Beena a LONG LONG time since I was able to sit and write but this is a REASON!! Back to two years ago, again can’t believe it has been two years. I was sitting saying goodbye to Tristan and Savanna at Mel’s house not really knowing how long they would be there, but again with what we were told I didn’t see it being to long. The thing is I was supposed to be induced, but true to Faith I just went into labor on my own that next morning. It was like she was listening and knew it was time to start fighting, and fight she did. Almost one whole year went by since she had to seen the inside of a hospital room again, 3 days to be exact, but that soon drastically changed again. She had got her transfer set changed on her PD catheter replaced 4 days earlier(which I really believe what happened) she got sick, and sick quick . We checked into Children’s on May 25th not knowing what we were going to deal with but hoping all the same that it was just something meds would fix. That would soon change when the two doctors walked in the room to tell us that on top of peritonitis she had a fungal infection which would require her to get her catheter removed because her peritoneum would may now be too scared to use for dialysis and so she would have to be put on Hemo until the infection cleared. The whole time the doctors were talking to us I held it together pretty good until they asked if I had questions, and at that point all I could think of was transplant. She had JUST been referred so I knew it wasn't a push asking if that could be an option instead of doing Hemo dialysis till the next surgery to put the PD catheter which may not even work. They said they would ask, and that is when we PUSHED. On August 23rd, a day before Tristan’s 9thbirthday me and her went into surgery to exchange my kidney to my baby girl. I was able to save my baby girl. I got flack from some people saying how I could take that risk when I had other children to live for. That was sickening to me, kind of like the doctors asking how much we would do to make Faith live. My answer ANYHTING I CAN. So tonight we are just hours from when she was rushed and cared for into this word. She was never welcomed but rushed and worried over. I think seeing that she had to show them it was worth it. She lies here tonight asleep, just done with her nepo shots and ready to celebrate her birthday with close family since the risk of sickness is way too high. See I kind of had a false sense of security when she had her transplant thinking that we would be in the clear but that is far far from true. The risk of cold, flu, or normal sickness is not a no biggy for us. Especially with the white counts being the way they have been with the meds she is on. I had a mom of another transplant child ask me if I was worried or scared to go home. I said no not much just need to get used to our new “norm” well little did I know how much it would really affect me, my husband and our relationship. Trying to constantly now worrying and praying God gives you strength, you forget to pray for your marriage, again something the doctors told us would suffer. We have tried really hard to not let it destroy us, but I would be lying if it was not very very hard. More than anything though we are about to hold hands together about to sing our miracle, and I again say miracle baby Happy 2nd birthday. Our Faith will be 2!! She is crawling trying to walk and such a joy you give so many around us I feel blessed to have been the mom to deal with this road God has given us because you can’t have another baby so special, happy, and so important to so many. Happy birthday baby girl I love you so very much and years from now I hope you can look back and see how much you were loved and prayed for. Mom

Onto another OR visit

Why is it as a mother when you hear your child cry and you are unable to hold them, you start to rock? Or you can be in a room full of commotion and noise, if your baby cries you hear it? Or when your baby sits in a bed screaming and crying you are able to not feel any of your own pain just to take theirs away? As much as I should be taking it easier there is no more I can do at this point. Because i can't not hear her cry, want to push the nurses aside and rock her when she screams or hold her even though it hurts so bad for me. I'm a mom. They have came in to give the anesthesia talk to take her back. Yesterday her incision started to drain first just a little bit but by the end of the day when I held her in my lap it soaked through the gauze, her diaper and the pillowcases. So to say the last it got worse. The drainage was clear for the most past and not to bloody so they aren't concerned that it is an infection which is GOOD. But the chance that the skin has separated from her muscle wall and created a pocket of fluid is a concern, also that the internal incision has torn. Her abdomen has went down some since yesterday but still very big, so much so that she is needing respiratory support and not giving her intestines room to work. Most of all the pain she is in. So here is to more OR time and prayers to start calm and rest. My sweet Booger

Dreaded Recovery

Between the medical chaos and the relationship issues I don’t know how much more this  weak body can take but Im sure it will keep on coming. With that I will keep on trucking along. Don’t really see how 6 days have gone by already but it has, crazy enough.

 Saturday I took it extra easy since I taught myself a hard lesson on Friday doing too much. Sunday though I didn’t have much of a choice. Faith is in the PICU and is sharing a room, which I didn’t think kids did in the ICU. At rounds we fought for them to give her food since the poor girl is starving and wants to eat, screaming to eat.  They also put in an IV in her head which she had been in restraints that night so something they were going to be pulling since Lasix was the only thing they were using the IV for. The plan was to just give Lasix every 6 hours instead. That was about 10 and the IV was not working when they tested it before pulling it. We also got the go ahead to feed her 30ml every 3 hours of pedia sure.  The moment they got the IV out we mixed a bottle up. When we brought the bottle bed side and she screamed a scream I’ve never heard before. She took it with two hands and ate like I’ve never seen anyone before. The poor baby girl was and is starving. The day went downhill from there. She stopped peeing almost the same time, and then she started running a fever. All along she has been holding fluid in her legs and feet and also her abdomen, but as the day went on it got more and more full. With that she got more and more increasingly agitated. Then with that her lungs got wet requiring her to need more oxygen. Still no pee and so all tests were run and x-rays. The first to come back was the x-ray which ruled out pneumonia. Next was the blood draws that we won’t know anything for two days.

We were blessed when she was first in the NICU to have and meet Ryan McAdams. He was a blessing to us then and throughout this past year has been too. He has kept in constant contact and prayer for us, made it to Faiths birthday, was there when we were admitted when she got sick a few months ago. Then Saturday night when he came to check in he came when she was at her worst fever, vomiting, screaming, swollen, and not peeing.  He prayed with us and asked if Healy had been in or knew this was going on. Within 30 minutes of him leaving low and behold Healy showed up. He ordered this and that and demanded the up in Lasix and started it, and the pee came! The fever broke soon after and she went to sleep. At that point the room was empty besides us but getting ready for the third child to be admitted. I went to lie down since again as much I tried not to, I over did it. As I lay in bed waiting for Dan to get back from checking on Faith I could hear a child being airlifted in, and that is such a horrible feeling.

I was awoken this morning very rudely for that matter when I realized I slept through my alarms to take my pain meds. So in other words I was hurting and hurting bad. My dear Faith when we got there was somewhat asleep and her swelling in her legs had gone down some and she put out a lot of urine last night.  As I sat there with her waiting on rounds my eyes noticed the new child in the room. You know with certain kids that the road is not good. While standing there they gave the family the talk about his chance of survival, knowing all too well what it is like to be in their shoes. They did two bedside procedures just while we waited for the doctor to come back and hearing the family screaming and crying in the waiting room today was enough to take what I had left away. With all the commotion with this dear boy, and I think Faith screaming in the back ground, was too much for the doctors so we got moved to our own room.

Faiths belly is so big it is shiny and is so uncomfortable for her. SO much so that the sutures from the surgery are popping apart. SO now it is trying to get that fluid off of her to relieve the pain and pressure and then we can start to feed her. Such a long hill to still climb.

As for me I am now on antibiotics with an infection in one of the sutures from surgery which I have to go see a doctor for tomorrow. So we both have quite a road still to go so prayers please. And way to much to report for just 24 hours holy smokes. Off to bed.

Surgery

Wow wow wow is all I can say. Still hasn’t really sunk in what has happened yet, but it has. It has now been almost 72 hours since I came out of surgery and gave my baby girl the life saving organ she needed. I went into surgery expecting pain but not quite pain like this. I have a pretty high pain tolerance and don’t like sitting still but this surgery didn’t really give me that option. From the moment I got admitted into the hospital my main goal was to get discharged so I wasn’t doing my best at taking care of myself. On Tuesday night I and Dan stayed with faith at the hospital in her room and my mom and Gus stayed at the apartment so they could get some sleep. I knew I wouldn’t be able to sleep very well because of just the thoughts of it all but added the fact Faith would be NPO after 1 am and she does not like being hungry. So sure enough at 4:30 I tried for quite a while but she wouldn’t go back to sleep because of her hunger so we got up and showered. By the time I was done Dans mom, dad, sister, hubby and kids were there and it was time to go. The day previous again was so insanely busy I didn’t lose it once but when I grabbed faith to say goodbye it all changed. After holding her and not wanting to let go we went and got checked in.

My dearest Darbi was there at the hospital when we got there so I had a few people to keep me distracted from IVs and the pre surgery talks. Jordan made it up too before so was able to say goodbye before I took the stroll to the cold loud surgery room. I don’t remember anything after them telling me to take a few breathes and telling me goodnight.

 

I woke up in A LOT of pain and them moving me to another bed to wheel me out of the OR. They were luckily right on top of it and got me comfortable before they got me to my room. I had to wait a while to leave recovery since there wasn’t a room ready and Dan was over with Faith. So I sat alone for quite some time, not sure how long though. When they finally took the last corner I saw Dan and started to cry, which was the worst pain EVER, but didn’t expect him to be there. Seeing my family was and always been emotional but pulled it together and asked how faith was. She has gotten the kidney and was attaching it right then. I became quite the comedian all drugged up. I was very comfortable and silly for quite some time but once I started getting tired, falling asleep while talking, the meds started to wear off and fast. The gas pain settled in my shoulder, my incisions started to ache and got really nauseas. It took a bit for them to get the nausea under control and pain. Dan went back to be with faith and sent me a picture of Faith, and she was peeing. Crazy the things we have looked forward to with her. And pee is a big thing. Darbi stayed the night with me and Dan went and stayed at the apartment. I of course got no sleep in between having to push a button to relieve pain since that was the only pain medicine I was on. Then about 4am I couldn't take it anymore and woke Darbi to get the nurse because my bladder felt full, even though I had a catheter in. When she empted me I had over 800mls sitting in there, guess there was a reason I was uncomfortable. Then the blood draws, and shots, and vitals kept me up the rest of the time. Thursday I made my laps and kept skyping Faith, even though she was so out of it.

So yesterday was my day to hopefully get discharged and I did. I made my laps to show them I could walk, ate food to show them I could hold it down and they gave the green light. By the time we got discharged it was 4 and Mel and my family and kids were here to see me so they just met me at the PICU. Getting off the elevator and seeing the kids made me lose it, very unexpectedly. I went to see faith which not for long because I quickly started to not feel so good. By the time I said bye to them and her and got a ride back to the apartment I was not doing good at all. I had the shakes, was cold, and felt sick. I had waited too long to eat or take meds and my body was telling me that’s for sure. The night was long but got better once I got the pain under control, so learned my lesson well.

 

Now as far as Faith the kidney is doing good and producing a lot of clear urine, creatinine level is down even since yesterday and she is the pinkest I’ve ever seen her. Today though she is pretty crabby, and uncomfortable. Partly because of surgery pain, other because of the fluid she is holding onto, and the bowels beginning to wake up. Which Faith of the two times she popped her lung it was because of gas pain, so to say the least she hates gas. I went back to lie down for an hour or so and during that time she pulled her tube out of her nose and puked. Guess her way of saying she doesn’t like it and wants food.  So at this point it figuring out what and when she can start to get food, and how to keep her comfortable since she is pretty puffy.

So right now I am trying to recover and take it easy, knowing the pain faith is feeling right now and no way to pick her up and comfort her, which is quite hard. But peaceful knowing I get to be here with her. God has brought us to it, through it, and now we just need the recovery.  

This picture was from today when our amazing NICU Dr faith had when were here last time. He has been in touch with us this whole time and came to see her and us today. Such an amazing doctor and man.

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!!