Wednesday, September 30, 2009

Bad news

Yesterday we got the results of the MRI. Not good. Brooke has substained a significant brain injury. This is from the lack of oxygen from when she was in cardiac arrest, and her low oxygen levels on the flight up to Childrens Hospital that night. It is still to early to tell the extent of the damage, but the neurologist is very concerned. We might know more in a week, with another MRI, and even more in 2 weeks. Until then the Dr's are ramping up the seizure medicine to get those under control. She hasn't had one in about 16 hours, so maybe this trial medicine is working- who knows.

This is very devastating of course for us. Please forgive me if I do not update the blog everyday. I will do my best. This has been extremely hard news to swallow. I don't even feel like it is my life.

We can only pray for a miracle.

Tuesday, September 29, 2009

Still waiting

Tuesday Sept. 29th

Well we are just sitting her just waiting. Brooke had an MRI today, hopefully to give us some more answers on what is going on in her little head. The seizures are still happening, but they can't been seen just by looking at her. The way they are monitoring them is by having an EEG hooked up to her for a long period of time. She is being given a couple of different seizure medicines that are making her very sedated at the time. We are hoping that these will work, or get them under control.

We currently are just waiting to talk to the neurology team, about the results of the MRI. We have no idea of what the future will hold.

Monday, September 28, 2009

Still waiting

September 28, Monday

Yesterday Brooke was extubated around 5:00. She is still extubated as of now, but isn't breathing as well as we had hoped. She is on a nasal cannula with high flow, and getting breathing treatments given by a respiratory therapist. Her chest is still working hard to control the breathes. We think that she will be able to manage on her own, but only time will tell.

Beside that we are dealing with the possibly that Brooke might have sustained some neurological damage to her body. When she went into cardiac arrest, she was low on oxygen, and during the lifeflight she had trouble keeping her oxygen up. We know from the results of a CT Scan that she did not suffer a stroke, or bleeding in the head. She does suffer from some swelling of the brain. This is causing the body to respond the way that it is today. The dr's think that the brain is having some neurological storming going on, which means it is not telling the body the correct way to respond and heal itself. She also is having small seizures, which are trying to be controlled with medicine. We are waiting for this storm to pass, hopefully. We have no idea how her body will react now, that the sickness is leaving her body. We simply just have to wait it out, everyday and see how she does.

This is very hard, not knowing what the future brings. It is going to be a long road ahead for Brooke.

Sunday, September 27, 2009

Extubation Day

Sunday Sept. 27

Last night Brooke had her eyes open more. She was moving her arms and legs, when the nurses would reposition her. It would look like she would try to move her arm up towards her face. We can only assume she is trying to reach towards the tube in her nose(ventilator) to get it out.

This morning when we got to the hospital, she had an Elmo video on to entertain her. The nurse knew that Brooke likes Sesame Street and trash (I know weird obsession for the little girl) Brooke had been opening her eyes and responding alot more over the course of the night. So we hope that the video is providing alittle normalcy for her. Ironically I had just bought the same video for her birthday, and had it wrapped up in the car.

We arrived here in the morning just in time to hear the rounds with the Dr's. Overnight they had decreased alot of her meds. even more, and lower the levels on her ventilator. Todays plan is to do a test where they turn off the ventilator, but still leave it in on the lowest setting to test her ability to breathe on her own. As of right now at 12:00, she is doing great. So the team is planning on removing it around 3:00. It can't be soon enough, because poor Brooke is waking up and getting agitated that something is going on. They have to wait a required 6 hours from when they stopped the feds before they can remove it. So the count down is on.

Saturday, September 26, 2009

Mom and baby get discharged

Saturday Sept. 26th

Well the baby and I are getting discharged from the hospital today. We are not going very far though. I got to stay here 4 days from the section, and have used the last 2 days basically just for room and board. The nurses here have been great, and I feel like the whole hosiptal knows our story. They have let me take the baby to the nursery when she is sleeping, so I can walk down to see Brooke. Glad she is sleeping alot. Oh and I realized I might have not posted the name we decided on. Paige Addison Lerner. Brooke will be soooo excited to see her sister, although it will be awhile. I am going to print off a picture and hang it on the end of Brookes bed so when she wakes up, she will be able to see a picture of mommy, daddy, and baby. Brooke has been so into babies lately. She couldn't wait to see the new baby, and feed it, and give her lots of hugs and kisses.

Brookes move up to the 5th floor went well. She is in a nice large private room, painted the color yellow. It is very similar to the color yellow we just painted her new room at home. We are hoping today, she will be moving around alittle more. Late last night, when the nurses were repositioning her, she moved her arms up, and bent her legs. You could also tell her eyes were moving around alot when we talked to her. This was very encouraging to see. She still has a one on one nurse taking care of her too. Her feet are getting stiff from laying there so long. She is getting PT to help this and OT on the way.

I just wanted to say thank you to everyone that has been praying for Brooke, and thinking of her. We have heard so many people we don't even know are following Brookes story and are praying for her even. We are very touched by this, and appricate it greatly.

Friday, September 25, 2009

Moving on up

This morning Brooke got moved from the cardiac floor on 3, to the med. ICU floor on 5. They needed the bed, and since her heart was no longer an issue they moved her. Today they are cutting alot of the medicines in half of the original doses. She is still on alot of various meds and painkillers. They are taking her off of anti-seizure medicines, that she was on as percaution. Cutting her painkillers, and sedatives in half. And taking her paralytic medicine almost all the way off. They want and need her to wake up. She was on an extreme amounts of medicines, and hopefully by reducing them she will start to wake up. So now we just sit and wait again, to see what happens next. They are also lowering her flow of oxygen on the ventilator to low.

Good news today was that Brooke came out of isolation! Previously we had to suit up in gowns, gloves, and mask because of the unknown cause of her illness. Well we are over the 7 day waiting period, for all of the test results to come back. Since every test result possible was taken, and they have all come back negative- they no longer need to take such precautions.

Thursday, September 24, 2009

Had a good day

Brooke got off the ECMO machine this morning. It got delayed until this morning. The heart surgeon did too many heart surgeries, so he needed to go home and get a good nights rest. We were a ok with that. He said Brooke transitioned well of the ECMO machine, and he said the whole procedure went well.

She remains on the ventilator right now. The next step to restoring her body will be to wean her slowly of the ventilator. This will be a slow process as well. The dr. said maybe by this weekend she will be on a low flow. She is also being weaned off of the paralytic medicine. She has opened her eyes some more, but is not really focusing on anything yet. Brooke may get moved off the cardiac floor soon, up to the med. picu. We were just getting to know all of the nurses and dr.s. So will be sad to see here caretakers go.

Wednesday, September 23, 2009

New baby comes

Tuesday Sept 22/Wednesday 23

If I can stay awake I will finish typing this. Wow what a busy day for us yesterday. We had a new baby girl!!!! She was born at 1:17pm, 6lbs 10oz, and 18 inches long. She has a headfull of almost black hair. We were very surprised to see this, and very surprised to find out it was a girl. I thought 100 percent it was a boy. So much for my mothers instinct. Unfornately she still does not have a name yet. We are working on it though. I will post pictures soon, hopefully.

In Brookie news, she had another good day yesterday. She had a CT scan done in the morning. They did this to check for any neurological damage, she might have suffered from the lack of oxygen. The results showed no signs of stroke, or bleeding in the brain- which was great. There was some swelling though, which the Dr.s had suspected from her lacking oxygen during her problems Friday night & Saturday morning. What that means is hard to say. Right when they were getting ready to do the scan, she opened her eyes for the first time and again after the scan, which are good signs. Just the process of transporting her down to the scan involves a team of 2 nurses, a Dr., repiratory therapist, and 2 profunsionist.

Jay stayed with her late last night talking to her. She continued to open her eyes a few more times, hopefully in response to his voice. I was unable to go over to her room, due to the pain I was in, and my incision kept bleeding. We have an IPOD full of Brookie music playing non-stop, and her blankie in her hand in hopes that it reminds her of familiar things.

Today Brooke's ECMO machine was being weaned off. This is very good news, because it is the step in the right direction. The flow to her lungs, and heart was slowly being turned down. Around 3:00 they clamped the flow off all together for an hour. She responded well to that. As I write this, we are waiting for the cardiologist to come back and remove the cannulas to turn off the ECMO machine. She will still remain on the ventillator after this procedure. Although these are all good steps in the right direction, it is still hard not to get excited because there is still so much of the unknown. Almost all of the test done to figure out what caused this sickness has come back negative. We face the possiblity that we may never know what caused it either. So tonight we will be anxiously waiting to see how Brooke responds.

In our other world, we still have a new baby girl without a name. Hopefully we will have a name narrowed down by tomorrow.

Monday, September 21, 2009

No news yet

So today was another day of waiting, which not much news. We are still waiting on the test results to come back. Some have come back, and we at least know it's not the dreaded swine flu. We know that she had pneumiona, we just don't know what caused it. Whether it was a viral infection, or bacterial infection. Once we know which kind it is, we will hopefully know how to treat it.

Brooke got another dose of surfactant in her lungs today, which really improved her lungs rise and fall. Her color remains good. The fluid in her lungs has decresed as well. Her stats are all remaining the same. So we are trying to stay positive that these are all good signs. Hopefully tomorrow we will have more test results back. Our worries will come, when she starts to be weaned off of the ecmo machine. When she is weaned off of the machine, she will have to start using her own body functions to maintain all of her stats. Hopefully she will be strong enough to accomplish this.

In other news, we found out we are having a baby tomorrow! C-section is planned for noon. We don't know what we are having, so we will finally find out tomorrow. Alittle bittersweet, because Brooke was looking so forward to meeting the new baby.

Sunday, September 20, 2009

New day in our new life.

Sunday 9/20 Day 3

We feel much better today, because we got a good nights sleep. Another families grandparents had arranged for a hotel for us without our knowledge. They had sent us to the hotel, and already paid for it. They said they did not want to see a 9 month pregnant mom, sleeping in a chair again. How nice were they? We return to Children's, to the 3rd floor ICU which is the cardiac floor. They have Brooke on this floor, due to her being on the ECMO machine involving her heart. The staff, and nurse are very experienced with these machines. Brooke had had an uneventful night, which we good news for us to hear. She needed her rest, and we did not need anymore complications. They have taken her off of the blood pressure medicine. She is now maintaining her BP on her own. She is still on a slew of other meds though. She has been (and will remain) sedated throughout this whole process of the ECMO machine. The plan today is to let her body and organs rest, before trying to wean her off of the machine. When they wean her off of the machine, it stresses the body out by working hard. So we want her to be completely rested, and ready to fight again. The pulmonary team comes down to take a look at her lungs, and give her surfactant. Surfactant is a agent like an oil/detergent that helps the alveoli in the lungs expand and contract easier. This makes the lungs have an easier time breathing. The Dr. said that Brookes lungs we alittle stiff, and this surfactant can only help them improve. They also did alot more cultures today, so hopefully anyday now we will get an answer of what this sickness really is.

We did notice that Brookes coloring has returned to her skin, and her lips are back to a healthy pick. This is a good sign. We are spending all day in her room today. No cell phones are allowed on up here in the ICU. Even in the waiting room, our cell phones don't really work. So we are hoping this blog, will keep us in communicaton with all of our family and friends.

Saturday, September 19, 2009

How did this happen?

Wednesday 9/16

Brooke is her usual self. Maybe has a little wimpy cough. Nothing to be concerned about. I think "oh no, I hope that she doesn't get a cold." Later that night she starts fussing around 9:00pm, and I end up going in her room to comfort her. Cough is getting a little worse, and she begs me to stay- so I did. She tosses and turns all night long, and the cough gets worse. Almost sounds like a barking, hacking cough. Not a good night for us. Definitely she is now getting a cold or something.

Thursday 9/17

Wake up and go about day as usually. Brooke is playing and we go run some errands. The cough is persistant, so I call the Dr's office. I am now getting paranoid that she is going to be sick, and then get myself and the new baby sick. Go to the Dr's office in the afternoon, and they said Brooke has Bronchiolitis, and does a nebulizer treatment at the office. She shows improvement in her breathing, so the Dr. orders one for our house. We do another treatment, before her bedtime. She sleeps much better this nigtht. I now think "oh good she is getting better."

Friday 9/18

Wake up in the morning and give a treatment. She just wants to sit on my lap and watch Elmo. I give in, because she is acting sick. Does not want to eat breakfast. I worry because she didn't really eat the day before, but think it's ok because she isn't feeling well. She falls asleep on my lap 2 times in the morning. We do another treatment at 11:30. I try to give her lunch, but she wants nothing to do with it. She tells me she is sleepy, and I let her take a nap. I finally go in and wake her up at 3:30, and give another treatment. I take her temp again, and this time it is 103.8. I start to freak out, because she is burning up. I give her Tylenol, call the Dr. and rush her over. She is now having difficulty breathing normally. She was working way too hard to get her breaths out. Get to Dr.s office, and do 3 more treatments to try to control breathing. Does not work. Dr. calls ambulance, and sends us over to the hospital. We get to Condell Hospital. This was not my 1st choice, but was the closest hosiptal. They ended up being really helpful there, and make me feel better that I am in a peds. ER. Brooke is on oxygen. Her breathing is still labored, they monitor her. I am now holding her on my lap, to comfort her. They do a chest x-ray, and say that Brooke has pneumonia. They are going to send her to Children's in Milwaukee, via helicopter. Now this is serious. She then starts to cry out, and gets irritated. Nurse runs in, and checks her. Then starts to pull things out of the drawer, and I know this is not good. We leave because they are going to intubate her to get her the adequate oxygen supply. They have trouble intubating her, and it takes 4 tries. She then codes, and they have to do CPR to bring her back. Meanwhile Jay and I are standing outside the room, listening to this. It was the longest and most terrifing minutes of my life. They shock her and bring her back. They get her stable, and the life flight crew then arrives, to transport her to the Hospital. After what seems like a lifetime of waiting. The flight crew look her over, and get all of the lines and wires right. The flight team takes her to the helicopter, for a hopeful 15-20 min. ride to Children's in Milwaukee. Jay and I stop at our house, pack some bags, and drive up to the hospital. When we get there, we see a team of about 15 people all gathered around Brooke, and they quickly escort us to a waiting room. We then find out in flight, she was not responding to the oxygen given, and her levels were dropping again. NOT GOOD. The Dr's tell us, she is very sick. They don't know exactly what is wrong with her, but her body is not responding to the treatments given. The cardiac Dr. now tells us, that he is going to put her on an ECMO machine, that will bypass her lungs and do the work for them. She has to be sedated, and a big cannula is placed in her neck. This machine takes the blood out of her body, mixes it with oxygen, and then reenters her body. It's purpose is to get the correct amount of oxygen to all of her organs. We are informed this is a very, very serious situation. It's now about 3:00am, and all we have to do is wait, and see what happens to our little girl. We sleep in the waiting room, a whole 2 hours and worry about Brooke.

Saturday 9/19

They come and tell us she still is not doing well with just the lungs being bypassed by the machine. They have been tweaking the meds, and she is still not stable. This infection or illness that has entered her body, is taking it's coarse. The Dr's inform us, they are now going to bypass the heart with the machine as well. The ECMO machine is going to do all the work of the lungs, and heart so Brookes body can recuperate from the shock of all the hard work it had been doing. We wait it out, for what seems like forever. They report back that the procedure went well, but she is still very sick. We go into see her, and the poor girl has tubes all over the place. She just looks very calm. I have brought her blanket from home, and placed it in her hand while she rest. We talk to her, and hope that she can hear us. We head out to a Hotel, to get the much need rest we have lost. What a nightmare.