Transplant!!!

Not sure how you are supposed to sleep before a day like this. As Dan snores away next to me, annoyed I won’t lay down, I type. The therapy I need to maybe put sleep to my brain that won’t turn off. Today has been quite the whirl wind of pre op x-rays, and then dialysis, then getting admitted to the hospital. We were upgraded to the dreaded orange caregiver/inpatient necklaces which both I and Dan despise. So since we were running around like crazy, with doctors and nurses coming in and out, signing so many papers I felt like I was signing her away, I didn’t have much time to have it sink in or worry. This last weekend though was hard. Breaking down multiple times and just stunk in a slump. It may have been that I had so much to do, no time to do it, and the last time at home before it all began. So on Sunday morning at church when they prayed for us I broke down, but at the same time had peace, always how it goes, the teeter totter.

Fear wouldn’t be what I am feeling right now, or excitement for that matter, but more anxiety. See the thing is, is Faith will be here at Children’s Hospital and I will be at UW hospital. Although they are only about 2 miles apart, they may as well be across the state. So to break down my anxiety for myself…first it is having to say goodbye to her in the morning, second is the NEEDLES which is a BIG second, third is the complexity of what they are going to have to deal with, with my vascular system in and around my kidney which is “quite in depth and work” as the surgeon told me, so with that the added time he will have to operating on me, Third is waking up from anesthesia. See my mom had surgery a few years ago for cancer and when she woke up she was so sick and throwing up, which is even more painful when you have a new cut in your abdomen. Fourth is the pain so many people have gladly shared with me is my intestines waking up, fun. Fifth and most of all is being away from Faith during all of this, and not being part of it, or there. I will be in the hospital till probably Saturday so the thought of being so far from her, not comforting her or knowing what is happening at every second is hard for me.

Of course I will have to start my morning in tears saying goodbye till then but then I get to listen to the nice “what mays” the nurses and doctors have to tell you. It is all just so surreal still though that she is going to get a transplant tomorrow, from me, and she is going to pee!! Sounds kind of silly but having a baby that hasn’t ever peed but a few times right after birth is going to be amazing. On top of that though which brings me to tears each time is she won’t be stuck to a machine every day. She will start to grow faster, eat better, and be a real kid which was never supposed to happen.

So I leave with this. A smile. My daughter is amazing and strong and I in less than 10 hours will be started into a surgery to give her life again. She is such a blessing to me and so many around us. With her sweet smile, crinkle noses, “so cute” poses, dancing to every symbolance of music or a beat, her adorable voice, which we never thought we would hear, her tongue need I say more, and just her strength and joy through all she has been through. If I end up half as strong as her I would have accomplished so much. So here is to peace as I wheel away, patience while I have to stay away and joy to thought of how my sweet “booger” will flourish and change from what I am about to do. Thank God for little girls.

What 24hours can change

What 24 hours can change? I am still in shock of how everything changed. I will rewind a few days just to give perspective. This last weekend we were able to spend whole time at Banks Lake in Eastern Washington for Dans’ sister’s wedding, which was beautiful. We left on Monday morning to head back to the hospital to start our week again. See coming from home to here is bad enough, but coming back here from a short vacation is even harder. That evening after dinner Dan had to go home with Tristan for football camp, and to check on the house and animals. I have been trying my hardest not to keep track of the time we have been trying to juggle all of this, but this week it is beginning to be too much, and for the kids too. Knowing the kids are getting sick of it, and not having fun with it anymore makes it that much harder to stay positive through all of this.

So when Dan left that night I broke down. Being in situations like this I am sure it is normal to have times that you break down, and if you don’t I think you may go internally insane. Lucky enough though that the kids aren’t in school yet so they can be here with us and not trying to juggle that to. So I started my Tuesday morning pretty low already, and it also was the day I knew they were going to conference on all my testing for donating to Faith. Page, the Donor advocate,  every time I have called or got a call from her the last few weeks she always has had a disappointed tone to her voice and not good news each time, so I was quite a bit nervous waiting that day for the call on what the outcome was.

Well about 4:50 I still hadn’t heard anything so I called her, and again her voice switched to that tone when she knew who it was. I asked if they went over my file and if I was approved. She responded saying, ”Kami didn’t call you?”,  in a very confused disappointed way, and I of course I said no. Well she then proceeded to tell me that they did go over my file but I wasn’t approved, but not disapproved??? Ok what the heck does that mean? All she could tell me is I wasn’t approved, and they needed to do further testing, nothing else. I got off the phone with my heart in my stomach with no answer besides I wasn’t approved. By the time I got off with her it was 5 and couldn’t get through to any other numbers. So I had to sit with that all night not knowing why, what happened, what was said, nothing till the morning. So on top of already being low, hearing that, and being alone was enough to make for a long night.

The next morning I started calling right at 8, and of course no answers on any phones. She had her monthly nephrology appointment, and was hoping for some info to give them so maybe she could help me figure it out what to do if anything, but of course no calls back. Once dialysis was done my parents showed up and I had to do an interview for a newsletter on dialysis, and then they called. It wasn’t Kami who is the person who was supposed to call but the lady who sets up all appointments, she told me I needed to do a double kidney function test and that Kami would be calling. As we left Ruth, Faiths Nephrology doctor called and asked if I had got a call. She then hit me with the news, I was approved! They just needed to do this test to make sure I am left with the kidney that functions the best. When I hung up the phone the room began to spin and I felt like I was going to throw up. Less than an hour ago I thought I wasn’t going to be able to save my baby girl and now I’m approved and able to? A lot to take in, and in public for that matter. As I walked back to the apartment to get my things I finally got a call from Kami. She asked if I got her message, which I didn’t, and began to tell me why they needed to do the test and that both Children’s surgeons and their team had seen the files and approved it. So she said she was going to start looking at the schedule, which I assumed she meant for the appointment, but no…for our surgeries!!

So to put this in cliff notes, in less than 24 hours I went from panic not knowing how long I could handle being here and not knowing who would be able to be a match for her, or what was wrong with what they saw, or what I could do to change their minds. To waiting to hear the dates they found for the surgery for us. Amazing how God works, frustrating sometimes, but amazing all the same. So here is to finding a date soon!!

Just never ends...or will it?

UGH UGH UGH!! Well I should know better than to know I would get a break right now. The most frustrating part is that every time I am by myself things end falling apart. Yesterday I got the most monumental news, and by myself I was.  The craziest thing is that all last week once I heard that our cross match had a positive reaction, and needed more testing to see if it was to me or to her own cells, which happens, I’ve been stressed. So I waited and could have called this weekend, but was also scared to hear the answer. All weekend I kept having this dream over and over that Ruth walked in the room and all she said was sorry and I woke up with my stomach in a knot. Well yesterday morning I got to the hospital to start our week back in Seattle, and she called. Once she heard that I was in the hospital she just told me she would be down in a minute to talk to me. When she walked in the room she was wearing the SAME outfit that was in my dreams which was just way too weird, but then the words came out that it was a go, I was a match. To be honest I didn’t expect it and either did the nurses, which shared in the tears with me since I was alone to hear it. From there I of course asked what the next step was. They were going to talk about her that day and would be at least 5 weeks till surgery to let the vaccines she got the week prior build up antibodies. So I again waited all day to hear what was said and of course no call.

So that brings me to today.  Still alone I went over to the hospital in a mission to get some answers. I asked the nurses if they had heard anything and of course they didn’t, and so I called the transplant coordinator. That is where the day started to get not so fun. See Faith had been super cranky the last few days and for once she was in somewhat of a better mood luckily. When the nurse got on the phone I asked if she knew anything about how yesterday went or what the plan was. She said they went over stuff last Monday and she was eligible for transplant, but were waiting on her vaccines to be up to date and my results from UW to come back, which they hadn’t? Ruth had told me yesterday that we had to wait 6 weeks after the MMR/Chicken pox vaccine for surgery. Well the nurse then informed me she would have to wait 28 days  from the first shot, to get another one!! SO that would be another at least 4-5 weeks past July 10^th that we would even be able to have the surgery. After I got off the phone I felt so defeated and then Dan called to tell me he took Tristan into the Dr. since he was running a temp again, and he had pneumonia. Really!? Of all the times for me not to be there.  After that news I guess I needed more so I called over to UW to see what was going on, and what needed to happen for them to give Faiths doctors what they needed to get this done. She said they were meeting on my stuff, but they were not going to give the ok till I had a meeting with the diabetes doctors since I had diabetes when I was pregnant with Faith, and may not be willing to let me give her my kidney, again news to me. So again another punch in the gut. I proceeded to call the clinic and the earliest they could get me in was July 9^th, and until that meeting was done NOTHING could proceed.

 Faiths transplant nurse called me back with a list of a few more shots that she may need before transplant but non that were active so didn’t need to wait to clear. I then asked about scheduling the surgery for 4-5 weeks past the vaccine, but until they had UW clearance they couldn’t and on top of that it may take 2 months to get coordinating surgery rooms.

So all in all more then I could take for one day. It would be easier or more settling knowing she was ok in the mean time, but she isn’t. The hemo dialysis is just not working well for her. Her BP is through the roof, she is losing weight since she won’t eat as much since there are so many restrictions on what she can have, her blood levels are not stable, and to top it off it is being away from our home and trying to financially handle it all for who knows how long now. It is all a lot to say, explain or handle but then at lunch time I sat and got an unexpected visitor.

Savannas friend from schools mom tapped me on the shoulder when we were eating this afternoon, When I turned around I was shocked to actually recognize someone besides doctors, nurses or surgeons, but then I noticed the badge hanging around her neck and knew Her daughter was here. She began to explain how she had been having headaches and the doctors just said it was nothing. Well she pushed for an MRI and found out she had a brain tumor. They did and emergency surgery in Tacoma to remove most of it but were not comfortable so she was sent up here to have them remove the rest, which they did. I wept while she talked. This day from start till now has been constant blows and knowing I have NO control on what happens, and just pray what does happen, happens quicker than they are telling me. Not for me but for my kids and Faith. I have been asked if I’m scared of the whole surgery thing, but at this point my child’s health is all that I am consumed with luckily, and ask for prayer that this is what makes this whole process happen quicker than they have seen. Again just like they said the testing would happen in months, and it happened in a week for both of us. PLEASE!!

My work up day

Well I am sitting here finally able to see straight without the room spinning or the overwhelming urge to throw up. Today was day two of testing for the work up on Faiths donor tests. Yesterday was somewhat easy but not the case today. It started out with of course fasting and seems to be when you can’t eat is when you are the hungriest.  First on the agenda of the numerous appointments for the day was the blood draws and Glucose test. Ok again needles scare me bad but when I sat there watching vial after vial be laid out to draw to I secretly started to panic more. The thing is I didn’t want them to think I was not fit to do this or donate since of course surgery is a lot bigger deal. So internally I shook. Then the poke which all in all wasn’t as bad as sitting there while they filled 15 vials of blood and could feel my body getting weaker. When he was finally done I was told to drink the most DISGUSTING juice in less than 5 minutes. SO empty stomach, already shaky from the blood draw and now hitting my stomach was the nasty glucose. It was a strength I didn’t know I had keeping from passing out and puking at the same time. Didn’t keep me though from shaking and sweating. Quite an embarrassing thing in the middle of a packed lab room. All for Faith, All for Faith is all I could keep saying that kept me together. SO onto now another draw, and then, EKG, Chest x-ray, meeting with clinic, nurse, surgeon, CAT scan, and hopefully that will be what they need to tell me I’m a match.

The news I didnt expect

What would be the words for my feeling right now? Or should I say feelings. Scared, anxious, nervous, hopeful... Yeah almost every one. Let me rewind a few days. Once we got checked in last Friday night to Seattle they started her on fungal meds and IV meds and it continued that way till Sunday when they pulled her PD catheter. It never gets easy seeing your child wheeled away to surgery. We were told it shouldn’t be a very in depth surgery and should just pull out, so no intubation. Now there was of course the chance that it may need more than that and more would need to be done, but we lucked out and they cut the stitches and it just pulled right out. We were able to come see her shortly after, minutes feel like hours when you don’t know how things are going.

Later that day they got the results of what kind of fungus it was and it was one that was very well treated with a med that didn’t have quite the amount of side effects as the med she was on. The next night was my night to stay and let Dan sleep.  That next morning at 8 am they started to wheel her out of the room to place her temporary Hemo port. Now before this surgery was hard because there was such a sense of failure in my heart but today was hurt and pain and of course fear,,,which I tried not to over take me. The thing with this one is she would be intubated, and with Faiths’ lung condition and her history with being intubated just made my stomach turn. They of course have to come and tell you the risks and then I said my goodbyes, of course with no way of holding my tears in. I didn’t wait very patiently for them to call or let me know how things were because in a way I could feel that the way they expected it to go it wouldn’t, and didn’t. First of all we came back to the room after getting ourselves together and were told they were placing the permanent line. Now of course I wanted that and was not too fond of having a tube coming out of her neck, but the fact that the people that she was in the hands of didn’t tell us kind of unnerved me.

When we went back to see her she was really out of it and were told they had to pull the first catheter out because it wast o small and the other was too big and they trimmed it down but would be positional for flow. We had to wheel her directly to dialysis to try to see if it would work since she hadn’t been dialyzed for almost 48 hours. When they hooked her up to the machine, which is just scary it started out ok but then she started to scream and then where they cut her to place the catheter opened and started to bleed everywhere. Ok so the whole idea of it all was unnerving but then adding seeing what was going on in from of us just sent us over the edge. Dan began to break and had to get away from everyone because he lost it. See with both of us we had her health and comfort so much in our hands, a lot more then we realize at times, until the times are upon us. Thanks are to god the next day’s showed such improvement. She began to smile and eat again and Thursday evening we were discharged to the Ronald McDonald house. Sleep was not one of the benefits to being there but being out of the hospital setting was a relief.

So at this point she is 6 days a week, 2 hours a day on hemo, and is flowing good and not hurting her, besides making her not eat or move around for that whole time. So every day we wake up head over and start our day telling her not to eat and not move, not a good way to start the day for a 1 year old whose breakfast is life to her. It has been a feat to say the least.

Well here the news, to me, and everyone in our lives. Dan all this time has been the one hoping to be the one to give his kidney to save Faith, well we got the very shocking and depressing news he was not the match to her.

Doctors came in that next day to talk to me and how Faith was, our main thing the whole time once she went through this whole infection thing was we were not wanting to be putting her through a whole new set of surgeries just to tide her over till transplant, so why not rush it?

Well rush it is what we got. When we started talking to them and they told us Faith’s transplant workup would be pretty quick, but the biggest thing was the donor testing. This, they told us would be the shortest of two months which usually never happened, and may take 6. With how Faith has been doing, we didn’t have the 6 months to maybe find someone, which scared me. If Dan wasn’t then we would have to wait every time someone got tested, and no telling how long that would be. So on a thought, which had never even crossed my mind before I called my OB to check my blood type.  I AM AN O!

This is when the emotions start to collide. I was happy I was a match, scared I was a match, and mad Dan wasn’t. That was what he was going to do. Wasn’t it? All this while God has been quite a sneaky one with all of this. The moment we know it will be ok, he takes shows us where to hold fast. The moment we give up, he showed us hope. The moment we were not willing to give in, we gave her back to him and He gave her back to us tenfold.

But now I sit here at a crossroads mad, sad, and scared. Why me? Why could have it not been Dan, but then again it may not be me? That is where the teeter totter is. If I am not the one it will crush me, when I never expected to be the one to be the one to save her life.

As I said before it takes a minimum of months to do the work up on me for testing and come to find out Faith will be done on Friday and they will have the FULL conference on her two Wednesdays from now to put her on surgery books. For me, and most of you, the donor program is a foreign thought or idea so not really something most people know much about, much less me. Well it is a “Donor” driven program. So unless you call, make the appointments, push the doctors, and make this known you WANT this done, it doesn’t happen. SO I came into this pushing, shoving, punching and yelling. This is not something I could WAIT to happen. Again, this is where GOD had his hand. I got a call today. ALL and I say ALL of my work up tests and appointments will be done by Friday. I will know within 12 days if I am a match to save my daughter’s life. They are shoving all the appointments, and I mean allot of stuff I am SCARED of in two days. So in other words me and my FAITH will done Friday to wait together to know if I will be able to give her COMPLETE life.

So ANGER, SADDNESS, FEAR, HOPE, AND HAPPINESS fall into these next weeks for us. Yes it was news I did not expect, but as for the the life of Faith she has sure been the one to show us when not to expect what we want, but what God has planned for us.

So I ask now for Prayer for Faith in these next weeks to hold strong till that kidney come, and me, that I have FAITH that all things are in HIS plan. For I am scared and God has some way of making my fear of needles a reality.

Not the way I wish I had time to write

Well it has been quite a struggle since we came home from the hospital almost a year ago to find the time to write anything in any length besides a long to do list. But unfortunately I have found time to write. This last Tuesday Faith woke up fussy which is REALLY not her, so I vented her and she fell back to sleep. I chalked it up to gas and got on with the morning of getting the kids ready for school loaded and out the door. Well on our way home she started to gag and puke, and of course when I'm being followed by someone on my tale. After that she seemed ok and happy but things drastically changed. I went to go clean out her feed bag and mix up her meds, and she began to scream and from that point on she didn't stop. Even in her sleep she still whined and then the fever started. It hit so fast and so hard so I called the pediatrician to ask him first and he said it was probably the flu bug going around, which I hoped, but felt like it was more. And more it was. Once I got her connected to her cycler she began to drain and that's when I saw it first hand. Peritonitis fluid, or pretty positive it was. There was white fibrin looking worms all over her fluid so I rush a fluid sample down to Centralia hospital and waited as patiently as possible. Didn't at all help that the night previous the nurse called in last minute and got no sleep, so was desperately needing a nights rest after the crazy day and night, but that didn't happen. About 2 hours later I got the call that white cells were in her fluid so I would need to start the antibiotics I had on hand for this exact reason. Now at that point I thought she had screamed but was nothing like the way she screamed when I put in the loading dose of meds. It was all I could do not to cry seeing her in so much pain. After that 3 hours later I loaded all her cycler bags with different dosing of the same meds and started her on the cycler. The next two days were exhausting to say the least and didn't seem to make much improvement but not any worse. Friday afternoon, after of course I called asking why I hadn't heard what the other results were yet, I got a call back. "Come to the hospital now, she will most likely need emergency surgery"....I sat there in disbelief and then lost it. I could barely see through the tears or even hold myself up trying to pack for weeks or who knew how long. I felt so defeated I had been trying so hard to keep her healthy, I felt like I had failed. Basically what I was told is that she had yeast in her fluid, which is BAD! Dan and I drove up in silence and taking turns breaking down, and then I was numb. It was like I was outside my own body, in a terrible nightmare, back at a place I never wanted to be again until transplant. But we were here and having to hold ourselves strong and together while doctors filtered in and out not really doing anything to comfort her as she screamed, and cried burning up with a fever. Things finally got sorted out and Tylenol was given and she started to fall asleep and was told besides them starting an anti fungal medicine they would not know the plan till morning. So again hurry up and wait. That was a start to a night that I wouldn't wish upon anyone. I tried sleeping on a small little couch with Dan but she started to cry the moment I thought I may be able to go to sleep. As she cried, she started to scream, as she started to scream she started to shake, and I tried everything to calm her down, stop her shaking, and not break myself. She hadn’t ate in hours which is not ever what happens but we didn't pack formula. The next morning after hours of waiting and hoping for good news the doctors came in with the news, bad news. They began to say that there was no choice and the catheter would need to be removed. The hope was to place the hemo catheter at the same time but that probably was not going to be the case because of the infection and chance of it causing infection in a direct blood line. Then they began to tell us how long we would have to be in the hospital and how long she may have to do hemodialysis because her peritoneal cavity may be to scarred from infection to use again. Again not what I wanted to hear or what I even expected. Being hit with that blow and not expecting half of what they said, I broke down. I felt bad for the doctors because they didn't know what to say and I did try my hardest to hold it together but thinking of how long I would be away from home again and missing all the events I was planning on attending made me break. As the day went on we heard that they would have to do two different surgeries, which then turned into three and no idea how long we would have to say in hospital, but for sure would have to do at least 5 days a week of hemo dialysis at the hospital. Well all fine and dandy if we didn’t live 2 hours away. So now it is the juggling act on what we do, how long it will be, what will we miss and what will we have to do to sort it all out. I hate this place because it is so far from home and brings no good feelings at all, but the nursing staff is one of the most amazing group of people. In a time like this they do an amazing job to do what they can for you, and for that we are so very grateful. So we now sit and wait to hear what the next step will be, when it will be and what to expect. So hurry up and wait and put on your bungee cord because we are going jumping again.

I just had to post and take the time on my phone to just share how I was feeling. It is crazy how emotional I am right now. Anyone who really knows me, knows I try so very hard not to cry. Well crying I am. As I hugged Dan tonight I lost it. It was the first time I had seen Faith here for Christmas. When they first told me she wouldn't survive it was the first holiday I was trying to see how I could cope with out her being there. So on the eve of that day all I can say is I sit here in tears in amazement and she is what I get to see in the morning. Smiling, crinkling the paper and looking into my eyes. Our miracle is here!! She is here! Merry Christmas