Wednesday September 28, 2011

Great news everyone....we are going home today!!! We are waiting to be discharged and are ready to goooo HOME! We also have more great news....we got approved for Medicaid yesterday! There is a person in the hospital that pushed our application through (not through disability) and got us all approved. I already had pregnancy Medicaid but now Embyr has insurance too. What an answered prayer!! The Medicaid is retroactive back to August 1st, that means we still have a lot of bills from July before his hospitalization. We are truly blessed to have such a great weight lifted off our shoulders.

Josh is doing so much better, he got his wound vac off on Monday and just has a regular dressing over it. He will be coming back to the hospital three times a week for outpatient rehab and they will also redress his wound on those days. He has been walking without a walker the last few days and getting stronger. He will be getting his ostomy reversed in about two to three weeks...more hospital time but we are so happy he will start gaining more weight after he has that surgery.

We are so overjoyed and thankful today...we are also so grateful to all of you for your constant love, support, and prayers! We love you so much!

Josh and Kalyn

Saturday September 24, 2011

First things first...today is our seventh anniversary!!!  I am so happy to have Josh here with me to celebrate it and to know that I didn't loose him.  I have faith that we will have many more.  I have a lot to catch you all up on since I have not blogged all week.  Tuesday I wasn't feeling well and I found it harder than usual to get back in the swing of things.  I am so thankful that Josh's mother has been here to help with everything.  Josh is getting much better, he is walking further everyday and working harder with physical therapy too.  Yesterday the surgeons came in and removed the last three retention rods on his wound (these things were causing him a lot of pain) and said that it is looking so much better.  They also say that he may be able to get rid of the wound vac by Monday.  His wound isn't completely closed yet but they say that it should grow new skin and make a scar soon.  His proteins have sort of plateaued  but we are hoping that they will go up more soon.  All the doctors seem to think that they will and when they get a bit higher he will be able to have his ostomy reversed before the next chemo treatment.  He has been learning how to take care of the ostomy bag and how to empty it, because pretty soon he will have to be doing it at home with no help.  The hospital is looking to release him some time this next week.  We don't know if he will be going to rehab or home...we're still crossing our fingers that he will be able to get some sort of rehab before he comes home.  He is a little apprehensive about coming home without it.  The last few days he has been trying extra hard to do normal things like he would be doing at home.  He's wearing normal clothes during the day and sitting up in the chair for all of his meals.  He is walking further everyday and even walked outside yesterday!  He still needs a walker for most of his walks but has actually done a few without it too.  I am so proud of him for pushing himself so hard when I know he still isn't feeling very well.

Josh and I both want to thank everyone who has donated to his medical fund recently.  We are so touched that all of you didn't even hesitate and are willing to give as much as you can.  We are both so overwhelmed with gratitude and want all of you to know how special you are and how much we love you!

Thanks again...with all our love,
Josh and Kalyn

Monday September 19, 2011

I forgot to tell all of you in the last post I made that Josh had a cat scan last Thursday to see how the chemo did and they said that things look smaller and that they have a good hold on the cancer.  This is great because now he gets to have a big break before the next treatment.  He is doing so much better, he has gotten up everyday and worked really hard with physical therapy.  They say that he will hopefully be moved to a rehab facility a week from today.  They are just having a hard time finding the funding to get him into such a place.  We are really praying hard that they find a place because he is still not ready to go straight home.  The doctors have been cutting back his meds in hopes of having him off of some of it before he leaves next week.  The staff is training him on how to change and empty out his ostomy bag.  He has been trying to figure it out but is still a little unsteady with it at times.  This is all I have time for today, but I hope it catches you all up on his progress.  Thank you so much for all of your prayers!

Much Love,
Josh and Kalyn

Friday September 16, 2011

Josh is having more good days than bad lately.  His mouth sores have gotten much better and are almost completely gone.  He has been eating really well, we can tell because his proteins continue to rise.  He is definitely on the uphill climb from his last round of chemo.  They are going to give him six more weeks before they do another treatment.  His body really needs a chance to heal, they expect that his surgical wound will start to close in the next few weeks.  We still don't really know if his ostomy will be reversed like we thought.  His proteins have to be even higher and they really want to make sure he is in good condition before they do something like that.  He is going to be getting some rehab we just do not know where or when.  We were hoping he could get into the rehab here at the hospital but without any insurance/medicaid it's virtually impossible.  We have no idea where he will go next but we are praying for the best outcome for him.  He has been doing a lot more physical therapy and walking more everyday.  He has lost a lot of weight and seems really frail, he tires easily still but we are hoping that with this break from chemo he will improve in all those areas. 

I don't know if any of you have noticed that there is now a DONATE button on the left hand side of the blog underneath the top picture.  A few of you have asked what you could do to help us and I have basically been saying "I don't know".  This is our way of letting you all feel like you are helping us with everything.  We are struggling with bills and finances to say the least right now.  Any donation made will be gladly accepted and help us so much.  Please pass this on to anyone you know that would like to help.  We want to continue to thank you all so much for your continued prayers and well wishes.  We are so grateful to everyone for all the help, love, and support!

Love,
Josh and Kalyn

Tuesday September 13, 2011

Josh's blood counts are back up!  He is feeling a bit better but is still suffering with the mouth sores.  The last couple of days he has gotten out of bed and gone for a couple of walks each day.  He has really been pushing himself to get active again.  The doctors have discontinued his antibiotics and antifungals, two less things to take.  His wound is looking much better and holding the vacuum for three whole days without beeping.  This is because his proteins have continued to go up and it is starting to heal.  We don't really know what the next steps are as far as his care.  We are hoping that they will get him some good physical therapy, sew up his wound, and reverse his ostomy before he comes home. 

On another note, Embyr started pre-school on Monday!  She was so excited and went into the classroom with no problems...she was ready.  I on the other hand had my mommy moment in the parking lot and had to cry a little, especially when I realized Josh didn't get to see her off that morning.  I took some pictures of her though and brought the camera so he could see his baby on her first day of school.  I went to the OBGYN doctor on Monday too and got to hear the heartbeat and found out that our next visit in October will be when we get to find out the sex of the baby.  I got back to the hospital Monday afternoon and ran into a nurse we had on another floor and her background was OB.  She asked how I was and when I had been to the Dr. last, I told her I had just been and that I got to hear the heartbeat.  She was so excited for me and was so sweet, she went to get one of the heartbeat things and brought it into Josh's room.  Josh, Embyr, and his Mom all got to hear the baby's heartbeat.  It was such a sweet moment! 

We have some specific prayer requests right now that I want to ask all of you for.  This whole time that Josh has been in the hospital we have been waiting to be approved for Medicaid.  The oncologist's social worker has been the one helping us and she informed me yesterday that it isn't looking good.  In order for Josh to get Medicaid he had to apply for Social Security Disability.  Well, they are acting like he will be able to go back to work in no time...yeah right!  We just don't understand their thinking, he can barely get on his own two feet and has to use a walker to get down the hallway.  On top of that, he still has so much more chemo to go and working will be incredibly difficult for him in the next year.  We are praying that our social worker can get through to these people and get them to realize how serious his situation is.  Meanwhile, while we are waiting for everything to be approved we have all of these bills rolling in.  I am just trying to ignore them for now until we find out more about his situation.  So, my specific prayer request right now is that we get his Medicaid to come through for him.  Thanks everyone for your continued prayers and strength.

Josh and Kalyn

Saturday September 10, 2011

Okay....so now I can't get out of the habit of blogging every couple of days.  I have not been at the hospital as much since Thursday.  Josh's mom is out of town and I have mainly been at home taking care of Embyr and the house.  It has seriously been so hard, I am so used to sleeping up here with him and now I've been at home the last three nights and am just really missing him.  As far as how he is feeling and doing, I think the last few days have been pretty hard on him mentally and physically.  The chemo side effects have really set in and his numbers have gone way down.  He has sores in his mouth and down his throat that are pretty painful for him, it makes it difficult for him to eat.  I do think that he is on the uphill climb now, I have been up here all day today and the doctors say that his numbers are slowly coming up and that his liver enzymes have come down a bit.  His protein levels have continued to go up as well.  He feels really exhuasted and is having back pain from being in the bed so long.  He has also been batteling fevers the last couple of days, nothing really high but none the less they are keeping a close eye on things.  The doctors also have him on a few different drugs; one to bring his heartrate down, one to fight the overwhelming amount of yeast in his body, and one antibiotic just in case.  We are praying for strength as he has none at the moment and that his blood counts continue to come up quickly.  Giving him all my love and all the love I feel from all of you.

Love,
Kalyn

Wednesday September 7, 2011

Two days without blogging again...geeze.  I am slacking on the job, I know a lot of you read this everyday and I'm sorry I got behind.  No worries though, no major changes on our end.  Josh is starting to feel the effects of his last chemo treatment.  He is really exhausted and his numbers have dropped again.  This is all expected but still really hard on him.  Yesterday he got to go outside since it was so nice and his numbers were still really high.  We brought him lunch and took him outside for a picnic.  Then later he got up and took a really good walk, which really helped too.  Today they came in to re-do his wound vac and told him everything looked so much better and that they were so excited that it held since Sunday.  He was so happy to hear that it's not leaking as much and actually starting to heal.  Hooray for his proteins going up!  All in all, the doctors seem to think he's doing so much better even though the chemo has him a bit down.  The surgeons told us that if his proteins continue to go up and if they get all the way up then maybe they will reverse his ostomy in the next few weeks.  Until then, they are trying to get him through this bout with the chemo and then they will really start some good rehab.  I will try to keep everyone posted as we get new news.  Thanks again to all of you keeping up with his progress and continuing to pray for him.  We are so very thankful!

Much Love,
Josh and Kalyn

Sunday September 4, 2011

Two days without updating everyone seems like forever. Friday, my mother-in-law called me first thing in the morning to tell me she thought Embyr might be sick. I ran home just in time for her to throw up all over me! I got her into the dr a couple of hours later and she threw up one more time while we were there. She had a high fever and the dr said a stomach bug had been going around and that's probably what was going on. So, with Embyr having a fever I was unable to go the hospital until last night. We literally laid around for two days. My dad was actually here during that time as well and did some manly things that only a dad or a husband can do. We really appreciate Papa and all he did for us while he was here. Josh's mom Wendy has been here too and has helped tremendously. She has been spending the night with him while I can't and also cooking and trying to help with Embyr and I. I literally could not get all of this done without everyone's help! Yesterday I got all my hair cut off so I could join the club.

As far as how Josh is doing, he's hanging in there. His appetite has been better the last few days and they say that his pre-albumin levels (pre-protein) have been coming up. He is off of the nutrition through the IV because of his liver enzymes. We're hoping he will get to stay off of it and get those protein levels up on his own. The oncologists say that hisl white blood cells are really high right now because they are giving him a medicine to bring them up super high before they drop from the chemotherapy. They are hoping the numbers won't drop as low as last time by doing this. He has also gotten a couple of red blood cell transfusions. Those have given him a little more energy. Right now I am sitting in his room while they apply new dressings and suction to his wound vac...again! That machine beeped again all night last night, luckily I had my earplugs and Josh had lots of good drugs, so we got some sleep. It was really nice to spend the night with him last night after being away for two days. It was also good to be with Embyr for two days too. Now I am back to trying to find a good balance between the two of them. I think I am going to check into Embyr going to school down the street from us for two days a week. That will probably help with the balance of time between the both of them until Josh gets home. Once he's home it will be good too. All Embyr knows is that she is super excited to be going to school. We also finally told Embyr that she is going to be a big sister. She is so excited and said we need to name the girl "Monkey" or if it's a boy to name it "Jungle Under the Sea". Hilarious! Hope all of you out there are doing well and have a great holiday tomorrow!

All our love!
Josh and Kalyn

Thursday September 1, 2011

Okay so I've had a rough couple of days and haven't had time to blog, but I'm going to try and update everyone now.  The last thing I think I wrote about was Josh having to have so many procedures on Monday.  He had a very long day, when they finally got done with all of the small bowel x-rays (it's a long process of having him drink stuff and then taking several pictures throughout the day) it was midnight and he hadn't eaten all day.  He was a bit grouchy to say the least.  Yesterday he had an okay day, the surgeon came in and set up the wound vacuum again luckily it stayed but as I am typing this they are trying to work on a leak.  Ugh!  Literally neverending with the silly wound vac, poor guy.  He also started his chemo treatment yesterday evening and got through all of it really well.  They gave him a drug yesterday as part of the chemo he has not had before and they warned us that there could be some pretty bad side effects while it was going in.  Thank God he did not have a bad experience, he had a mild episode of the shakes and lightheadedness but other than that he did really good.  The chemo treatment was not over until about 9:30pm last night and after they were finished they gave him 100mg of prednisone which made him wired so he was unable to go to sleep last night until about 2:30am.  He woke up pretty groggy this morning and  has had his breakfast and lunch and a good walk.  Yesterday the doctors took him off of the nutrition through the IV and all the antibiotics  because his liver enzymes were rising.  They are hoping to give his liver a break and figure out if he has any infection from the fluid on Monday.  If he does have some infection they will adjust the antibiotic and get him on the right one. 

I have had a couple of long days too, not sleeping well and feeling pretty nauseous.  Monday I waited around all day while he was getting his tests run and tried to eat as much as I could but was worried and upset about some things.  Long story short I got really nauseous and threw up, I have not actually thrown up at all during this pregnancy and I thought I was getting over the morning sickness part of things.  I guess I was wrong and should have eaten more and not stressed so much.  And I know what all of you are going to say...take care of yourself, eat, rest, etc.  I really am trying I promise, it's just that this is literally the most stressful, scary and unsettling experience I have ever been through. 

I really want to say Thank You again to all of you and my family who come by, bring flowers, call, pray, and just think about Josh and what we are going through.  I could not get through all of this without all the love and support and I am very very thankful!

Kalyn