Friday/ Saturday
Unit 1 and PICU
Weight: not able to get
Nurses: Layne, Francis
Support: RT, STEP
Moving Day.
Dad called early Friday morning to let me know things were not going well at all with your breathing.
They had to bring the Respiratory Team (RT) in to help suction out your mucus that is pooling at the top of your airway. It is very thick, you refuse to cough it up and as a result your oxygen saturation levels keep dropping. STEP (forget what is stands for, lol, but came down to assess you too and support the nurses to help stabilize a patient before having to go to PICU). Right now they decided to keep you in Unit 1 and try to help you with deep suction from the RT.
I came into the room on Friday morning. What I thought was hard yesterday was nothing compared to today. You have to sit straight up in your bed. You have an oxygen mask on, over your NG tube, your lips and nose are bleeding and your eyes are swollen. Your poor body is struggling to breathe. You are so tired, but you refuse to sleep.
During the afternoon, you manage to sleep a little bit and dad can go over to RMH to get some much needed rest. When you woke up your vitals were not very good. You had a low BP, a high HR, a fever and your blood oxygen levels were low again. We had to increase the oxygen in your mask. On Unit 1 their nose prongs, used for oxygen, only go up to a level 4 and currently you need a level 8 and even up to a level 10 if we need to take the mask off for a few seconds and then have to put it back on. To complicate things, you need a platelet transfusion and the nurses want to hold of on the deep suction etc. to make sure if you start bleeding you can stop. After the transfusion, the RT team comes down twice and gives you deep suction through your nose, this seems to help for a short time. The STEP team is called again and they stay to monitor you. They give you boules of saline to try drive up your BP, but that does not seem to help, they are now looking at other options such as meds. To add to your frustration you have to go to the washroom, but we can't get out of the bed due to the oxygen mask. You are mad that you have to have a diaper, you don't want to be a baby. I spend the afternoon holding the mask up because you just rip it off and hate having it touch your face. They order a chest x-ray and are able to confirm that your lungs are all clear and the congestion is just in the upper airway. You dad comes back and jumps in helping with your mask and trying to get you comfortable.
Well, our nurse, Layne, from Unit 1 has now moved into your room. We have RT, STEP and 3 Oncologists in our room. They all decide you need to move to the Pediatric Intensive Care Unit (PICU). I am not too sure what to think about this. I am glad you are going to receive more support there, but we like our Unit 1 nurses and doctors. Now, the Oncologists will collaborate with the PICU doctors during rounds, etc. I hope that you don't need the support in PICU long and we can go back to Unit 1 soon.
Your room in PICU is not like Unit 1. We have to leave all of our stuff in Unit 1, because there is no room here for personal belongings. There is a pull out cot thing for your dad to sleep on, but it is not comfortable at all and really low to the ground. They decide to order another chest x-ray to see if anything changed. When the results come back it shows that your lungs are clear still. I go back to RMH as it has been a long day for me and I need to take care of myself. It is about 9:00 pm when I leave and they have you all moved in. Again, it is hard to leave, especially knowing the pain you are in and how sleep deprived your dad is.
Saturday
In the morning I return to PICU to see you sitting up trying to rip off your nose prongs off. Your dad has not slept and is frustrated due to the lack of communication. On Unit 1, we are always included in decisions and we are told what your levels are, what meds you are receiving, etc. We are very much involved. In PICU, they have not told us anything, they are good at taking care of the patients and you are getting good care. The thing is your dad and I are just spoiled by always being kept up to date. Finally, Dr. Anderson and Dr. Ali (Oncologists) come by and give us an update. We all agree we have achieved the goal of controlling your BP and HR so we hope to get released back to Unit 1. Both doctors are sure to make sure we understand that your fever is still persistent so they are giving you antibiotics and pain is likely to get worse before it gets better so we will remain in hospital for morphine as well. In addition, they are not sure what your infection is, but they try different antibiotics to see if they can get the infection before they need more x-rays, CT scans, etc.
Dr. Ali informed us your white blood count is 0.0. This means you can only go up from here. Dr. Ali also said that we could have a few more days of this and this is the greatest time for infection. I hope your counts start to rise.
You refuse to sleep. You just want to sit up. You rub your eyes because you are so tired and then you hit the nose prongs and then you try ripping them out again. So frustrating!!! You need to sleep, but fight it with everything you got.
Uncle Dustin and Auntie Tannis are coming up this morning to help me. This way your dad can maybe go to the RMH to get some much needed sleep. I am so thankful that they are coming up. Sometimes you don't realize you need help, but then when you are getting it, it relives some of the stress.
I hope I got everything in this post. The last day was so busy, crazy and stressful. Today has started the same. My only hope is that we can get back to Unit 1 so we can get back to our new normal. You are finally "sleeping" at 11:30 am. You keep waking up and rubbing your nose and then you go back to sleep. When you are sleeping, you sing and play with your hands. You are never still.
Time to rest, now that you are dozing. I just wanted to keep everyone posted. We are all praying that your body can heal quickly.
Love you so much buddy,
Mom
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