Our journey home part 2

As we began to drive we weren't out of the parking lot and the anxiety hit. I know I'd been wanting to be home but actually doing it set in so much anxiety a horse size pill couldn't calm me. I began to call my family and no one answered but Bev. Its hard to be so excited to tell everyone when no one is there to tell. The thing is, is I didn't tell anyone or even pack till the discharge papers were being signed. She had made me have a different plan then I wanted most of the time and this time I couldn't get my hopes up till I knew for real. I had spent another night of no sleep next to her bed keeping her from gaging and puking since dan misunderstood about when and how we were going to switch time with her. So at 6 I went to rest for an hour then the mad sweaty rush of packing and signing my life away began (or it seemed, since I have never signed so many forms in my life.) As we drove down the freeway I was amazed how everything had changed, see I hadn't been outside really for three weeks. I then felt how long I really was gone.

When we pulled in the driveway there was the overwhelming emotion that finally hit me that I was home. Three months and five days had passed since I had slept in my own home, put my kids to bed in their beds, and fell asleep all there. It was that way most the night after the stress of trying to unpack enough to find her dialysis supplies and our bed. I wish I had taken a picture of all the stuff piled on our bed and in the living room but didn't think about it...imagine that. So to say the least I worked morning to night for a week straight just to get my house in some order.

That first week was long, hard, and very exhausting. I got no sleep and the stress of getting kids off to school every morning with her still hooked to the machine and her feeds were another feat that I couldn't get a handle on. Along with the stress of doing all I could to keep her stable and doing good so I wouldn't have to go back was probably the hardest. Then on wednesday night, which she was going to her regular appointment anyhow, was a night I will never forget.

I hooked her up as normal after doing all her vitals and watched her initial drain. As it started to pull the line began to fill with air and I panicked. I instantly stopped it and called Baxter, the company that makes the cycler. They said to set up a new set...which sucks cause another 20 minutes is wasted, and to call the dialysis nurse and let her know. I called and talked to Melinda in hope it was just the machine, well we soon found out it wasn't. After three hours of trying to get her to drain and fill I disconnected her and turned off her drip feeds. This was the first time she didn't have continuous feeds while she slept so she woke up I can't even count how many times dying, or what she thought, of hunger. Trying to feed an overly hungry overly exhausted baby when you can't even spell your name is quite a sight is all I can say. They wanted me up there as soon as I could so got the kids on the bus, grabbed a quad shot coffee and started my drive to Seattle. When I first started going I didn't think about it but there is alot of things to manage with her on a drive like that...oxygen, feeds, and keeping her from throwing up (which at that time she would every morning especially when put in a car seat).

The day started with inserting tpa in her catheter, then blood draws, meeting with doctors, training, pharmacy(since they finally listened to me that she needed heprin in her dialisate) then 8 hours later I was on the road home. About 5 minutes in traffic she began to freak out. Not much I could do besides try to hold her pacifier, rock her seat, talk to her, oh and try not to crash. After she screamed so hard she could hardly breathe and so sweaty she felt like I just bathed her, she passed out. It was then it took all of me to stay calm and not run every one off the road trying to get home, which took 4 hours because of traffic.

After that appointment I NEVER go by myself and she has not had a clot again.

Life now is somewhat more manageable but still can't really get much done since, well I'll walk you through a normal day.

I'm awoken by Dan at 4am when he gets up too go to work and says by about 5. Then at 6am the nurse comes and walks me through what the night was like, which is usually...she slept, it alarmed a few times but she did good. Then it is off to adding one of her meds an hour to her feeds which will go for about 3 more hours. As she finishes that and her dialysis I sit with her and try to keep her happy, because she doesn't like being left alone. During this time too the kids wake up, I have to pump, and dogs need out. As end therapy shows on the screen I begin her cares, temp, blood pressure(which I hate since she has to sit still or it alarms), and as soon as her feeds are complete I scrub mask and glove up to disconnect her. Then its onto weighing, which she is putting on pounds like crazy just not enough length.

Once she is all done with all that and its recorded we either do out partial bath of her head neck and tummy, but every other is her complete bath and dressing change. So to say the least I'm lucky to get dressed before 11. Then half way through the day I give her a bolust feed with her sodium chloride and part of her AM sodium phos. In between getting what I can do top of feeding her and pumping for her night drips. We are so fortunate to have a nurse from 10-6am. So at about 6:30 we get all her dialysis supplies, insert heprin in the bags, set up cycler and do all her cares again. By that time I'm doing dinner at the same time so Dan usually connects her, and her 13 hours begin. During this time for her waiting for her feeds I feed her and then about 10 pm her night drips starts with her added medication and added calories and protein and she finally falls asleep. Then I'm off to filling the nurse in about her day and any changes, pump yet again, then to bed by about 11 and then it all starts over again.

Now don't get me wrong I do get extremely overwhelmed with all the things I need to do everyday for her plus trying to get things done or caught up, which leaves me to tears some days but I wouldn't trade her for the world. She has changed my life my families life and so many around me that I couldn't imagine it without her. She is my fighting Faith.

Our journey home part 1

Well I have to say having a chance to actually write things down has become quite a feat. We have now been home for almost seven weeks now! I have tried countless times to write about all the things that have happened since I last wrote and I can give a brief summary from what this tired mom can remember.

So a week prior to us FINALLY coming home we were transfered out of the nicu. Now we were going to be able to leave to the floor on tuesday but faith as always had another idea for that. That night her blood pressure dropped and as they were doing her rounds she woke up and spit up so I went to change her. And I can't believe what I saw. She had raised hive type spots all over her abdomine. It quickly spread all over her body and all you could see is red. At this point in time dan was home with the kids since my mom went in for surgery and so we had no one to get them to from school and all their appts. I called the nurse in hoping she had some answer for me and that is when the chaos began. Blood draws, eco test on her heart, ultrasound, xrays, and specialist visits. All the while I sat there watching her scream with no answer to it. By the end of the day the only answer I had was she was severely dehydrated and her blood volume was low in her heart which was making her levels drop. The rash was and still is unknown. That day she got to shots of saline water and by the next morning my happy baby was back. What they didn't tell me and I heard in rounds is that her heart was beginning to thicken. Basically because her lungs being so small it was making her heart work harder to oxygenate her body. So with any muscle working harder it gets bigger. Now its not to big of a deal if it doesn't continue but it is another thing we will have to monitor and keep an eye on.

Friday came and with that our move out of the nicu. I purposely didn't say anything to anyone, especially faith since I now knew she had her own agenda. Luckily dan was there for that since it was quite a shock. The room was such an upgrade with a tv, couch, and our own bathroom BUT the down fall was the lack of nursing. The main reason for going there first was to get used to doing it all on our own, and did we ever.

The thought was and was told that we would only be on the floor for a few days but that of course changed. I was put through the ringer of training and no sleep. See when she is on dialysis at night with her drip feeds was the only time she the up, but along with that if she threw up once her chance of coughing and throwing up was even higher. So I spent my nights in her room since the nurse would not hear her and the doctors were keeping us there for every little thing.

So I fought my butt off for nights on end with no sleep to show then what I am willing to do to get home, but it didn't work. That is when I broke down and got lost in all of it. All of the discharge planning, the equipment, the responsibilities, the what ifs. That its when I doubted myself and who I was as a mom...and too say the least it didn't last long.

For three days straight I lived in her room. One day I didn't even go to the bathroom our eat for 7 hours. Just to cram in all the info they should and could have done for 3 months. That is what they were going to keep me there for another week to do! Deaming me again of being incapable of taking care of her, even though I had been for months. It was like I was being bullied by the doctors. Dan wanted to pick us up wednesday, well wednesday came and went then they said maybe friday. When that changed and they said they wanted to wait till the following wednesday dan lost it and came to fight the battle I had been in for a week now. They also wanted to up her fill volume and up her hours and dextrose solution. All of which I questioned and didn't want happening, but again I wasn't being heard. But they heard Dan that's for sure! So sunday with chaos of packing three months worth of clothes, supplies, and a baby we were on our way home. Three months and four days later.