Haven't seen Dr. Matthews yet this morning. Pam's been working on getting the equipment and other supplies needed for us to care for her from the RMH.

Thanks for your prayers - things are definitely improving!

DAY 5: Trach Scares!

KT must have a lot of thick junk in her lungs, because we keep having panicky incidents where she gets a trach plug and cant breathe. This hasn't been such a problem during previous surgeries, because she usually has her mouth to breathe through as a backup, but since it's wired shut, her trach is her only source of air.  I've handled 2 incidents on my own (I'm on the night shift), and Pam's handled 3 such emergencies during the days.  When it happened again this morning, I hadn't yet put my leg on, so I frantically tried to get my leg on while hopping over to grab the replacement trach to change it out, and KT really got hyper-panicked!   I yelled out the door, "EMERGENCY!" and I found out why they have a Quick Response Team!  Within SECONDS there were 6-8 people scrambling into the room, including an ENT Doctor, and they took over for me.  KT finally coughed up a big clog, and then everything started settling back down, but it spooked her badly.  She's had a pounding headache all day from that scare.

She has 2 of these battery-powered electrodes to
control pain on her rib harvest sight and one on each jaw.

Dr M believes the swelling has peaked and will decrease from here.  He is concerned about the firmness of the gland area under the left jaw area and started antibiotics today as a precaution.  Her blood pressure has been a bit low for 24 hours now (~90/60), so they've stopped the IV medication Dilaudid.  That also puts her a step closer to being able to come home to the Ronald McDonald House, which is only 3 blocks from the hospital.  She's light-headed when she walks, but her rib pain has significantly reduced, which is great news!  I think the little battery-powered stimulators that Dr. Matthews put on her ribs during surgery (see photo to the left) really helped accelerate that part of the recovery process.  Two days later, he put the same little gadgets on each of her lower jaws, but they haven't seemed to be as effective in that location, for some reason.

She's been quite loopy today, but Pam and she had a calm day since the trach incident this morning, which happened before Pam got here.  KT showered and walked today.

They just had a fire alarm on the 3rd floor of the hospital.  They told us to stay put and keep our door closed. We're on the 5th floor.  15 minutes later and I haven't even seen a fire engine!  Weird.  

Day 4: Post-Christmas

She had a very rough Christmas night. Her swelling and pain are still very high. I keep hoping we're about to the turning point. She's scared, but there's no real sign of infection; just a low-grade fever of 101.7 that's persisted for over a day now. The nurse (named "Honor") was so worried she called Dr Matthews early this morning and he added a med - phenergan.  She went right to sleep within 4 minutes of the dose, and has now been asleep for over 2 hours. This is the first sleep other than 2-minute naps she's had all night. Please keep up your prayers, and include a request that she can get over her fears. She's been through some pretty rough recoveries before; thus, the anxiety.

Day 3: A Hospital Christmas

Katie didn't sleep very well last night, but she was calm. We watched "A Christmas Story," which doesn't deserve it's place in classic films, IMHO.  She's started getting tube feedings, which is increasing her strength. She's used ice packs, which have reduced her swelling. Still dealing with a low-grade fever, but no one seems to be too concerned - seems to be considered normal post-surgery. She's getting stronger, and walking helps clear her lungs - been suctioning a lot.  Pain is still a significant issue - I think we'll be in the hospital at least one more night.

Nothing else to report.  Have a wonderful Christmas, and thanks for your prayers!