Wednesday, July 29, 2009
Thanks for your continued prayers! I wish all of you could come for a big celebration to see in person how much energy, strength and color he has now! He says he feels better than he has in a very, very long time. Right now he has spurts of energy, but still wears out pretty quickly. However, those spurts get longer and more frequent every day!
Love to you all...
Sunday, July 26, 2009
Alex is doing great and gaining strength everyday. Dale and Mom were up this weekend and he even felt up to helping Dale cut the last two replacement doors this morning. We got bloodwork last week to see if a blood transfusion was needed since his hemoglobin has been running so low (around the upper 7's/low 8's). His hemoglobin was up to 10.5, which is much higher than it has been since about Spring of 2007! Other tests showed that his bone marrow is regenerating red blood cells at a normal rate so that hemoglobin number should continue to get better and better (normal for males is 13 and above, so that's what we're shooting for). We have 3 different appointments this week to fill all the KC doctors in on how he's doing and meet with the KC ET nurses. Alex's incision continues to heal, but may need to be opened up on Tuesday to allow for better healing. We went in last week to see our surgeon here in KC b/c of increased drainage and some spots that looked as though they needed to drain, but couldn't. He put Alex back on some antibiotics and opened up a bit more of the incision. Tuesday he will decide how much more needs to be opened if any at all. It will all depend on how much he has healed over this last week. Regardless, he said it was "no big deal. A nuisance, but nothing to be worried about." Easy for him to say, harder for Alex to swallow when it just seems like that much more time needed to heal. Thank you all for your continued prayers! Check out the baby's site and meet our new little angel! :)
Tuesday, July 21, 2009
My mom has been in town for a few days now helping get some things finished around the house and helping take care of Alex when I'm out running errands. So far we've removed wallpaper, she's started painting almost all of the remaining trim/cabinets and we have plans to finish doors and prime the future nursery. Thursday is our first ultrasound, so there's been lots of talk about how to paint/decorate the baby's room depending on the gender. We are so very excited to find out what sex this little person is who is growing inside of me! Mostly, I can't wait for Alex and I to be able to talk to it and start calling him "him" or her "her" instead of "IT"! I plan on giving the baby his/her very own blog site after Thursday, so I'll post a link to it here as well :).
Tuesday, July 14, 2009
We will find out more about what medicines Alex will be on at this next appointment with Dr. Shen. Then intestinal rehab will hopefully let us know the results of a series of nutritional blood tests they ran on the day Alex discharged from the hospital.
Alex taking his first stroll to the end of the driveway and back. In the background is Gloria and John's home. You can't see it very well, but the white house on the left is the original farmhouse and the brick house was built-on later.
Only two of about 200 pictures of this cute little deer family that lives around the house. The top picture is of the whole fam...buck, doe and two babies in the front yard. The bottom picture is the two babies in the side yard. They were almost always lounging around the yard outside the screened-in porch. That made for a good picture spectator spot.
Sunday, July 12, 2009
Thursday, July 9, 2009
First bite of real food other than apple sauce!
Wednesday, July 8, 2009
I met a very sweet couple last night at Gloria and John's house. I had run by to grab some clothes and take a quick shower and there was another couple sitting in the driveway when I pulled up. Their names are David and Carol and they drove in from Michigan for some follow up appointments at the clinic. They invited me to dinner with them, so we went to a nearby Italian restaurant. It was so nice to sit down for a meal that was not hospital cafeteria food with some nice conversation. We talked for a long time about a lot of things, but most importantly...their corgi "Dottie" and their daughter's corgi "BB King". They both had lots of similarities to Rusty and the lighthearted conversation was a nice change.
Just the fellow and the dietician have been in so far this morning, so I'm sure we'll have more updates later this afternoon. Love to you all :)
Tuesday, July 7, 2009
But wait...there's more!
Alex ate most of his lunch (slowly just to be safe), his pain is completely under control and there has not been any nausea! One of our sweet aides, Vernetta just came in to tell us that there was a discharge and we will be moving across the hall to a private room. Even if just for two more nights, it will be nice for there not to be two patients with bathroom needs trying to share one bathroom. Plus, there will be enough room for a cot for me to sleep on. This reclining chair tends to fold you up like a mousetrap when you least expect it, so the cot will be a welcome chance to stretch out and sleep. :) :) :)
Alex munched on some Cheerios and orange juice for breakfast. He is handling it very well so far, so they gave him oral pain medication and will wait about 1/2 an hour before taking him off his morphine pain pump. That will be nice b/c then he will be completely disconnected from his IV's for the rest of the day (and maybe for the rest of our stay!). The dietician from the TPN team came by and said they will either decrease his TPN calories and volume or take him off of it totally tonight. It all depends on how his intake throughout today goes. If they take him all the way off it that means last night's bag will hopefully be the last one he will need!
Yesterday the nurse from healing services, Barb, came by and did a Healing Touch energy treatment with Alex. As I mentioned before, his heart rate has been very high throughout his stay, and directly after the treatment it went down to the lowest it's been yet (100 bpm...about 15 lower than the lowest before). It was amazing to watch. We talked for a long time about energy healing and how it's making it's way into the mainstream hospitals. They've done lots of research regarding how it impacts healing. Here's the website she gave me...I found it interesting- http://www.healingtouch.net/.
Things are really going well. It looks like we may be here for a little longer than we were originally told (5-7 days after surgery), but we are in no rush. Driving vs. flying gives us a lot of flexibility as far as all the logistics go. We have been trying to focus on the following verse throughout this whole process, and I think with every step we get a little better at reducing our anxiety and trusting in God to take care of everything from the big stuff like surgery to the small stuff like the where to stay, etc.
4Rejoice in the Lord always. I will say it again: Rejoice! 5Let your gentleness be evident to all. The Lord is near. 6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
8Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 9Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.
God has certainly given us so many "praiseworthy" things to focus on throughout this journey, including our loved ones around us. Thank you for everything...
Monday, July 6, 2009
Relaxing in the waiting area...catchin' some vitamin D with a couple of other patients from the hall :)
Carol and the infamous fountain from previous posts. Just so all you skeptics out there know...she was just as impressed as I first was with the fountain :). Really this picture is of all the cars in the background. They are the entourage for the princess of Saudi Arabia who has been residing on the entire 8th floor of the cardiac building. She is about 80 years old and has supposedly been here for a few months now. At least some of these cars are always in the front circle and I guess have been the entire time the princess has been here. This is the most that I have ever seen...about 6 black Mercedes and 6 black Escalades, all with New York plates, very dark tinted windows, and at least one police escort. The drivers kind of remind me of mobsters standing around with their official-looking black suits and diplomatic blue or red ties.
Alex outside Gloria and John's house after we first arrived.
Sunning the first 'mater from our garden. It wasn't quite ripe enough to eat and I wanted Alex to be able to taste it....so we utilized the sunshiny dashboard for part of the road trip to speed things up a bit. It worked, and boy was it delicious!
Sunday, July 5, 2009
It did take two of our H70 nurses to navigate his bed plus me running behind with his IV pole to get him moved. There is lots of construction going on, so we had to take a route that was a little off the beaten path to get to our new building and floor. Alex was very patient with the three of us as we tried to navigate into tiny elevators and across carpeted areas. Our M53 room is semi-private, but our roommate is a very nice younger guy (looks to be a little younger than Alex) who is awaiting surgery for his Chron's disease. Although the room is a little more cramped overall, Alex has much more room to navigate around his bed to get to both the bathroom and the door.
Alex is feeling much better. He is very tired, but is getting up and down for walks with much more ease than previously. They are reducing the number of calories in his TPN tonight to begin to ween him off of it. His potassium has been low for the last two nights (coupled with low magnesium the night before last), but they say that's not uncommon and are managing it through additional IV infusions as necessary. I think the episode this morning and the back step in diet has discouraged him a little bit, even though he continues to be doing exceptionally well in all other areas. His heart rate was better...down to 114 after the move, which is the lowest it's been since before the surgery. Please send encouraging thoughts his way. He continues to be healing so well and doing a great job of working to get better with walks, rest, and breathing exercises. We just want to make sure he continues to focus on those things rather than the tiny "bumps in the road" so he keeps his spirits and motivation up as much as possible. Also, please pray for a safe flight for Carol as she goes back to KC this evening.
We hope you are all having a blessed Sunday...again, I promise we'll post some pictures as soon as Alex feels up to it :).
We have a wonderful nurse this morning named Marlene who just had a grandbaby of her own on Sunday. Her daughter is a pediatric physical therapist who is about our age. She brought pictures of baby Ty by in her "grandma's brag book" to show off. Now that we have moved to our new room and have a fantastic nurse, they have found a room on the colorectal floor for us. :) And...we got the floor that we requested!! His new room number is M53, bed 19. This is the same floor we were on in January, and the nursing staff was phenomenal. Marlene is also good friends with our favorite nurse from that floor, Barb, so we are going to see if we can get her, too. In January, all the M53 rooms were private, so hopefully that is still the case. We are just waiting for nursing to finish report to start the move.
One specific prayer request-Alex did have a short bout of severe nausea this morning followed by lots of vomiting. It came on very suddenly and was over as soon as it began. God's timing kicked in and Geisler's fellow came to round just as they were paging them. He changed Alex's diet back to clear liquids from full liquids for today until we're sure things are settled back down. He won't miss much of anything other than his red gatorade :(. He is feeling much better and sleeping soundly right now. Dr. Ogilvie (the fellow) said the vomiting and diet change was just "a bump in the road" but the decreased overnight temp, bloodwork, bowel function, and other vitals still looked wonderful.
We'll keep you posted on move #3 :). Love to you all.
Saturday, July 4, 2009
I was able to go get some sleep at the hospitality house that we are staying at last night. It's about 20 minutes or so from the clinic in a suburb of Cleveland. Cleveland-area families volunteer their houses for patients and their family's to stay before, during and after doctor's visits and hospital stays. It is so nice to have a place to get a quick shower and a few hours of some good quality sleep. We are so blessed to be staying with very sweet and caring people named Gloria and John. They also have a wonderful dog named Molly who greets you with a nudge for some petting as soon as you walk in the door. She's very gentle and reminds me a lot of Rusty.
We hope that everyone has a wonderful and safe 4th of July and we will update with some pictures of Alex walking soon! Love to you all :)
Friday, July 3, 2009
Everything else is looking great as well. His heart rate was down a little this morning, oxygen levels are going up, no signs of nausea (Alex thinks I'm paranoid about this one), incision looks like it's healing beautifully and he is in great spirits. We think the doctor will upgrade him from ice-chips-only to a liquid diet today. He is highly anticipating the taste of that first cherry Popsicle, so that will be exciting :). Our prayers are being answered one-by-one...thank you so much for all of you that have surrounded us in those prayers. We'll update after the doctor comes in :) Love to you all!
Thursday, July 2, 2009
Alex had a good night last night after he got settled into his room. The doctor came in a few minutes ago and said he looked much better than he expected for what they put him through yesterday. The composite closure (closing the area with his own tissue in place of the mesh) takes a lot of abdominal manipulation during surgery. His left side is hurting a bit more b/c they had to do a lot more releases on that side. They are making some changes in his pain medications to try to make him more comfortable. He has about 3 ft. of colon left and we will start looking at reattaching after the baby arrives. His Chron's is considered a little more severe than they thought previously b/c of the presence in the small bowel (that was a bit of a surprise). However, the strictures were isolated to about a 8in-1ft. section and all strictures were resolved without having to remove them.
Right now we are waiting on the enterostomal nurse to come and fix him up with an abdominal binder so he can venture out of bed and to the doorway. Then we will venture to the hall and so on and so on. Hopefully we'll be able to make a loop around the nurse's desk by the end of the day. He is not very excited about these excursions and I am always trying to find the balance of nagging ball-and-chain/walking drill sargent/spirometer nazi and understanding wife considering the amount of pain he's experiencing. It will make him heal so much faster and be safer for his lungs, heart, etc if he is as active as possible as early as possible. TPN will start again tonight and run for 24 hours, then cycled back to 12 the next day.
Prayers of praise: Dr. said the "angry" area of colon was much worse than anticipated, but after calling in his senior partner for help, they were able to clean the area up and hand sew things back to very healthy rectal tissue with lots of success; no nausea yet; no loss of small bowel; loop ileostomies that will be easy to close when it comes time; successful removal of all foreign material (mesh and clips) and closure with his own tissue with minimal tension; GI sounds already!; loving and supporting family and friends.
Prayer requests: Nausea to continue to stay far, far away; pain management; tolerating any upcoming diet increases to lead to eventual d/c of TPN; oxygen levels to improve so he can get off oxygen; minimal pain and maximal strength for walking; healing, healing and more healing of composite closure and incision.
Wednesday, July 1, 2009
Carol and I just got back from the post acute care unit to see him and he looked great. He was sleepy and definitely utilizing his pain pump, but was able to talk to us a bit while we were there. If you read this sooner rather than later, please pray that we get into the M53 unit. Those rooms have single beds (no roommates!) and we already know some of the nursing staff from our January stay. Thank you again for all of your prayers...I know we've said it a million times, but we truly could not have gotten through this without all of your support and strength from such a loving and gracious God. Love to you all and we'll keep the updates coming.