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.