Thursday, December 31, 2009
We wish everyone a happy, healthy and safe New Year!
Update on the boys:
Sean is doing well. He looks great but guess I am partial! He's moving around and due out tomorrow if all goes well. He will go home with his dialysis port and drainage bag in place, but both "should" come out on his next appointment.
Jeremy is struggling a bit. He is moving and has been walking a little. He is trying to deal with the pain. His color is back and he looks much better today than yesterday, so I am hopeful that he gets to "feeling better" soon. It is difficult to see our ANGEL in hurting!
Tuesday, December 29, 2009
Lots and lots of waiting.....we had to be there with the donor at 5:30 am. Jeremy's surgery began at 7:30 am and Sean's at 9:30 am. They took Jeremy back around 6 to prep. They didn't take Sean until 8 am.
The update board said Jeremy's procedure began at 8:14 am. Sean's message said they started at 10:04 am. Jeremy's parents got a doctor visit around 12:30pm. During that time they told them that the kidney was in Sean and plumping up! That seemed to be good news. I finally heard from our doctor at 1:00 pm. He said that surgery went well, Sean did well and it looks good. They will watch him for about two hours before sending him to his floor.
We haven't seen him yet, but hope to in an hour or so. I am curious to see if the kidney is working. I want to see Jeremy too. What an angel!! I will update this one later tonight after I see them both.
Keep praying-our donor is such a special person! His family is wonderfully supportive.
Happy New Year!!!
I went to see him this evening when he got settled into his room. He looks great-his color is good. His pain is being managed with oral meds which is different from the last time. They used staples again instead of glue. Be got the "binder" with all the transplant information. I read through it tonight and have a few questions for the doctors already.
Saturday, December 26, 2009
At the last minute-like 10:00 pm we decided to go to midnight mass because the Christmas day mass wasn't working with our traditional schedule. Sean and the kids went to rest for an hour before we had to leave for church. It was a good mass and it left Christmas wide open for family time which is just what we like.
We had our breakfast, opened presents and just hung out for most of the day. We visited a friend and a couple friends came here to visit us. Sean cooked dinner-yummy! Of course he overdid it a bit and didn't sleep well. But all had a great time eating too much and visiting. Our donor left for his hotel in Nashville for some much deserved peace and quiet. Two days with us and I'm sure he was ready for quiet!
Today I went to work and got set up for my sub. It was so peaceful and it is all done (or at least I hope it is). Sean went to dialysis. The kids are playing their new game. Now...when to take down the tree......
Dialysis went well except the people there are complacent at best on some days. Today they are overcrowded due to the holiday and so much goes by the waste side. Sean has a disc thing that we drive all the way to Nashville because it is so important. Well today he told the nurse or tech that it fell off and she said she'd look at it. After 3.5 hours no one had come to look at it, so he asked someone else. They said Vandi is the only place that does it and it isn't that big of a deal. To top it off, they don't have any because they are changing out their stock. (They also didn't have something else he needed today too.) What kind of dialysis center runs out of essential supplies? Needless to say, he is quite upset. We are THREE days from transplant-now is not the time to get an infection!
So needless to say, he will ask the doctor on Monday about this very important piece that requires a drive to Nashville three times a week. I didn't think this little thing was it, but the nurse or tech said it was, so.....it's worth a mention to the doctor. I thought the all important part was what they packed the tube with as he leaves, but who knows?...I still think it's terribly irresponsible to run out of supplies to keep these things covered.
Jeremy is in Nashville and we've gotten to spend much time with him. His family will arrive tomorrow. I look forward to meeting his parents. I've heard of cases where a potential donor's family talks them out of it. So I am forever thankful that our donor's family is supportive of his choice to donate. Jeremy was a little shocked to hear his kidney may only last for 20 years. He was thinking it would last Sean's lifetime. Sean does intend to take care of himself and that precious kidney to help it last longer than 20 years!
I will post as soon as I can after transplant to let everyone know how it is going. I never did find wireless internet in the hospital, so it'll be late when I do. I'll have to wait until I get to the hotel to post.
Have a great rest of the holiday season!
Tuesday, December 22, 2009
Got the donor and got him settled-sort of-at the hotel. We felt bad that we left him high and dry for dinner, but pointed out some close places to eat dinner. We headed home after a long day, ready for bed.
Today we went to Nashville for pre-op testing. It was an all day thing and am tired! We did eat at the Pancake Pantry which was awesome and I am still full like six hours later. The doctor said that the donor is such a close match that he can't believe that he isn't family! I guess your prayers are working so thank you!!!
Our donor got a bit of attention while sitting in the waiting room today. One lady kept saying "In twelve years coming here, I don't think we've ever met a donor!" She was so taken with him. Her husband got a cadaver kidney twelve years ago. They knew nothing but the guy's first name and that he died in a motorcycle accident. We learned that the donor's family has a say in the amount of contact/information given with the organ. This particular family only knew a name and that he was into cars and bikes. I've know others that have contact with the family who was blessed to get an organ. So this lady told him he is an angel and kept on gushing over him and rightly so. He is our angel-there is not doubt!
Seven days left to the big day. Keep praying for us and the donor's family. Some wonderful school here sent him a card to thank him which I thought was a profound idea. I've said it before and will again....I am amazed, blessed and humbled by the thoughtfulness and kindness of people that we know and many that we don't. Our world moves so fast and so do we with phones attached to our heads and computers on our laps, that it is a blessing to see people's hearts!
Love to all and we wish you all a happy holiday season. I did try to do cards, but most are still sitting on my counter. Please know that if yours didn't come, that is where it is. I might get them out in the new year-lol. Have a blessed and safe holiday season!!
Thursday, December 17, 2009
I got this email today and thought I'd post. Everyone has been so supportive of us and would love to help someone else. Prayer is powerful and free. Happy Holidays all!
Prayer request for Gary and Cindy Hogman by way of Faith PresbyterianChurch, Memphis , Tennessee .Gary is serving in Iraq while his young wife is fighting cancer here. See his Request below.From: Bobby S. Briggs, MSgt, USAF823 ESFS/SFOCFlight SergeantBAGHDAD AB, IRAQMy name is Gary Hogman. Some of you receiving this know me, some do not. Mywife, Cindy, is 32 years old and has just been diagnosed with stage 4cervical cancer.Her chances for survival are very slim. She was pregnant with our secondchild and had miscarried recently at 3 Months; and now we know why. This isa request for you to forward this e-mail to everyone you know asking forprayer. The more people that pray for her to be healed, the better. Pray andforward. It only takes a second to hit 'forward.' Please do it and don't delete this. Your prayer can, and perhaps will, saveher life. Please pray and ask everyone you know to pray for the HEALING ofCINDY HOGMAN And the removal of all cancer from her body, so she may enjoyall that life has to offer, and to continue to be the wonderful mother toour 5-year-old son Michael. The power of Prayer is unsurpassed. I want the whole world to have her intheir prayers the next few weeks. God will hear our cry. Please do not beoffended by my plea. This is only a request for your help. Thank you fromthe bottom of myheart for reading this and helping with our request for healing! No wordscan express the power we have when we each do a little to come together. Regards, Cindy's husband - GaryThank you, and please send it to the far reaches of our world!
Saturday, December 12, 2009
The schedule is crazy this time of year. Dayle has exams, youth leader dinner, bowling party, a chorus program, driving class and lessons. Garett has a Boy Scout potluck and bowling party. That is for this week.
Sean wanted to go back to work b/c he is tired of these four walls. However, after last night and tonight, I don't see it happening. He can make it about an hour or so before he needs to sit down. Then he's tired. I hope he makes the best choice for him and his body.
Thursday, December 10, 2009
He also got a very cautious return to work slip. The doctor looked at me and told him that if he gets tired he needs to go home. He is still not to lift, so a friend will have to carry his laptop back from his car to the building. His boss is allowing him work short days on M, W, F due to dialysis. Then whole days on T & Th. Funny enough we are talking about a total of 6 days, but I'm sure the same four walls are making him stir crazy.
When going to turn in said work slip, we had nice visits with friends. A good dose of love and support is always good for the soul! During this trip, we did hear about a young person having failing kidneys within our own CMCSS family. This saddens me and I hope that the family will one day be able to embrace the love and support we have been so blessed with during this adventure.
I posted some new-old to me-links that I was sent in the beginning of this. Believe it or not, someone at the very beginning of this suggested that I keep all those who inquired informed. For those that don't know, this group is a big one as I posted on campbellyardsales, craigslist and Facebook looking for a donor. I personally emailed several this evening and will continue until I finally finish. It is a great time of year to say hello to people. (Side note: We've not yet done our Christmas cards-lol.)
Thanks again for all the love and support. Happy holidays to all this season. May you be bless with many little joys!
Thursday, December 3, 2009
The first omg was when the Red Cross lady called the day prior to the deadline for people to donate. Because clearly it needed to be prepared earlier as I kept asking. With little time, I was the only one able to donate. (The lady told Sean that the St. Louis people had NO time to donate and get it here for the surgery.)
Today was another of those days.....I was told by Mary Schaefer the social worker at Vandi that the application process would be done in the hospital. I asked several times and they said that is done at the dialysis center. When we asked the dialysis center the Wed. before Thanksgiving the lady doing the intake paperwork said "this is the form." Well of course it wasn't the form! We kept asking. So today a nice lady got on the phone to discuss it with me. She is checking to see about getting it done and will call me back. The issue I have with this is that we are on such a limited time, why couldn't they do it during pre-op or at the hospital, like I asked. We have a maximum that insurance will pay and it would be great to take some load off of that total. With the current bills posting, it looks like we might make that total prior to transplant!
Also, today, the Vandi social worker, Mary called to say she needs to meet with us again b/c it's been over 7 months since she met with us. Funny enough....she has done little for us and have no idea what her purpose is. So....she asked Sean three questions on the phone and we are done! Good!!!
A call from our insurance came in today about "following Sean's case." It's a catch 22 she said, b/c in order to precertify him for the transplant, this has to be approved by us. So yes I agreed. I answered some questions about his history. She said she is finishing the report and will send me a copy of it. This too seems like it could have been done prior to now. (The paperwork was not submitted to insurance until this past Monday from the case worker-Margo.) Until pre-approval saying it's medically necessary, you just think oh my. Sean's kidneys were failing, but still working all be it he was in discomfort. I would rest easier if this was done prior to removing the somewhat functioning kidneys. A lifetime of dialysis was not in the plans.
The dialysis center today wouldn't let me come back to set him up today. This pissed me off because this past Saturday the front office worker had a child with her that was not only in the office but moving around the center in the back for much of the time we were there! So I have to ask myself how that is possible. Then they let another man back with his wife. What is the deal? What is good for one is good for all.
All in all today the general mood was irritation! I did find nice people in the midst of it all, but it is still frustrating. I don't think that these people understand the emotional load this takes and how much easier planning ahead would be for the families in the middle of all of this. I had time and energy to handle this crap prior to running every aspect of the house. Now I have no time or energy to deal with this stuff.
Wednesday, December 2, 2009
Staples come out tomorrow then off to dialysis. After this Saturday, he will switch to the Monday, Wednesday, Friday rotation since that is the rotation his kidney doctor-who we love-works/oversees.
Tuesday, December 1, 2009
Well today was dialysis and his dad took him. I guess his blood pressure got so low at dialysis that he did or nearly passed out! I don't know if I should rearrange my schedule and take him myself or not. I have the days, but it sucks b/c I have to take the whole day off. I can only take a half or whole day and the half day time doesn't work with his schedule. They really don't like us back there for long, so it's likely I couldn't do anything anyway.....It's all just a bit scarey.
Of course, when you consider his entry weight compared with his exit weight, it becomes a dah. They've been keeping him at 94.8 kg. He began at 96 kg and they took him to 92kg which is not what he usually does. I wish I knew how they determined that they were taking more out than usual. I will be going on Thurs. so you know I'll ask how that changed. He didn't like the tech today, so we hope he doesn't get her again. I will say something-he said she doesn't pay attention. For what this is costing, I will say something about that too.
Four weeks from today is the transplant. It does depend on two things-one is the obvious...that he is well enough and two which is funny....if insurance deems it medically necessary. I would hope that it is medically necessary!!! He has no stupid kidneys. So.....we are hoping for approval ;-) The goal of this was short and sweet.
He is getting around fairly well, but quite slowly. His energy level is a bit down. Ten minutes or so on his feet and he needs to rest. Honestly, with 57 or so staples and all they did inside, I think he's doing well!
The kids are managing this all well. Garett's teacher came and told me today that if she didn't know, she wouldn't be able to tell. That to me is a wonderful thing. We are trying to make their life as normal as possible, but gave everyone involved with them a heads up about what is going on here.
Dayle is taking drivers education more for an insurance discount than anything else. The teacher today-after her first lesson-said if it were up to him, she's ready for her license! Good to know, but she will complete this class and the other 4 hours of driving ;-) She does well. She drove to church and back in the stick shift this past Sunday. I was very proud of her and how she was able to manage shifting and the wheel. She's not really been on main roads with the stick. Yeah, baby!!!
Some things I think I forgot to mention:
We came home the Tues. before Thanksgiving. My mom had cleaned the house, ironed the sheets and made my bed. She gratiously offered to leave and I was so very tired that I accepted! I told her I was trying to wait until after Thanksgiving, but she said she didn't mind, so I accepted. I like my routine so this was a great thing. We spent the next couple of days by ourself getting some much needed rest!
Thanksgiving was from Cracker Barrel. It was okay-I do believe it'll be the only year we order in. I want my big Thanksgiving with all the craziness it entails. We quite enjoy the company and then the quiet at Christmas.