We were prepared for things to get worse, but not this. We are full of all forms of emotions, from shock to anger to just plain sadness for our baby girl. Taylor got worse Friday and Saturday. We were told this would happen. RSV typically peaks at 5-7 days. I've been staying at the hospital with Michelle since Friday night, trying to give her a break. She was and still is quite exhausted. Taylor had bouts of uncontrollable coughing. If would take a lot of work to get her calm. The coughing would also cause Taylor to gag and throw up. She was put on a cannula on Thursday, and on Friday it was changed from just oxygen to the high flow cannula. Friday morning she had a really bad bout of coughing and it started turning more to something that resembled a spasm, than Taylor just trying to cough. They started talking on Friday that they might need to move her Emanuel because they didn't have intensive care there and they were starting to get concerned that she might need more care than they could provide. Michelle asked many times about the spasm cough, and we were told by many people that it was what babies sounded like RSV.
They started giving Taylor treatments of albuterol. Its an asthma medicine used to help get the coughing under control. They administered it on a schedule whether Taylor was coughing or not. At times it was effective. It did seem to work at times to get the coughing under control. At other times, Taylor would be resting peacefully and be given it and the start coughing. Michelle finally had enough and told them she did not want unless Taylor was coughing. The medicine also cause Taylor to get sick and several times after the treatment she vomited. They were not coughing/gag related but just horrible projectile vomiting.
Anyway, Saturday evening Taylor started coughing really bad and Michelle told them to go ahead and administer a treatment. They were short staffed (there is an outbreak of RSV and influenza right now), and there were also deliveries occurring. Anyway, it took them hours to get there and get it done. Later that night, I was holding Taylor and commented to Michelle how I did not like the way Taylor was breathing. She was working harder than I have ever seen. We called the nurses, respiratory therapist and doctor to look at her. You could tell they were kind of worried, but also reassured us this was par for the course with RSV. But Taylor was also getting real dependent on oxygen and they kept having to turn it up, not down.
Throughout the night, the RT nurse made several comments though that indicated she thought it more than standard RSV. She had made one comment about Taylor having to do the albuterol treatments for a lot longer. I asked how many days and she said she thought 4 or 5. She also asked when the last time Taylor had an x-ray. You could tell that she was bothered. But she was also in/out because she was so very busy with other kids.
Sunday morning the doctor order a x-ray. Taylor was having another bad coughing spell, and the doctor was preparing us that we would probably need to be moved. She came in later and told us that the x-ray showed there was stuff in the lungs and they would need to transport Taylor to Emanuel. In the meantime they wanted to get an iv going, and other stuff. Once again Taylor's veins proved a hard challenge. They tried twice on the head and failed. So they waited for the transport team to do it. The transport team went through 2 veins on the arms and one in the leg and then gave up. The nurse at Emmanuel nailed it on the first attempt.
Anyway, we got over to Emmanuel and they checked Taylor out. The doctor called us in and showed us the x-ray and said it was not what he was told. He showed us where the lung collapsed and he showed us how the left lung was trying to compensate by filling in the space. He said he thought it was a result of excessive coughing, but also told us later that it was very rare (he had only seen it one other time due to RSV). He also showed us where he thought there might be air. He kept Taylor on CPAP (Taylor had been put back on it for transfer), had her positioned on her side and had RT do some therapy on her to try and break up some of the mucus. After his therapy they sucked some of the stuff out and Taylor started coughing uncontrollably again. She was working extremely hard, and it was obvious to everyone that she needed more help.
So the doctor ordered her being put on a ventilator. He also wanted to place a central line at the same time, because the iv wouldn't be enough for all the narcotics. With very heavy hearts, Michelle and myself left the room (we couldn't be there).
Taylor has come so far. She's suffered through more stuff in her short little life than most people do in a lifetime. It so unfair that we just came back full-circle to what was our biggest nightmare when she was born and that was her having to be on a ventilator. It is a lot different between a gestanional 2 month old and a 28 weeker. The oxygen and respirator concerns are still very worrisome but not as much. But it is still incredibly scary, and I just want my daughter back healthy and happy like she was just 1 week ago. I cried when I heard she was going back on CPAP. Now I can't wait for her to get back off the ventilator and back to CPAP.
It feels like I failed Taylor. Its just not fair for her to be going through this. We were so careful when we got her out of the hospital. We would not go places, nor have anyone over who had been sick. Time went on and she was doing so good and soon we took her a restaurant or a movie, etc.. Haylee and Tristan would catch a cold or something but Taylor was fine. We started relaxing. I am very mad at myself for doing that. I should have been watching out for Taylor more. I know you can't dig a hole in the mountain and hole up for 2 years. It is not possible. But we shouldn't have relaxed. Maybe in the end you can't prevent it, but we should have been more restrictive with our choices.
Here we are again in the hospital with our poor little girl hooked up to all sort of crap. And here we are again feeling completely powerless and just hoping beyond hope that she's going to be all right. We can't lose her! And we shouldn't even have that thought in our head. She's at the peak of RSV and she will get better. Yesterday I told Taylor that. I told her that the worse was behind her and that she was going to wake tomorrow and feel better. And there was a time this morning when she woke up hungy sleeping on me that I thought she looked better and a smiled and I told her see I told you... And now I am sitting here looking at her completely motionless hooked up to a ventilator. And I haven't a clue if really will be all right. It should be, but we are just in this rotten streak of bad luck that we haven't been able to climb out.
Here we are again with our lives disrupted and having to try to figure out how to be here for Taylor while at the same time being there for Tristan and Haylee. We are probably going to be here in the hospital for 2 more weeks at least. And Tristan and Haylee are once again confused and just wanting us all home. Leona (the kids pony) died in December. Sabrina, Tristan's dog, recently died (after a couple weeks of us really trying to help save her) and it really affected Tristan.. He's had a rough time with it and he's asked Michelle if Taylor is going to die like Sabrina did. Man... Its so freaking frustrating....
I'll post more on this later. Taylor's central line has failed and we are waiting on a PIC line to be placed. We need to try and get some sleep after that. Some good news is that so far it doesn't look like she will need the chest tubes. Anyway, more soon.
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1 comment:
We are praying for you princess! Auntie Tonya loves you so much!!!
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