"TAYLOR TITLE LOVE"

Our nightmare continued last night. I mentioned the central line failing and that Taylor would need to get a PIC line again. Basically, Taylor had a central line placed during the time when the ventilator was inserted. She was supposed to get it in the groin, but that did not work so she got it in her upper left shoulder area. The central line is fed to the heart. Unfortunately, Taylor's line did not get fed like they wanted to and it initially ended up going upward toward her face instead of down toward her heart. They hoped that it would move on its own. It did not. Worst yet it infiltrated. Throughout the evening the right side of Taylor's face was swelling. Michelle brought this to their attention and at first they just thought it was the result of trauma from the line being placed. Michelle as always did not give up and eventually convinced them that they should try pulling some blood back or pushing some saline in to see if there were any problems. They did it and sure enough it didn't work. They moved her medicine down to another normal iv catheter in her foot and got the doctor's permission to remove the central line. They then ordered for a PIC line to be placed.

I think this was around 11 o'clock. They placed a call for the PIC line installers and told us it wouldn't be to long. We were also told that some of the folks who installed it wouldn't mind if we were in the room. We were extremely tired but felt we wanted to be there for Taylor. So we sat with our baby and just tried to put some sense into everything we had gone through. What a nightmarish day it had been, but at least things were for the most part stable and we decided that we would try and get some sleep after the line was installed. The hospital has a quiet room for parent where you can and go crash for awhile. Its a shared room with about 8 beds in it. Anyway, there was a limit of 1 person per family in it, but we decided that we would just squeeze together in a bed and pretend nobody had told us not too. I was looking forward to just holding Michelle for a few hours and just closing my eyes.


Time went on and on and we were still waiting. Finally the guy showed up and started an assessment on where to place it. It was a real interesting process. He had an ultrasound and would go slowly over Taylor's legs or arms looking for a vein he could use. I am astonished on what some people see in those ultrasounds. My eye eventually saw what he was talking about but only after he showed us a really good example. Regardless, he was not having a whole lot of luck and the assessment went on and on and on. Finally he decided that he would place it in her right arm. He started getting set up for it, when the night took a sudden turn for the worse.


Our RT nurse ran in/out of the room a couple times and we could hear her talking with the doctor in the hall. Taylor's blood gas test had come back and it was not good news. I think her CO2 level in her blood was in the mid 70s and it had risen quickly from the previous test. Our stomachs dropped. This had happened (not to this level) through the night and they had made tweaks and adjustments. The last test showed a droppage that was getting her into normal range and it looked like she was getting to be stable on the ventilator. But the new test revealed just the opposite. The RT ran in saying that "it looked like we had gotten off to a rough start with the ventilator and that they would need to adjust some numbers and give her an albuterol treatment if that was okay with us." Of course, we were just shocked by this and kind of just uttered 'huh?' to which the RT responded that we would have to talk with the doctor. Our stomachs about hit the floor. So we went out to meet the doctor. At that moment another RSV infant was needing to be placed on a ventilator and our doctor couldn't talk. So we went back to our room and the RT nurse just kind of said "oh, that's too bad." I wanted to ring her neck. We had had a previous altercation with her earlier in the night when Michelle had confronted her with being more gentle with the care she gave Taylor. She was defensive about it, and walked away unhappy. Whether or not she was still mad about that or not, I don't know, but I can personally say that she scared the crap out of me and w/out any other information to be found just angered me something fierce. Anyway, she did her thing and they got the albuterol treatment going and then the PIC line guy asked us to leave, because we couldn't be there while they installed the PIC. We left the room just stunned. About all we knew was the stability that we thought we had 10 minutes ago had completely disintegrated and we had no idea why.


We went out to wait in the lobby and basically just fell apart. I think this was around 2 in morning. We held each other for a while and then walked down the hallway to find a spot to sit and wait. We were just kind of walking to walk and not really thinking and we just kind of picked a place to stop for nothing more to just stop and hold each other again. We have been afraid so much during Taylor's life, but this was a level we had never collectively reached. On top of it we were so exhausted and were struggling to even think straight. I have never in my life seen Michelle so scared and sad. And it just tore me up. We were so afraid that Taylor's lungs were too messed up for even the ventilator, and that we were going to lose our baby girl. We just kind of sat down and held each other and cried.


I would say that I'm not believer in signs and stuff like that but those that know me would probably say different. Maybe even readers of this blog would remember how I used to listen to the radio on my way to the hospital before Taylor was born, and how I used to look for meaning in the songs that played on the way. The right series of songs would usually predict a bad night, and a good series of songs would predict a good. At times I would be flipping radio stations and a song would just start up and grab me and I knew it meant something. Silly I know, but I'm weird. I still smile every time I hear Good Vibrations because it was a song I heard several times early on and it made be convinced that things were going to be ok. But, anyway, I digress..


I am really not exactly sure when I first saw it or what drew my eye there. I know I probably was looking right at it for a while not really seeing anything but just kind of trying to deal with emotions. But eventually I saw what was in front of me. The hospital wall of the pediatric unit at Emanuel is playfully painted and they have paintings and pictures that kids have made hanging on it. I hadn't really noticed them before. For whatever reason I focused in one. It was cute little drawing that some little child had done. There was a house and trees and flowers and what looked like a couple people hanging out in front of it. I've seen pictures like this a million times from Haylee and recognize it for exactly what it is. Its the love of family and home through the eyes of the child. I can't really remember if they were all uppercase letters or not (I'm guessing so) but in the sky in this picture above the family and trees and house were the following words:
'TAYLOR TITLE LOVE"


Tears filled my eyes as I looked again and again at it. Looking at some of the other pictures and the little captions next to them and I could tell that it was picture from a child named Taylor and the title of her picture was "Love". I kind of laughed when I figured that out and realized how the child had written down on the picture what he/she was supposed too, but not necessarily in the order he/she was supposed too. I could barely speak and just kind of tapped on Michelle and asked her if she wanted to see a good sign and pointed over to the picture. She smiled. Assuming things get going good I'm going to have to take my camera in and get a picture of that drawing because it made me feel a whole lot better.


We waited for a while. We were shaking with fear and tiredness and from the freezing cold. Apparently they don't heat that part of the building in the middle of the night. Anyway, the doctor finally came out and talked with us. He was concerned about Taylor's progress, and there were things that weren't making sense to him. But he told us that they were making adjustments again and that they would get this figured out. His concerns were that they were using a lot of pressure and a lot of pressure is not a good thing for lungs especially if there had already been air that leaked out. Michelle asked him point blank if she was going to lose her child, and he said no, absolutely not. In all this time, they had never lost an RSV infant and it was going to be Taylor (of course he knocked on wood as he was saying this). He said she was going to get better and that it was just going to take some time. He also said that he was the least experienced of the doctors on the staff and that we would be seeing a new doctor in the morning. He assured us that the staff was top notch and we couldn't be in a better place (right now we believe that as well). He also told us (I'm pretty sure it was then but I'm getting a little foggy on it) that he wouldn't be surprised to see them move Taylor to a different ventilator, because he was concerned about the amount of pressure he was having to apply to her lungs. We talked about other things as well including the RT nurse, and he told us that he had heard we had problems with her and that he personally had told her that he wanted to explain things to us, and to tell us that.


We felt better when he left. The PIC was still being installed and he told us that he would let us know more about that as it went on, and that he would also have another xray done after the PIC was in place to double check the PIC placement and also to see how Taylor's lungs looked again.


Time went by slowly. We were told the PIC placement should only take about 45 minutes. Taylor's in the NICU had taken about 1/2 hour. 45 minutes came and went, and then an hour and then an hour and half, and after about 2 hours the PIC installer came out. He said they had it in place and that it had been really tricky (he later told us that it was the hardest one he had ever installed) because of Taylor's veins. This wasn't a surprise to us. Taylor's had 10 iv placements fail, and even one PIC line as well. Anyway, he said they were wrapping up and would come get us in 10 or 15 minutes. An hour went by before someone came and it was the doctor again. He said they were done with the PIC and the xray showed that the PIC was placed perfectly. He also said though that he was real concerned about something else he was seeing in the xray and wanted to get a CAT scan on Taylor. Whatever was left of my stomach (which wasn't much) simply disintegrated when it hit the floor again. He showed us the xray and told us that he did not totally understand what he was seeing. Along the center of the ribs was an area of something. He wasn't sure if it was liquid, or air, or infection or just RSV stuff. But he wanted to get it checked out. He also told us again that he wouldn't be surprised if they wanted to change to a different ventilator at some future point. But right now he needed to see what the CAT scan showed. They were still cleaning up some stuff on Taylor and wanted to give her a second or two before moving her downstairs for the scan. It would be a while before the full scan results were in although he would be able to some analyses fairly quickly.


It was 5 in the morning and we were beyond wiped out. We needed some sleep so we told them were to find us if something changed and we kissed Taylor good night. You could see that they had several failed attempts of placing the PIC and finally got it. Some of her swelling had gone down by then as well. Anyway, we went to the quite room and after some more talking between us we finally got to sleep.


We were woke up around 8:45 or so by our new RT. He came to tell us that he wanted to switch the ventilator. Taylor's numbers had gotten worse and he did not want to continue with the existing ventilator. He wanted to use a high frequency ventilator. It basically would apply more rapid spurts of air into the lungs. Taylor would still be breathing but her lungs would never really deflate. He said it was a great machine for this purpose and that Emanuel was lucky to have one. He noted that OHSU often gets all the media love, but that it wasn't even an option over there. He was a great guy and tried to make us fell more at ease. The ventilator is heavier, louder and causes vibration. Because of all of the above they would need to keep Taylor even more sedated. Basically she wouldn't be moving at all. He hadn't heard the results of the CAT scan. He left to get it switched over.

We just were sitting there wondering why the nightmare was continuing. We got up, cleaned up a little in the bathroom and then went to Taylor's room. They had switched it over by then. I have to say that on Sunday I was scared to see Taylor once she got the first ventilator. I just had these images in my head on what she would look like and I didn't really want to see. But when we got in there, another feeling overwhelmed me and that was just one of relief because I could see Taylor's lungs were getting a break. That last coughing fit scared the crap out of me. Her lungs had been working so hard.

Anyway, here we were walking in to see her on her new ventilator. This time it hit me and hit me hard. Taylor's head was vibrating and there was the very elaborate, old clunky machine hooked up to her making all sorts of weird sounds. My eyes just filled with tears. Beyond the vibrations from the machines, she was motionless. She looked peaceful, but there were just so many gadgets and tubes and other things hooked up to her that I just wanted to cry. Our poor baby girl. Why did it have to be her? It just broke my heart.

The RT was there and our new nurses and they talked with us and were just great to us. We soon got some good news and that was that the change had helped and her numbers were improving. Taylor had a catheter placed as well because she hadn't peed for a very long time. After it was placed, a lot of urine came out.

We met with the doctor and he seemed really great as well, and had a good one on one conversation with us. He said he thought what he was seeing in the xrays and CAT scans was nothing more unusual than what we already knew. She had some air, and lots of RSV stuff in there. He was concerned that they might need to put a chest tube in to get some air out, but didn't know for sure. He was more concerned about her hematocrit (red blood cell count) levels. He said her levels were low to begin with (not at all unusual for a breastfed baby or a preemie) but that they were getting real low. He said that he was pretty sure she would need a blood transfusion sometime during her stay, and told us about blood donor options.

I told him that we'd love to give blood if we could, but realistically it wouldn't be here in time. Back before Taylor was born, Shanon gave some blood in case Michelle needed it (she never did thankfully). It took several weeks for the process to complete. I told him that we didn't have enough time. He agreed and Michelle later signed a consent form on that.

The doctor also said he was still a little concerned about whooping cough, but that the results wouldn't be in for a day or two. He didn't think so, but had not ruled it out yet. He said it wouldn't be unusual for a bacterial infection to move in on top of RSV, but it wasn't very common.

From that point on things actually started feeling a bit better. Taylor was improving and they were turning down some things on the ventilator. Michelle and myself had previously discussed it and thought it would be best if she went home today and I stayed. But Taylor was so sedated it didn't really seem necessary. I was having a real problem keeping the tears back as well so eventually I decided to go home as well. Michelle would come back up and I would stay with the kids. It was really hard leaving though. Life at home away from a loved in such a condition is extremely hard. The time spent at home when Michelle was in the hospital before Taylor was born was probably some of the hardest moments of my life. Not being there for Taylor when Michelle and myself were rotating was hard as well, but a bit easier because I knew Michelle was there. Today was probably the hardest though. Despite all the negatives that have happened this weekend, there was a positive. I really enjoyed holding Taylor and being with Taylor and not having anything else to focus on but Taylor. I love all our children so much. Just being there with her in my arms felt so good. I would do anything in the world I could to eliminate her pain and discomfort. She is so special to us and I can't imagine her not in our lives.

Anyway, we came home. Michelle went back to the hospital and I've been writing this update. She just called and things are looking up for now. She had another xray and it appears that her pneumothoraxes are essentially gone. She is down some on her oxygen. Her latest hematocrit levels had actually gone up (they are not sure if its lab error) so they have not given her any blood. For the most part nothing real negative. And that's a change in the right in the direction.

I'm not quite sure what the future holds. I of course am still quite scared. Complications can arise in many different forms and fairly easily as well. But for now, today has been a better day. And I'll take that to bed and try to get some much needed sleep, and just hope Taylor continues improving. She'll get better. She just has too.