Three Weeks in the Hospital

I'm tired. 

I have spent the last 2 days and nights in the hospital with J. We brought her in three weeks ago. She had been sick for the three weeks before that. We tried everything we could to avoid this visit, but one day we noticed her breathing was more laboured than usual, and decided to take her into emergency. Of course, she was admitted.

We are getting pretty good at knowing how sick she is and what signs to look for. We could have left her at home and done a few things to help stave off this visit but it would have meant a more serious illness later. 

I did not think this visit would be this long, so I am a bit frustrated. She was less sick than in all other previous visits, but yet this visit is still as long as her average visit. Those that care for her are all very nice and very professional, but after two days of living here I am sick of seeing and talking to them. Every twelve hours a new nurse and new RT come on shift and I have to answer the same questions about her. It's important to be here to answer those questions and I think it improves her care, but it gets boring explaining the same things over and over. 

I think I know how a tour guide feels.

Even Jesus Had His Haters

By following back a traffic source, I came across this gem of a site. It seems users post the most awful link of the day, and someone came across my little piece of the net and nominated me. It was three years ago, so I guess I did not win, as I failed to receive my notification in the mail or cash prize. Here is how my nominator described this site:

http://www.myleftwinggirlfriend.blogspot.com/

I went looking for the left-wing analogue of http://myrightwingdad.blogspot.com/. I did not find that. (I suppose it may have been that at one time.) There is nothing here about politics, just one stay-at-home dad's self-pity and little-varnished desire to kill his disabled daughter.

Ouch.

J is Home

No problems at the hospital. She was good all night and she is now home with us and resting on the couch and eating her lunch. It's good to have the family where they are supposed to be.

We are going out to eat tonight to celebrate.

Home from the Hospital?

I am about to go to the hospital to see if J is ready to go home. 

She was off her CPAP/BIPAP all day yesterday and last night. If she did well, they will discuss it at rounds and send her home right after. I am very confident she will be coming home today as they were sending signs. Yesterday, when she was off the CPAP machine, they sent it out to be cleaned. That is not something you do if you expect the patient has a chance of needing it again. (Keeping things clean is especially important in J's case, as she is positive for MRSA, which is a superbug, resistant to many drugs. Her room has to be sterilized before someone else can use it. Being positive is not a big deal, apparently half of everyone has this bug on their body, but they need to be careful at the hospital, as they are trying to control it and minimise its spread.)

Fingers crossed.

Hospital Update

J is doing well. She is still on Bipap, but they are trialing her off it 2-3 hours at a time, three times per day. They increased the hours today, so it looks like she might get out of there soon.

I really miss saying goodnight and putting her down to bed. I am hoping they will move her off of the PICU to the normal floor, so that I can stay overnight.

Back in the Hospital

J has been in the hospital for the past week. 

It is not as bad as last time, but he left lung is collapsed and she had a lot of mucus in that lung. She has not been intubated, so that is good and means that she may be out sooner. She has shown some improvement in the last few days, and, in my view, she seems like her old self. However, that lung needs to inflate, and the going seems to be very slow. 

Not much we can do but wait for her to get better. I had hoped that it would only be a week, but that is not going to happen. I think 1-2 weeks more.

The Twins - Thoughts From When They Were One Year Old

This was originally written in December of  2007. I could not post it at the time, but I think I am able to now.
 ***
Robert Latimer is back in the news. He is up for day parole. I was not aware he was still in prison. He has served 15 years of his life sentence.

I lack detailed knowledge about his daughter's medical situation, but there are some parallels to J's, at least in the effects.

Although barely one year old, our doctors have been mentioning about her hip. Her lack of control over her muscles cause them to contract involuntarily and are causing a hip to pull out of alignment. It may require surgery or a brace, or something.

When we go out, I am constantly asked about the girls. J is obviously smaller and seems like a newborn while K is obviously at least a year old. People wonder how they can be so close together in age. When I tell them they are twins, you can see they are even more confused. However, I don't normally offer an explanation unless asked.

J's head is about half the size of her sister and has not really grown since she was born. I have seen the MRI scan of her brain. White spots indicate tissue and black indicate no tissue/fluid. The black spots were larger than the white. Seeing those pictures immediately dashed any hopes I might have had for her to have anything close to a normal life. She has somewhere between 25-30% the higher brain mass of a normal child. How can therapy work with something that is not there? I don't expect she will progress beyond the mental age of a 1-3 month old baby. K is growing up fast. Yesterday she walked unassisted for the first time. Yet every milestone that K passes reminds me of the one that J will never meet.

Right now is a bit of a false spring. We have an appointment in a few weeks and they will be looking at her hip and the curve in her spine. I can now pretend that I have two daughters, one that is over a year old and another who is just born. However, we will soon have to face J's dislocating hip and severely curved spine. I expect that life will increasingly become more painful for her, require more invasive procedures, and require more hard decisions from her parents.

I can see ourselves in a future situation similar to the one that the Latimer family faced fifteen years ago.

It is true what they say about judging a man before you walk in his shoes. Although we have no idea how long J will survive, I cannot fathom life without her. As I write this, she sleeps quietly in the living room, finally having worn herself out during tummy time. I can think of nothing more beautiful than her sleeping face.

You really do not understand love until you experience the love you have for your own children.

A Tough Few Days

It has been a tough few days.


Friday I took K to the hospital to visit J. As we finished our visit and stepped out of the room I said to K, "I am just going to talk to the nurse, I will be right back." I assumed that she would wait right there for me. I went about 15 feet down the hall and spoke to our nurse about J. I was probably gone for maybe a minute. K should have been able to hear my voice the entire time. When I get back she is not there. I call her name. No answer. Where did she go? Where could she have gone in such a short time? I call all around the ward, nothing. A woman sees me calling and offers to help. She leaves the ward to check in the main hall. I think "There is no way she could be out there. She cannot reach or even open that heavy door, plus why would she leave when she knew where I was and could hear me talking to the nurse?" I forget that five year olds do not use logic. Another minute of calling/looking around the ward convinces me she must be in the hall. There are some people sitting right outside the ward door. They confirm that a little blond haired girl in a light blue coat went by them a few minutes ago. I find her crying with the woman who offered to help look for her about 200 meters down the hall. How did she get so far so fast and why? I want to beat her with a stick, but she is so upset that I can only console her. She says she thought I left without her. 


To add insult, I cannot find the car in the parking lot. I think people who cannot rere they parked are embarrassingly dumb. Today, I is one. I have been to this hospital so many times that the days are merging into one big haze. I walk around the parking lot on multiple levels, dragging a 5 year old by the hand looking for the car. Checking all the spots we have parked in the last 40 days. I start to think the car must have been stolen. I find the car, right where I left it.


Saturday, the Wife goes to visit J. As she discusses with the staff the next steps to get her off the breathing machine, they laugh when she talks about the process that I had understood we would follow on Friday. The hospital is a big bureaucracy. Sometimes the hands do not talk to each other. The Wife is upset. I will have to go in on Sunday to straighten it out.

The Household is Down

A bad last 2 days at the MLWGF household. 


The Wife is sick, some sort of stomach bug (throwing up). K was sick this morning, and I don't feel 100% (but I am still able to function). And J is still in the hospital (but doing well). 


I have not been able to visit, as I am taking care of the ones at home. I guess it is lucky that she is still in the hospital, as she might catch what we have.

Hospital Update #2

On Saturday J was moved from the intensive care unit to the normal ward. This is a positive step and I think she will be coming home soon.

The next step is to slowly reduce the amount of pressure the machine is putting out and see if her lungs can handle it. They will also try removing the breathing support for a short time, slowing increasing the amount of time as she shows she can handle it.

I am very positive about her recovery. She looks very strong. I think she will do well at each step and she is stronger and better than the doctor's think. I have been saying this for some time and have yet to be proven wrong.

I hope to have her home by Thursday.

Hosptial Update

J is doing well.


The breathing tube came out a few days ago and a bunch more lines came out yesterday. Right now she only has her feeding attached (which she would have at home anyway) and a breathing mask which forces air into her lungs to keep them inflated (called bipap (sp?))


I am not sure she even needs that. She looks back to her normal self. In fact, she has for at least the last five days. They are still very cautious and are saying that it will probably be another 7-10 days. That seems way too long to me. I have already put them on notice that I think she is good now. I will give them over the weekend to see how she does and then really start to push it.

Three Steps Forward, Two Steps Back

J has been in the hospital for over a week now.

Overall, she is doing much better. She is off the morphine, the blood pressure drugs and her 10 day antibiotic series ends tomorrow.

She is still has the breathing tube in. They hoped to remove it as early as last Wednesday, but she is not ready. The way they do it is to slowly lower the amount of pressure it is putting into her lungs. As they lower the pressure at some point she has a bit of trouble breathing, forcing them to raise it up. However, each time the new standard seems to be lower, so we are making slow progress. The problem is her left lung. Due to her curved spine, her left lung is squished in her body and this is where the pneumonia always starts. Every day they seem hopeful that they might be able to remove the tube in 2 days, but every night she seems to have trouble with the lower level of pressure, forcing them to raise it again. But we are getting closer. The pressure level is a lot lower then when she first came in.

I am hopeful that it may be removed soon, but I have learned to take their predictions with a grain of salt.

As of Friday, they have confirmed that she has another bug, this one quite nasty and tough. She may have caught it in the hospital. Fortunately, it has not advanced far (not like the last one), so it may not take as long to kill. They recently upped the dosage of the antibiotic, so that seems a bit of a concern to me.

More updates as they come.

Back to the Hospital

J is in the Pediatric Intensive Care Unit of the Stollery.

We had to call an Ambulance for her last night around supper time.

She has been sick for the last few days. She is at high risk for pneumonia. Because she doesn't move much a cold can quickly become pneumonia. Most children in her situation get pneumonia and die, eventually. I expect that one of these times, she will not be able to recover.

She seemd to be ok on Friday. We have a caregiver come in once a week, on Friday. She had a daughter in J's situation, so when she is sick I always get her as a second opinion. We were both concerned, but she did some physical therapy we do in these situations and she seemed better throughout the day.

Several time I have taken J in to the doctor concerned that she might have pneumonia, only to have her be ok. Other times we waited too long and had to go to the hospital. This was one of the latter times. Yesterday she was coughing a bit and sleeping more than usual but I thought this just might be due to the cold and her body trying to get over it. I checked her again later and she was very pale. I picked up her arms and they dropped to her sides like a dead fish. Her breathing was very shallow. I knew this was not normal and more than just "cold" sick.

They sent us the paramedics and had to send the ambulance from Tofield as all the others were on calls. After putting in a breathing tube, we took the ride to the Stollery, siren screaming, the full meal deal. Thanks to everyone on Whyte Ave who moved quickly out of our way.

She seemed to be stable throughout the ride but as we arrived at the hospital, her heart rate dropped dangerously. As we started moving through the emergency ward, the paramedic monitoring her vitals announces "Heart rate dropping, 50. We have to move, now." Since her heart rate was around 120 at home when they were working on her, that is quite low. We start running through the ward with him calling out progressively lower numbers. "Forty-five. Forty. Now thirty-five. Thirty." I thought her heart was going to stop right there. They got her in and started working on her.

I have been the "Concered Parent" a number of times now, and I always find it interesting how the medical people deal with me. Not that they don't like the family/parents, but you know that parents can be add complications to their job. They are doing things that may not look nice to your child and you can see how a hysterical parent can be distracting. I find it interesting how they offer to get you to sit down (always in a corner where it is harder to see), and ask you all this background information such as name, date of birth, Alberta Health Card number (J spent a month in this hospital when she was born, what with computers I am sure they have all this stuff). The one thing they do ask which I like to answer is about her condition, is she usually this pale, what other hospital stays, etc. This information is useful, might help them and it does serve to distract me.

They got her stabilized and up to the PICU. The wife and K came to pick me up and we left at about 11 pm last night. I am about to leave to spend some time with her. We called this morning and she is stable although the nurse told me that her heart rate is down a bit. They think this is due to all the drugs they have running through her system. They are taking her off some of these slowly, so things should go up.

Thanks to all the doctors, nurses and EMT's who helped my daughter last night.

Not A Good Dad

I don't like the kind of father I am turning out to be.

K asks a lot of questions, makes a lot of demands and statements, as any four year old will do. I seem to get exasperated with her very easily. When I am doing something I tend to focus on it to the exclusion of everything else and any disruption or interruption is unwelcome. It forces me to change my focus. It is never a problem with adults, but K will fire off a constant stream of statements, usually when I am having difficulty dealing with her sister. I cannot keep the exasperation out of my voice when I answer " Yes, K".

I find that adults tends to think kids understand less than they do. K is smart, I think she already knows that her dad's answer really means that he does not want to talk to her right now. That is not how I want my relationship with my daughter to be.

J is sick, she has a viral infection. Infections and colds are dangerous for her. Because she cannot move around, the usual was of clearing ones lungs are difficult. Most children in her situation die of pneumonia or something related to it.

When she is sick I get worried and stressed. Last night I was holding her for 30 minutes while her body spasmed with coughing, as we tried to get the stuff out of her lungs. During these times, my worry is at its peak, as I deal with the feelings of helplessness, guilt for not doing enough and the what ifs. Of course, it is during this time that K will come up to me and demand juice or tell me that Santa's elves are very talented. Wrapped up in my own worry and doubt, I cannot keep the exasperation out of my voice.

I am pushing her away with my tone. Someday soon she will realize it, if she has not already.

How can I change these feelings? Will I lose both of my children, one to early death, the other to her father's rudeness?