Hurdles of the PICU

I have been posting updates on Elva about her life in the ICU on facebook but I know not all of my family reads facebook so I will put them on here as well.

May 11

Everyone, our beautiful little Elva is really sick. She is at the children's in the icu as of this afternoon with a serious respiratory infection and is intubated. Please keep her in your prayers.

May 11

Thank you for your thoughts and prayers everyone. It means so much to us. They are taking good care of her here. She needs help with breathing and so is on a ventilator and is sedated. Not sure what infection she has but they are doing lots of tests. She is pretty sick. Oh, and happy mothers day. I love being a mom! even with the heartache it can sometimes bring I would not change being caeleb and elvas mom for anything.

May 11

I am grateful for my mom today and everday for the love and support she gives me. I love her so much.

May 12

A tough day. Elva is septic and it is hard to keep her oxygen up right now because of all the junk in her lungs. I am scared but we continue with prayer and faith and a feeling of peace

Update: A scary day but Elva seems stable right now. She crashed around 3:00 and her oxygen saturations were very low down to 3%. They have had to paralyze her and sedate her completely so that the ventilator is doing all the breathing work. It is so sad seeing my little girl covered in tubes and lines but it is good that she can rest her lung muscles for a while. Hopefully her oxygen stays stable and her temperature and heart rate come down and she has a good night. We feel blessed to live here in Calgary with the great care at the childrens hospital. I will keep you updated. Thanks again for your prayers.

May 13

Another exhausting day full of little ups and downs but no changes for the better. I feel emotionally and physically drained. But I know I am not the only one who has felt this way. Please virus, go away and leave my little girl alone. Elva, I love you. be strong and ride this thing out.

May 13

I can choose to be optimistic. Tonight is going to be a good night

May 14

Elva Update. We are grateful for everyone's fasting and prayers today. Your fasting and prayers have held us up with feelings of peace and comfort. Today has been very hard. She had a good night last night but her oxygen has dropped to where she needs a special ventilator called an ossilator which blasts constant air into her lungs to keep the alveoli open. She is recieving blood right now as her hemoglobin is a bit low and we hope it will help with her oxygen levels. We are exhausted, scared, discouraged at times. But, we have faith and we continue to be optimistic. We love you so much Elva and we are fighting with you.

May 15

Elva is liking the ossilator and blood transfusion which is great since there are not many options after that. We are so grateful for that she is holding steady. Let's keep this optimistic outlook. Oh, and the fire alarm is going off now.

May 15

Well, they say Elva is the sickest kid in the PICU - the acutely sickest kid in Calgary I guess. I guess she likes the attention. That is where we are at. Afternoon and evenings seem to be extra bad. I was feeling so optimistic this morning and I am trying to hold on to that. I feel discouraged now and the tears are coming down hard but I know I was blessed to feel such peace and optimism this morning. It could be a lot worse too. I know that. I am just opening up fully right now to you. I know I am not alone. Others have been here before. Others have gone through so much worse. But it is a nightmare rollercoaster ride. Anyways, sorry for my negativity. Time to be positive.

May 16

Update: The night was stable as they paralyzed elva completely and hardly touched her so her oxygen levels are a bit better. They don't want to paralyze her for too long as that can cause other future problems but when they say that, I think, future problems are okay, I just want a future with my little girl. It seems that everytime they suction her or move her, her oxygen levels go down, they ha...ve to turn the oxygen up and it she takes forever to recover. We slept pretty good last night except that I probably have one of the viruses Elva has and I have been coughing so much. We continue this rollercoaster ride. The staff here is so great and they work so hard. I have that fear that they will give up on her, but they won't. They are fighting with elva along with is. Keep fighting our little jean bean. We love you.

May 16

I want to thank everyone for their support. The meals have been delicious, the texts, and phone calls and messages have been cherished.

May 16

Also, I want to mention that even though I see the worried and puzzled looks on the faces of the staff here in the PICU, they have seen this before many times and children are strong and they have seen so many pull through. They remain positive and supportive. I can be a pessimist and sometimes the negative thoughts keep rolling through my head when i see Elva so sick but, I need to be positive. ELVA CAN AND WILL GET THROUGH THIS.

May 16

Elva is doing great tonight. Her oxygen saturations are way up and all her other vital signs look great! Hopefully they can start weaning down the settings of the oscillator soon. I am sure there will be ups and downs from here but I feel so optimistic right now that things are looking bright.

May 17

Elva is having a hard time recovering from this last suction but she is slowly getting back to where she should be I think. It still seems to be a two step forward, one step back. One step forward, two steps back type of situation. I cant describe the horrible feeling it is when her oxygen saturations start dropping after suctioning and you don't know what is going to happen and you can't do anyth...ing about it. She is on the most oxygen she can be on. They may make some other changes today that i am very nervous about. I hope she does well with them. I am trying to be positive. I feel like I am taking you all on this rollercoaster ride with us and that can be hard on you too so i will let you know that we are continuing the up and downs, we do not know what the outcome will be ( they don't tell us a prognosis but say it can go either way) but we have faith and hope that Elva can and will get better if it is the lord's will (that last part is so incredibly hard to say). We love you Elva. Get well! We know you can!

May 17

Okay, last post for a little while. I want to thank those out their who have been through similar situations and have had success.
Thank you for visiting us Debbie (your story with Ashlyn is incredible and inspiring) and thanks for the message Amanda. Elva will get through this too.

May 17

So the change I mentioned that the ICU team was going to do was to put Elva back on the Ventilator. The reason they decided to do this was because she was not tolerating the oscillator well after the earlier today suctioning. The doctor would have to bag her to get her oxygen levels up and then they would hook her up to the oscillator and we would all watch her oxygen saturation number go down and... down and down. Then he would bag her again and hook her up and she would do the same. Chris and I were tucked into the corner of the room squeezing each others hands, closing our eyes and silently praying. It was a risky move but they thought the ventilator may work better for her now to keep her oxygen where it needed to be since they can get more secretions up when on the ventilator. They switched her over this afternoon. At first her oxygen went down and down and then they gave her some nitrous oxide to help blood flow to her lungs. We (the ICU team and us parents) held our breaths and waited. The numbers started to climb and have been stable ever since. So, Elva is back on the Ventilator!! I would say this is a step in the right direction. Now Elva, please behave with the next suctioning

May 18

Elva update. Elva had a great night last night. They barely touched her and kept her sedated and paralyzed and her vital signs looked great. We love the night Nurse Val who has worked in the PICU for about 30 years and she recognized my cousin who's little girl was in the ICU 12 years ago. That is impressive! She is so optimistic and when I went to visit Elva at my routine 4:00 am visit, we had a ...good talk. I got to help bath, change bed sheets and turn Elva this morning. She is extremely sensitive to movement and suctioning and today her oxygen saturations dropped when she was moved and have not quite recovered to where they were but we are getting used to the ups and downs. I think some of the nurses and respiratory therapists are a little afraid of Elva (no offense Elva), because of her extreme sensitivity and long recovery time. I got a little chuckle out of that. I do know that Elva has a mind of her own and wants to go at her own pace. Perhaps these infections have minds of their own too. But we are holding in there and I think she is improving slowly.

May 19

Elva update. Elva is having a very good day. She is tolerating suctioning well and her oxygenation is great today. Her heart rate is quite low but they are attributing that to the sedation medications she is on so they are weaning her slowly from those. So, she is starting to open up her eyes and move a little. They want to be really slow with weaning her off the ventilator as she has shown them that she is a tricky little girl. We are so grateful for the thoughts, prayers and fasting of friends and family and the friends of friends and family. We have seen miracles and have felt so much peace and strength this last week.

May 20

Elva update: Elva is doing really good except that she started vomiting
an hour ago. Hopefully it is just some air in her stomach causing the discomfort and not the stomach flu. Maybe it is withdrawl from some of the medications they have been weaning. They gave her something for nausea so that should settle her. Her oxygen and heartrate are great so maybe she can have the breathing tube out tommorrow. Thanks again for your continued support.

May 21

Elva update. Another great day. Tomorrow should be the day to get her breathing tube out. Elva is waking up a little but is still very sleepy. She is going through narcotic withdraw which is normal as she has been on high concentrations of pain and sedation medications. I am excited to hold and snuggle her again.

May 22

Elva update: breathing tube is out and we got an afternoon full of snuggles and a few little smiles in there too. She is so weak and teathered down by so many cords still but she tried to pick up the call bell pretending it was a phone  and she said, "hi" in her small raspy tube affected voice (she likes to say hi into the phone or anything that can appear like a phone). That is my Elva!

May 26

Elva update: Sorry it has taken me forever to post this but I have been without a computer and phone for a few days. Elva has been out of the ICU for a few days now and can go home tomorrow! She is a bit weak and going through Narcotic withdraw symptoms but she is the Elva we know and loves to play and smile. We don't know how to express our gratitude for the prayers and fasting of family and frie...nds. We feel like that made all the difference in the world for Elva (she turned the corner last week and is healing fast) and it gave us peace and comfort when we were not sure what was going to happen. We feel so blessed that Elva is recovering well. Now I wish every sick kid in this hospital could be as lucky as us and could go home tomorrow

Rollercoaster ride of the PICU

Our beautiful little girl is in the ICU at the Calgary children's hospital since Sunday May 1oth - almost 6 whole days. She has been diagnosed with RSV bronchiolitis, another virus and a bacterial pneumonia. She is one sick little girl. She is on an oscillator and her oxygen saturations keep dropping. Her heart rate has been affected a bit as well. This week has been hell (and I never use that word). But it really has. I understand that things can be a lot worse and that people have been through so much worse in life, but this tops the challenges I have had in life. Enough of that. We keep positive.

Life in the ICU can be like riding a rollercoaster. Up and down, up and down. I know many people have gone through this experience. It isn't fun. Our emotions have been stretched in all directions. I feel good about how things are going one minute and then Elva's oxygen rate will drop or her heart rate will drop and we all (Nurses, Respiratory therapists, doctors too), hold our breaths and wait for things to recover and if they don't, the next action takes place. It is exhausting to say the least. As we get to know the staff here, we love them more and more. They are incredible people with a lot of knowledge, skill, optimism and you just know that they care about your individual situation even when they see so much sickness and trauma day to day.

We have been given a little room to the side of the PICU with 2 beds and a bathroom. We feel so blessed to have this room so that we can go see Elva whenever we want and we have a place to hideaway from the world when we need a break from the stress of watching Elva's numbers on the screen go up and down.

We feel blessed to live in Canada and to not have the worry of cost added onto the stress of the situation.

I have read blogs in the past of people who have gone through similar or worse situations with loved ones. I have a good imagination and sometimes I try to imagine what these people must feel and that can bring worry and anguish. I guess sometimes in life we have to experience it for ourselves. Going through hard experiences really does help you appreciate the good in life instead of just wanting more and more. And I don't really understand it right now but these experiences can make life have more meaning. Life is really full of meaning and sometimes we lose perspective in that sense.

It is tough seeing your little girl stuck under so many tubes, sedated and paralyzed. I sit by her and hold her little hand, hoping that my presence will help her in some way. She is so precious to me and it hurts to see her hurt. I love my little Elva Jean Bean so much and I want her to get better.