Tuesday -- October 14th
The past few days have been filled with ups and downs.
After Ernie went home for the night on Sunday night, he called me at 5am Monday morning to tell me he was going by ambulance to the hospital because he was in a lot of pain on his right side. Turns out his appendix was inflamed. He had surgery to remove it on Monday afternoon. We just couldn't believe it.
Since I wasn't able to go home, Jeanne brought the boys in for lunch. I was so happy to see them that I was shaking! They stayed for just over an hour.
Later in the afternoon, the team of doctors pulled me ito the hall to discuss the latest. They have not found any virus, bacteria, or fungus growth and they think it is time we try to treat Maddie's lung disease with a new drug. There are no other alternatives and with each day that goes by with us doing nothing, Maddie's lungs get sicker. Giving her lungs time to rest was not the answer. I was completely overwhelmed and Ernie was in the hospital.
My friend, Lorraine, came in to be with me. I really needed someone and I was so grateful she was there. Soon after, my friend, Amy, showed up. God couldn't have sent two better friends to be with me. Paul Altmeyer came in and the four of us sat and talked until about12:30. My pals tucked me into bed and went home.
This morning, Ernie came back from Norwood hospital. He got a ride in with our friend Helena and he is here now with my sister Jeanne. We met with the team just a litte while ago and we are going to start the new drug today.
Please pray for Maddie. Please pray that her body tolerates the new drug and that she will begin to heal.
Sunday -- October 12th
Ernie came back to the hospital around 12 on Saturday. It was a day spent trying to get Maddie comfortable and have her breaths synch up with the ventilator. Maddie had been drug induced paralyzed since the surgery and they stopped the paralytic drug to let her rouse and try to do some breathing on her own.
While she was awake, she wrote questions, barely legible, on a white board. Questions, such as "Why? What? How long?" She let us know what she liked and didn't like. She did like that I had brought down the posters of Hope and hung them on the window right in front of her bed, a picture of her with the boys, the paintings she did, the sign she wrote "never, never, never give up," and a picture of her at the Grotto in Lourdes. I hung that one right on her pump so when the doctors work on her, they can see her big, beautiful smile. They never get to see the kids they are treating before they come to the ICU, healthy and smiling, and I think it's important that they do.
She made it clear about one thing she didn't like. She wrote, "one day I'm gonna punch all..." and then she pointed to her pumps! We all cheered and said, "One day, we'll ALL punch those pumps! We'll have a "Punch The Pumps" party!
The day was pretty hectic and there was contstant buzzing action around her. By the end of the day, the team decided it would best to re-paralyze Maddie, because she was breathing against the ventilator. They couldn't get the two to synch up and this was doing her more harm than good. She was doing better when she wasn't working so hard. I got one last hand squeeze from her and that was it.
Once she was sedated and quite again, Ernie and I ran across the street for a quick birthday and anniversary dinner. As hard as it was to leave Maddie, we needed a quick break.
Ernie slept down in Maddie's room on the 6th floor and I slept with her in the ICU. It seemed like a quiet night, until I woke up at 6am and the team decided to try to stimulate Maddie again and take her off the paralytic for another go around. We couldn't wake her up. I tried to talk to her, rub her, call her name. No response. I got really nervous as more doctors came in to the room to see what was going on.
I ran down to 6 to get Ernie. They stopped her sedation and pain medicine to wake her up. Her breathing was all out of whack. It was very scary. She had an overload of CO2 (carbon dioxide) because her body wasn't expelling it quickly enough and all of the meds had caught up with her too. So they suctioned her, and we waited. They said it could be several hours before she woke up, but she came around within the hour. Huge sigh of relief.
We got her settled again and after the doctors met and made their rounds, they decided that we will keep Maddie paralyzed for some time, to let her body rest and let the ventilator do all of the work for her. So, although she can't move or even open her eyes, she can hear us and we continue to talk to her all day.
My brother, Mike, and my sister, Jeanne, came in for a visit this morning. It was very emotional. A few hours later, Ernie's Mom and brother, Bill, came in. The four of us got to run across the street for a quick lunch while Maddie was comfortable. It was nice to get the fresh air and take a break.
After lunch, I was alone in the room with Maddie. I plugged ain n IPOD in and played some of Maddie's favorite songs. I was leaning over her bed, with my back to the door, singing loudly along with Hannah Montana. Yep, just me, Maddie, and Hannah, until I hear..."umm, knock knock? Excuse me? I quickly stopped singing and turned around and there they all were, a team of 4 doctors enjoying my private concert! We all started laughing, but I was pretty embarrassed! I'm sure Maddie was cracking up on the inside, and I'm also sure she was glad I stopped singing!
Still no results on the biopsies. Hopefully tomorrow will bring some more information. If Maddie is stable in the morning, I am planning on going home for a few hours. I miss the boys terribly and need to spend the day with them, and catch up with a few things. Then I'll come back to the hospital. Ernie will stay with her while I'm gone.
Saturday -- October 11th -- update
In the midst of every crisis there are always little things that make you smile or laugh and I thought I would share one of them with you as we wait for Maddie to pull through.
Shortly after the lung biopsy was finished Kristen and I decided to go up to ICU and check out the room Maddie would be in. We wandered about the ICU for a bit before we found our nurse who directed us to it. It was a in the intersection of a busy triangular hallway and all of the lights were on giving it a cold, sterile appearance. "Ugh," Kristen said. "It doesn't even have a bathroom." She poked around for a minute, then cupped her hands up to the window to check out the view, which was mostly comprised of a large piece of airconditioning ductwork.
"This isn't going to work", she whispered. "Do you think we can change it?"
I looked at her and smiled. "This isn't some kind of hotel," I said. "You can't just ask them for a room with a bathroom and better view."
"It never hurts to ask," she said. She noted there were a couple of nice rooms she had spotted on the way in that were empty.
Apparently the nurse overheard us and the next thing I know she was on the phone with the charge nurse to see what she could do. Lo and behold a few minutes later we were directed to a new room that was much bigger. It had it's own private bathroom and a nice view overlooking the Brigham.
I could tell Kristen was happy with it as she slowly walked about and nodded her head approvingly.
"Why is it the equipment and bed arranged so that the patient is looking into the hallway instead of out the window?" she asked after a minute. "It would be really nice if we could turn things around so Maddie could look out the window when she wakes up."
The nurse explained that wasn't possible. Each piece of equipment was arranged in a specific manner so that it could be monitored from a central control booth or the main hallway. "All of the rooms are set up exactly the same way," she explained.
Shortly therafter Maddie was brought up from the OR. Once she was stabilized I went home to be with the boys, returning shortly after lunch today. Upon entering the room I noticed Maddie's bed and all of the equipment had been completely rearranged so Maddie's bed now faced out the window. In addition, Kristen had brought up all of Maddie's pictures and artwork hung them throughout the room, giving it that same warm cozy feeling she had created down on 6 west. Even the doctors were impressed with the arrangement and I heard one of them say they should do this with the rest of the rooms.
"How did you do this?" I asked in amazement. "It never to hurts to ask", she said.
I hope you enjoyed this story. The chaplain stopped by a short while ago and said "Laughter is carbonated holy water." I believe this to be so.
Saturday -- October 11th
Yesterday did not go as planned. Maddie was bumped a few times from her OR slot and begged for water all day. She wasn't allowed to eat or drink since midnight the night before. Her oxygen stats were dropping throughout the day and she was clearly getting weaker. Ernie and I were extremely nervous and by the time she got to the OR at 7:30pm, she was in pretty bad shape.
We didn't see Maddie again until after 11:30pm. We spoke to the surgeon and the oncology fellow who stayed in the OR with her the whole time. Maddie's lungs are very sick. She has a chest tube in under her left arm and of course, is intubated again. They were able to get two biopsies and they stayed late to try to get some preliminary results as quickly as possible. It's critical that we get some answers and find a fix right away. It's now 9:45am and there have been no answers yet.
Ernie left after midnight and I stayed. I actually slept in her room on the 6th floor because the doctors/nurses said Maddie was asleep and they were going to be very busy with her all night.
I got a phone call at 2:45 this morning from Maddie's nurse, telling me that she still was not stable and they were working hard to stabilize her. They were getting ready to change her to a different ventilator, for the maximum support. She maxed out on the first vent support. They suggested I stay where I was so they could work and they would keep me posted. I was scared to death. I sat in the room, praying and crying, but didn't want to call home and wake up Ernie. There was nothing we could do.
I woke up at 5 this morning and came running down to the ICU. They were able to stabilize Maddie on the first vent and not switch her over. Thank God. She is very critical but they are doing everything they can to keep her sedated and comfortable until the next step. So, now we wait.
Maddie knows when I'm in the room. Her heart rate and blood pressure go up when I talk to her. She even tried to open her eyes to look at me, and she squeezed my hand. I told her to just rest, take a nap, let her body heal and she tried to nod her head "no." The nurses had to giver her more sedation when she started to respond to me. They asked me to try not to talk to her too often or if I do, to just talk very softly. I can hold her hand. They don't want her too stimulated. They want her to rest and stay heavily sedated.
Before we went to the OR yesterday, Maddie perked up when Kevin and Jared came in to hang out with her. Maddie painted the most beautfiul painting for me. It's a painting of my favorite long, tree lined driveway up in NH. She also painted a picture of a plane pulling a happy birthday banner for Ernie. They're amazing. Jared made a duct tape cell phone cover for Maddie in hot pink. She loved it. Those guys really have the gift to lift a child's spirits.
Please continue to pray for Maddie. She has a very long, uphill battle ahead of her. Her spirit is so strong. She is fighting.
Thursday -- October 9th
Maddie’s surgery is scheduled for tomorrow. We do not have a time yet, but I will get there for 7am, so I won’t miss her going in this time. We had to tell her tonight about what is happening. Ernie had me on speaker phone with Maddie, her primary nurse, Caitlin, and the nurse practitioner. It was so heart breaking to have to tell her about what is about to happen. She has been working so hard to get better, she has been through so much, and it’s just so unfair. Unfair…what a freaking understatement. There is so much sadness, frustration, depression, despair, fear, anger. I could go on and on, but…
We have to be strong. We have to keep it together and let those feelings take a back seat and focus on something positive. Something like…
Hope. The hope that we will find what is going on with her lungs and we will finally be able to fix the problem. The hope that THIS is the LAST hurdle for Maddie.
Faith. The faith that God is holding us up and that He will protect Maddie, be with her, guide us, keep us all strong. And of course…
The love. I like to focus on the love. I may have already written this in the past, but I hold onto the quote I read somewhere:
“Where there is great love, there are always miracles.” I’m holding out for our miracle. I’m holding on to my hope, my faith, and the love. That is how we will get through this.
We are going to do this, and we are going to get Maddie better. We are going to get her home, where she belongs.
It will be a very difficult time for Maddie and she will be in the ICU again. I will stay with her and Ernie will come home tomorrow at some point, depending on what time her surgery is and what time we get her settled into the ICU.
I want Ernie to come home and enjoy the night with the boys. It’s his birthday tomorrow and we have a nice little party waiting for him when he gets home. I wish we could all be together to celebrate, but I pray every day that we’ll all be together again real soon.
Please pray extra hard for Maddie tomorrow. Thank you.
Tuesday -- October 7th
I am home now for a few days. I switched with Ernie yesterday. It was very sad for both Maddie and I when it came time to leave.
Before I left, the doctors made their rounds and one doctor said, “Maddie, can I borrow your Mom for a minute?” Do you know those are the exact same words the doctor used on the day I was told Maddie had cancer? It’s never good news to follow when you hear those words.
Anyway, they told me their plan was to do a catscan of Maddie’s lungs and based on their findings, go ahead with another surgical biopsy. I was devastated and briefly got to talk to Ernie before coming home.
I just got off the phone with Ernie. Maddie’s catscan was done this morning and based on the results, Maddie now has an upper lung infection. Last time, her lower lungs were affected. They want to do the biopsy this Thursday. Maddie will have one or more chest tubes inserted and she will be intubated again. Depending on the anesthesiologist’s view on how her lungs are handling the procedure, will determine if she comes out of the surgery extubated or if she remains intubated in the ICU. The chest tube will stay in for a few days.
We are so upset with this news and I know Maddie will be distraught when we tell her, but once again, we ask that you all keep Maddie in your prayers. I will be heading back in before the surgery, which is tentatively scheduled for Thursday.
Sunday -- October 5th
Last night we had a scare. Maddie woke up around 2am and had a coughing fit. She started to cough up some blood and her oxygen levels dropped. The alarms were going on and off and the nurses were coming in and out. The on call doctor ordered a chest xray. I thought we were going to the ICU and started to pack a little bag. I was so afraid she had another lung bleed.
Luckily, the xray was a little better than the last one. They think the bleeding was due to her extremely low platelets. They gave her a platelet transfusion and after getting her settled down, she was able to go to sleep. I, on the other hand, ran to the bathroom and cried when it was over.
It's so hard, so exhausting, so frightening, so incredibly sad. My heart is broken for Maddie. I pray, I wait, I hope, I trust, I believe. I just wish Maddie would heal now. She has had enough. We all have.
We had to raise her oxygen support after the whole ordeal, and she has had to stay on the higher support all day. She is getting really tired. She tried to sit up and do a therapy session today. It was a quick one and then she went right back to bed.
They have changed Maddie's oral steroids to IV steroids. The hope is that the IV steroids will deliver a little bit of a faster and stronger punch to help heal her lungs and clear up her skin issues. I think the doctors are getting frustrated as well, that her recovery is not moving faster.
Maddie has tried to eat but still has a lot of mouth sores. She desperately wanted a peanut butter and fluff sandwich. I ran out to CVS, got the ingredients, made it, and she couldn't eat it. It hurt her mouth. She is so hungry but can't eat. I finally found something she likes and I was SO excited! She loves the strawberry/banana Dannon yogurt drinks. Yeah!
I am switching out with Ernie tomorrow. I am so sad and scared to leave Maddie, but I need to be with the boys for a few days. They had a good weekend. My sister in law, Amy, came up Friday night with their cousin, Gregory. They stayed the night so that Ernie could go up to NH for the night to be a part of his mother's birthday celebration. They spent the rest of the weekend playing on the zip line Ernie set up in the backyard. Their weekend was filled with happiness and laughter, and that makes me smile.
Saturday -- October 4th
Maddie continues to work hard to get better. Although she wasn't in the mood yesterday for respiratory therapy and told the therapist to leave! She was having an emotional day and she didn't want to do anything. The therapists are very understanding and they have been very good with Maddie.
I started to feel the slightest chest cold starting on Thursday morning, something I would think nothing about if I was home. I feel fine, but because of the situation, I had to go on anitbiotics and have to wear a mask. I swear, I get sick every time I come in here. It's the stress, the dry air in here, or the fear of getting sick, that make me sick, and it's such a bummer.
I was told I can't sleep next to Maddie until my antibiotics are done, so Maddie is heart broken. I had only gotten to sleep next to her on Wed. night and it's so important for her to have that closeness. Maddie asked me to sleep at the foot of her bed again, and hug her legs. We'll ask the doctor on call tomorrow if three days on anitbiotics buys me a ticket to sleep next to her! I sure hope so.
Yesterday morning, the clowns came by to cheer Maddie up. They are so funny and Maddie did smile while singing a camp song with her familiar clown friend, "B." They didn;t think they were getting a big enough response out of Maddie, so they toilet papered our room as we sat there. They hung it all around the room and wrapped the two of us up in it. It was funny.
Last night I thought it would be a good idea for Maddie to see some friends. I really felt like she needed it, and she agreed to a visit with Lauren and Kristen. She has been so down and I was hoping it would lift her spirits. The girls came in with their Mom for the Friday night pizza dinner here. I thought it would be perfect. Sadly, it made Maddie more upset.
After the girls left, Maddie was very upset and said having visitors makes her miss home and her friends even more, and she has decided she doesn't want visitors anymore. It's so heartbreaking, but I have to respect her wishes. I just wish visits from her friends would cheer her up, but I understand.
The doctors came around for rounds this morning and checked in on Maddie. They feel she is not getting worse, but she has remained stable for longer than they were hoping. Despite the fact that lungs take a very long time to heal, they would like to see more steady improvement.
The theory is still that Maddie had bleeding in her lungs, not a fungus, viral or bacterial infection, since all of the tests have still been coming back negative. We weened her down from 70% to 50% oxygen yesterday and she has held steady at that %. That's good.
The doctor talked to Maddie about the importance of sitting up in a chair as much as possible, as oppossed to staying in bed. Staying in bed all day can actually cause the lungs to collapse and we worry about muscle apathy as well. So, today we were asked to try for 1/2 hour sitting in a chair. Although she fought it at first, she sat in that chair for 2 1/2 hours! I was so proud of her!
While Maddie sat in the chair, all wrapped in her blankets, with her oxygen mask on, the two of us listened to her IPOD tunes and colored. Just hearing her music, perked Maddie up and she smiled and seemed to be enjoying the time! Then the IPOD broke! It just stopped! Noooooo! By that time, Maddie started to get tired, so she went back to bed and took a long nap.
Maddie worked so hard today to follow doctors orders. She so desperately wants to get better and go home. She has been in this room for about 6 1/2 weeks. The doctor said if we don't see a big improvemet by early next week, we'll have to discuss the next option of what needs to be done.
Please keep praying for Maddie's improvement. We need to get her home.