tag:blogger.com,1999:blog-64902564823320480922024-03-13T22:33:21.715-04:00Smith Family Kidney AdventureNews and musings...both notable and mundaneUnknownnoreply@blogger.comBlogger136125tag:blogger.com,1999:blog-6490256482332048092.post-36594575685428184412010-11-29T22:53:00.005-05:002010-11-30T00:02:04.460-05:00Settling InWe arrived at the airport in Burlington on Tuesday night to a crowd of 20 smiling faces with signs, balloons, flowers, and hugs! It was a wonderful greeting from family, homeschooling friends, and church family! Thank you to those of you who came out on a late night and to those of you who wanted to come, but couldn't make it. What a sweet surprise! <br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_-2qG0AK1ZfA/TPR4De8NM_I/AAAAAAAAAj4/kqupKe4zEEM/s1600/IMG_3133.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://1.bp.blogspot.com/_-2qG0AK1ZfA/TPR4De8NM_I/AAAAAAAAAj4/kqupKe4zEEM/s400/IMG_3133.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5545189042440451058" /></a><br /><br />Samuel had to be up at the hospital on Wednesday morning for labs and to check in with the doctor. The morning stretched out as we visited and shared our exciting news with friends at the hospital.<br /><br />Despite his original intentions, Samuel wasn't up for a road trip on Thursday morning so half of us stayed home and the other half traveled to southern Vermont for Thanksgiving. I was very sorry to miss the time with extended family, but Lydia and I managed to throw together a respectable Thanksgiving dinner and we enjoyed a fun evening of card games and Wii. By the way, among the traveling group was Hannah. She is doing great and healing up well! <br /><br />It was great to be back fellowshipping with our dear church family on Sunday. So many have been praying. What a testament of God's faithfulness to see Samuel walking into church! I'm only sorry Samuel's smiling face was hidden behind the mask he has to wear for a season while out in public. He only lasted through the first half of the service, but it was wonderful to have him there at all.<br /><br />This morning I wept for joy and then cheered, screamed, and chased Samuel around the kitchen for a hug when I realized it was Monday and we didn't have to go to the hospital for dialysis! Oh, what a relief! What a joy!<br /><br />Please continue to pray for us as we settle into a new normal. There is processing, adjusting, restoring, reordering, and cleaning that needs to be done after living in varying degrees of survival mode for 3 1/2 years. Lots of work ahead, but by God's grace we will take it slow and make it through!Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-6490256482332048092.post-48618277523838958332010-11-23T07:54:00.002-05:002010-11-23T10:34:56.604-05:00We're heading home!Samuel and Hannah have had a few days to recuperate and get used to their new bodies plus and minus kidneys. They weren't up to doing much, but we made a point to get them out of the hotel room at least once a day for a walk. We found a nearby cinema with 24 movie theaters and learned that tickets are not expensive if you go before noon. That was just their speed so we went a couple times. Shuffle in, sit for a couple hours, shuffle out.<br /><br />Samuel has also developed a hankering for Whataburgers and mango smoothies from Panera. Smoothie and burger runs have been an almost daily activity. Add to the schedule lots of naps, the history channel, and some dinners out and you've got a pretty good idea how they've spent the last few days.<br /><br />Yesterday in clinic Samuel and Hannah both got official clearance to head home! Labs are good, incisions are healing. To celebrate, we decided to drive into downtown San Antonio. Along the way, Samuel needed a snack so, of course, we had to stop at Whataburger. Up until now, we had only been using the drive-through, so yesterday's visit inside an actual Whataburger restaurant was a big event. We all sat and took great pleasure in watching Samuel enjoy food! <br /><br />Here is Samuel schmoozing with the Whataburger manager. We'll have to make one more trip to Whataburger today before we leave town because the manager gave Samuel a voucher for a free burger and you sure won't find a Whataburger in the Northeast!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_-2qG0AK1ZfA/TOvPK5vwLmI/AAAAAAAAAjg/cqLiwQpmhjE/s1600/P1050348%2Bsmaller.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://1.bp.blogspot.com/_-2qG0AK1ZfA/TOvPK5vwLmI/AAAAAAAAAjg/cqLiwQpmhjE/s400/P1050348%2Bsmaller.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5542751552616279650" /></a><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_-2qG0AK1ZfA/TOvPhleCoKI/AAAAAAAAAjo/wkc23gHHhcU/s1600/P1050351%2Bsmaller.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 267px; height: 400px;" src="http://2.bp.blogspot.com/_-2qG0AK1ZfA/TOvPhleCoKI/AAAAAAAAAjo/wkc23gHHhcU/s400/P1050351%2Bsmaller.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5542751942310273186" /></a><br /><br />We eventually made it downtown and did some shopping at the Market Square and had a late lunch at a Mexican restaurant, Mi Tierra. We had the full experience complete with Mariachis singing at our table!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TOvPuoLP9wI/AAAAAAAAAjw/6al3EvEf_bc/s1600/P1050352.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TOvPuoLP9wI/AAAAAAAAAjw/6al3EvEf_bc/s400/P1050352.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5542752166375061250" /></a><br /><br />We also went to the bakery at Mi Tierra and got a box of traditional Mexican goodies for the dialysis nurses back home. It's not chocolate, but hopefully they'll still enjoy the treats! I can't believe I actually got the box into my suitcase!<br /><br />Well, I still have some things to do before we head out. Can't wait to see the other kiddos! We are scheduled to land in Burlington at 10:30 tonight. <br /><br />If you don't hear from me for a few days, you should assume that all is well. We are coming home and jumping into a busy schedule. Samuel has an appointment up at the hospital with Dr. Guillot bright and early Wednesday morning and, of course, that will include a visit with his beloved dialysis nurses! Then those in our family who are able and available will be driving down to Brattleboro on Thursday to celebrate Thanksgiving with family. It truly will be a celebration! We have so much to be thankful for!Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-6490256482332048092.post-45793523444137013372010-11-19T19:02:00.002-05:002010-11-20T11:22:01.627-05:00Happy Birthday, Lydia!Today my baby turned 13! What a lovely young woman she is becoming! I know Lydia is being well-cared for and loved on by family and friends (thanks, everyone!), but it is hard not to be there to celebrate with her. <br /><br />While not a member of our family's kidney club, Lydia has suffered in other ways through our kidney adventure. She was 9 years old when this craziness started. I am trusting that the Lord will use these difficulties in her life just as He is doing in mine and Tom's and Katie's and Samuel's and Esther's and....<br /><br />Happy Birthday, dear Lydia! You are loved!<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TOcedAhtt4I/AAAAAAAAAjY/sP-54zfjwBQ/s1600/P1030595%2Bcropped.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 186px; height: 400px;" src="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TOcedAhtt4I/AAAAAAAAAjY/sP-54zfjwBQ/s400/P1030595%2Bcropped.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5541431350209132418" /></a>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6490256482332048092.post-6513306808007493372010-11-17T16:05:00.000-05:002010-11-17T18:48:22.002-05:00Hallelujah, He's Out!Samuel was discharged from the hospital this afternoon, only five days after receiving a new kidney! To see him walking around, laughing, eating, and teasing his sister, you would never guess that he just had surgery. It is unbelievable! Hannah is a little envious of Samuel's newfound energy.<br /><br />Samuel and Amanda, the exchange coordinator, say goodbye as Samuel checks out of the hospital.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TORhWolj5kI/AAAAAAAAAjQ/J73_ObhtNoQ/s1600/P1050309%2Bsmaller.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 289px; height: 400px;" src="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TORhWolj5kI/AAAAAAAAAjQ/J73_ObhtNoQ/s400/P1050309%2Bsmaller.jpg" alt="" id="BLOGGER_PHOTO_ID_5540660483052529218" border="0" /></a><br /><br />Today just happens to be my birthday and I couldn't have asked for a better gift! The more we learn about Samuel's sensitivity level, his chances of finding a match, this exchange, and how it came about that Samuel was included, the more we are in awe of what the Lord has done! What a miracle! What a gift! We are so thankful!Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-6490256482332048092.post-1180829579214250752010-11-14T20:25:00.002-05:002010-11-15T01:30:17.692-05:00One out, one to go!After beginning the day feeling like she was going to die, twelve hours later Hannah checked out of the hospital!! She is now settled comfortably in the hotel and is looking forward to a night of uninterrupted sleep.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TOCuG3p6GSI/AAAAAAAAAjI/3Y4nc0G7dV0/s1600/P1020067%2Bsmaller.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 400px;" src="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TOCuG3p6GSI/AAAAAAAAAjI/3Y4nc0G7dV0/s400/P1020067%2Bsmaller.jpg" alt="" id="BLOGGER_PHOTO_ID_5539618974707882274" border="0" /></a><br />Much to Samuel's dismay, we had to leave him and Tom behind in the hospital. The "problem" is that he is feeling too well and doesn't think he needs to be in the hospital. The lab results confirm his progress. His creatinine this morning was........wait for it........1.1! That puts him in the normal range for people with two kidneys!<br /><br />Samuel has had enough of the foley catheter. It is really bothering him and he wants it out - now! He is scheming of ways to bust out of the hospital. His nurse assured him today that the doctors will not let him leave before day #5. <br /><br />We'll be doing our best to keep Samuel distracted for the next couple days. Grandpa Ed is doing his part by teaching Samuel how to play poker!Unknownnoreply@blogger.com10tag:blogger.com,1999:blog-6490256482332048092.post-17116641759270038172010-11-13T15:03:00.011-05:002010-11-14T00:33:09.267-05:00His Mercies Are New Every MorningIt has been a great day so far! After a few rocky hours last night, Samuel's fever went away sometime in the wee hours of the morning. When I came down to see him at 7:30, he was sitting up in a chair looking fantastic. By 8:30 he was moved up to the transplant floor. At 9:30 he had a bowl of rice krispies. By 11:30 he had walked the loop around the floor two times on his own initiative. At 12:30 he ate a hamburger! By 2:00 he had done three more laps. All this in less than 24 hours after getting out of surgery! Unbelievable!! But wait, there's more....his creatinine was 2.4 this morning!<br /><br />Hannah is feeling like she got hit by a train and is having some pain from the leftover carbon dioxide that was used to inflate her abdomen. Her foley catheter was removed and her IV was disconnected, though not removed from her hand. Those changes are making it easier for her to get around. She still has a tiny catheter inserted into her incision that is delivering some steady pain relief to the surgical site.<br /><br />Samuel was determined to visit Hannah before she visited him, so as he was being transferred from the ICU to the transplant floor, he took a little detour to the 5th floor to surprise Hannah. Amanda Weichold, our wonderful exchange coordinator here in Texas, happened to be there with Hannah and we all had a nice visit.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_-2qG0AK1ZfA/TN7wbmuKK6I/AAAAAAAAAjA/GQ-vbCA1b80/s1600/P1050302%2Bsmaller.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 267px;" src="http://1.bp.blogspot.com/_-2qG0AK1ZfA/TN7wbmuKK6I/AAAAAAAAAjA/GQ-vbCA1b80/s400/P1050302%2Bsmaller.jpg" alt="" id="BLOGGER_PHOTO_ID_5539128948753574818" border="0" /></a><br />Hannah later returned the visit and claimed the title of the first to walk to visit the other. That's Tom's cousin, Nancy Copeland Kelley on the left. Another cousin, Katherine Copeland Blume is pushing the back-up wheelchair and following behind. Both ladies arrived yesterday afternoon to join in the fun.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TN7wIEj2maI/AAAAAAAAAi4/VT9ocs9igvA/s1600/P1050306%2Bcropped.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 368px;" src="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TN7wIEj2maI/AAAAAAAAAi4/VT9ocs9igvA/s400/P1050306%2Bcropped.jpg" alt="" id="BLOGGER_PHOTO_ID_5539128613166029218" border="0" /></a><br /><br />Here are my two amazing children. You would never guess from looking at them that they had both just had surgery.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TN7vmAyC2nI/AAAAAAAAAiw/0hfkkwlBk8k/s1600/P1050308%2Bsmaller.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 267px;" src="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TN7vmAyC2nI/AAAAAAAAAiw/0hfkkwlBk8k/s400/P1050308%2Bsmaller.jpg" alt="" id="BLOGGER_PHOTO_ID_5539128028036258418" border="0" /></a><br />News of the historic paired exchange is spreading. A local TV reporter, Wendy Rigby at KENS5, interviewed Samuel while he was in pre-op yesterday. Her story was carried by our Burlington station, WCAX. This morning at breakfast in the hotel, family members were surprised to see a clip on CNN.<br /><br />Samuel's only compliant about the video was that he thought he had said a lot of great things about the exchange, but they only included him saying, "I think it's really cool." He was also disappointed that they didn't include his shout out to his dialysis buddy, Josh. :)<br /><br />If you haven't seen the video, here is a link you can copy and paste.<br /><br />http://www.wcax.com/global/story.asp?s=13493686<br /><br />This exposure is great! The more people who know about the option of paired exchange, the better! Let's get a kidney for Josh and Molly and Chelsea and Stephanie and Mary and Katie G. These are just a few of the 87,000+ people who are waiting.<br /><br />If you would like more information about becoming a living donor for someone who needs a kidney, please find the nearest transplant center and give them a call.<br /><br />If you are in Vermont or northern New York state, you can call the toll-free donor hotline at Fletcher Allen Health Care. The number is 877-467-5102.<br /><br />It could make a world of difference for someone who is waiting.<span style=";font-family:";font-size:10pt;" ></span>Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-6490256482332048092.post-33165979954629150772010-11-12T22:04:00.005-05:002010-11-12T23:34:49.500-05:00Small hurdleSamuel has a fever that is making him restless and more uncomfortable. It is likely a reaction to an immunosuppressant drug that was given during the transplant. They are doing blood and urine cultures just to eliminate other possible sources. He is still getting great output from the new kidney. Hopefully, some time and some Tylenol will help with the fever.<br /><br />Some rest probably wouldn't hurt either. We are all in need of a good night's sleep.Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-6490256482332048092.post-84743817394221062992010-11-12T16:23:00.002-05:002010-11-12T17:13:36.015-05:00Tears of JoyWe've got urine, lots of lovely urine!! Samuel has a working kidney! Creatinine is already dropping... 6.2 yesterday, 4.5 after only one hour in its new home.<br /><br />Samuel is a bit uncomfortable (to be expected) and not really awake yet. He moans every now and then. Everything is proceeding normally, without complication.<br /><br />Hannah is drifting in and out of sleep, waking up to join in a conversation for a moment and then falling back asleep.<br /><br />What a weight has been lifted. I feel like I can breath again! The tears are flowing freely.<br /><br /><blockquote>"For this reason I bow my knees before the Father,<br /><br />from whom every family in heaven and on earth derives its name,<br /><br />that He would grant you, according to the riches of His glory, to be strengthened with power through His Spirit in the inner man,<br /><br />so that Christ may dwell in your hearts through faith; and that you, being rooted and grounded in love,<br /><br />may be able to comprehend with all the saints what is the breadth and length and height and depth,<br /><br />and to know the love of Christ which surpasses knowledge, that you may be filled up to all the fullness of God.<br /><br />Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us,<br /><br />to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen."<br /><br />~ Ephesians 3:14-21</blockquote>Unknownnoreply@blogger.com9tag:blogger.com,1999:blog-6490256482332048092.post-33192040783054151262010-11-12T14:32:00.005-05:002010-11-12T14:55:11.297-05:00Hannah's out!Hannah is done and on her way to recovery! She did great! We're hoping to see her soon. A kind nurse took some pictures for us. Isn't instant technology fun!<br /><br />Hannah's in there somewhere!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TN2Z3FGoKGI/AAAAAAAAAiY/1F4hSppF8wY/s1600/P1050283%2Bsmaller.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TN2Z3FGoKGI/AAAAAAAAAiY/1F4hSppF8wY/s400/P1050283%2Bsmaller.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5538752288277407842" /></a><br /><br />Hannah said she was fine about having a film crew in the OR as long as she didn't have to say anything!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TN2aKFLDXLI/AAAAAAAAAig/FE4fWAUdHFk/s1600/P1050289%2Bsmaller.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 257px;" src="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TN2aKFLDXLI/AAAAAAAAAig/FE4fWAUdHFk/s400/P1050289%2Bsmaller.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5538752614713482418" /></a><br /><br />It's a beauty! What an incredible gift!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_-2qG0AK1ZfA/TN2anPzNrcI/AAAAAAAAAio/VpmHcmrZ-k0/s1600/P1050293%2Bsmaller.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 296px;" src="http://1.bp.blogspot.com/_-2qG0AK1ZfA/TN2anPzNrcI/AAAAAAAAAio/VpmHcmrZ-k0/s400/P1050293%2Bsmaller.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5538753115782491586" /></a><br /><br />Samuel's nurse just called from the OR to say everything is going well; vitals are stable. Thank you, Jesus! They are beginning to put the kidney in. They should be done in about an hour. We likely won't see Samuel until an hour after that.Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-6490256482332048092.post-75924627938886717742010-11-12T11:44:00.000-05:002010-11-12T12:44:57.730-05:00In the ORPlease be praying for my wonderful, loving, courageous children today. They are both now in the operating room. <br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TNzYDE2hzLI/AAAAAAAAAhw/ExRw7fqxH5k/s1600/Beautiful%2BHannah.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 313px;" src="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TNzYDE2hzLI/AAAAAAAAAhw/ExRw7fqxH5k/s400/Beautiful%2BHannah.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5538539189112523954" /></a><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TNzch6nZQbI/AAAAAAAAAiA/Gl5DmoDdw80/s1600/S%2Bat%2BAlamo%2Bsmaller.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TNzch6nZQbI/AAAAAAAAAiA/Gl5DmoDdw80/s400/S%2Bat%2BAlamo%2Bsmaller.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5538544116987150770" /></a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6490256482332048092.post-63828263080707121072010-11-12T08:00:00.000-05:002010-11-12T09:18:37.385-05:00Hanging out in Pre-op<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TN1K6zTpg9I/AAAAAAAAAiI/-0NA6yl2uvw/s1600/S%2B%2526%2BH%2Bin%2Bpre-op%2B1.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TN1K6zTpg9I/AAAAAAAAAiI/-0NA6yl2uvw/s400/S%2B%2526%2BH%2Bin%2Bpre-op%2B1.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5538665490801066962" /></a><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_-2qG0AK1ZfA/TN1Lu6KCAuI/AAAAAAAAAiQ/PVYG9bVexnI/s1600/S%2B%2526%2BH%2Bin%2Bpre-op%2B2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="http://1.bp.blogspot.com/_-2qG0AK1ZfA/TN1Lu6KCAuI/AAAAAAAAAiQ/PVYG9bVexnI/s400/S%2B%2526%2BH%2Bin%2Bpre-op%2B2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5538666385992975074" /></a>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6490256482332048092.post-19997258522953599412010-11-11T17:05:00.007-05:002010-11-13T18:17:40.029-05:00T minus 18The countdown is well underway! This is day one of the exchange and the team here is currently operating on pair number 5. Hannah and Samuel are scheduled for their surgeries tomorrow morning at 11:00. They will be pair number 8 and 9 out of 16.<br /><br />The San Antonio Express had a brief article about the kidney exchange. You can copy and paste this link (sorry, the link feature doesn't seem to be working):<br /><br />http://www.mysanantonio.com/health/giving_giving_giving_gifts_of_life_107143753.html?showFullArticle=y<br /><br />I was told that ABC News will run a story about the chain on their evening news tomorrow night.<br /><br />And if you missed Katie Couric's story on the National Kidney Registry last night, you can link to it here:<br /><br />http://www.cbsnews.com/video/watch/?id=7042488n&tag=related;photovideo<br /><br />This morning we spent some time at the Alamo. It is a lovely oasis in the center of the city that has grown up around it. On this Veterans Day, it was a sobering reminder of the connection between freedom and sacrifice.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TNyHbmU-6uI/AAAAAAAAAhE/8nmvv2vK5_o/s1600/Alamo.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 267px;" src="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TNyHbmU-6uI/AAAAAAAAAhE/8nmvv2vK5_o/s400/Alamo.jpg" alt="" id="BLOGGER_PHOTO_ID_5538450549973641954" border="0" /></a><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TNyHvwtCncI/AAAAAAAAAhM/mGl2i5wM7-E/s1600/Alamo%2B2.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 267px;" src="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TNyHvwtCncI/AAAAAAAAAhM/mGl2i5wM7-E/s400/Alamo%2B2.jpg" alt="" id="BLOGGER_PHOTO_ID_5538450896356285890" border="0" /></a><br /><br />Samuel is currently having his 510th dialysis treatment. Lord willing, it will be his last.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6490256482332048092.post-39892884299593820252010-11-10T11:03:00.011-05:002010-11-13T17:54:45.887-05:00Texas UpdateWe arrived in San Antonio late Friday night. It was a difficult trip for Samuel who had an "8" headache despite being loaded up with pain medication in dialysis. As instructed by the transplant team, Samuel wore a mask to minimize his chances of catching something on the plane. The mask, the wheelchair, his closed eyes and body posture drew some concern from airport and flight personnel. Everyone was very kind. On our flight from Detroit to San Antonio, Samuel was offered a seat in first class at no extra charge. It was great that he had a more comfortable place to rest, but I'm sorry to say he wasn't feeling well enough to eat the fancy meal that was served nor to appreciate the whole experience. Had there been a second first class seat available, we would have put Hannah there as well. She certainly deserves some royal treatment! <br /><br />You can be sure I took every opportunity to let people know that Samuel was on his way to get a transplant through a paired exchange and that Hannah was donating on his behalf. Too many people are unaware that this option exists. I am doing my part to change that! Too many other people are still in need of a kidney.<br /><br />Speaking of getting the word out...I believe that CBS Evening News with Katie Couric will be airing a story on paired exchanges tonight. Check your local listings. They will be highlighting the work of the National Kidney Registry. Samuel was listed with the NKR along with potential donors Linda Paroline and Hannah. While Samuel ultimately will not be participating in a paired exchange with the NKR, it is through the personal involvement of the NKR's founder and president, Garet Hil, that a match for Samuel was discovered at the Texas Transplant Institute. I have had suspicions of Mr. Hil's involvement, but yesterday it was confirmed by one of the transplant surgeons. We are eternally grateful to Garet Hil for his heroic efforts to find a kidney for Samuel. We are praising God for the provision of a kidney for Samuel through Mr. Hil's connections!<br /><br />Back to Texas...we spent a good chunk of time on Saturday finding and then changing hotels after spending one night with bugs and too much dirt (I'll spare you the details!). We were sorry to leave. The folks there were very nice; it just wasn't a good place for us to be. Samuel was bothered by the disruption, but was finally convinced that we had made the right decision when he discovered that, unlikely the first hotel, this one has the History Channel! :)<br /><br />Later on Saturday, we headed over to Sea World and spent the first of two lovely, 70+ degree afternoons strolling around the park. We enjoyed some shows and were mesmerized by the amazing sea animals. Hannah was coerced into riding not just one, but two roller coasters. It was her first roller coaster experience and while she seems to have survived it, I'm not sure I can say she enjoyed it! She's a good sport!<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_-2qG0AK1ZfA/TNrWseyI3RI/AAAAAAAAAgk/sf4kGtoDUv4/s1600/H%2B%2526%2BS%2Bat%2BSea%2BWorld%2B3.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 267px; height: 400px;" src="http://2.bp.blogspot.com/_-2qG0AK1ZfA/TNrWseyI3RI/AAAAAAAAAgk/sf4kGtoDUv4/s400/H%2B%2526%2BS%2Bat%2BSea%2BWorld%2B3.jpg" alt="" id="BLOGGER_PHOTO_ID_5537974751471394066" border="0" /></a><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TNrXD0Ys-gI/AAAAAAAAAgs/djQmzkZy0ik/s1600/H%2B%2526%2BS%2Bat%2BSea%2BWorld%2B4.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 390px;" src="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TNrXD0Ys-gI/AAAAAAAAAgs/djQmzkZy0ik/s400/H%2B%2526%2BS%2Bat%2BSea%2BWorld%2B4.jpg" alt="" id="BLOGGER_PHOTO_ID_5537975152407280130" border="0" /></a><br /><br />For dinner we had the full Texas Bar-B-Q experience at Rudy's. It was great!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TNrZtN8OZRI/AAAAAAAAAg0/OWju1y-7YCY/s1600/Rudy%2527s%2BBBQ.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 267px;" src="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TNrZtN8OZRI/AAAAAAAAAg0/OWju1y-7YCY/s400/Rudy%2527s%2BBBQ.jpg" alt="" id="BLOGGER_PHOTO_ID_5537978062665049362" border="0" /></a><br /><br />Sunday morning we finally unpacked and got settled into our new hotel. It is very lovely with a nice 2-bedroom set up. Oh, and it is even clean! In the afternoon, we went back to Sea World for a few more hours to see some things we had missed the day before. The weather was just incredible!<br /><br />Monday morning we reported to the Texas Transplant Institute for labs and a couple appointments. They decided to hold off on Samuel's dialysis in hopes that he might be able to have only one more dialysis treatment between now and the transplant. As of today, it doesn't look like it will work out that way.<br /><br />On Tuesday morning, we were back in clinic for more labs and a series of pre-op appointments for both Samuel and Hannah. We met more of the team and got some more details about the exchange. Samuel was not feeling well and the decision was made to dialyze him. Dr. Kapturczak, the nephrologist, had kindly arranged for Samuel to have dialysis as an inpatient in the hospital rather than in an outpatient clinic with their limitations and restrictions. Dialysis went amazingly well! Samuel only had a minor headache by the end. What a blessing! It was a long 9 1/2 hours at the hospital, but it was a good day.<br /><br />The exchange has been finalized with 16 pairs of donors and recipients. It is all being started by an altruistic donor. The last person in this chain to receive a kidney has a donor who will act as a "bridge donor" to start another chain later in December. That chain is looking like it will include 8-10 pairs. This concept of paired exchange has such potential to get people transplanted and off dialysis. It is very exciting! As I've mentioned before, this will be the largest paired exchange ever to take place under one roof. The whole hospital has been gearing up and preparing for "the big exchange." Thirty-two surgeries will be performed over three days beginning tomorrow. Participants will go into the OR in groups of four. There will be two surgeons removing kidneys (Dr. Shen and Dr. Vick) and two surgeons putting kidneys in (Dr. Wright and Dr. Bingaman). A fifth surgeon (Dr. Palma-Vargas) will be a floater, assisting wherever needed. Hannah and Samuel are scheduled to be the second group on the second day, which translates into Friday around 11 a.m. Texas time. <br /><br />Samuel will likely have dialysis again on Thursday (tomorrow). They will admit him into the hospital again to do it as an inpatient. After dialysis, he will be moved down to the transplant floor where he will stay overnight so they can be sure he is feeling well and ready for the transplant on Friday morning. <br /><br />Hannah will need to arrive at the hospital on Friday morning at 5 a.m. Her surgery is expected to take two hours and Samuel's will last about three hours. Samuel will go to the ICU for 24 hours following surgery, then to the transplant floor where he'll be for 5-7 days. Hannah will go briefly to recovery when she comes out of surgery and will then be transferred up to a general surgical floor where she'll stay for 2 or 3 days.<br /><br />Normally, exchange participants aren't given the opportunity to meet each other until six or more weeks after the transplants. Since this is such an historic exchange and is likely to get some national media coverage, it is possible that the hospital will allow us to meet each other before everyone gets discharged and dispersed to the four winds. We'll see! We will at least bring a note for Hannah's recipient and Samuel's donor and ask the team to pass it along to them. The excitement is mounting!<br /><br />Our local support team begins arriving today. Tom's mom, Mary Ellen Copeland, and her husband, Ed, are flying in this afternoon. They will be in town with us for the next week. They have been such a help to us with so many of the trip details. Two of Tom's cousins, Nancy Copeland Kelley and Katherine Copeland Blume (Esther's donor), will arrive on Friday and stay for the weekend. It will be great to have some extra hands and feet and people to hug!<br /><br />I also want to mention our support team back home. Katie and Grace are tending the home fires (literally) and caring for the animals at home. Wendy Ordway is caring for our larger animals who winter in her barn (thanks again, Wendy!). Sweet friends from church have been supplying the girls with some meals. Joanne Conchieri is covering my Latin class for me and keeping my students busy (miss you guys!). My sister, Laura Systo, is looking after Esther and Lydia for the next couple weeks. It will be a great opportunity for them to connect with other family members and build relationships with family that we don't see often enough.<br /><br />And then there are those of you, both near and far, who are thinking of us, wishing us well and, most importantly, praying for us! I can't tell you how grateful I am! It is a great comfort. May the Lord be glorified by your prayers and our lives.Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-6490256482332048092.post-59705256659519744452010-11-07T23:30:00.002-05:002010-11-09T22:47:38.461-05:00Friday's Send-OffI am a little behind on updating the blog. Our schedule has been so full there hasn’t been much computer time. I’ll try to get you caught up.<br /><br />The conference in North Carolina was excellent! I got home at midnight on Thursday with a notebook and flash drive full of information to review and process. I had 16 hours between getting off one plane and getting back on another. Those hours in between were busy! <br /><br />Samuel started dialysis at 6:45 a.m. on Friday and Esther had labs and a check-up (she's doing great!). Later in the morning, the dialysis team surprised us with a wonderful send-off including cake, cowboy hats, and lariats. Some of these folks came in on their day off to say good-bye to Samuel. <br /><br />Our hearts are full of gratitude and appreciation for all that this terrific team of nurses and support staff has done for us. They are skilled professionals, compassionate caregivers, and generous friends! They have cared for Samuel and they have cared about Samuel. They have encouraged and cheered him through some dark times. They have been his nurses and his friends. They have our highest respect and our deepest gratitude. <br /><br />Thank you to Ann Marie, Bette, Bill, Fran, Helen, Jackie, Kim, Marley, Michael, Nancy, Pat, Renate, and Susie. Special thanks to Betty and Jane – there at the beginning, the end, and the worst of it in between! And every great team needs a great leader. That would be Dr. Guillot! We love you all!<br /><br />Here are a few of the folks at our rootin’, tootin' Texas send-off...<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TNYwNnl5Q2I/AAAAAAAAAbU/hund2wEIGIg/s1600/Send+off+party.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 267px;" src="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TNYwNnl5Q2I/AAAAAAAAAbU/hund2wEIGIg/s400/Send+off+party.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5536665802422960994" /></a><br /><br />Ann Marie sewed a pair of comfy fleece pants for both Samuel and Hannah. Nicholas came to help celebrate.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_-2qG0AK1ZfA/TNeLcTKvRyI/AAAAAAAAAbc/0JWPvcY55kw/s1600/Nicholas+and+Samuel.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 302px;" src="http://2.bp.blogspot.com/_-2qG0AK1ZfA/TNeLcTKvRyI/AAAAAAAAAbc/0JWPvcY55kw/s400/Nicholas+and+Samuel.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5537047585173227298" /></a><br /><br />Nancy H. gave Samuel a heart-shaped rock that had been special to her. He has been carrying it around in his pocket ever since. Samuel and Nancy would share a special greeting each time they saw each other. Nancy always made us smile.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TNeLzxlndMI/AAAAAAAAAbk/al3Cp6IIhmo/s1600/Heart-shaped+stone.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 287px;" src="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TNeLzxlndMI/AAAAAAAAAbk/al3Cp6IIhmo/s400/Heart-shaped+stone.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5537047988476015810" /></a><br /><br />Samuel always enjoyed working with Bill, one of the boys.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TNePCdetCVI/AAAAAAAAAb0/hmd8dVAeIz0/s1600/Bill+and+Samuel.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 381px;" src="http://4.bp.blogspot.com/_-2qG0AK1ZfA/TNePCdetCVI/AAAAAAAAAb0/hmd8dVAeIz0/s400/Bill+and+Samuel.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5537051539311233362" /></a><br /><br />Samuel says good-bye to his dialysis buddy, Josh. <br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TNeMTpw7HMI/AAAAAAAAAbs/DgbnsEtYZhk/s1600/Josh+and+Samuel.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 294px;" src="http://3.bp.blogspot.com/_-2qG0AK1ZfA/TNeMTpw7HMI/AAAAAAAAAbs/DgbnsEtYZhk/s400/Josh+and+Samuel.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5537048536131771586" /></a><br />This is one of the sad things about getting a transplant - Samuel will miss spending time with Josh. How we have enjoyed him and his mom, Kelly! This month marks Josh's one year anniversary of beginning dialysis. That is long enough! I am committed to promoting education and awareness about organ donation, both living and deceased, so that other young people like Josh and Molly and Chelsea can also get a transplant. <br /><br />Anyone have an extra kidney to spare?Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6490256482332048092.post-67807216789483678512010-10-31T23:35:00.003-04:002010-10-31T23:58:04.746-04:00Countdown to Transplant!Sorry to leave you all hanging!! We arrived home from San Antonio on Tuesday night and it has been a whirlwind ever since. I am feeling like a cross between a travel agent and an event planner. There have been so many details to arrange since we got home. <br /><br />Everything went well in Texas. The team there seems great. They are excited to be able to include Samuel in the chain and are happy with Hannah as a donor. Plans are moving forward. We are scheduled to fly back to Texas on Friday afternoon, November 5th. That is less than 5 days from now!! We'll have the weekend to do some sightseeing and then we'll be busy with dialysis and appointments until the big surgery day on Friday, November 12th. <br /><br />The chain is still a work in progress and is likely to consist of 12 to 17 pairs. This particular chain is being started by an altruistic donor (can't wait to meet that person!!) and therefore can be linear rather than a closed circuit. The team is still working on the tail end of the chain, hoping to include as many people as possible. It will be the largest paired exchange ever to take place at a single institution. As of last week, Samuel will be the youngest "link" in the chain. We are so grateful that this appears to be the Lord's provision for Samuel to get a kidney. It is an honor to have been invited to participate in this historic event.<br /><br />And if that weren't exciting enough and if I didn't already have enough to keep me busy......I flew to North Carolina today to attend an intensive training seminar entitled "Hospitals and Communities Moving Forward with Patient- and Family-Centered Care." I am here as part of my work with the newly-formed Patient and Family Advocacy Council for Baird 5 (the pediatric unit of Fletcher Allen). The seminar program is incredible - it reminds me of the analogy of trying to drink water from a fire hose. It is a privilege to be here!<br /><br />I will return home late on Thursday night, Samuel has dialysis from 7:00 a.m. - 1:00 p.m. on Friday, and our flight to Texas leaves at 4:10 p.m.! I volunteered to attend the conference back in September, long before any hint of a transplant in Texas. Tom summed it up well when he said, "At the time, it seemed like a good idea." We're just taking it all as it comes!<br /><br />Well, I need to get to bed so I can be well-rested for 4 full days of workshops. Please continue to pray for the details of the paired exchange. It is still very fragile. Everyone involved needs to stay healthy enough to safely undergo an operation. The surgeries are scheduled to take place over 3 days - November 11th through the 13th. <br /><br />On this date exactly 3 years ago, Samuel had his tragic first transplant. That's behind us now and we're looking forward to a successful second attempt!<br /><br />Let the countdown begin!Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-6490256482332048092.post-88010793991646208982010-10-22T23:50:00.005-04:002010-10-23T08:38:39.303-04:00We're off to Texas!<blockquote><span style="font-style:italic;"><br />This I recall to my mind, <br />therefore I have hope. <br />The Lord's lovingkindnesses never cease,<br />For His compassions never fail.<br />They are new every morning;<br />Great is Your faithfulness.</span><br /><br />Lamentations 3:21-23</blockquote><br />Both Tom and my dear friend, Anje, recently reminded me of this scripture. The Lord indeed continues to show His faithfulness to our family!<br /><br />We have been unable to find a compatible living donor for Samuel despite the many wonderful, generous people who have stepped forward to offer over the last 3 years. (May God bless each and every one of you!) Additionally, Samuel’s name has never even once come up on the deceased donor list. He just has too many antibodies against very common antigens. That has made him incompatible with 99% of the population. <br /><br />Back in March of this year, in hopes of finding a compatible donor, Samuel was listed with the National Kidney Registry. This fairly new organization connects pairs of donors and recipients in a type of chain called a paired exchange. The wonderful woman who was willing to donate on Samuel’s behalf was Linda Paroline. Samuel and Linda were the first donor/recipient pair from Fletcher Allen to be registered with the NKR. <br /> <br />The transplant team continued to encourage us to find additional donors to list with Samuel as each donor, with their unique genetic profile, could lead to a different possible chain. <br /><br />In June, Samuel’s 21-year old sister, Hannah, passed all her screening and was listed as a second possible donor for Samuel with the NKR. I also want to make special mention of Grace, Samuel’s 19-year old sister, who was one of the first to offer to donate a kidney on Samuel’s behalf. Unfortunately, Grace was disqualified as a donor. Thank you, Grace! We love you! <br /><br />On Friday last week, after 3 long years of waiting, we got a phone call from our transplant coordinator saying there might be a paired exchange that could include Samuel and Hannah as his designated donor. We were told that the target date for the transplant was around the second week of November and that this chain could include as many as 16 pairs of donors and recipients. That would be 32 surgeries to orchestrate! It was still very early in the planning and there were many details to work out.<br /><br />On Monday, Samuel and Hannah both had blood drawn and sent away for cross matching with their respective donor and recipient. We were told that Hannah was being asked to travel to Texas to donate to her recipient in San Antonio. Hannah was willing, and we made the difficult decision that I would travel with Hannah and Tom would stay here with Samuel for his transplant. We were asked not to share any details as plans were still too tentative.<br /><br />On Wednesday, we got word that the cross-matches for both Samuel and Hannah were negative. In this case, negative is a very good thing! We were also told that the timing and logistics of the surgeries would make it impossible for a kidney to be shipped to Samuel in Vermont. If we wanted to participate in the paired exchange, both Hannah and Samuel would have to travel to Texas. This was a bit of a shock! But we are always up for a new challenge, especially if it means that Samuel can get a transplant, so we began to wrap our heads around the idea.<br /><br />Today we were told that the transplant team in Texas needs to see Samuel and Hannah on Monday (or Tuesday at the latest) for further screening and evaluation. That is 3 days from now! Okay, deep breath, we can do this! Lots of scrambling, lots of phone calls, and we are scheduled to fly out tomorrow at 5:30 p.m. We’ll have Sunday to relax and then we’ll report bright and early at 7:00 a.m. to the clinic at the Texas Transplant Institute in San Antonio. They claim to be “the nation’s largest and most experienced living donor kidney transplant program.” Sounds like a good place to be! They will arrange for Samuel to dialyze on Monday after a series of appointments for him and Hannah. We will fly back home on Tuesday afternoon. <br /><br />If everything goes well for Samuel and Hannah (and all the other pairs), we'll be flying back down to San Antonio sometime before the transplants which are scheduled to take place over a 3-day period starting on November 11th.<br /><br />So yeehaw, we’re off to Texas!! Just another example of the Lord's lovingkindnesses! Just another episode of the Smith Family Kidney Adventure!Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-6490256482332048092.post-70871316841017455892010-10-21T13:39:00.003-04:002010-10-21T15:59:16.754-04:00Struggles and SurrenderSamuel and I spent another night in the emergency room, so if I sound a bit more discouraged than usual it is likely due to missing two nights of sleep this week. Another contributing factor would be my concern for Samuel. He is really in a hole. I am struggling not to be controlled by my emotions and lack of sleep.<br /> <br />The purpose of last night's visit to the ER was to get control of Samuel's migraine (which had escalated to a whopping "10" on the pain scale) and to lower his blood pressure. Pain is a horrible thing. While he has had some degree or another of a migraine for almost 3 weeks, yesterday's escalation was likely triggered by having had an extra amount of fluid removed during dialysis.<br /><br />Samuel has been arriving in dialysis at about the same weight each time. Because he has been eating so poorly for some weeks now, we started to suspect that less of his weight was flesh and more of it was fluid. So while the number on the scale was relatively consistent, we suspected that his dry weight was actually much less than it had been. That could be contributing to his blood pressure being high.<br /> <br />They are always hesitant to challenge him with too much fluid removal because of his body's sensitivity to fluid shifts, but since he was already in a bad way during dialysis yesterday, we decided to see if there was extra fluid that could be removed. It is only a matter of adjusting the fluid removal goal on the dialysis machine. They could have pulled off more, but they stopped at 2.3 liters, which would seem to confirm that he has been carrying extra fluid and that his dry weight has dropped significantly.<br /><br />It is likely that this fluid challenge is what landed him in the ER. If we end up with a more accurate idea of his actual dry weight and if it ultimately means his blood pressure will be better managed, then it will have been worth it. I can say that objectively, but I am not the one who was in physical agony for hours last night. Mine was the silent pain of a mother's heart breaking as she helplessly watches her child suffer.<br /><br />Today is a repeat of Tuesday's day-after-a-night-in-the-ER. His headache is "only" a 7.5 and the emesis basin is his constant companion. He has been unable to eat and looks like a walking skeleton. Mostly he is trying to sleep.<br /><br />Plans for the paired exchange continue to move forward. Things are getting complicated. We don't know much and what little we do know, we have been asked not to share. Everything is still too tentative to announce. It would appear that we will be asked to step way outside our comfort zone. We are grateful for this time to process and prepare.<br /><br />All of this will be for naught if Samuel is not well enough to undergo and recover from a big surgery. Everyone recognizes that a new kidney is what he really needs to be well, but of course, they won't allow him to go through with the transplant if he isn't well enough to handle it.<br /><br />Lord, I place Samuel, his health, his life in your hands. I trust you to provide what he needs in your perfect timing. Give me your grace and peace that passes understanding to accept whatever is ahead - both the good and the bad. Thank you, Jesus.Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-6490256482332048092.post-23435077983083779422010-10-19T23:22:00.003-04:002010-10-20T00:26:42.452-04:00Struggles and HopeWell, yesterday's long day turned into a long night. Samuel went from dialysis to the emergency room after multiple unsuccessful attempts to lower his blood pressure. Eventually, his pressures were low enough that we could stop worrying that he would blow a gasket. It was 2:30 a.m. before he could safely leave the ER. <br /><br />Samuel slept most of today and tried to recover from feeling like a Mack truck had run over him. It was my job to monitor his blood pressure to be sure he was safe.<br /><br />Late this evening we got the very welcome news that Hannah had a negative cross-match with her potential recipient and Samuel had a negative cross-match with his potential donor. Hallelujah! <br /><br />Now we must sit tight and wait for further instructions. All other pairs (and there may be quite a few!) must also have negative cross-matches. There are still a myriad of details to be worked out and many critical components to be completed. One of the very necessary pieces yet to happen is that our surgeon here must receive an official offer of a kidney for Samuel from the NKR. This is the first time that the folks at Fletcher Allen have worked with the National Kidney Registry, so we are all learning as we go.<br /><br />We are holding it all with an open hand and praying, may your will be done, Lord Jesus.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6490256482332048092.post-5805637587251894672010-10-18T19:10:00.002-04:002010-10-18T19:25:14.236-04:00Happy 500th!Today was Samuel's 500th dialysis treatment! Can you believe it?? We had a little party in dialysis to commemorate the occasion. Thanks to Lydia for baking a boatload of cookies last night! Samuel's friend and co-dialysisee, Josh, was in the next station right alongside Samuel as usual. Josh makes any occasion more fun! Kevin, who was at Samuel's very first dialysis session, came with another old dialysis friend, Ryan. It was great to see the boys together! Did I take any pictures?? Of course not!! I'm rather annoyed with myself!<br /><br />Samuel got clobbered with yet another migraine. Recently he has been getting a migraine during almost every dialysis treatment. It has been a difficult couple weeks for him. He was able to enjoy some of the festivities today with a little help from dilaudid. <br /><br />It is now the end of the day and most everyone has gone home. We have been here since 11:30 this morning. We are still here in dialysis because Samuel is having a hypertensive crisis and they are trying to get his blood pressure under control with some IV meds. <br /><br />It has been a long day of mixed emotions...sadness that Samuel has been doing this so long, thankfulness that he is doing this with such a great team of caregivers, and excitement that he might not be doing this for much longer.<br /><br />Blood samples from Samuel and Hannah were shipped out today for cross matching. We are hoping to have some more information by Wednesday.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6490256482332048092.post-71008154865350194202010-10-15T23:27:00.004-04:002010-10-16T11:47:33.723-04:00Cross-Match DelayedThey ended up not drawing blood from either Samuel or Hannah this afternoon. There were concerns about the samples being safely delivered on a weekend and, having been on dialysis, Samuel's blood was heparinized, which is not what the lab wanted. So...everything has been put off until Monday morning. That means we probably won't know anything more until the middle of next week. Rats!<br /><br />Well, I guess we've waited this long and can wait a little while longer. I'll have to keep myself busy this weekend (that shouldn't be too hard!) so I don't think about it too much. It is still a huge uncertainty, but it is hard not to get excited.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-6490256482332048092.post-1982391485697464912010-10-15T13:31:00.003-04:002010-10-15T14:26:37.244-04:00Possible Kidney for Samuel...Please pray!Dear friends,<br /><br />I just got a phone call from our transplant team. It seems there may be a paired exchange chain through the National Kidney Registry that could include Samuel and Hannah. This is exciting, awesome, incredible news! It is the very first and only time that Samuel's name has come up with a possible match. Due to having a very high number of antibodies, Samuel has been incompatible with 95% of the population for a long time. Last week we learned that since September, he has been incompatible with 99% of the population. So the fact that there might be a donor for him is something close to a miracle!<br /><br />Nothing is for sure at this point. Hannah is on her way up to the hospital right now to have labs drawn for a cross-match with her potential recipient. Samuel is in dialysis at the moment and will have labs drawn to be sent off for cross matching with his potential donor. A chain is a fragile thing. If one link (donor or recipient) fails, the whole chain may fall apart. At this point we can only pray, ship blood samples, and wait to hear the news.<br /><br />Please do join us in praying that both Samuel and Hannah would have negative cross-matches with their respective donor and recipient. We should hear about the results of the cross-match some time this weekend. I'll let you know. Pray that we would praise God, no matter the outcome.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6490256482332048092.post-31440465430430118802010-03-23T22:51:00.003-04:002010-03-23T23:52:18.441-04:00Happy 3rd Anniversary! Happy 23rd Birthday!Today marks the third anniversary of Samuel's first dialysis treatment. Our kidney adventure officially began on March 21, 2007 when we heard the words "kidney disease" for the first time. Two days later, on March 23rd, Samuel was on dialysis! It happened to be Katie's 20th birthday and we gathered in Samuel's hospital room that evening to celebrate. Since then, we have celebrated quite a few birthdays in the hospital, but today I am thankful that we were all together at home to celebrate Katie's 23rd birthday!<br /><br />In that first week of dialysis, I put together a notebook in which to collect information and record details of each dialysis run. A few weeks after Samuel started dialysis, both Katie and Esther were diagnosed with the same kidney disease. I labeled my notebook "Smith Family Kidney Adventure." Little did I know how appropriate that would be! These last three years have turned out to be quite an adventure for our family! That notebook has been filled and refilled many times. Between us, we have had ten surgeries and countless medical procedures. Samuel alone has had 410 dialysis treatments and five surgeries. I couldn't begin to count the number of hours we have spent in the hospital. <br /><br />Through it all, God has been gracious to preserve the lives of our children and faithful to supply our needs. It has been a difficult time, but we know that He is using it for good, both in our lives and the lives of others. We have learned so much and have been blessed to meet and work with some wonderful people.<br /><br />I haven't posted in a while, but that doesn't mean things have been quiet. There is much to report, but I will have to save it for another evening. Stay tuned...Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6490256482332048092.post-33675960655390272162010-01-29T21:40:00.000-05:002010-01-30T00:22:36.103-05:00It's Great to be Home!Well, that was quite a start to the new year! Esther was in the hospital for 29 of the last 37 days. We pretty much missed January altogether. But we are home now and so happy to be here! It is as if Esther has come alive again. She is up and walking around, talking constantly, animated, happy, and in charge, as usual! <br /><br />I, on the other hand, have collapsed into a pile in the recliner. I'd be up in bed, but it is much warmer downstairs. I had a long nap this afternoon, another one this evening, and I'm more than ready to head to bed for the night. Another day or two of lying low and I'll be back in the game.<br /><br />It is SO good to be home!Unknownnoreply@blogger.com6tag:blogger.com,1999:blog-6490256482332048092.post-72852879860445858212010-01-28T22:54:00.009-05:002010-01-29T06:06:23.286-05:00We're Heading Home Tomorrow!Esther has had two days of stable labs and two days of drinking 3+ liters! Today she even had a slight increase in her red blood cell count! Except for the times when she was receiving medications, Esther has been detached from her IV pole all day. Tomorrow morning's labs will give us the first indication of how she is doing without the 3.6 liters that she has been receiving each day for her maintenance IV fluids. Assuming her labs look good, she'll be allowed to go home on Friday, which is a couple days sooner than projected!! <br /><br />The antibiotic switch that the doctors talked about doing never happened. They thought that things were working well and decided not to mess with it. Esther has received a dose of IV antibiotic every 8 hours for the last 11 days. She'll likely have another dose in the morning before being discharged. The doctors believe that will be enough so she won't have to continue the IV antibiotic at home. She will have to stay on the oral antibiotic for the C. diff.<br /><br />Even though she won't be continuing the IV antibiotic, Esther will be going home with the PICC line still in place. It will make the outpatient lab draws much easier for the next week or so. The PICC line will also be used next week to give Esther some extra Epogen. We'll be glad to have it if she should get into trouble and need some extra hydration.<br /><br />Esther and I are both very excited to be going home. I am looking forward to being together again as a family. Because of H1N1 and RSV concerns, the pediatric floor is "closed" and visitors have been severely restricted. I also can't wait to sleep in my own bed. Most of all, I am hugely relieved that Esther is well enough to leave the hospital! She still has some recovering to do, but time, rest, and antibiotics should do the trick.<br /><br />Thanks to all of you who have left encouraging comments on the blog or sent cards or emails! Thanks to those of you who have prayed us through another crisis! We are tremendously grateful for your love and support. Special thanks to Grandma Peach who sent Esther some comfy shirts and pants which she has been living in during her hospital stay. Thanks also to Joanne and Janina for teaching my Latin classes for me these last two weeks! Blessings to you all!<br /><br />We're going home!Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-6490256482332048092.post-26763528640737649762010-01-26T23:30:00.006-05:002010-01-28T23:10:29.799-05:00Tuesday's ReportOn Monday, Esther had an ultrasound to check the status of her large intestine. The infection of the bowel wall is clearly resolving. There is only a trace of inflammation left. That was great news! <br /><br />I was very surprised to be told yesterday that Esther will probably need to be in the hospital for another week. At least it is encouraging to be talking about going home. The doctors have put together a list of some things that need to be accomplished before she can be discharged. The three main things are: <br /><br />1) Esther's electrolytes must be balanced and be able to stay balanced without help. She has required IV supplementation of calcium, magnesium, and phosphorus multiple times.<br /><br />2) Esther's red blood cell count must be stable or on the rise. It has been on a steady downward trend due to the intestinal bleeding. Unfortunately, she has lost almost everything that she gained through the transfusions last week. Yesterday she was down to the point where (for most people) a tranfusion would be considered. They have really been pushing her bone marrow (where red blood cells are made) with daily doses of Epogen. Finally today her RBC count went up a bit! We're praying that this will be the beginning of an upward trend.<br /><br />3) Esther must be able to consistently drink 3 liters each day. This is the only part of the discharge plan that she has any control over and she's done a great job. Both yesterday and today she got 2.5 liters down. <br /><br />In addition to the IV antibiotic to combat the intestinal infection, she is also being treated with a second oral antibiotic for the C. diff. In the next day or so, they will be switching Esther from the IV antibiotic to an additional oral antibiotic so that we won't have to mess with the IV meds when we are at home.<br /><br />As expected, Esther tires quickly. Her threshold for anything unpleasant or difficult is extremely low. The smallest things frustrate her and can escalate into tears. Yesterday, after a long and exhausting trip downstairs for the ultrasound, Esther had to battle with the IV pole to get into the bathroom where she then had to take some nasty medicine that burns her canker sores and tastes like rotten bananas. Shortly thereafter, the nurse came in to do a finger prick to check her glucose. It was the last straw for Esther. She had a meltdown right then and there. She absolutely refused to let the nurse poke her. After reaching an impasse, our compassionate nurse found a way around and no poke was required.<br /><br />Esther's heart rate is still consistently too high. To attempt to address this, she got two one-liter boluses in addition to her maintenance IV fluids on Saturday. Today she got one extra liter.<br /><br />Overall, Esther is greatly improved. She is feeling better and eating well. She spends more time in the recliner than in the bed during the day. She is walking longer distances. We are hoping that with today's increase of red blood cells, it might not take a whole week before she is well enough to go home. As eager as we are to get out of here though, no one wants to leave too early and have to come right back again, so the docs will be sure that she is really ready before they send her home.<br /><br />By the way, Esther's kidney is holding up very well under the present circumstances. It is happy with the constant supply of IV fluids that Esther receives. Dr. Guillot always says, "A hydrated kidney is a happy kidney!" Between the maintenance IV fluids, the one-liter bolus, and what Esther drank, the kidney will be very happy processing 7.2 liters from today. The real test comes when her kidney has to work harder because she is eating more and drinking "only" 3 liters a day.Unknownnoreply@blogger.com0