My daughter got her new shunt today, the operation was a success but now we wait to see if the shunt will work in her body. Good sign though, she was still awake when the doctor came in her room several hours later, he said that is good she is still awake, her right eye is no longer slow like it was yesterday, both eyes the same. All little things, lets hope the changes will continue. She is still full of mucus though and has to be pumped 5 or 6 times a day.
That is certainly encouraging. Every little bit of progress is reason to celebrate.
I’m so glad to hear that you have renewed hope at last. Please look after yourself as well as your beautiful daughter, and please continue to post progress reports here.
Seenie from Moderator Support
New shunt on Tuesday fever and possible infection on Thursday, what is the problem. They are trying to find the cause of the fever. What next? Also breathing too fast and heart rate too fast? Spent all night with my daughter.
Everything has its consequences. My wife experienced those, too, and they seemed to us also to be alarming. Likely the doctors are reporting to you everything, the good and the bad. They are doing their best. Hope for the best, encourage your daughter, and pray for recovery. She can overcome this.
When my wife had a fever, they looked all over for the cause. Finally they concluded it was only a reaction to what was going on in the brain–the intrusion and the healing. It was. It was not an infection. Praying for you.
This morning thé doctor was more concerned with the water in both lungs and he took one half of a liter of water out and sent to lab. If lungs keep filling up they have To go back to the shunt.
My mom had fevers too and when they ruled out infection being the cause they said it can be “brain fever” basically meaning just from having the surgery. It’s very back and forth, good days and bad days, but you’re being very strong and doing everything you should be. What do you mean by if they can’t get the liquid out of her lungs they have to go back to the shunt?
I went home around 3pm today things have been so crazy that I just felt I had to be with my daughter to see what went on in a 24 hour period. Those nurses really do a great job and care about their patients. My daughter was in the care of 2 very dedicated nurses when things started going wrong for her. The main problem was her breathing too fast and the water accumulation in both lungs. The plan as I mentioned above was to remove the water and that was done. Today she repeatedly had to be suctioned because of the large amount of mucus that she is coughing up and this is another problem that she has to get rid of, it has nothing to do with the water on the lungs. The fever finally gave way today to normalcy, the results of the blood tests were all okay no virus, no bacteria no fungi etc and that is a good thing. However the breating too fast problem has to be fixed and again she was sent down for a ct scan to see if the shunt was working properly and all the results indicated that the shunt was working fine. The night nurse just told me that tomorrow she will tell the day nurse to tell the 6am neuro team that all the results came back positive and to try and find out what the next step will be because somehow Nicole’s lung tissue is not absorbing the water and that’s why she is making so much water? So I will let you know what they do in the next post. Thanks for listening and if anyone has had this problem let me know what the solution was. Also being with my daughter for 24 hours has made me strongly believe that she does hear me and sees me, she cannot respond well yet but I’m convinced that one of these days she will. She did not smile at me she pouted at me and that just about ripped my heart out to see.
There may be a possibility that the shunt is releasing the water on the brain to go to her lungs somehow but apparently this is not the case so I’m glad about that. I posted some news of the past 36 hours. The neuro surgeon was not surprised that my daughter was having issues, I find him a very very cold man. The team of doctors in NACU are a whole lot better, I have changed my mind now that I have seen them operate a bit more. There seems to be lots of political battles going on between the NACU and ICU, ICU is richer, bigger visitors loungs, free coffee, warm blankets, cool blankets for fevered patients etc…I had to sit in a really old wheel chair all night, in ICU they have big visitors lounge, quiet rooms, free tea and coffee and volunteers that answer the telephone and they really care about the families. NACU does not have the same ressources as ICU just saying people in NACU are just as sick I find as in ICU why is that I wonder.
Thanks for sharing your information. Hang in there. You are being the very important patient advocate and support!
Yes and I just got a call from the hospital, they want to remove something from her shunt that she just got put in on Tuesday. Apparently I was right when I said the water in her lungs comes from the shunt somehow because whatever procedure they are doing today right now is supposed to stop the water from flowing into her lungs. Of course I gave them my consent refusing this procedure could cause an infection in her brain?
I can’t believe it, I was told the shunt would release the water into her body via her stomach? Now I find that the neuro put it into her lungs? Is he crazy especially since she had bouts of pneumonia, and is always full of mucus, is he silently trying to kill my daughter to hide his mistakes, I hope I’m wrong. This is the 4th time that he operates on her, the first time was the clipping, she took forever to wake up from that one, then the shunt that did not work for her, now her 2nd shunt causing a problem in her lungs not to mention the 2 or 3 head drains that were inserted into her skull and the procedure yesterday to remove water in the lungs? How can any human being survive under all these conditions I will never understand, it must be the Higher Power up above and all the angels that are watching over her. They are supposed to call me back but I’m headed there right now to find out exactly what is going on. I am not a trouble maker, just a worried mom as you all know. You really have to be on top of them, I can’t imagine. You guessed it I’m on my way to the hospital, can’t wait to see my daughter.
Praying for you.
Thank you prayers are always a good thing! When I arrived at the hospital today my daughter still had the shunt in her but instead of draining the cerebral brain fluid into her body in her case the lungs, they had redirected it to an exterior bag outside her body because of an infection that she had in her lungs she was not absorbing the fluid? She is on antibiotics for the lung infection and they are giving her an iv for preventing an infection in her brain? It is all so complicated, I just sat down with her and we watched Victoria season one on a little tablet that I bring in all the time. She actually watches it and does not fall asleep which is great. She is however still breathing too fast at times and when I tell her to take a deep breath it seems to somehow calm her down and the numbers go back down from the 50’s to the 20’s (that is breaths per minute). I can’t wait for her to get some of her strength back, hopefully the water in the lungs will clear up and something will be done to get the spinal fluid back into her body, not the lungs area I hope and I will keep you updated on what the neuro team decide to do when the time comes.
I know this is excruciating for you both. Our thoughts are with you.
Well to top it all off, I’m stuck here at home with day 6 of the flu and last night when I called the hospital they told me she was back in ICU because of breathing problems! Now today they are talking about removing the shunt that they put in 9 days ago (Tuesday) and replace it with another exterior head drain until her brain infection gets better??? What brain infection this is the first that I had heard of it? I knew she had an infection in the lung caused by the shunt but did not know she had one in the head. She had water in the lung which they ran another procedure 2 days ago to remove for the second time. This nightmare does not seem to be going away anytime soon. Meanwhile I am feeling really sad because I can’t be there to prep her and talk to her, I asked the nurse to tell her that I called and that I love her and will be near her very soon. Don’t know how contagious I really am but know that I can’t take any chances in giving her another infection that’s for sure. I also got the news yesterday from my cousin that she has breast cancer this is just too much to bear she and my daughter are the same age and they used to be best friends. My grandson visits his mom and he told me that tonight she moved her eyebrows up and down moves her lips, this made him very happy, I have seen her do this and it does make you feel good to see tiny improvements. Tonight I asked the night nurse to look at her head and perhaps if she had the time to wash my daughter’s hair, it has not been done since the day she went in there. Nurse said she would if she could. Anyway that is what has happened since the last time I posted, daughter now back on ventilator, don’t understand why she can’t breathe on her own after 1 month of doing so well? Thank you all for caring! I sure am one worried mom!
Diane, we’d all be worried, in your position. I admire the way you are managing to carry on, and I hope your flu subsides soon.
Each day I think about you and Nicole, as I’m sure many people here do. You are an inspiration to us all.
Bug hugs for you
Seenie
Hi Diane,
My heart goes out to you, what an awful journey you and your daughter are having. I haven’t checked into the site for a while, and have just read your story. My husband’s rupture, repair, ventriculostomies and shunt were all done in Kingston. His MRSA lung infection, encephalitis, and other consequences happened there too, in 2015. All this is to say, there are others of us who have walked this dark road and can empathize with your anguish. From what you have written you are as on top of things as anyone could be and are being a strong advocate for your daughter. I hope your flu is soon better, there is nothing like actually being there.
Thanks Judy,
I went for a few hours today and was shocked at the changes I had found. She was very swollen all over, I asked the nurse about it and she said she was more swollen yesterday? I showed the nurse a picture of my 5 foot 9 daughter weighing 135 lbs and other nurses looked at it not believing it was the same person. I told the nurse to talk to the doctor about the swelling, I don’t like too much water retention. I went to her and started talking to her she opened her eyes and stared at me knowingly, I know she recognized me, it was a difficult moment for me because it had been days since I last saw her. I talked to her like I usually do and she was awake the whole time. About an hour after I got there they took her off the ventilator they said for about 4 hours they would let breathe on her own, she goes up and down on that one 12’s to 40’s (breaths per minute). I mostly held her hand and kept telling her that I loved her, that I couldn’t wait for the day she would say mom again if that’s possible, only time will tell. Then I left because I had some errands but told them I would be back tomorrow. How about your husband Judy how did he get through it all, is he okay? Thanks for caring!
Thanks, yes worried I sure am especially after my visit today, I wrote about it to Judy below. They had shaved half her hair off of her head, don’t know why they took so much off but I will ask tomorrow, it was really unnecessary. Also she was very swollen as she often gets but never as much as this time, They took her off the ventilator for 2 hours yesterday, and 4 hours today, last time she was breathing on her own for over 1 month until she started having infections, water on the lungs etc.
The one good thing I forgot to mention is that today if I touched her left hand it made her fingers move and her foot never saw her fingers move as much before also more facial expressions so to me that is all good. Tomorrow is another day, got to take it one day at a time.
She has a little radio but the nurses don’t always have it on, I have to keep reminding them to leave it on her pillow. Will keep you posted, keep those prayers coming!
Diane, you, Nicole and your family and her doctors are still in my prayers everyday.
You are such a good mom wanting her hair washed. She is so lucky to have you. I hope you have gotten some rest. I pray for Nicole to gain strength and recovery.
I only had my unruptured aneurysm coiled, but I wanted my mom to be there so badly. Sending you hugs.