Archive for September, 2011

Sleep medicine

Before Mummy came to the hospital, she would take a nightly sleeping pill to help her sleep, otherwise she’d be up and everyone else would be up too.

When we got to the hospital, we made it clear that she needs this specific medicine called Stresnil every night otherwise sleep would be impossible.

Since the medicine is from India and it is a combination of a few medications combined, the hospital didn’t have it. So Papa had to give the hospital some from his own stash, and they sent it to the lab for testing. The Dr. approved it, and in the ICU they gave it to her every night (crushed and fed with applesauce).

When they moved her to a normal room night before last, it was not given to her (I didn’t know that at the time). No wonder her first night out of ICU was complete hell for both her and me. She would wake up every 2 hours between 1 am and 6 am, and then after that she didn’t sleep, for the rest of my shift.

Last night I talked to the nurse about giving her a sleeping pill, since Mummy was angry, freaking out, and not listening. I asked her if it was given to her already and she said no it wasn’t.

Um…hello?! She NEEDS this medication once, sometimes twice, sometimes thrice a day. What do you mean you haven’t given it to her??

The RN was clueless. After questioning her and trying to figure out the stresnil problem, she finally found out that her sleep medication was on the “in case of need” list, not routine daily medicine list. Are you kidding?? It’s as if these people don’t understand her disease at all. I told the nurse that Mummy’s Stresnil needs to be added to her routine medicines, so we’ll get that done today.

After giving Mummy her sleep meds, it took an hour and a half for it to kick in. After that it was smooth sailing. She slept from midnight to 8 am, waking up briefly only twice. She went to sleep after I told her that she shouldn’t talk, she should sleep.

Yesterday for some reason her catheter was ordered to be taken out. Without the catheter, she was holding in her urine and wouldn’t do it in the diaper. She was holding urine in her haider and she was just in a lot of pain because she didn’t know how to urinate. We asked that the Dr. order it back in, and as soon as it was placed in, it filled up right away. Half a liter of urine that she was holding! You can imagine how much pain she was in.

The doctor said a few more days in the hospital, so we’re not sure when she’ll be out. She wants to leave ASAP, she’s fed up with the hospital. We’re trying to calm her down and we’re hoping these few days her health really does improve.

Everyone at home has major bags under their eyes. Even though there’s a lot of us and we do take shifts, this whole process is very draining on everyone. We’re all sleep deprived and caffeine is very much a necessary part of our food chain. But we’re pulling through. Our family is very close knit and taking shifts and helping each other out when we can reduces the stress level immensely.

Keep us in your duas!

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New room

Mummy got moved out of the ICU. The move was slightly traumatic for mummy because she hates being moved around and put in a new environment. She had just gotten used to the ICU.

Medicine time is every 4 hours or so, and it is not easy. Just now, she forgot how to swallow. She just held it in her mouth for a long time, and then when we asked her a question thinking it had gone in, half of it just fell out. I kept telling her to swallow it, she kept asking me,”How? Do it for me!” More medicine came out of her mouth. I’m not even sure how much of it went down.

Since Mummy has severe diarrhea, she has no control over it. They come and clean her every 2 hours. When her sleep is interrupted by painful turns to her side, she gets very agitated and anxious.

She keeps asking when she’s going home. She says, “Ok, get up, let’s go, let’s leave, we’re leaving.” I have to gently explain that we can’t do that, but it doesn’t work like that.

She’s still pretty weak. She needs to recover for a bit more before we can go home.

It’s 6:30 am and she fell asleep again, after talking about how quickly we have to go home. She probably just got tired.

Not sure how much longer she will stay in the hospital, or how her care will be more challenging after this….but that’s too much for my sleep-deprived brain to figure out right now. We’ll deal with all that when we have to. Right now, let’s focus on getting her healthy. The pieces will fall into place after that.

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3rd Day

Mom has been in the hospital since Monday noon almost, its her third day today. She is a bit stable now and the blood pressure is slowly creeping towards normalcy. This morning it was up to 110/56 which is much better than 70/40 when she was rushed to the emergency room. Numerous tests have been done during these three days and she is constantly on IV fluids to replenish her body. The IV also has something called “dopamine”, which helps in increasing her blood pressure. Since, yesterday they have allowed her to start eating from her mouth, though she is not fond of hospital food.  The ICU doctors have asked us to brig some food from home because she needs protein and other nutrients, which will start today at lunch.

She has to be fed every two hours. It’s an awkward ( to say the least) feeling to see mom in this state with tubes sticking out of her hands, oxygen in her nose, catheter for urination in place, and machines displaying variety of numbers monitoring her. All she has become is a number. Her situation is based on those numbers on the screens, the numbers dictate when she goes home, they dictate how long she stays in ICU or what medicine to take.

Her neurologist visited yesterday to check on her and realized that her left side is weaker than the right side and her speech is little impaired.. We already know from the MRI done last week that there was a stroke sometime in the past but he wanted to make sure there is no new stroke. He ordered CAT scan which was done yesterday and we are awaiting the results. Today, we got the news that there are traces of blood in her stool. I am not sure how they are going to tackle that at this point but yesterday the doctor wanted our consent for colonoscopy and endoscopy.

These tests are not pleasant but mummy seems to be in good spirits and seems to be quite fond of the nurses helping her. The community support we have from mine and Mariam’s friends is huge and extremely helpful. At home, its weird for us without mom, especially for Papa whose life for last few years have revolved around taking care of mom. I can see him being down but at the same time as bad as it maybe , this is a small break for him. It’s a break he doesn’t want..

Thank you all for your kind words, help, support and prayers… may you never have to deal wit this disease ever, not even remotely.

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Updates

Assalamu alaikum (peace be into you)

Since we’ve had a lot of people asking about how her health is (which we appreciate immensely, jazakum Allahu khayran), it will be easier if we update how she’s doing on the blog than respond individually to each call and text.

Her bp alhamdulilah is now 120/62, which is great! It’s been stable since last night. Her diarrhea is still there. She tested positive for occult (not sure about the spelling) which means blood in stool (sorry to get graphic) which could indicate colitis (inflamed bowel). She will probably need to get a colonoscopy and endoscopy.

The CAT scan showed no new strokes, so the main problem at this point is gastro-intestinal. Raised temperature is still there. Dr. said hemoglobin is raised but still low, I.e. she’s anemic.

She is a little bit weak right now. Slightly agitated since she had to be force fed a nasty tasting medicine. She was extremely mad at the RN who gave it to her, and cussed her out in urdu.

Emotionally-speaking, Mummy’s mood varies. When her favorite nurse comes for the night shift, Mummy is in an excited mood. She asks about her all day, and when she comes, Mummy feels relieved. She sometimes says that she would like to leave the hospital, and just go home already.

Sometimes she’s happy, sometimes she’s sad, sometimes she’s in a good mood and calm, and sometimes not. Sometimes she sleeps like a baby, sometimes she can’t sleep at all.

There’s no pattern, it just depends on who’s there, and who’s not, what she eats and what she doesn’t.

Yesterday was the first day of solids. The only thing she was interested in being fed was the chocolate cake. This morning for breakfast, the nurse had to force her to eat. She needs protein, iron, she needs her nutrients. She was pretty emotionally distraught after that, we had to calm her down.

We’re not sure how long she’ll be in the ICU for, she still has tests to get done, vitamin and mineral levels need to go up, and more importantly, the diarrhea needs to stop.

We appreciate the support that we have received. Please continue to make dua for her.

Jazakum Allahu khayran!

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Long night ahead

Mummy’s not in the least bit sleepy. Trust me, we’ve tried. Lullabies, head massages, medicine, foot rubs…nothing.

Anis has gone to pick Bhaiya up. Mummy isn’t sleeping nor letting either of us close our eyes. Papa is exhausted and so is Anis. And I’m not gonna lie, I can’t feel my lower back anymore.

Tomorrow Gurhia baji (Anis’s sister) is coming with the kids. Two hours after she lands, Anis’s uncle lands. As hectic as the pick-up/drop might be, the thought of shifts and turns is helping take some weight off our shoulders.

Tonight is going to be rough. Tomorrow, probably the same. Caffeine is going to be our buddy the next few days, but we’ll work through it.

Mummy is WAY better now than she was this morning or last night. It was a close one. If we didn’t make the decision to call 911….I’m not sure what would have happened….

Her blood pressure is still an issue, but it’s climbing up at a snail-crawl pace. When we came, it was 70/40. It’s now fluctuating between 80/35 and 90/40.

Still got a ways to go, but we’ll get there, inshaa’Allah.

Duas, people!

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ICU

We waited a while for an ICU room. Mummy’s been fed with fluid only because she had become severely dehydrated. She now has slightly more energy, and the effect of not eating her calming medicines is now apparent. She is completely apprehensive, anxious, and worried.

The ICU nurses informed us that they would need us to sit in the waiting room while they get her assembled in her ICU room.

Papa and I are sitting in the waiting room, trying not to think about how much Mummy is freaking out without us right now. We tried explaining to the nurses that her anxiety levels were extremely high and it was important that at least one of us was present with her. To no avail.

Papa’s and my anxiety level is through the roof right now. The wait is just killing us. As soon as we are allowed in, it is going to be “calming Mummy down” mode. She will complain of pain everywhere, express her anger at being brought here, and ask us where random people in her family are and why they’re not here.

I just hope our minds are not getting away with us, and it turns out that she’s fine.

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ER

Moms blood pressure has been low since list night. This morning when we checked, it was 70 over 40. We called in paramedic and took her to the nearby hospital emergency room.
She is stable right now but her bp is still low. We are right now waiting on her bed in icu. Mom is up and talking. She is asking about Mariam a lot who is running some errands.  I asked her if she likes Mariam. The answer was yes, she is nice. I like her a lot. So I asked her if I should marry her. The answer was yes you should. Then she said isn’t she your sister? I said no Gurhia is my sister, mariam is my wife. I asked her who is Gurhia? She is my daughter, was the reply. I asked who is Asfu? Oh she is my daughter too.

She said then… How we have moved away..

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