For avid Internet users, those that are familiar with the shortcuts used in blogs or forums, "T&P" usually means "Thoughts and Prayers." It's expresed when people learn of tragic situations, illness, passings, etc. In this case, "T&P" means Therapy and Pathology. -- physical therapy and speech pathology. However, we welcome the original intended use of "T&P" as well.
We are starting with physical therapy.
We answered some general information questions. Then the therapist took measurements to get a baseline of where Jennifer is currently. After contemplating the dire physical consequences that awaited me, I decided not to take a picture of Jennifer in the contraption they strapped on her head. The contraption was a series of rulers and compasses (mathematical and magnetic) used to measure distance and angles relative to a starting point. She looked like she was wearing a GPS device that was invented before the advent of electricity (and satellites). Instead, Jennifer assured me I could take a picture next time. I think she may have just said that to postpone the inevitable.. I will get a picture at some point. I have a new mission. ;-)
It turns out that Jennifer can only swivel her head about 90 degrees.....40 to the left, and 50 to the right. You need about 120 degrees of coverage to drive safely. So, it looks like I will be "Driving Miss Jenny" for a little while. Fine with me, I'll get to wear a golf cap.
After the baseline, we went over a series of arm, head/neck, hand, and lip exercises to stretch muscles and get them back to where they were before. pucker..smile...pucker...smile...pucker..smile, left, right, up, down. Jennifer can already feel a difference.
We then scheduled for the next two months. Twice a week therapy.
We discussed the Epstein Physioplasti mask for treating lymphedema, but the physical therapist was out of stock. Jennifer really wants one to get rid of the double chin she has now. I told her that, once the lymphedema swelling is gone, she won't have an excuse for any double chin that hangs around. That got me a dirty look....there's the look I'm use to seeing. Jennifer is back, baby (insert fist pump here).
The physical therapist prescribed a giant wedge to help support the upright position when sleeping. At the end of the day, we carried it around the hospital like a prize "Look Jennifer! I finally won you a giant stuffed animal. Too bad it's in the shape of a giant three dimensional scalene triangle.". Jennifer used it when napping today. She LOVED it. I wish we would have had it about three weeks ago. It would have saved a bunch of fitfull nights. Oh well. Here's to fewer sleepless nights.
We then booked it to the speech pathology appointment, 5 elevatore over and 10 floors up. MD Anderson is its own metropolis.
Speech Pathology:
We asked our questions: When does swelling go down? How do I eat red beans and rice? My tongue's tired (I know. It's a statement.). How am I progressing?
Jennifer has a little lymphedema, so we are scheduled to see the lymphedema certified pathologist next week. It's Brad, the original pathologist we saw. We like him (not to take away from Denise, the current one. We like her too.). We learned that part of the massage therapy for lymphedema is to retrain the body to ship its waste via alternative channels than the now-blocked channel.
We then worked on sounds (s, d, t). Jennifer's doing great with them, but needs to work on her tongue therapy (I have ideas ;-), but I digress). I still have to practice on my sounds.
Swelling of the tongue should still go down, but may require lipo if not down in three months. Personally, it's looking much better than the first two weeks.
She was given the green light to eat a cheeseburger. Funny, the therapist said to start with fast food burgers because they are generally smaller/thinner and greasier. You know....pink slime and all.
For that matter, she was given the green light by the therapist to try anything....only to stay away from popcorn, nuts, and chips for the near future. I am no longer the Food Nazi. Chapter closed. Now I will be Awnold Swartzenhoelscher, the physical trainer.
A little side note: Jennifer was having problems with the red beans and rice. The therapist called it scatter food because it scatters when it gets in the mouth. Cornbread does the same. The tricks are to put scatter foods into a medium that will hold them together: red beans and rice -- squish the rice into the beans; cornbread -- lots and lots of butter; Mexican food -- put the Spanish rice into the retried beans. Better yet, try to stay away from the dry rices and stay with the soft, sticky rice.
All-in-all, the consults were good and we have some direction on what to do, and how often. Jennifer is motivated to push through this. I can't wait to see the response from the therapists next week when we start the marathon schedule.
Thanks to everyone for the T&P. Coworkers for helping pick up the slack, etc. I only wish Jennifer would have gotten me something for my birthday....all she does is hang around and do nothing all day. Geez....Just kidding people. I don't need anything, I have her and the kids.
Till next time....take care all. We are.
Thursday, June 28, 2012
Tuesday, June 26, 2012
Thanks Kids
I just have to say thanks to the kids for making this easier.
Cat's done a great job of helping out around the house while I've been back at work. Everything from entertaining the boys, especially Jake, preparing lunch, and putting the boys to bed allows us to take care of other things in the short amount of time we have in the evenings.
The kids in general have helped clean the house, even though they tend to mess it back up within an hour or two of "being let loose.". :-). As it's always been.
Cat is even working, I believe in conjunction with her friends, on a new story. I'm plugging it here....www.wattpad.com. Search for "the mythology games.". It's a work in progress. It's influenced by several well known stories, including The Hunger Games and Percy Jackson.
On to Jennifer.
We have appointments with the therapists on Thursday (speech and physical). Jennifer's been sore and has a limited range of motion in her neck and arm. Hopefully we'll get some additional pointers on exercises and techniques to improve her motion with minimal side effects (i.e. pain).
I will say that she is trying hard to improve her movement. She is also trying to work around the house where she can because she gets bored being home-bound. Again, thanks to the kids for helping when she's "on a mission."
Other than the soreness, the skin graft is looking good...I think. Heck. Never really saw one in the healing process before so I can honestly say its the best I've seen. It really does appear to be healing nicely and she's able to "air it out" all day long. However she has some pain in the wrist and the general area. It could be due to the natural atrophy of the skin graft. We'll confirm this week. I told her to quit using that arm to spank the kids and give it a chance to heal.
The trach hole had finally stopped wheezing about a week ago, so we think it's closed up. That's good. It's worse than me snoring......geez. Lighten up. I'm kidding. Nothing's worse than me snoring.
The neck: We are worried about lymphedema, a condition where the lymphatic system is unable to drain fluid from tissues, usually due to an obstruction. She still has some swelling in the neck region, which we know will go down in due time. The therapist will show us some massage techniques. She also has limited motion on the side-to-side and up-and-down motion of her head. Part of that is due to the trauma of the surgery, the other is for fear of undoing the healing progress so far. Again the therapist will identify her limits so she can push but not undo.
If you recall from earlier posts, there are three sets of nerves that are impacted by a neck dissection. One affects arm movement, the other affects feeling on that side of the face and the ear, the third affects that side of the mouth/lip.
Well, I mentioned the limited range of motion -- the arm is still restricted as she can't lift it beyond a certain point or, as we found out, she can't extend it beyond a certain point if it's in a certain position. Wow...just really observed that today.
The ear. Oh the ear...for those that knew me growing up, I can tell you some ear stories. Unfortunately, Jennifer has to experience the wrath of the ear at a different level. Her ear is still numb. Yet, it hurts to touch. (hypersensitive?). Just the slightest brush is painful. I think it's good that she has some feeling, per se. However, we have a new set of questions to ask the doc.
Now the mouth. The left side of the lower lip and cheek kind of drags when she smiles. I personally believe its getting better. At what rate, I don't know.
We live in a world of instant gratification. This is a true test of patience and endurance. We had two great weeks of progress post surgery. The last week and a half seems, on the surface, to have stalled. We keep having to remind ourselves that we are encountering minor victories each day....and that is progress. Ben and Jake's karate instructor is always pointing out the minor victories of her Tiny Tigers class. I'll do the same for my surgical Tiny Tiger, Jennifer.
On the brighter side: a few weeks ago, we had gone back to the plastic surgeon. He indicated jennifer should stay on liquids for a few days, then escalate up to soft foods gradually. Jennifer was successful eating a diced peach in front of the speech pathologist at the time. Let's recount what she ate these past few days: pasta shells with Alfredo sauce (soft), Boost (liquid), waffle with peanut butter (gross and probably considered soft), a cookie, baked beans (still hard to eat because they turn to a paste), mashed potatoes, and, to top it off, chicken strips (Chik-fil-a, and Whataburger), and porcupine meatballs (meatballs with rice). For the record, I protested the chicken strips because I consider them hard (with the crust), but she did a great job. I am no longer the food Nazi. I'm more like the food Rent-a-cop...I can tell her to stop, but am unable to enforce it (STOP!!!! OR I'LL...I'LL...get on my walkie talkie.). Sigh.
Thanks to all for your prayers. We still ask that you continue as we are not out of this yet. We have ultrasounds scheduled for mid-September to ascertain what to do about the presence of the thyroid cancer cells. Although I've left him off the last several posts, I'm copying the prayer to Saint Perigrine below.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Cat's done a great job of helping out around the house while I've been back at work. Everything from entertaining the boys, especially Jake, preparing lunch, and putting the boys to bed allows us to take care of other things in the short amount of time we have in the evenings.
The kids in general have helped clean the house, even though they tend to mess it back up within an hour or two of "being let loose.". :-). As it's always been.
Cat is even working, I believe in conjunction with her friends, on a new story. I'm plugging it here....www.wattpad.com. Search for "the mythology games.". It's a work in progress. It's influenced by several well known stories, including The Hunger Games and Percy Jackson.
On to Jennifer.
We have appointments with the therapists on Thursday (speech and physical). Jennifer's been sore and has a limited range of motion in her neck and arm. Hopefully we'll get some additional pointers on exercises and techniques to improve her motion with minimal side effects (i.e. pain).
I will say that she is trying hard to improve her movement. She is also trying to work around the house where she can because she gets bored being home-bound. Again, thanks to the kids for helping when she's "on a mission."
Other than the soreness, the skin graft is looking good...I think. Heck. Never really saw one in the healing process before so I can honestly say its the best I've seen. It really does appear to be healing nicely and she's able to "air it out" all day long. However she has some pain in the wrist and the general area. It could be due to the natural atrophy of the skin graft. We'll confirm this week. I told her to quit using that arm to spank the kids and give it a chance to heal.
The trach hole had finally stopped wheezing about a week ago, so we think it's closed up. That's good. It's worse than me snoring......geez. Lighten up. I'm kidding. Nothing's worse than me snoring.
The neck: We are worried about lymphedema, a condition where the lymphatic system is unable to drain fluid from tissues, usually due to an obstruction. She still has some swelling in the neck region, which we know will go down in due time. The therapist will show us some massage techniques. She also has limited motion on the side-to-side and up-and-down motion of her head. Part of that is due to the trauma of the surgery, the other is for fear of undoing the healing progress so far. Again the therapist will identify her limits so she can push but not undo.
If you recall from earlier posts, there are three sets of nerves that are impacted by a neck dissection. One affects arm movement, the other affects feeling on that side of the face and the ear, the third affects that side of the mouth/lip.
Well, I mentioned the limited range of motion -- the arm is still restricted as she can't lift it beyond a certain point or, as we found out, she can't extend it beyond a certain point if it's in a certain position. Wow...just really observed that today.
The ear. Oh the ear...for those that knew me growing up, I can tell you some ear stories. Unfortunately, Jennifer has to experience the wrath of the ear at a different level. Her ear is still numb. Yet, it hurts to touch. (hypersensitive?). Just the slightest brush is painful. I think it's good that she has some feeling, per se. However, we have a new set of questions to ask the doc.
Now the mouth. The left side of the lower lip and cheek kind of drags when she smiles. I personally believe its getting better. At what rate, I don't know.
We live in a world of instant gratification. This is a true test of patience and endurance. We had two great weeks of progress post surgery. The last week and a half seems, on the surface, to have stalled. We keep having to remind ourselves that we are encountering minor victories each day....and that is progress. Ben and Jake's karate instructor is always pointing out the minor victories of her Tiny Tigers class. I'll do the same for my surgical Tiny Tiger, Jennifer.
On the brighter side: a few weeks ago, we had gone back to the plastic surgeon. He indicated jennifer should stay on liquids for a few days, then escalate up to soft foods gradually. Jennifer was successful eating a diced peach in front of the speech pathologist at the time. Let's recount what she ate these past few days: pasta shells with Alfredo sauce (soft), Boost (liquid), waffle with peanut butter (gross and probably considered soft), a cookie, baked beans (still hard to eat because they turn to a paste), mashed potatoes, and, to top it off, chicken strips (Chik-fil-a, and Whataburger), and porcupine meatballs (meatballs with rice). For the record, I protested the chicken strips because I consider them hard (with the crust), but she did a great job. I am no longer the food Nazi. I'm more like the food Rent-a-cop...I can tell her to stop, but am unable to enforce it (STOP!!!! OR I'LL...I'LL...get on my walkie talkie.). Sigh.
Thanks to all for your prayers. We still ask that you continue as we are not out of this yet. We have ultrasounds scheduled for mid-September to ascertain what to do about the presence of the thyroid cancer cells. Although I've left him off the last several posts, I'm copying the prayer to Saint Perigrine below.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Friday, June 22, 2012
Week-end recap.
Jennifer's doing well. Went to the funeral of a co-worker's spouse today and is now tired. Though and prayers to Linda.
This weekend is the final swim meet for the kids. Divisionals. All the teams in our league compete at one meet for bragging rights. Although signed up, 6:45 start time is awfully early tomorrow, so we may "accidentally" miss. I could use the rest.
My next post will most likely be on Thursday at our rehab and speech pathology consults.
Everybody have a great weekend.
This weekend is the final swim meet for the kids. Divisionals. All the teams in our league compete at one meet for bragging rights. Although signed up, 6:45 start time is awfully early tomorrow, so we may "accidentally" miss. I could use the rest.
My next post will most likely be on Thursday at our rehab and speech pathology consults.
Everybody have a great weekend.
Thursday, June 21, 2012
Finally took it easy
Jennifer took it easy today. Apparently did nothing. She said she felt a lot better.
I do nothing a lot of times, but I'm still tired. I don't get it?
Next week is rehabilitation and speech therapy. We can't wait.
I do nothing a lot of times, but I'm still tired. I don't get it?
Next week is rehabilitation and speech therapy. We can't wait.
Wednesday, June 20, 2012
Mid-week update
Things are going well. Unfortunately, it's the last week of swim team and our best intentions to get the kids to practice has fallen short...still too much going on. This weekend is Divisionals, which starts early and should finish early.
I'm slowly catching up at work, with a few hiccups. Jennifer is still a few weeks from driving, so we have a captive audience here. The neighbors are helping out, which is either preserving Jennifer's health, or the kids' health -- I haven't figured it out yet.
Jennifer's still working on the spring cleaning. I'm trying to keep her grounded and to go at a slow pace -- clutter is good....right?
Anyway, we're both tired, but life is falling back into place (we'll still be tired--heck..4 kids will do that.).
I'm slowly catching up at work, with a few hiccups. Jennifer is still a few weeks from driving, so we have a captive audience here. The neighbors are helping out, which is either preserving Jennifer's health, or the kids' health -- I haven't figured it out yet.
Jennifer's still working on the spring cleaning. I'm trying to keep her grounded and to go at a slow pace -- clutter is good....right?
Anyway, we're both tired, but life is falling back into place (we'll still be tired--heck..4 kids will do that.).
Saturday, June 16, 2012
Saturday update
It's been a long day. Had Grace and Ben at our swim meet at 6:15 this morning. CUDAS were winning when the meet was called due to lightning in the area. Personally, the kids sowed obvious signs of not having practiced in two weeks. Divisional meet is next Saturday, so we'll try to get the kids to some practices. All of the coaches have asked on Jennifer's health, as well as some gymnastics friends who happen to be on the opposing swim team.
Jennifer's coworker brought ALOT of food from chik-fil-a and Lubys. We ate well tonight, and wil have leftovers for tomorrow...yes.. I ate a lot. Jennifer has eaten quite a bit too....Mac and cheese, green beans, pasta.....all moving along. Btw, another friend brought pizza yesterday....again, we ate a lot.
Jennifer is trying to get back into normal routines again. In addition to rehabbing, she's in a spring cleaning mode, albeit a lighter version as I don't want her to over-exert. At the end of the day, she is showing signs of pain, so she needs to slow down a little.
She's still wheezy in the throat, which keeps us on our guard. Her skin graft to the arm is looking better every day. We'll conti ue the dressing for another 4-5 days, then allow it to be exposed for extended periods.
A couple of side notes: I'm trying some new formats on the blog site. I hope it makes it more eye friendly.
Also, since we are through the worst of it, I may slow down on the posting so I don't bore anyone to death with meaningless rambling. However, I reserve the right to post whenever I feel like it. How's that for washy-washy?
We thank everybody for their prayers and support. We ask for your continued prayers as Jennifer rehabs. We still have a long road to travel.
Jennifer's coworker brought ALOT of food from chik-fil-a and Lubys. We ate well tonight, and wil have leftovers for tomorrow...yes.. I ate a lot. Jennifer has eaten quite a bit too....Mac and cheese, green beans, pasta.....all moving along. Btw, another friend brought pizza yesterday....again, we ate a lot.
Jennifer is trying to get back into normal routines again. In addition to rehabbing, she's in a spring cleaning mode, albeit a lighter version as I don't want her to over-exert. At the end of the day, she is showing signs of pain, so she needs to slow down a little.
She's still wheezy in the throat, which keeps us on our guard. Her skin graft to the arm is looking better every day. We'll conti ue the dressing for another 4-5 days, then allow it to be exposed for extended periods.
A couple of side notes: I'm trying some new formats on the blog site. I hope it makes it more eye friendly.
Also, since we are through the worst of it, I may slow down on the posting so I don't bore anyone to death with meaningless rambling. However, I reserve the right to post whenever I feel like it. How's that for washy-washy?
We thank everybody for their prayers and support. We ask for your continued prayers as Jennifer rehabs. We still have a long road to travel.
Friday, June 15, 2012
Good Friday (No, it's not Easter, but it could be.)
Today is a very good Day for Jennifer.
We received a call from the Physician's Assistant this morning. The surgeon consulted with his colleagues yesterday morning. The PA gave us the recommendation made by the colleagues:
NOTHING.
Really. Wow. Actually, it requires a little longer explanation:
Otherwise, we are on hold for now, which is a good thing. We still have to go through the rehab tho.
Not so great news -- Took the kids to the dentist. Ooooohhhhh we have a lot of work to do on them. More about brushing techniques than anything.
Jennifer tried red beans and rice from Popeye's (love that chicken from Popeye's). It didn't work too well, so I got to eat the red beans and rice. Awesome. Oh. Back to Jennifer. She's not ready for that yet, but it will come. Time of the boost.
We received a call from the Physician's Assistant this morning. The surgeon consulted with his colleagues yesterday morning. The PA gave us the recommendation made by the colleagues:
NOTHING.
Really. Wow. Actually, it requires a little longer explanation:
- Squamas Cell Carcinoma -- The encapsulated cell found in the immediate Lymph Node - was removed during the neck dissection. So, in their opinion, they consider this sucker gone. Done. Kaput. See ya-Not. Adios. Good-bye.
Cancer. - Papillary Thyroid Carcinoma -- Due to the size of the finding, and the fact that this was extremely random that they discovered the cells in the Lymph Nodes, the colleagues also feel that they may have gotten this out with the neck dissection. So they recommend just keeping an eye on the situation for the time being.
Otherwise, we are on hold for now, which is a good thing. We still have to go through the rehab tho.
Not so great news -- Took the kids to the dentist. Ooooohhhhh we have a lot of work to do on them. More about brushing techniques than anything.
Jennifer tried red beans and rice from Popeye's (love that chicken from Popeye's). It didn't work too well, so I got to eat the red beans and rice. Awesome. Oh. Back to Jennifer. She's not ready for that yet, but it will come. Time of the boost.
Thursday, June 14, 2012
2 Week Anniversary
We're almost back to normal for a brief moment. I went to work. Jennifer obviously stayed home.
But, a lot has happened in the few hours after I arrived home.
I grabbed the iPad to review the blog and create a post. Yes....my posts have been created on the iPad, so the formatting is not as diverse as if using a desktop, and the autocorrect setting probably has made for some interesting reading, as I have not proofed most of my posts.
Back to my story....I grabbed the iPad and noticed a HUGE series of cracks going across the bottom and up the side. The corner is also crushed. AAAAARRRRRRRRRGGGGGGHHHHHHHHH! Apparently Jake brought it with him when the babysitter took them to the library today. He dropped it on the concrete......aaaaarrrrrrrghhh. Just frustrating and annoying. Aarghh. Okay. Moving on.
Jennifer had a good day. She's working on her jaw and arm therapy, to get back her range of motion due to the nerve trauma. We were talking this evening and then Jennifer had a slight whistle ---out of her throat. Whoa. Strange. We decided to tape some gauze over it just in case. Our neighbor came by to look at it (she's a nurse). Apparently it's not completely closed yet, but that comes with time. Just weird to experience. Reminds me of the waiting room scene in Beetlejuice when the "dead lady" was smoking and the smoke was exiting the hole in her throat. Hmmmmmmmmm I wonder if Jennifer would be willing to smoke a cigarette and reenact that scene? Hey...I'm just wondering!!
Other than that, the arm looks great. Much better than even yesterday at the hospital.
She's sounding great (except for the wheezing through the neck).
She's also eating well. Eggs, soup, etc. I am a bit concerned that I have been referred to as the Food Nazi (No Food For You!!!) by someone who is working to subvert the healing process by giving Jennifer ideas on how to circumvent the required dietary restrictions (you know who you are). That aside, all is going well.
Nothing new on the thyroid front. Have not heard from the doctor today. I do have a coworker whose daughter has the same thyroid cancer and is about to go through surgery and treatment in the next couple of weeks. Our thoughts and prayers go out to her and her family. Same goes to a neighbor that we learned has been battling cancer for a couple of months.
Tomorrow is the dentist. All four kids. Jake's first time. I am steeling myself for the lecture for whatever bad habits the kids have developed. Jennifer gets to sit this one out...why me???? ;-)
This weekend, another swim meet, then hopefully some down time.
Thanks to all for the thoughts and prayers, the help over the past few weeks, the help around the house (food, cleaning, laundry, mowing).
But, a lot has happened in the few hours after I arrived home.
I grabbed the iPad to review the blog and create a post. Yes....my posts have been created on the iPad, so the formatting is not as diverse as if using a desktop, and the autocorrect setting probably has made for some interesting reading, as I have not proofed most of my posts.
Back to my story....I grabbed the iPad and noticed a HUGE series of cracks going across the bottom and up the side. The corner is also crushed. AAAAARRRRRRRRRGGGGGGHHHHHHHHH! Apparently Jake brought it with him when the babysitter took them to the library today. He dropped it on the concrete......aaaaarrrrrrrghhh. Just frustrating and annoying. Aarghh. Okay. Moving on.
Jennifer had a good day. She's working on her jaw and arm therapy, to get back her range of motion due to the nerve trauma. We were talking this evening and then Jennifer had a slight whistle ---out of her throat. Whoa. Strange. We decided to tape some gauze over it just in case. Our neighbor came by to look at it (she's a nurse). Apparently it's not completely closed yet, but that comes with time. Just weird to experience. Reminds me of the waiting room scene in Beetlejuice when the "dead lady" was smoking and the smoke was exiting the hole in her throat. Hmmmmmmmmm I wonder if Jennifer would be willing to smoke a cigarette and reenact that scene? Hey...I'm just wondering!!
Other than that, the arm looks great. Much better than even yesterday at the hospital.
She's sounding great (except for the wheezing through the neck).
She's also eating well. Eggs, soup, etc. I am a bit concerned that I have been referred to as the Food Nazi (No Food For You!!!) by someone who is working to subvert the healing process by giving Jennifer ideas on how to circumvent the required dietary restrictions (you know who you are). That aside, all is going well.
Nothing new on the thyroid front. Have not heard from the doctor today. I do have a coworker whose daughter has the same thyroid cancer and is about to go through surgery and treatment in the next couple of weeks. Our thoughts and prayers go out to her and her family. Same goes to a neighbor that we learned has been battling cancer for a couple of months.
Tomorrow is the dentist. All four kids. Jake's first time. I am steeling myself for the lecture for whatever bad habits the kids have developed. Jennifer gets to sit this one out...why me???? ;-)
This weekend, another swim meet, then hopefully some down time.
Thanks to all for the thoughts and prayers, the help over the past few weeks, the help around the house (food, cleaning, laundry, mowing).
Wednesday, June 13, 2012
Happy Birthday Grandma (updated 4:15pm)
Happy Birthday Grandma. I hope you have a great one.
Jim T. My deepest sympathies over the loss of your mother. Jennifer and I offer our thoughts and prayers to you and your family.
I couldn't post last night because heavy storms knocked the power out in the Spring area. However, we had a nice evening.
I was able to go to work with the comfort that that Cat and a neighbor were watching over Jennifer, who is already getting along well.
The grandparents returned the boys to the house. Since the power was out, we decided to go out to eat......along with everybody else in a 10-mile radius. Everything was packed. The girls won and we went to a Mexican restaurant. It was a very good meal. I had fajitas. Jennifer had...the juice from the charro beans. Grace said it tasted like the beans dirty bath water (and I always tell the kids not to drink the bath water). I was kind and did put a little queso on Jennifer's spoon.
Unfortunately, the feeding tube is still bothering her (dang you Jim Gaffigan). We think, rather than moving in the esophagous, it may have twisted and bunched up a little. She decided to go with a tube feed because it was iritating her throat to swallow. We'll check with the doctor today about the tube situation.
The power was still out when we got back to the house around 10:00 pm, but came on about 30 minutes later....thank goodness, the kids were running my batteries down and we had all the candles lit...our house smells like one of those craft shops.
I started to get the tube feeding set up. Poured the liquid nutrition into the IV bag and was ready to flush the tube with tap water. However, I couldn't get the dang thing open. It's a simple concept. The stopper to the tube is the same type that you have with blow-up toys (balls, water wings, etc.). All you have to do is grab the tab, and pull the stopper out of the hole. IT WOULD NOT BUDGE!!! I worked on that stupid thing for thirty minutes and it did not move a millimeter. I have blisters on my thumb and index finger trying to work it out. I used pliers (needle nose AND regular). I tried to lubricate with corn starch...which worked on the outside, because I couldn't get a good grip after that. Finally, we just gave up and she drank a Boost. Unfortunately, no pain meds tonight...but she said she didn't need them.
I would venture to guess that, after the subterfuge with the Cheetos and other things that she probably did behind my back that......stay with me on this.......SHE SUPERGLUED THE STOPPER TO THE TUBE. That's the only conclusion I can come up with....throw away logic that states some of the medicine is indeed sticky and may have just sealed the stopper to the tube......I'm going with the theory around superglue.
Finally, after that battle, I still had to change the dressing on her arm. I see a slight change in the area of concern, but we are Scheduled to see the doctor today and will have that checked.
More later.
Okay, it's later. 11:30 am to be exact (or approximate).
Just saw the surgeon. We have a good news bad news scenario again.
GOOD NEWS:
He removed the bandage over the stoma (tracheostomy site). It's healing nicely. We can leave it open, but will choose to bandage when we get home because the skin is not fully closed.
He also removed the feeding tube at her request. We will now see a speech pathologist and try to upgrade the menu from liquids. Jennifer is going to request approval to eat Puffy Cheetos in order to "take baby steps toward crunchy Cheetos." I'm just requesting puréed foods.
BAD NEWS
We received the results of the pathology report. No squamous cell carcinoma in the sample tongue tissue (great), but it was found in one lymph node. The doctor said it didn't leave the encapsulated area, which means its isolated (still good?). We're not sure what this means to us, other than he is presenting her case to his colleagues tomorrow for feedback.
WORSE NEWS
The lab identified three nodes containing papillary thyroid carcinoma...-- thyroid cancer. End result will require the removal of the thyroid AND radiation to kill off any remaining. CRAP!!!!
Due to the nature of that surgery, it's recommended that we wait about 6 weeks before undergoing the treatment to allow time for Jennifer to recover from this surgery. CRAP. CRAP!!!!
This morning started out with foggy weather in Houston. It just got foggier in the hospital.
Okay.. It's tough right now, but well get through this.
Uncle Joe, a thousand may not be enough. We need more.
I'm afraid to say anything else after we visit the plastic surgeon this afternoon.
4:15 pm
Back to good news
We followed up with the speech pathologist. Jennifer's doing great. She was able to work the applesauce and fruit cocktail and was pretty much cleared for puréed foods and soft foods....but no Cheetos yet (although she'll say she heard differently). Everything else is progressing with the tongue and speech.
We followed with the plastic surgeon. The PA said the arm is looking great and that I did a great job dressing the wound. We'll continue for another week and then let the arm air out on a regular basis. AWESOME. The area of concern was okay, part of the healing process.
Stomach incision is healing nicely.
They cut the blue stitch from the free flap on the tongue. The blue stitch is a marker for identifying where the artery is so the follow up doctors and nurses can easily find the blood flow location when they use the Doppler...(the heartbeat in the tongue from my earlier posts).
All-in-all, it was a day of mixed blessings. We had major success on the recovery front, but upsetting news on the forefront. I understand that thyroid cancer is common and highly treatable. It was just unexpected news that caught us off-guard. As I said earlier, well get through it. Recovery may take longer, or a different path. But, once we figure the path out, we'll be able to navigate fairly well. Just may have to change summer plans again.
Thanks to all for their thoughts and prayers, their hospitality, and their support...we really can't do it without you.
Jim T. My deepest sympathies over the loss of your mother. Jennifer and I offer our thoughts and prayers to you and your family.
I couldn't post last night because heavy storms knocked the power out in the Spring area. However, we had a nice evening.
I was able to go to work with the comfort that that Cat and a neighbor were watching over Jennifer, who is already getting along well.
The grandparents returned the boys to the house. Since the power was out, we decided to go out to eat......along with everybody else in a 10-mile radius. Everything was packed. The girls won and we went to a Mexican restaurant. It was a very good meal. I had fajitas. Jennifer had...the juice from the charro beans. Grace said it tasted like the beans dirty bath water (and I always tell the kids not to drink the bath water). I was kind and did put a little queso on Jennifer's spoon.
Unfortunately, the feeding tube is still bothering her (dang you Jim Gaffigan). We think, rather than moving in the esophagous, it may have twisted and bunched up a little. She decided to go with a tube feed because it was iritating her throat to swallow. We'll check with the doctor today about the tube situation.
The power was still out when we got back to the house around 10:00 pm, but came on about 30 minutes later....thank goodness, the kids were running my batteries down and we had all the candles lit...our house smells like one of those craft shops.
I started to get the tube feeding set up. Poured the liquid nutrition into the IV bag and was ready to flush the tube with tap water. However, I couldn't get the dang thing open. It's a simple concept. The stopper to the tube is the same type that you have with blow-up toys (balls, water wings, etc.). All you have to do is grab the tab, and pull the stopper out of the hole. IT WOULD NOT BUDGE!!! I worked on that stupid thing for thirty minutes and it did not move a millimeter. I have blisters on my thumb and index finger trying to work it out. I used pliers (needle nose AND regular). I tried to lubricate with corn starch...which worked on the outside, because I couldn't get a good grip after that. Finally, we just gave up and she drank a Boost. Unfortunately, no pain meds tonight...but she said she didn't need them.
I would venture to guess that, after the subterfuge with the Cheetos and other things that she probably did behind my back that......stay with me on this.......SHE SUPERGLUED THE STOPPER TO THE TUBE. That's the only conclusion I can come up with....throw away logic that states some of the medicine is indeed sticky and may have just sealed the stopper to the tube......I'm going with the theory around superglue.
Finally, after that battle, I still had to change the dressing on her arm. I see a slight change in the area of concern, but we are Scheduled to see the doctor today and will have that checked.
More later.
Okay, it's later. 11:30 am to be exact (or approximate).
Just saw the surgeon. We have a good news bad news scenario again.
GOOD NEWS:
He removed the bandage over the stoma (tracheostomy site). It's healing nicely. We can leave it open, but will choose to bandage when we get home because the skin is not fully closed.
He also removed the feeding tube at her request. We will now see a speech pathologist and try to upgrade the menu from liquids. Jennifer is going to request approval to eat Puffy Cheetos in order to "take baby steps toward crunchy Cheetos." I'm just requesting puréed foods.
BAD NEWS
We received the results of the pathology report. No squamous cell carcinoma in the sample tongue tissue (great), but it was found in one lymph node. The doctor said it didn't leave the encapsulated area, which means its isolated (still good?). We're not sure what this means to us, other than he is presenting her case to his colleagues tomorrow for feedback.
WORSE NEWS
The lab identified three nodes containing papillary thyroid carcinoma...-- thyroid cancer. End result will require the removal of the thyroid AND radiation to kill off any remaining. CRAP!!!!
Due to the nature of that surgery, it's recommended that we wait about 6 weeks before undergoing the treatment to allow time for Jennifer to recover from this surgery. CRAP. CRAP!!!!
This morning started out with foggy weather in Houston. It just got foggier in the hospital.
Okay.. It's tough right now, but well get through this.
Uncle Joe, a thousand may not be enough. We need more.
I'm afraid to say anything else after we visit the plastic surgeon this afternoon.
4:15 pm
Back to good news
We followed up with the speech pathologist. Jennifer's doing great. She was able to work the applesauce and fruit cocktail and was pretty much cleared for puréed foods and soft foods....but no Cheetos yet (although she'll say she heard differently). Everything else is progressing with the tongue and speech.
We followed with the plastic surgeon. The PA said the arm is looking great and that I did a great job dressing the wound. We'll continue for another week and then let the arm air out on a regular basis. AWESOME. The area of concern was okay, part of the healing process.
Stomach incision is healing nicely.
They cut the blue stitch from the free flap on the tongue. The blue stitch is a marker for identifying where the artery is so the follow up doctors and nurses can easily find the blood flow location when they use the Doppler...(the heartbeat in the tongue from my earlier posts).
All-in-all, it was a day of mixed blessings. We had major success on the recovery front, but upsetting news on the forefront. I understand that thyroid cancer is common and highly treatable. It was just unexpected news that caught us off-guard. As I said earlier, well get through it. Recovery may take longer, or a different path. But, once we figure the path out, we'll be able to navigate fairly well. Just may have to change summer plans again.
Thanks to all for their thoughts and prayers, their hospitality, and their support...we really can't do it without you.
Monday, June 11, 2012
Nothing to report (edited)
There is nothing new to report.
I worked out of the home office today.
It was decided to wait until Wednesday's appointment for the wound check. As of last night, the area of concern did not appear to change.
Jennifer's doing better, although I have to exert extra due diligence toward her safety....I thought, being the caregiver would mean that I would take care of her wounds, ensure her health, etc. I did not know that I'd have to protect our food sources and keep Jennifer from subverting doctors orders by trying to sneak un-authorized foods. It's like watching a toddler getting into everything.
I read the doctors reports today. It's amazing what had to be done during the reconstruction....not just a cut-n-paste.
Insurance -- well. They're in it for profit, so I may have to get the crowbar out to pry away their wallets. Always fun.
Take care all. My next post may be Wednesday after the doctor's visits.
8:00 pm:
Okay. Something happened. We started watching Jim Gaffigan's Mr. universe....HILARIOUS!!! Jennifer was laughing so hard that the feeding tube shifted in her throat. It's more centered than off to the side, which is uncomfortable. We'll keep an eye on it. Hopefully it will shift back. Maybe I need to put in a sad movie...will that have the reverse effect?
I worked out of the home office today.
It was decided to wait until Wednesday's appointment for the wound check. As of last night, the area of concern did not appear to change.
Jennifer's doing better, although I have to exert extra due diligence toward her safety....I thought, being the caregiver would mean that I would take care of her wounds, ensure her health, etc. I did not know that I'd have to protect our food sources and keep Jennifer from subverting doctors orders by trying to sneak un-authorized foods. It's like watching a toddler getting into everything.
I read the doctors reports today. It's amazing what had to be done during the reconstruction....not just a cut-n-paste.
Insurance -- well. They're in it for profit, so I may have to get the crowbar out to pry away their wallets. Always fun.
Take care all. My next post may be Wednesday after the doctor's visits.
8:00 pm:
Okay. Something happened. We started watching Jim Gaffigan's Mr. universe....HILARIOUS!!! Jennifer was laughing so hard that the feeding tube shifted in her throat. It's more centered than off to the side, which is uncomfortable. We'll keep an eye on it. Hopefully it will shift back. Maybe I need to put in a sad movie...will that have the reverse effect?
Sunday, June 10, 2012
Weekend Update (June 10, 2012)
I took a few days to tend to some items at home, but am ready to give the weekend update.
Jennifer took the swallow test on Friday. She hates barium...I guess the taste buds are working. She was able to swallow liquids, with little effort. However, she had difficulty with thicker consistencies like applesauce and pudding. Couldn't quite locate it in her mouth.
We saw the speech therapist shortly after. He cleared her for liquids, not NOTHING else at this time. I did ask him if she felt she could graduate to something bigger like applesauce if she wanted to try. He said "NO." Jennifer, if you are reading this, I'm holding you to the letter of the law.
The trip home was terrible.....Friday afternoon traffic, thunder showers, and I45 made it a rough trip. Jennifer was sick and nauseous by the time we got home. I gave her medicine and was setting up her feeding tube when she started vomiting. Up comes the pain mess and barium and more pain from the convulsive strains. She tried sipping water, to no avail, it started again. So, I broke out the magic elixir, Coke in a bottle. I drove special to the convenience store to picK it up (oh, the things I do for my wife). She sipped a little and it seemed to settle her stomach. You've seen the lists of the many uses of Coca Cola....add another on to it. It's always worked for Jennifer.
After a couple of hours, she ate a little tomato soup and I tube fed some more....still behind schedule, but better.
Saturday
It's swim meet Saturday. Grace did well.
Jennifer was much stronger today. She's consuming more of the cans of food. She had gone over 14 hours without the pain meds. The swelling's going down. I picked up a lot of very delicious canned soups (all liquid), Boost, and Ensure. She's been eating like a queen. Of course, her mission is to get rid of the tube feeding, so she's trying hard. She gave me sad eyes when I was eating a Whataburger fry in front of her she wanted to put one ine her mouth just "for the flavor." I gave her one as a test and kept a close eye....I saw her jaw move in a chew motion. I KNEW IT! I couldn't trust her not to bite it. Fortunately, the chewed area did not come off the fry and I was able to salvage the embarrassment of NOT FOLLOWING DOCTOR'S ORDERS. Back to liquids.
I changed the dressing on her arm and was concerned about one area on the skin graft that appeared to be puffy, and more red than I liked. We called the reconstructive plastic surgery center at MD Anderson and I shot a pic to the doctor on call. Unfortunately, the cell phone picture doesn't do justice to the integrity of the shot, and the doc could not see anything out of the ordinary. Swelling and puffiness are normal. Jennifer didnt have other symptons like foul smell (the wound), pus, fever, etc. She said we could some in today if we felt it was an emergency, or on Monday for a wound check in the clinic. Bottom line is to keep the arm elevated and look for changes on the wound.
Sunday
Catherine had piano recital today. She was Awesome.
Jennifer is working diligently on tomato soup, Ensure, and Boost to get up to the 2000 calories she needs for the day. As her caregiver, I am hesitant to deviate to alternative diets like puréed cream of potato soup. Since she had difficulty with applesauce, I see her having diffulty with others right now, so I fall back on my previous statement from Friday. We will see the doctor on Wednesday and try to convince him otherwise.
So far today, no need for pain meds (none since Saturday afternoon). Swelling is better. I, being the awesome caregiver that Jennifer proclaims me to be, shampooed her hair, changed the tape on her feeding tube, and encouraged her to eat more by using the threat of feeding her with the tube. I also did a wound check to review the area of concern on her skin graft. I did not see a change to it from yesterday. In fact, it may have gone down a little, so we will wait until Monday.
With the decreased swelling, her tongue is starting to slowly realign. Originally, it was severely twisted with the free flap attached and looked much worse than how the doctor described his procedure. Now, I can see the tip of the tongue (previously not in position). I can now make out the shape and it lines up with what the surgeon said he did. Looking better.
7:10 pm update. What the heck? I put my wife to my 100% tried and true interrogation techniques and learned that she had been LYING to me, and thus herself. When I took Grace to the swim meet Saturday, Cat was put in charge...Jennifer persuaded her to give her a bit of puffy Cheetos. That's child abuse, to put her in that spot. From now on, I have padlocked the pantry and all food orders must come through me. And Cat's getting a spanking.
Jennifer took the swallow test on Friday. She hates barium...I guess the taste buds are working. She was able to swallow liquids, with little effort. However, she had difficulty with thicker consistencies like applesauce and pudding. Couldn't quite locate it in her mouth.
We saw the speech therapist shortly after. He cleared her for liquids, not NOTHING else at this time. I did ask him if she felt she could graduate to something bigger like applesauce if she wanted to try. He said "NO." Jennifer, if you are reading this, I'm holding you to the letter of the law.
The trip home was terrible.....Friday afternoon traffic, thunder showers, and I45 made it a rough trip. Jennifer was sick and nauseous by the time we got home. I gave her medicine and was setting up her feeding tube when she started vomiting. Up comes the pain mess and barium and more pain from the convulsive strains. She tried sipping water, to no avail, it started again. So, I broke out the magic elixir, Coke in a bottle. I drove special to the convenience store to picK it up (oh, the things I do for my wife). She sipped a little and it seemed to settle her stomach. You've seen the lists of the many uses of Coca Cola....add another on to it. It's always worked for Jennifer.
After a couple of hours, she ate a little tomato soup and I tube fed some more....still behind schedule, but better.
Saturday
It's swim meet Saturday. Grace did well.
Jennifer was much stronger today. She's consuming more of the cans of food. She had gone over 14 hours without the pain meds. The swelling's going down. I picked up a lot of very delicious canned soups (all liquid), Boost, and Ensure. She's been eating like a queen. Of course, her mission is to get rid of the tube feeding, so she's trying hard. She gave me sad eyes when I was eating a Whataburger fry in front of her she wanted to put one ine her mouth just "for the flavor." I gave her one as a test and kept a close eye....I saw her jaw move in a chew motion. I KNEW IT! I couldn't trust her not to bite it. Fortunately, the chewed area did not come off the fry and I was able to salvage the embarrassment of NOT FOLLOWING DOCTOR'S ORDERS. Back to liquids.
I changed the dressing on her arm and was concerned about one area on the skin graft that appeared to be puffy, and more red than I liked. We called the reconstructive plastic surgery center at MD Anderson and I shot a pic to the doctor on call. Unfortunately, the cell phone picture doesn't do justice to the integrity of the shot, and the doc could not see anything out of the ordinary. Swelling and puffiness are normal. Jennifer didnt have other symptons like foul smell (the wound), pus, fever, etc. She said we could some in today if we felt it was an emergency, or on Monday for a wound check in the clinic. Bottom line is to keep the arm elevated and look for changes on the wound.
Sunday
Catherine had piano recital today. She was Awesome.
Jennifer is working diligently on tomato soup, Ensure, and Boost to get up to the 2000 calories she needs for the day. As her caregiver, I am hesitant to deviate to alternative diets like puréed cream of potato soup. Since she had difficulty with applesauce, I see her having diffulty with others right now, so I fall back on my previous statement from Friday. We will see the doctor on Wednesday and try to convince him otherwise.
So far today, no need for pain meds (none since Saturday afternoon). Swelling is better. I, being the awesome caregiver that Jennifer proclaims me to be, shampooed her hair, changed the tape on her feeding tube, and encouraged her to eat more by using the threat of feeding her with the tube. I also did a wound check to review the area of concern on her skin graft. I did not see a change to it from yesterday. In fact, it may have gone down a little, so we will wait until Monday.
With the decreased swelling, her tongue is starting to slowly realign. Originally, it was severely twisted with the free flap attached and looked much worse than how the doctor described his procedure. Now, I can see the tip of the tongue (previously not in position). I can now make out the shape and it lines up with what the surgeon said he did. Looking better.
7:10 pm update. What the heck? I put my wife to my 100% tried and true interrogation techniques and learned that she had been LYING to me, and thus herself. When I took Grace to the swim meet Saturday, Cat was put in charge...Jennifer persuaded her to give her a bit of puffy Cheetos. That's child abuse, to put her in that spot. From now on, I have padlocked the pantry and all food orders must come through me. And Cat's getting a spanking.
Thursday, June 7, 2012
Discharged
Cue fireworks. We are out of here.
10:00 pm
Long day. Jennifer's doing well, but still in a lot of pain.
Tomorrow will be better.
We go in for the swallow tests. If successfull, she will get that feeding tube out of her and then be able to take food orally.
The swallow test will utilize barium to test whether there are any leaks in the free flap (reconstructed part of the mouth). They will also test her ability to swallow foods of different consistencies - liquid, applesauce, pudding, etc. the process of moving the food through the mouth, to the pharynx, to the esophagus. Can she do it? And, how long does it take to go three each step of the process? If it takes too long for the food to move through the pharynx, then she can gag on the food and may not be ready to advance to the stage of taking food orally.
Wish us luck. Keep us in your prayers. I appreciate everybody's support, whether it's prayer, babysitting, help around the house, work, cleaning wounds (yes....I do that now -- I'm the caregiver).
Special thanks to the nurses/staff at MD Anderson. The doctors got the cancer (we hope), but the nurses helped us survive....a lot of care and a lot of education. All of them had great attitudes which helped ours. I don't want to take anything away from the doctors..everybody fulfilled their role pretty well....now if the billing department cares for us, they'll waive all fees. Is that too much to ask?
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
10:00 pm
Long day. Jennifer's doing well, but still in a lot of pain.
Tomorrow will be better.
We go in for the swallow tests. If successfull, she will get that feeding tube out of her and then be able to take food orally.
The swallow test will utilize barium to test whether there are any leaks in the free flap (reconstructed part of the mouth). They will also test her ability to swallow foods of different consistencies - liquid, applesauce, pudding, etc. the process of moving the food through the mouth, to the pharynx, to the esophagus. Can she do it? And, how long does it take to go three each step of the process? If it takes too long for the food to move through the pharynx, then she can gag on the food and may not be ready to advance to the stage of taking food orally.
Wish us luck. Keep us in your prayers. I appreciate everybody's support, whether it's prayer, babysitting, help around the house, work, cleaning wounds (yes....I do that now -- I'm the caregiver).
Special thanks to the nurses/staff at MD Anderson. The doctors got the cancer (we hope), but the nurses helped us survive....a lot of care and a lot of education. All of them had great attitudes which helped ours. I don't want to take anything away from the doctors..everybody fulfilled their role pretty well....now if the billing department cares for us, they'll waive all fees. Is that too much to ask?
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Wednesday, June 6, 2012
C - Day + 6 (Wednesday) -- Discharge Day - 1
Zip-a-dee-doo-dah
Zip-a-dee-ay
My oh my what a wonderful day.
10:15 am
Jennifer did well with the capped trach, so they removed it around 6:20 this morning. About an hour later, they removed the two drains.
I got to initiate some medication through her feeding tube, and start a gravity feed. I think I did really well. She may disagree, but it was exciting.
All we have to do is wait for the plastic surgeons to remove the splint on the arm, assess the progress and train me on wound care in this area.
Woohoo!!!!!!!!!
4:30 pm
We finally met with the plastic surgeons PA. She undressed the wound on the arm. If you're not used to looking at a skin graft, then it will cause you to stare. In order to prevent blood from accumulating under the graft, they put holes in the skin that's grafted--I.e. the blood drains out. If you've been fortunate to have a mother or grandmother that has baked a pie (or you yourself are a great baker --I like apple pie), then you may put the little diamond shaped slits in the crust. This is what the grafted skin looks like. It will heal over time, but it's a shock to look at if you are unprepared (I kinda was).
The PA said everything looks good, gave me instructions on dressing the wound and indicated she's issuing the discharge order. We get to go home. Alright! Jennifer has been waiting. Don't get us wrong. The nursing staff has been excellent, caring, and great to work with (other than the one episode, which I didn't encounter). Doctors have been great, but we're tired and ready.
However, with Houston traffic, I think we'll wait a couple of hours...the trip will be an ordeal. It's just as well. It may take the that long to put our discharge supplies together. I'll be a roving drugstore full of bandages, drugs, feeding equipment.....glad I brought my truck.
The only thing I forgot to bring we're some sweats for Jennifer. She has the clothes she arrived in, but I forgot the sweats. She told me to get them. I thought they were in a bag I brought in later...and it turns out they were not. I'm sorry Jennifer. That was my oversight.
I'll come back later to this after we endure our trip and I'm able to get Jennifer settled in.
6:30 pm....change of plans. The tube feeding is causing nausea, so the recommendation is to wait overnight for observation. Discharge is changed till tomorrow. I apologize for the change of plans, but the goal is to take care of Jennifer and this is what's best.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Zip-a-dee-ay
My oh my what a wonderful day.
10:15 am
Jennifer did well with the capped trach, so they removed it around 6:20 this morning. About an hour later, they removed the two drains.
I got to initiate some medication through her feeding tube, and start a gravity feed. I think I did really well. She may disagree, but it was exciting.
All we have to do is wait for the plastic surgeons to remove the splint on the arm, assess the progress and train me on wound care in this area.
Woohoo!!!!!!!!!
4:30 pm
We finally met with the plastic surgeons PA. She undressed the wound on the arm. If you're not used to looking at a skin graft, then it will cause you to stare. In order to prevent blood from accumulating under the graft, they put holes in the skin that's grafted--I.e. the blood drains out. If you've been fortunate to have a mother or grandmother that has baked a pie (or you yourself are a great baker --I like apple pie), then you may put the little diamond shaped slits in the crust. This is what the grafted skin looks like. It will heal over time, but it's a shock to look at if you are unprepared (I kinda was).
The PA said everything looks good, gave me instructions on dressing the wound and indicated she's issuing the discharge order. We get to go home. Alright! Jennifer has been waiting. Don't get us wrong. The nursing staff has been excellent, caring, and great to work with (other than the one episode, which I didn't encounter). Doctors have been great, but we're tired and ready.
However, with Houston traffic, I think we'll wait a couple of hours...the trip will be an ordeal. It's just as well. It may take the that long to put our discharge supplies together. I'll be a roving drugstore full of bandages, drugs, feeding equipment.....glad I brought my truck.
The only thing I forgot to bring we're some sweats for Jennifer. She has the clothes she arrived in, but I forgot the sweats. She told me to get them. I thought they were in a bag I brought in later...and it turns out they were not. I'm sorry Jennifer. That was my oversight.
I'll come back later to this after we endure our trip and I'm able to get Jennifer settled in.
6:30 pm....change of plans. The tube feeding is causing nausea, so the recommendation is to wait overnight for observation. Discharge is changed till tomorrow. I apologize for the change of plans, but the goal is to take care of Jennifer and this is what's best.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Tuesday, June 5, 2012
C - Day + 5 (Tuesday)
Jennifer is AWESOME!! That's why I love her. Oh. She's doing well too.
Today was pretty busy.
The Doctor from the plastic surgery team came in for his assessment. He informed us that the arm splint will not be removed until tomorrow but suggested we may also be discharged tomorrow. He also said everything else is looking good. Good news.
Jennifer's goal is to get the trach out soon, hopefully before we get discharged. We will be cutting it to the wire.
She's up to her hourly goal on feeding and ready to move from the pump feed, which is a constant feed, to a gravity feed, which can be administered more cyclically (breakfast, lunch, dinner, and snack). To bad the surgical regimen doesn't offer the wide variety of flavors/meals that Jenny Craig, Weight Watchers, or meals on wheels has to offer. I guess it doesn't matter, since nothing's being taken orally, but it would be neat to relabel the various cans of FiberOne dietary supplement as "Luscious Liver and Onions," "Double Cheeseburger, hold the Mayo," etc....but then have it all look like the chocolate milk it currently resembles.
Our speech pathologist came by, inserted a PMV, which is a one-way valve that allows Jennifer to talk again. And none too soon....I love hearing her beautiful voice again (although faint and hoarse), and she's tired of my inability to interpret sign language to the point she was about to rip my head off a few times. Now we understand each other much better....she only wants to rip my head off half the time (about the same levels as before she had surgery).
The PMV was the next step in the process to removing the trach altogether. The next and last step is to cap the trach for 24 hours to determine how Jennifer handles it. If all goes well, we will get the order to remove the trach for good. Jennifer's short-term goal is about to be realized.
The occupational therapist was very pleased with Jennifer's physical progress (see yesterday's post). She told Jennifer to stop wearing holes in the floor and to move around the hospital campus. Tomorrow, or later tonight, we may go see the sights via the Observation Deck near the penthouse of our luxury resort. Until then, she got to enjoy a shampoo and head massage at the local beauty parlor. She really enjoyed that.
While we were out, the physician came to place the cap on the trach...man our timing has sucked lately. The nurses are trying to track him down for us.
5:00 pm
The treatment here has been fabulous. Alas, our stay at Spa de Anderson is almost complete. They are telling us we have to leave soon. Hmmm. Did my check bounce? I hope jennifer liked the trip to exotic Houston I got for her our 15th anniversary.
10:00 pm
I had left for a few hours to check on the house, eat, clean up, and talk to Bo. When I came back, Jennifer had the cap on her trach. Again. She is Awesome. Everybody else should be jealous of me. Sorry, got a little carried away.
The next step on the trach adventure is to pull it out. I hope I get to see it -- purely from a scientific perspective. We have a perfectly good PMV cap that was only used for a few hours, like a car only driven to church on Sundays. I wonder what they fetch on eBay? Just kidding people...it probably illegal, but I'll still see if people are doing it.
I thank everybody for their prayers and support. We can't make it through this journey without you. However, after 7 days of practically living at Spa de Anderson, I've seen a lot of patients and family members at various stages of their journeys. Just today, I overheard an elderly man telling a volunteer, as he was wheeled out of the hospital, "I came here with two kidneys and a lot of cancer. Now, I'm leaving with one kidney and no cancer." Journey ending, it appears to be a success. I also saw a young teenage girl embarking on her journey, somewhat intrigued with the process she went through today. Her parents were discussing that they were there for twelve hours, at the same time, looking at a hospital map to get their bearings. This was clearly their first time here. The outcome...unknown. We're somewhere in between these two paths. I sure pray ours is a success. But, for the others, please say a special prayer. I do.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you (Jennifer). Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Today was pretty busy.
The Doctor from the plastic surgery team came in for his assessment. He informed us that the arm splint will not be removed until tomorrow but suggested we may also be discharged tomorrow. He also said everything else is looking good. Good news.
Jennifer's goal is to get the trach out soon, hopefully before we get discharged. We will be cutting it to the wire.
She's up to her hourly goal on feeding and ready to move from the pump feed, which is a constant feed, to a gravity feed, which can be administered more cyclically (breakfast, lunch, dinner, and snack). To bad the surgical regimen doesn't offer the wide variety of flavors/meals that Jenny Craig, Weight Watchers, or meals on wheels has to offer. I guess it doesn't matter, since nothing's being taken orally, but it would be neat to relabel the various cans of FiberOne dietary supplement as "Luscious Liver and Onions," "Double Cheeseburger, hold the Mayo," etc....but then have it all look like the chocolate milk it currently resembles.
Our speech pathologist came by, inserted a PMV, which is a one-way valve that allows Jennifer to talk again. And none too soon....I love hearing her beautiful voice again (although faint and hoarse), and she's tired of my inability to interpret sign language to the point she was about to rip my head off a few times. Now we understand each other much better....she only wants to rip my head off half the time (about the same levels as before she had surgery).
The PMV was the next step in the process to removing the trach altogether. The next and last step is to cap the trach for 24 hours to determine how Jennifer handles it. If all goes well, we will get the order to remove the trach for good. Jennifer's short-term goal is about to be realized.
The occupational therapist was very pleased with Jennifer's physical progress (see yesterday's post). She told Jennifer to stop wearing holes in the floor and to move around the hospital campus. Tomorrow, or later tonight, we may go see the sights via the Observation Deck near the penthouse of our luxury resort. Until then, she got to enjoy a shampoo and head massage at the local beauty parlor. She really enjoyed that.
While we were out, the physician came to place the cap on the trach...man our timing has sucked lately. The nurses are trying to track him down for us.
5:00 pm
The treatment here has been fabulous. Alas, our stay at Spa de Anderson is almost complete. They are telling us we have to leave soon. Hmmm. Did my check bounce? I hope jennifer liked the trip to exotic Houston I got for her our 15th anniversary.
10:00 pm
I had left for a few hours to check on the house, eat, clean up, and talk to Bo. When I came back, Jennifer had the cap on her trach. Again. She is Awesome. Everybody else should be jealous of me. Sorry, got a little carried away.
The next step on the trach adventure is to pull it out. I hope I get to see it -- purely from a scientific perspective. We have a perfectly good PMV cap that was only used for a few hours, like a car only driven to church on Sundays. I wonder what they fetch on eBay? Just kidding people...it probably illegal, but I'll still see if people are doing it.
I thank everybody for their prayers and support. We can't make it through this journey without you. However, after 7 days of practically living at Spa de Anderson, I've seen a lot of patients and family members at various stages of their journeys. Just today, I overheard an elderly man telling a volunteer, as he was wheeled out of the hospital, "I came here with two kidneys and a lot of cancer. Now, I'm leaving with one kidney and no cancer." Journey ending, it appears to be a success. I also saw a young teenage girl embarking on her journey, somewhat intrigued with the process she went through today. Her parents were discussing that they were there for twelve hours, at the same time, looking at a hospital map to get their bearings. This was clearly their first time here. The outcome...unknown. We're somewhere in between these two paths. I sure pray ours is a success. But, for the others, please say a special prayer. I do.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you (Jennifer). Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Monday, June 4, 2012
C - Day + 4 (Monday)
6:30 pm
I decided to take most of the day off from my therapy, writing this. Instead, I focused a little on work so I'm not coming back to a pile. The world's constantly turning.
It's been a long, but successful day.
The doctor came in early this morning. He mentioned downgrading the trach as we work toward getting it out altogether. They brought in the packaging for the new trach.....it's still sitting on the counter. Need to follow up on that.
The doctor representing the plastic surgery team checked everything around 7:00 am and said all looks well. Even broached the subject of removing the drains soon, maybe in next day or two.
Jennifer walked three laps around the nurses station. That's a HUGE accomplishment. We then spoke to the dietician about continuing the tube feelings at home. It's a structured regimen. Home health care is already contacting us to make arrangements for food shipments.
Then came the occupational therapist. She was happy with the progress over the weekend. But wants more. We walked a figure eight course around the two sets of nurses stations, then sat up for an hour. An even BIGGER accomplishment. Since then, Jennifer has twice done double figure eights and a single eight around the stations. I'm afraid she's going to turn down the hall next time and just walk out of the hospital. All of these walks are of her choosing. I love her determination. That's how she landed me. ;-)
During all of this, they replaced her IV, because the back of her hand was done...not gonna take anymore. I don't blame it...that's a lot of junk going through. Now they have it in her forearm...she's much happier. Her strength is up. Her feeding has increased. She's watching tv right now, but I'm sure she'll get me up for another walk. I'd better go grab something to eat.
6:35 pm.... Doc just walked in to change the trach...bonus. Holy moly, I just saw,and helped with the trach change. Very exciting from a scientific standpoint, but very traumatic to watch Jennifer go through it. I'm sorry Jennifer...it'll get better each day.
9:45 pm.: Good news, I think. I bent down to give Jennifer a kiss and she waved her hand in front of her face indicating I have bad breath. (haven't brushed all day, and just ate barbecue and a Philly cheesesteak). I think those words are the best words I heard since "yes," "I do," and "I'm pregnant" (all came from her). I hope that's a good sign.
Glenn. Thanks for coming by. Enjoyed the visit. Thanks to all those helping out with the kids, the house, at work...neighbors, friends, family. Y'all make this so much easier.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
I decided to take most of the day off from my therapy, writing this. Instead, I focused a little on work so I'm not coming back to a pile. The world's constantly turning.
It's been a long, but successful day.
The doctor came in early this morning. He mentioned downgrading the trach as we work toward getting it out altogether. They brought in the packaging for the new trach.....it's still sitting on the counter. Need to follow up on that.
The doctor representing the plastic surgery team checked everything around 7:00 am and said all looks well. Even broached the subject of removing the drains soon, maybe in next day or two.
Jennifer walked three laps around the nurses station. That's a HUGE accomplishment. We then spoke to the dietician about continuing the tube feelings at home. It's a structured regimen. Home health care is already contacting us to make arrangements for food shipments.
Then came the occupational therapist. She was happy with the progress over the weekend. But wants more. We walked a figure eight course around the two sets of nurses stations, then sat up for an hour. An even BIGGER accomplishment. Since then, Jennifer has twice done double figure eights and a single eight around the stations. I'm afraid she's going to turn down the hall next time and just walk out of the hospital. All of these walks are of her choosing. I love her determination. That's how she landed me. ;-)
During all of this, they replaced her IV, because the back of her hand was done...not gonna take anymore. I don't blame it...that's a lot of junk going through. Now they have it in her forearm...she's much happier. Her strength is up. Her feeding has increased. She's watching tv right now, but I'm sure she'll get me up for another walk. I'd better go grab something to eat.
6:35 pm.... Doc just walked in to change the trach...bonus. Holy moly, I just saw,and helped with the trach change. Very exciting from a scientific standpoint, but very traumatic to watch Jennifer go through it. I'm sorry Jennifer...it'll get better each day.
9:45 pm.: Good news, I think. I bent down to give Jennifer a kiss and she waved her hand in front of her face indicating I have bad breath. (haven't brushed all day, and just ate barbecue and a Philly cheesesteak). I think those words are the best words I heard since "yes," "I do," and "I'm pregnant" (all came from her). I hope that's a good sign.
Glenn. Thanks for coming by. Enjoyed the visit. Thanks to all those helping out with the kids, the house, at work...neighbors, friends, family. Y'all make this so much easier.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Sunday, June 3, 2012
C - Day + 3 (Sunday)
I thought we'd never get sleep Saturday night. After adjusting the feeding tube and ensuring it was set correctly, the dr.s started the feeding regimen again, basically a concoction like Fiber One. The result were frequent bathroom breaks. It takes about 3 a 5 minutes to break down her hospital gear, unplug the machines, untangle the lines, help her out of bed, and get to the bathroom. It's a little longer when I'm trying to shake the sleep out of my eyes. The Saturday evening staff, though nice, did not appear as efficient as the rest of the nursing staff, so we did this ourselves. Then I'd notify them that we were done so they could record volumes, etc.
Finally had some peace between 1:30 and 6:00. At least I did. I'm not sure about Jennifer.
The phlebotomist came in to draw blood about this time...after a couple of tries, she had to get the more experienced member of her team. They took a couple of more tries until they tapped an artery. It sucks that the good arm for giving blood is the one that is wrapped up from surgery. I'm about to ask if they'll just release a bunch of Mosquitos in the room, then pop them all to get the sample....it would be easier on Jennifer.
We were a little relieved with the staff change when the same nurses from yesterday arrived...great people. Not to bad mouth the previous staff, just a reflection of our comfort level.
At 8:00 this morning, Jennifer was ready to walk again. She's determined to get out of here. We made three laps around the nurses station, stopping only to get her oxygen level back up. Then she sat in the chair for about an hour. Very good progress.
The general doctor came in. Nice guy. Everything is looking good except that she's behind on nutrition. Gotto catch up. We discussed the trach, and when she can go. He didn't want to speculate too much, but the target date is roughly the 6th or 7th for leaving, but unknown on the trach.
Jennifer's mom showed up and I came home to relieve my mother and Aunt Terry. Thank you all so much for helping. Now I have some downtime with the kids, maybe take them to the park to have a picnic and feed the ducks...Jake's idea. Right now, they are playing computer and video games. Who says I don't know how to watch my kids. ;-)
Then I'll catch up with work....the world is constantly moving. The scary part is almost over, but the toughest part is about to begin.
Please forgive any misspelling, I'm not proofing this.
Thank you for the prayers.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Finally had some peace between 1:30 and 6:00. At least I did. I'm not sure about Jennifer.
The phlebotomist came in to draw blood about this time...after a couple of tries, she had to get the more experienced member of her team. They took a couple of more tries until they tapped an artery. It sucks that the good arm for giving blood is the one that is wrapped up from surgery. I'm about to ask if they'll just release a bunch of Mosquitos in the room, then pop them all to get the sample....it would be easier on Jennifer.
We were a little relieved with the staff change when the same nurses from yesterday arrived...great people. Not to bad mouth the previous staff, just a reflection of our comfort level.
At 8:00 this morning, Jennifer was ready to walk again. She's determined to get out of here. We made three laps around the nurses station, stopping only to get her oxygen level back up. Then she sat in the chair for about an hour. Very good progress.
The general doctor came in. Nice guy. Everything is looking good except that she's behind on nutrition. Gotto catch up. We discussed the trach, and when she can go. He didn't want to speculate too much, but the target date is roughly the 6th or 7th for leaving, but unknown on the trach.
Jennifer's mom showed up and I came home to relieve my mother and Aunt Terry. Thank you all so much for helping. Now I have some downtime with the kids, maybe take them to the park to have a picnic and feed the ducks...Jake's idea. Right now, they are playing computer and video games. Who says I don't know how to watch my kids. ;-)
Then I'll catch up with work....the world is constantly moving. The scary part is almost over, but the toughest part is about to begin.
Please forgive any misspelling, I'm not proofing this.
Thank you for the prayers.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Saturday, June 2, 2012
C - Day + 2
I'll just get into it.
The night went fairly well.
11:00 am:
Today is poke, prod, physical therapy day. They drew blood twice today. They have to use the arm that doesn't like to give up its supply. That was painful as they had to keep searching for a spot that would give.
She's been receiving sustenance though the feeding tube. Doctors had to insert it further and re-stitch it. Again, very uncomfortable for her.
The good news. She did AWESOME on her first walk. She had to start with ankle exercises, then knee bends for a few minutes, shoulder excercises, then a sit-stand routine next to the bed. In the middle of that, she had to go through the feeding tube incident. Finally, she walked two laps around the nurses station. We'll go through another round this afternoon. I thought the Physical Therapist did a great job of coaching/teaching.
The physical therapist is going to climb a mountain in Indonesia in honor of her patients, including Jennifer. She's been training for a while and says she's ready. She's 58 years old, but doesnt look it. Amazing.
She did ask about home environment: pets, rugs, clutter, etc.... Pets can bring infection, so Bo has to stay outside. Good thing he already does. Rugs and clutter can cause accidents (more prevalent since she doesn't have use of her left arm). That means the kids have to CLEAN UP THE HOUSE. Talk about climbing a mountain without training.
All the movement this morning has led to pain and nausea, so she's resting now. Time to eat. More later.
10:30 pm:
Went home for a few hours to talk to Mom and Terry....make sure they were still hanging in with the kids. They had taken them to the pool, got them showered, and ready for church, Saturday Evening Mass....love it. When I walked in the house, Ben and Jake were asleep.... Good Job Grandma...except...now they'll he hyper during Mass. Turns out they weren't, so all is good. Went through Chik-fil-a drive thru afterwards. Kids were happy.
Just got back around 9:00. Turns out the planned afternoon walk didn't occur. I don't know why. Now we're dealing with the Saturday night staff. Nice, but we're not as confident.
She's back on the juice again (liquid diet). They stopped it temporarily until they could x-ray her chest to check the feeding tube position.
That's all for tonight. Y'all get some sleep. We are.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
The night went fairly well.
11:00 am:
Today is poke, prod, physical therapy day. They drew blood twice today. They have to use the arm that doesn't like to give up its supply. That was painful as they had to keep searching for a spot that would give.
She's been receiving sustenance though the feeding tube. Doctors had to insert it further and re-stitch it. Again, very uncomfortable for her.
The good news. She did AWESOME on her first walk. She had to start with ankle exercises, then knee bends for a few minutes, shoulder excercises, then a sit-stand routine next to the bed. In the middle of that, she had to go through the feeding tube incident. Finally, she walked two laps around the nurses station. We'll go through another round this afternoon. I thought the Physical Therapist did a great job of coaching/teaching.
The physical therapist is going to climb a mountain in Indonesia in honor of her patients, including Jennifer. She's been training for a while and says she's ready. She's 58 years old, but doesnt look it. Amazing.
She did ask about home environment: pets, rugs, clutter, etc.... Pets can bring infection, so Bo has to stay outside. Good thing he already does. Rugs and clutter can cause accidents (more prevalent since she doesn't have use of her left arm). That means the kids have to CLEAN UP THE HOUSE. Talk about climbing a mountain without training.
All the movement this morning has led to pain and nausea, so she's resting now. Time to eat. More later.
10:30 pm:
Went home for a few hours to talk to Mom and Terry....make sure they were still hanging in with the kids. They had taken them to the pool, got them showered, and ready for church, Saturday Evening Mass....love it. When I walked in the house, Ben and Jake were asleep.... Good Job Grandma...except...now they'll he hyper during Mass. Turns out they weren't, so all is good. Went through Chik-fil-a drive thru afterwards. Kids were happy.
Just got back around 9:00. Turns out the planned afternoon walk didn't occur. I don't know why. Now we're dealing with the Saturday night staff. Nice, but we're not as confident.
She's back on the juice again (liquid diet). They stopped it temporarily until they could x-ray her chest to check the feeding tube position.
That's all for tonight. Y'all get some sleep. We are.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Friday, June 1, 2012
C Day + 1
Jennifer's doing well.
Last night, the first night, was a bit rough at points. The trach tube had to be suctioned a couple of times....basically sucking the oxygen out of the lungs, causing the sensation of choking. Otherwise all else was smooth.
It's amazing that a small, 2 cm spot on the tongue can hit you like a Mac Truck.....
The plan is to get her walking soon, work toward removing the drain tubes within a weeks time. Feeding tube may stay a little longer. We'll have to go through training for cleaning the tubes.
The plastic surgeon fellow came in and said the free flap looked good. As part of the healing process, will get worse (swelling) before it gets better. They use an ultrasound wand to check the flap...like listening to a fetus heartbeat. Pretty cool.
For the record, daytime tv sucks. Jennifer is changing channels, but there's nothing of interest.
Just saw chief surgeon. Said the swelling's not too bad right now. Everything else was looking good.
10:00 pm. Busy busy busy...the world never stops even though you wish it would slow down. Many thanks to everyone helping us out today.
Busy for Jennifer:
We had visits with the discharge reps, the physical therapist, various RN's, VIP's, OMG's...too many to count. Part of any patient's therapy is getting them out of bed. Jennifer was able to sit for a 45 minute stint, then, later, another hour long stint....she sat up straight without using the pillow as a back support, which is huge. She's gonna win this.
She also had the inner cantor (forgive my spelling/terminology if I have it wrong), basically the inner tube replaced in the trach...it's cool to watch the procedure, but devastating to be powerless to see my wife in pain...and she's been through a lot, has a high tolerance. She met my brothers.
She's getting stronger. She's also getting frustrated with my inability to read her hand signals, always having to resort to pen and paper...but we're getting better at it...everybody should try to go one day without communicating verbally (and with only one usable arm)...
I ventured to look at the reconstruction today. To my untrained eye, it looked good. Swollen, but good. The ultrasound checks are still positive. God is smiling on us, as will Jennifer.
Busy for the family:
I ran home for a few hours to visit with Mom and Terry....oh, and the kids too. I also set up a couple of after-hours appointments for the girls. However, I had to get back to the hospital, so Mom and Terry had to take them. I told you earlier that I'd get them to test the Houston traffic...had to get my kids sick to do it, but it worked. So, on the home front, we're looking at pink eye and bronchitis to treat. Thankfully they should be cleared up before Jennifer comes home.
Also tried to catch up on work a little in the hospital...keep it from piling up. I know. I know...you don't have to say it.
Learned that I went public recently. I hope my IPO went well and doesn't lose it's value. See. I made a funny there. My sister posted my blog on FACEBOOK, making me public, like Facebook went public...and my value is not quite a bazillion dollars, but close -- okay. I'm sorry. If I have to point out my jokes/puns, then I shouldn't say them. Funny again, because that's what Jennifer tells me all the time.
I'll stop for tonight. Time to get some rest.
Thank you for the prayers.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Last night, the first night, was a bit rough at points. The trach tube had to be suctioned a couple of times....basically sucking the oxygen out of the lungs, causing the sensation of choking. Otherwise all else was smooth.
It's amazing that a small, 2 cm spot on the tongue can hit you like a Mac Truck.....
The plan is to get her walking soon, work toward removing the drain tubes within a weeks time. Feeding tube may stay a little longer. We'll have to go through training for cleaning the tubes.
The plastic surgeon fellow came in and said the free flap looked good. As part of the healing process, will get worse (swelling) before it gets better. They use an ultrasound wand to check the flap...like listening to a fetus heartbeat. Pretty cool.
For the record, daytime tv sucks. Jennifer is changing channels, but there's nothing of interest.
Just saw chief surgeon. Said the swelling's not too bad right now. Everything else was looking good.
10:00 pm. Busy busy busy...the world never stops even though you wish it would slow down. Many thanks to everyone helping us out today.
Busy for Jennifer:
We had visits with the discharge reps, the physical therapist, various RN's, VIP's, OMG's...too many to count. Part of any patient's therapy is getting them out of bed. Jennifer was able to sit for a 45 minute stint, then, later, another hour long stint....she sat up straight without using the pillow as a back support, which is huge. She's gonna win this.
She also had the inner cantor (forgive my spelling/terminology if I have it wrong), basically the inner tube replaced in the trach...it's cool to watch the procedure, but devastating to be powerless to see my wife in pain...and she's been through a lot, has a high tolerance. She met my brothers.
She's getting stronger. She's also getting frustrated with my inability to read her hand signals, always having to resort to pen and paper...but we're getting better at it...everybody should try to go one day without communicating verbally (and with only one usable arm)...
I ventured to look at the reconstruction today. To my untrained eye, it looked good. Swollen, but good. The ultrasound checks are still positive. God is smiling on us, as will Jennifer.
Busy for the family:
I ran home for a few hours to visit with Mom and Terry....oh, and the kids too. I also set up a couple of after-hours appointments for the girls. However, I had to get back to the hospital, so Mom and Terry had to take them. I told you earlier that I'd get them to test the Houston traffic...had to get my kids sick to do it, but it worked. So, on the home front, we're looking at pink eye and bronchitis to treat. Thankfully they should be cleared up before Jennifer comes home.
Also tried to catch up on work a little in the hospital...keep it from piling up. I know. I know...you don't have to say it.
Learned that I went public recently. I hope my IPO went well and doesn't lose it's value. See. I made a funny there. My sister posted my blog on FACEBOOK, making me public, like Facebook went public...and my value is not quite a bazillion dollars, but close -- okay. I'm sorry. If I have to point out my jokes/puns, then I shouldn't say them. Funny again, because that's what Jennifer tells me all the time.
I'll stop for tonight. Time to get some rest.
Thank you for the prayers.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
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