Weekend

Noah is still making good progress. One of his doctor’s casually said that we wouldn’t be in the hospital for two more weeks when Maria asked. I think all Noah’s medicines are being injected into one of his lines now instead of being dripped in constantly. So, I think that the main goal now is to get him to eat. After pulling his feeding tube out this weekend, a new one was put in that only goes down to his stomach instead of straight into his intestines. He spit up a few times over night, though, so they stopped his feeds. I’m not sure if they’ve started back yet.

We had an OK time together this weekend. We checked out of the Ronald McDonald House Sunday and another family checked into our old room right behind us. Checking out of there, Maria said, was kind of like saying goodbye to a friend. Autumn got to play with her buddy, Easton, another two year-old from Tennessee. She had been looking forward to seeing him again all last week. She loves him and it’s going to be tough explaining to her that he’s gone home the next time we go to the hospital.

Otherwise, we were all about to go plum crazy from being cooped up in that little hospital room. We were all a bit tried and cranky all weekend, but I feel worst for Maria. She never got to leave the room while we were there other than to put a load of laundry into the washer. I can tell she’s tired of everything, tired in general and ready to go home. I’m very proud of her. I’d have had to call in back-up a long time ago. Please enjoy the pictures taken this weekend.

Family picture

Noah (with no tubes) and Autumn

Autumn and Easton

Adapting

Last night I got the first definite sign that Autumn’s world has been disturbed. You see, Noah is in step-down now and he’s doing good. Maria and I are very glad that he’s well enough to be out of the PICU and we are very excited that we are that much closer to bringing Noah home. With Noah being in step-down, though, Maria will be staying with him full time instead of coming home for a couple days during the week. The reason being is that Noah has gone from having a nurse with him all the time to having one checking in on him every two hours, or so. Also, Maria needs to be there when the therapists are working with Noah so that Maria can pick up on what they are doing. Maria’s not leaving and I don’t blame her.

So, once again, our schedule has changed. Seems like we just got comfortable with the old schedule, now we don’t know what to do again. Or, at least, I don’t know what to do to help Autumn feel that everything is normal.

Last night Autumn and I called Maria as we were going to bed. Autumn took the phone and said, "Momma, I show you something." She carefully placed the phone between her legs so that she could keep hold of it while freeing her hands as she sat on the bed. Then she sang Itsy, Bitsy Spider to Maria three or four times while making the hand gestures to accompany the song. After she sang it each time, I would tell her to say goodbye and try to take back the phone. Each time I tried to take back the phone, she’d tuck it tightly between her legs and sing the song again. When I finally got control of the phone she threw a fit, so I asked Maria to sing You Are My Sunshine to Autumn. Maria sang it and Autumn sat there so peacefully that I thought she might have fallen asleep. When I took the phone back she threw another fit, so Maria sang Jesus Loves Me to her and again I thought she may have drifted off. She hadn’t though. I decided to apprehend the phone for the last time to quickly say my goodbyes and hang up. Autumn threw another fit when she called for Momma and no one answered.

She fell asleep fairly quickly after that, but I laid there and thought it for an hour or so. I’ve always thought about how I was handling the separation and I can read Maria’s emotions pretty well, but I never thought much about Autumn’s take on it. I just assumed that everything was OK with her and that she didn’t really understand. I assumed that I was doing a good job of keeping her fairly distracted. I guess you can’t help missing your mother, though, and Autumn knew her mother was supposed to be home last night.

Please pray that Autumn will adapt to being without her mother for a little while longer. I keep telling myself and everyone else that it’s just for two more weeks but I know that’s not a certainty.

Thanks,
Tim

Recent Pictures

Autumn checks out Noah with ventilator on Friday afternoon.

Eyes always on Momma if she's in the room (picture taken yesterday).

Too much excitement for one day (picture taken yesterday).

Check-out time

Step-down. The Floor. The Nursery. Whatever you call it, Noah will be there within the next couple hours according to the caller who just phoned me from the hospital. WOO-HOO! Another first for the little guy - he’s never been anywhere other than operating rooms and the PICU. Maria says that Noah’s having another great day and the caller form the hospital said that he’s well enough that he doesn’t need to be in the PICU anymore. That light at the end of the tunnel isn’t so faint anymore. Thanks to everyone who has thought about or prayed for us so far. And to all who have reached out to help us, thank you.

Good day

Noah's having a big day. He's off the CPAP!!! He's in clothes again!!! He was held by his mother for the first time since transplant!!! And he got a visit from his former longtime roomate, Erica!!! His A-line is out and his pacing wires are out. One of his doctors said, "He looks good. A few more days like this and he could be out on the floor soon." All that and the Red Sox swept the Yankees... Can life on Earth be any better for the Brooks family?

April 22, 2007 Noah Update

This morning Noah had another x-ray to see whether his lungs were ready for him to come off the ventilator. The x-ray results were good, but not great. He's off the ventilator but is now on another machine to assist his lungs called the CPAP. I didn't ask to hold him when I visited him this morning because it still looked too complicated with the CPAP's tubing. Hopefully, he won't need to be on the CPAP too long because I can tell that he doesn't like it. If Noah had his voice today, I'm sure he would say, "Go Red Sox!" That's my boy.

April 21, 2007 Noah Update

We've had a good day in Durham. We are still waiting for Noah to come off the ventilator. He will hopefully come off tonight. We should be able to hold him again once he's off the ventilator. We haven't been able to hold him since the transplant. Autumn has visited Noah two times so far this weekend.

Results of Noah's first biopsy

First, let me explain the reason of the biopsies and the biopsy scoring system. From the Duke Transplant Center’s website:

Biopsies are the only reliable means of monitoring the balance
between the activity of the immune system and immune
suppressing medications required for continued function of a
transplanted heart

Biopsy grading guide also from the Duke Transplant Center’s website:

Biopsy scores range from grade 0, to grade 4.
Grade 0 = No rejection
Grade 1A = focal area of white blood cells without death of tissue
Grade 1B = diffuse but sparse areas of white blood cells without
death of tissue
Grade 2 = single area of aggressive white blood cells and/or a
small area of white blood cell damage
Grade 3A = multiple aggressive white blood cells and/or white
blood cell damage
Grade 3B = active inflammatory process with tissue death
Grade 4 = active, aggressive white blood cell infiltrates with
swelling, bleeding, inflammation of blood and/or lymph vessels,
and tissue death

Results of Noah’s first biopsy.....Grade 0!!!!!!

Copy of a letter from Maria to her peeps

Well, everyone here is doing ok so far. Noah went on Tuesday to have his first of many heart catheterizations. We won't know the results from that until maybe today or tomorrow. He has to have this done often to determine the level (if any) of rejection. Noah did go back on the ventilator on Monday due to a collapsed lung but, for the most part, that is better. He still has some fluid on his lungs but they think he will come off either today or tomorrow. I didn't cry when they put him back on mostly because I knew he had to go back on regardless because of the heart cath. He just needed it a little longer. The only other thing that has changed with him is that he has some significant swelling in the abdomen and most of his upper body. They have run tests and checked him and the final word is that it is from where the pressure in the right side of the heart is not where it should be yet. This can cause a fluid build up in the upper body and with time and meds it should get better. Already since Tuesday it has made some progress, small but in the right direction. Other than these small things we are doing well and we are still holding on. He is still in PICU and no word on when we will get to step down but hey we've been here for two and a half months we will take it as slowly as we need to. Thank you for your continuous prayers and support. Take care, Maria Brooks

Photos from last weekend

Dad saves the day with the pacifier trick.

Autumn says, "I win again!"

April 17, 2007 Noah Update

I should start by clarifying my last post a bit. I got a couple of concerned calls and emails yesterday after I posted the update and felt that I probably painted too dark a picture of how Noah was doing. Please remember that the information I post in the updates is usually third/fourth-generation news. What I should have added to yesterday’s post is that I think what Noah is going through is pretty typical of post-transplant setbacks. The doctor I spoke with this weekend didn’t seem too concerned about anything. He told me that it’s a big balancing act trying to get all the medications regulated after surgery. And I can tell that Maria is concerned, but she’s not devastated about any of Noah’s little problems that have been arising lately. I know that I could tell if she were too concerned. So, overall, we are confident that Noah is progressing.

Noah is in for his first biopsy as I’m writing this. He had a good night and the only concern Maria indicated was that Noah has a lot of air in his stomach. Hopefully they’ll be able to give Noah some "fart pills,"as an old pharmacy customer would say, to get rid of the gas. Please pray that his biopsy results come back clean. We should get those results in a few days. For now, enjoy this picture of Autumn. She is getting along just fine and she is a good girl. I’m very proud of her.

April 16, 2007 Noah Update

I had a few great visits with Noah this weekend. He was mostly awake and alert while I was with him and his nurse had dressed him up for the first time since the transplant. The nurse had him sitting up an he was looking all around - eyes following people that walk by and what not. Sometime during the night, though, they noticed that he wasn’t breathing all that great. Part of his right lung has collapsed because he has been laying down so much. So, they put him back on the ventilator today. Also, he’s gotten puffy again and is having trouble urinating.

Noah was scheduled to have his first heart catheterization/biopsy (heart cath) today, but they’re making him wait until tomorrow to make sure that he doesn’t have an infection coming on. I guess, his labs showed that his white blood cells were a little off. I didn’t know what exactly a heart cath was until Maria just explained it to me. I just knew it was a diagnostic procedure during which he could move. Therefore they would need to put him on the ventilator and sedate him (he’s already sedated and on the ventilator).

The heart cath is a procedure used to determine whether the body is rejecting the new heart. Noah will have to have the procedure more frequently immediately following the transplant and less frequently as time goes on. For the heart cath, a tube will be inserted into Noah’s groin and run through a vein to his heart where it will extract three small tissue samples. I think the tube will also be equipped with a camera. It’s an all day event because they’ll have to watch him to make sure that there’s no bleeding/infection incurred during the procedure. It will continue to be an all day event as he needs them in the future, but they say kids are generally back to their normal selves on the following day.

Dressed up!

Noah's nurse got him all dressed up and put him in his boppy today. I visited with him for over an hour and he was wide-eyed and alert most of the time. He had a little trouble last night keeping his heart at a steady rate. A doctor told me this morning that it was because his electrolytes were low. His electrolytes are being peed off because of the diuretic. But the little man seems to be having a great day today.

April 14, 2007 Noah Update

I've just been to see the little guy and he is great. His nurse said that the only change they made for him this morning was putting Noah on a Lasix drip. He was on Lasix before but they feel that a drip will help him pee off more of the fluid he is holding. This will in turn improve his circulation, which will cause his feet to warm up (his feet have been cold for a couple days).

I got to calm him down using my pacifier trick today. Watching him scream and hearing no sound come out of him was really bothering me. So I grabbed his pacifier, stuck it in and wiggled it. He took it for about ten minutes before falling back to sleep. When I told Maria about it, she said that he wouldn't take the pacifier for her, so I felt like I had the touch.

April 12, 2007 Noah Update

Noah's doing OK today. He's going through withdrawals again and it sounds like he had a bit of a rough night last night. They tried to remove his oxygen tube from nose, but they had to put it back. They also had to put him back on another medicine that they had already backed him off of. His nurse said that she thinks they just got too greedy and tried to do too much with him at once. She said they would be giving him a little time to toughen up and get through the withdrawals before they started messing with him again.

The donor family has been on my mind a lot today. I’ve been trying to think about what I will write in my letter to them. I want my letter to those who’ve selflessly chosen to donate life to be perfect. Hopefully, they will want to reply to us. If you’re wondering how we might get to know the donor family, here is how it works: 1. We send a letter through the organ sharing network if we choose to; 2. The donor family replies to us through the organ sharing network if they choose to, releasing whatever information they want us to have. We may not be able to send the letter for a couple more weeks, though. I don’t know why, but I’m sure there’s a good reason we have to wait.

April 11, 2007 Noah Update

Noah's recovery is progressing faster than I would have ever imagined after such an operation. His chest was stitched up yesterday and he was taken off the ventilator without incident today. His face still looks a little puffy in this picture Maria took of him today. Then again, that just might be his grunt face. Maria did say he appeared to be trying to force something out at the time the picture was taken. The only bad thing I'm hearing is that he's going through withdrawals again, although it doesn't sound as bad as after the last surgery. Keep up the good work, son!

In Memory of Madison

I never met Madison Tew. Destiny only brought me to the edge of the doorway of the room that Madison had shared with many other children as they had come and gone during her ten month stay in the Duke University Hospital PICU. I knew her only through the brief updates I got when I traveled to Durham and a picture on the Ronald McDonald House bulletin board. Madison had a few heart defects but her original treatment plan was the same as Noah’s treatment for hypoplastic left heart.

Yesterday, Maria went to Madison’s funeral with other families and nurses who’ve done time in the PICU and have come to know and love Madison and her caring parents.

There was a time that Maria and I thought that Noah wouldn’t make it. We were devastated because we knew the numbers were not in his favor. Just by putting Noah on the big, scary heart-lung machine, his chances of survival were lowered to 50 percent. The longer Noah stayed on the machine, the lower that number would dip. So, after the first unsuccessful attempt to get Noah off the heart-lung machine, Maria and I had nearly lost all hope.

One thing that brought me some comfort when we believed that Noah wouldn’t pull through was a story that Maria’s father shared with her over the phone on the evening Noah had to be put back on the heart-lung machine. While my father-in-law, Nato, was in Texas for his father’s funeral, Maria called him for inspiration. Nato is a gardener at heart and he told Maria that God’s garden is far more beautiful than we can imagine. And like us, when God picks a flower from His garden, He picks the most beautiful one He sees.

There are children lost all the time as the result of many different things. There are children lost because their parents abuse them, there are children lost in accidents, and there are children, like Madison, that are lost in the best hospitals in the country. It’s hard to make any sense of it here on Earth. But with a little faith, I can imagine that Madison is serving a better purpose in heaven. This spring, God has chosen Madison as one of the most beautiful flowers in His garden.

FAQs

How is Noah doing?
Great! He is a little swollen still but that is to be expected. The doctors have given him a diuretic to help him pee some of the extra fluid off. Noah has been taken off a few of the medicines he came out of surgery on and he’s been taken off the pacemaker. He has better color now than he’s ever had - the blue in his nail-beds is fading. I can easily tell by watching his chest that his heart isn’t working as hard and his breathing looks more natural. He opens his eyes when stimulated, but he’s still sedated because his chest is still open - they want him to stay comfortable and not move much.

How is Maria doing?
Great! Like a good mother, her well-being is reflective of Noah’s well-being. As long as Noah’s doing OK, Maria will be OK (as long as she gets a good night’s rest).

How is Autumn doing?
Autumn is OK. She got pretty spoiled this weekend and ate to much Easter candy. Now, all she wants is candy.

What is your favorite type of beer?

A well-crafted, strong smoked porter.

What is next for Noah?
The doctors plan to sew up his chest today. They will continue to try to back him off his post-op medicines and the ventilator. Noah will be in the hospital for about a month if all continues to go well. I don’t even know enough to speculate what happens while he is there. We were told that if he went home any sooner, then he would have to come back like everyday for a doctor appointment.

What is your favorite color?
Green.

How long did Noah’s heart transplant surgery last?
About four hours. I got a call at 3:30 p.m. telling me that the surgery was underway and another call around 7:30 p.m. telling me that surgery was over.

Good Friday

Two minutes after Good Friday began, I was awakened by the vibrating of my phone against the nightstand a few inches from my head. Only an hour and a half before, I had hung up with Maria and gone to bed. Before I could fall asleep, though, I knew I needed to say a prayer. I recited the “Our Father” slowly to reflect on the words I was saying. I did this five times before asking for the same thing I’ve been asking for since the first ultrasounds of Noah revealed a heart defect.

I don’t know what made me say the “Our Father” five times more than I usually do. I don’t know why I didn’t procrastinate as usual in packing for the weekend. I don’t know why I couldn’t concentrate at work all day Thursday and kept browsing heart transplant websites. And I don’t know what made me want to make sure that Maria and I had some way of quickly notifying each other when a heart became available. But for all those things, I’m glad I did them. For that 12:02 a.m. phone call on Good Friday was the answer to my prayers.

The caller was Noah’s surgeon’s nurse practitioner phoning to say that they had found a possible heart match for Noah. As she explained that the wheels were in motion for procuring the heart, my own wheels started to turn. Upon hanging up with her, I made four unanswered calls to Maria and to the Ronald McDonald House. I sent the text message “Now”, which was the code word we agreed upon earlier to mean go to the hospital. The I phoned my dad and asked him once more out of the blue if he could watch Autumn. Finally, Maria called me back and I was able to give her the news. She sounded startled so I reminded her that this was good.

A little over an hour later, I was on my way to meet Maria and Noah at the hospital. Noah’s nurse and respiratory therapist helped us be able to hold Noah, even with the ventilator in, until 7:00 a.m. At that time we left Noah to get some breakfast. All morning we waited for confirmation that the heart was a match and, if so, news of when the surgery might take place. We learned that the heart was coming from New York and so we worried about the weather there. At 10:00 a.m., Noah’s nurse told us that she had orders to prepare him for surgery at 11:00 a.m. When Noah was put on the transplant list, we were told that we should expect to wait two to four months for a heart. Now, after only three days on the transplant list, we knew that we had a match.

It wasn’t until 2:30 p.m. that we signed the consent forms and left Noah to get some rest at the Ronald McDonald House. Maria had only gotten an hour of sleep through the night and I had managed about three hours of sleep. At 3:30 p.m. I got a call from an O.R. nurse saying that Noah was there and the surgery had begun. At 5:30 p.m. I got another call from the same nurse saying that the new heart was being sewn in. Then around 7:30 p.m. we got the call from Noah’s surgeon’s nurse practitioner saying that the surgery was over and we could visit him in an hour and a half.

Shortly after 10:00 p.m. we were cleared to go back to see Noah. He was in the same room in the PICU that he was sent to after his first surgery. He was a little bruised and swollen and his chest was still open, but he looked good to us. Because it was a hectic night in the PICU, I was only able to kiss Noah’s head and stroke his hair a few times before we were asked to step out. As I write shortly after a new day has begun, all the reports I’ve gotten about Noah have been good. We know that there will be bumps in the road but right now it seems that my prayer was answered.

I ask you to pray for a speedy recovery for Noah. I also ask that you pray for the soul that gave his or her heart to Noah and for the family of the donor. Maria and I will always be grateful for them giving our son a chance to live.

Nel

Noah’s first and only visitor outside immediate family, hospital staff, and other PICU parents has been to the hospital to visit Noah twice. The visitor, a dear friend of the family, has known Maria since they worked together in college. Then they both grew up to be teachers here in Guilford County. I’ll call our friend Nel.

Nel’s first trip to visit Noah came shortly after Noah was born. She came the same day my father came to see Noah for the first time. On Nel’s trip home from the hospital that evening, she stopped to gas up her new Honda. Before getting back in her car, the gas station attendant called out to her to make sure she knew that she had filled her tank with diesel. Nel didn’t realize that, but knew her car didn’t take diesel. Fortunately, Nel didn’t start her car. Unfortunately, Nel had to get her car towed to a repair shop so they could drain the tank. It was an innocent but costly mistake.

Nel’s second trip to see Noah was today. Nel told Maria that she would be driving by on her return from the airport and asked if she could stop by to see Noah. Maria told Noah’s nurse that Nel would be coming by and that Nel could have any questions she had answered. When Nel got back to Noah’s room, she sat on the stool and said that she thought it was hot in the room. The nurse told her to have a seat in the big chair and she would get her some ice water. When the nurse returned, Nel was face down on the floor. She had passed out. Nel ended up losing a tooth and needing stitches in her chin.

Today, I ask those who pray to include Nel in your prayers. And Nel, we sincerely thank you for going to visit Noah, but please understand if we prohibit you from going again. It’s for your own good.

Noah's birthday gift to me

The gooder news

I almost forgot to mention the gooder news...

Noah is in an isolated room now and he can have visitors other than parents and grandparents. If anyone (who is not sick) wants to visit with him, just give Maria or I a call and we should be able to make it happen.

At least Noah is stable again

I just spoke with Maria and she told me that Noah is stable now, but he is very feisty when he wakes up. He tries hard to pull the ventilator tube out of his mouth. He is very partial to his pacifier which he can’t have while on the ventilator. Maria said it breaks her heart to see him try to suck on the tube they put in his mouth to clean it out. Maria also said that he tries to cry, but there is no sound again. Because he is so relentless in trying to get his ventilator tube out, they will be giving him more doses of mild sedatives.

The nurses got an A-line in Noah last night, which is used to draw blood. Maria said that she counted 25 spots on one side of his body and that there were at least as many on the other side. The spots are where they tried to put the line in his veins. Tonight they are going to try to put a PIC-line in, which is used to deliver medicine, so pray that they get one in easily. He already has one PIC-line in his wrist, but I guess they want one closer to his heart. They can use one closer to his heart to insert a monitor that constantly monitors his blood pressure.

Noah is now officially on the heart transplant list. That would have scared the crap out of me any time before yesterday, but now I pray that he gets a heart soon.

Hope

This past weekend Maria explained to me that she was afraid that Noah had been doing too well and that, as history had shown, we were due for another setback on Noah’s road to recovery. I agreed. We had grown used to taking a step back for every couple steps forward. Neither of us imagined, though, just how far back the next blow would set us.

After talking with Maria several times over the course of yesterday, I decided that I needed to be with her and Noah at the hospital. I called my father and mother to ask if they could take Autumn for the night and my dad said he would leave immediately to come get her. After Autumn left with her Papa, I got in the car and started making my way to Duke Hospital.

When I arrived at the hospital I was disheartened to find Maria in the waiting room, for that meant that for some reason she couldn’t be back there with Noah. She told me that the nurses were trying to put another line in. The new line make it easier to draw blood for all the samples they would need. We waited for two hours in the waiting room before the intercom announced that the Brooks family could go back.

When we got back to Noah’s room, I stood at his bedside in disbelief. Noah looked as though his troubles were far behind him when I left for home on Sunday. Now, just one day later, I see him with the dreaded ventilator going down his throat. His skin was grey and I feared that if I touched him, I’d find it cold. His eyes were open about a quarter of the way, but completely unresponsive from what I could tell. Maria rubbed his head and tried to close his eyes so he could rest.

I didn’t know what to do so I stood a little behind Maria and rubbed her back. I had come all that way to give her encouragement, but as I stood there I felt that I had nothing to give. The little flicker of hope inside of me seemed to be gone. When we left Noah just before midnight, I kissed his head and whispered my goodbye to him and told him to be strong. When I told him to be strong, I felt the light inside of me grow stronger. Just then I remembered telling him to be strong when I left him the night he had his surgery and he did.

Spoke too soon, maybe?

I just got word from Maria that Noah's surgeon feels that Noah is still struggling too much and they are putting Noah on the heart transplant list. Please pray for his and Maria's strength.

Thanks, Tim

Weekend Update

The Brooks gang had a good weekend, except for the pollen wreaking havoc on my sinuses. My allergies actually helped me become a little more comfortable with Noah, though, because I had to keep putting him down and picking him back up when I had to sneeze or blow my nose. Apparently, he’s not as fragile as I thought. Feeling comfortable with him also helped me calm him because he likes to be held and to be moved. Before this weekend, I would just sit in a chair with him in my arms until he’d nearly slide out, then I’d call a nurse over to help me reposition him. This weekend I was swaying and rocking with him and he never got fussy with me.

Maria said that Noah did stay fussy last night because he was behind on his feeding schedule. Yesterday, he pulled out his feeding tube and it wasn’t until about five and a half hours later that he started getting breast milk through his tube again. In the meantime, Maria got to feed him a little through a bottle nipple. She said that he sucked 10 cc’s out of the nipple and then she burped him after.

We’ve got about another week of beefing up Noah before they start backing him off his Milrinone (the blood pressure medicine). I’m praying that everything goes well when that happens so we can start thinking about bringing him home. It will be nice to see if there’s a light at the end of this tunnel.