Family Vacation

Family Vacation

Wednesday, August 31, 2011

Post-Op Day 6

Last night was a tough one for Nathan. His nurse struggled to stay ahead of his pain and movement all night. The problem was that he needed an increase in all his doses of medications, he had gotten used to the old doses, and by the time we realized that and got the order for the new doses the pain was ahead of us and we had to really work to catch up with it.

His nurse ended up putting him in restraints because he was moving so much and she didn't want him to go for hte breathing tube and self-extubate, that would be very bad. Every time he did move he seemed to be wiping his eyes though which makes me think the morphine is making him itchy and he wants to scratch (morphine also makes me itchy).

Again in the early morining right after an x-ray he was moving around too much again. So again his doses were increased. That means that when they were increased at the beginning of the night the doses weren't increased enough. So for right now he's doing OK. ORL was just in here and talked again about decreasing his sedation, I told them no. For Nathan he seems to be either asleep or moving way to much - no middle ground. The doctor just keeps saying that wiggly is good, but not too wiggly. I don't think he understands what wiggly in Nathan looks like these days.

Later today we should get a time for tomorrow. The current ORL doctor said that he thinks it will be earlier in the day since it's a smaller procedure, Dr.N tends to save his bigger things for later in the day  So hopefully we won't have to wait around all day tomorrow.

Tuesday, August 30, 2011

Post-Op Day 5

Nathan had an OK night last night, and his nurse was the reason it wasn't good.

For a while last night his BP was a little elevated, nothing bad but just above where it usually is. The problem is that Nathan loves to sleep. He loves to lay in his bed and be cozy with his blanket. He likes quiet when he sleeps, not silence but no talking and disruptions. He likes the alone time.

The nurse last night was obnoxious and loud all night long. Every 2 hours the nurse (all the nurses) come in to do care, they reposition him, change his diaper and suction his breathing tube out. Each time his nurse last night did that she turned on all the overhead lights and talked to the respiratory therapist about her personal life. I swear she was saving all her talking for while she was in our room. For example, I know she is from Chicago and left her boyfriend there to become a traveling nurse and it was hard to tell him but he understood that it's what she wanted to do. He does get upset each time she takes a new assignment but they make it work and visit each other at least every 2 months. Now, I didn't ask her a single question, I learned all that from just trying to sleep.

So I asked Nathan this morning if he was tired, yes he is tired. Did he get sleep last night, no he did not get sleep. Did he want Mommy to stop talking to him so he could get sleep, yes he did. So I know his BP was elevated because he was annoyed that he wasn't getting sleep and wanted to. Heck, you could have checked my BP last night and it would have been elevated.

Needless to say I talked to the nurse, she cried to her friends, and I talked to the charge nurse and we will have a different nurse tonight.

I talked to ORL and they are going to decrease his sedation in preparation for Thursday's extubation. They are also going to start steroids to help with any swelling he may have and start another antibiotic just because he's going back to the OR.

He is on the schedule for Thursday but we won't know what time until Wednesday afternoon. As soon as I do know a time I'll update you all. In the meantime, I'm getting  a lot of my Christmas shopping done!

Monday, August 29, 2011

Post-op Day 4

Nathan is still holding strong. He's stable and for now that is still all we want. His oxygen has been good, it hasn't dropped in a while and that is great. It looks like later today he is going to go off the floor to get his g-tube turned into a j-tube. That means that when he is fed the food will bypass his stomach and go directly into his jejunum, the second part of his small intestine. The doctors want to do that to make it safer for him to "eat" rather than being in IV nutrition for the next few days.

I had to make it clear to the dr that even if they are able to get a j-tube in he IS NOT going home with that and he will be going home with a g-tube. It took us a very long time to get him transitioned from a j-tube to a g-tube and we aren't interested in going back. It's OK as a temporary thing but it's not going to be long-term. The team just thinks with the g-tube he will be more likely to aspirate since he is paralyzed, no muscles in his body are working and that includes the ones involved with keeping food where it belong and preventing reflux. Hopefully they are right and he will be safe with the j-tube. I'm not sure when he is going to get that done, or if it will even happen today. A lot needs to be coordinated to get a kid on a ventialtor off the ICU floor.

Sunday, August 28, 2011

Post-op Day 3

Sorry I didn't get a chance to update yesterday, Nathan kept me busy and we got some visitors. Aunt Kathleen, Trevor and Mimi all came to see Nathan and he was as excited as one can be in a medically paralyzed state. He did try to open his eyes when he heard he was getting visitors and while my mom was reading to him his heart rate slowed down showing us that he was either sound asleep, or very relaxed with Mimi.

It was nice for me to see Trevor, I haven't seem him since Wednesday. I like to think he missed me but when I picked him up I separated him from his food and he wasn't happy about that. Next time we're reunited I will make sure to have an emergency banana with me.

Nathan is doing pretty good. He had one incident yesterday where his oxygen level went down to 12%, it's supposed to be 100% - alarms start at 90%. The nurse was changing his diaper and he started peeing all over the place so she quickly put a diaper on him, we think that started him and caused him to move wrong and block his breathing tube. All the alarms went off, she called for help and the cavalry arrived. Everyone came running, with the code cart, and he came back up as quickly as he went down. Still scary for a mommy to see that, and to see them bag him instead of using the vent.

Today he is doing good. They are questioning the position of the breathing tube - he keeps having similar incidents to yesterday. Since his nurse knows his signs she catches him before he goes way down and he is able to recover quickly. The ORL doctor is going to come back in a little while and put a scope down the breathing tube to check to position of the breathing tube, they think it might be just a little bit too low and that is what is causing all this trouble. So we just have to wait and see, in the meantime his nurse is never far from our room.

Friday, August 26, 2011


I just wanted to give you all a quick update on Nathan. He is still doing great. Earlier today his nurse came in to do care and she goes "get over here, he's responding to me" so I went over to his bed and started talking to him. When I asked him if he was doing good he nooded his head yes - I love that he responded, his team does not love that he was able to move so his paralytic was increased. The nurse just knew that I would like those few seconds with him before he went back to sleep.
Here is his mailing address, I'm going to put it on the blog later in case anyone wants to mail him anything.
300 Longwod Ave
7 South MSICU
C/O Nathan Webster
Boston, MA 02115
Please don't feel like you have to send anything, but I know some people wanted to send cards and things. Flowers aren't allowed in the ICU so please don't send those and latex balloons also aren't allowed, mylar ones are. Thanks!

Post-Op Day 1

Nathan did well overnight. Originally his ORL doctor had said that he might be allowed to wake up during this first week as long as he could hold still, I'm not sure the doctor knew who he was talking about. When they first got Nathan out of the OR he was simply on a sedative and morphine for pain control, he wasn't paralyzed. They were going to allow him to wake up a little and see how he did, but they also had restraints on his wrists to keep him from pulling his tube.

Overnight Nathan did start to wake up and wasn't thrilled with his situation so he started thrashing around. It wasn't as bad as it sounds but because any little movement can disrupt his surgical site he was medically paralyzed. The restraints were removed from his wrists since he no longer needs them, he is completley unable to move any part of his body. That includes breathing so he is completley dependent on the ventilator. He was going to be on the vent the whole first week anyway so that's no big deal.

Really this isn't something I'm suprised by, Nathan does have a history of self-extubating when he gets mad and this is one time when he will do more damage by doing that. So it's going to be a boring first week for us, Nathan won't even open his eyes and will be "sleeping" this whole first week. Anyone have any good netflix recomendations?

Overall he's doing as good as can be expected for being a little more than 12 hours post-op. He looks great, there isn't really that much swelling. His vitals are all stable and that's all we want for right now.

If you need me please text, we aren't supposed to have our phones on (but I do). I will periodically check my phone to see if anyone has texted me recently. I can call from outside the unit so if you need to talk to me text me and I will go outside the unit to call you.

Thursday, August 25, 2011

Last Update

He's out and stable. The surgeon just came out and said everything went well. Nathan did great during surgery. He is going to go to the SICU soon.

I don't know much, just that he is OK and his trach is gone. I should know more tomorrow.

Thanks for all the prayers all day, they worked!

Update 4

We just got another update. It's still going to be a little while. The doctor is hoping to be done around 8. The problem with that is the surgery waiting area closes at 6:30 - we have gotten our last update from the liason. So at 7 we are going to go up to the SICU (surgical ICU) and wait for Nathan to arrive. We will talk with the doctor once Nathan is moved up there. Hopefully it isn't long after 8. I'll update again when I can.

Thanks for thinking of us. Your texts, facebook messages and all your support have meant a lot to us. Matt and I both really appreciate it.

Update 3

Nathan is still in the OR. We just got an update and the liason said when she spoke with the doctor he told her that Nathan is stable but it's still going to be a while. When the liason asked him for an estimate on how much longer he told her he couldn't give one, it was going to be a while longer.

More waiting... this is getting boring. And we keep seeing families come and go and we just wait... I just want to see my boy and see that he is OK.

Update 2

Nathan was finally taken into the OR around 11:30, only an hour late isn't really all that bad. I was able to go right into the OR with him and hold him while he was put under anesthesia. He was given gas that made him go right to sleep.

After that Matt and I went and checked in with the liason and then went to lunch. We got back from the cafeteria and the liason came and found us, the general surgeon was coming to talk to us. When he came out he said they had "hit a little speedbump" and were unable to place an IV. Neither Matt or I were suprised by that, he's a really hard stick. So they just needed us to sign a consent for a central line. That was around 12:30, so in the next hour we should start getting updates each hour.

Now we just wait.

Update 1

I meant to update yesterday but wasn't able to figure out how to update from my phone and we didn't have internet at the hotel. Nathan is doing great, he keeps saying he wants to go home though. He hasn't seemed nervous at all, but we aren't doing anything yet. We are at the hospital and waiting to go to the pre-op clinic. We have to be there by 9 for a 10:30 surgery time. Hopefully that doesn't get pushed back but we are now operating on doctor time and that's never the same as regular people time.

I'll update again once he actually goes into the OR. I am going to go into the OR with him, it makes it less scary for him if a parent goes. So I will go in and be with him until he goes to sleep.

Say a prayer for us, we sure can use them today.

Friday, August 19, 2011

All About Surgery

I've had a few questions lately about what exactly Nathan's surgery will entail and that made me realize that most people have no idea how big of a surgery this is. So I figured I would explain what his surgery is going to be and reasons why it might not work. That might help all of you understand why Matt and I aren't always as optimistic about the outcome of surgery. Before I can do that you need to understand why he has the trach, so bear with me this could be a long one.

Why He Has The Trach
During the surgery to repair his esophagus the surgeon was dangerously close to the nerve that controls your vocal cords.  We didn't know it going in but a big risk of esophageal surgery is vocal cord nerve damage, Nathan had worst case scenario. The nerve that controls his vocal cords was shut, paralyzing his vocal cords in the closed position.

When we breathe our vocal cords open and allow air into our lungs. Then whenever we swallow our vocal cords close and protect our airway so the food goes into our stomach rather than our lungs. Nathan's vocal cords are closed and prohibit him from breathing from above his vocal cords. His trach (as all are) is below his vocal cords so that he can breathe.

Surgery Info
Nathan will first be put under general anesthesia. Then a few different IV lines will be placed, a PICC line and a regular IV. He will need more than one IV site because it's a big surgery and there is a HUGE risk of bleeding, so he will more than likely need blood during surgery. They can use one IV for blood and another IV for other things. Putting the IV in will take a while, he's a very hard stick after all the IV's he had in his life.

Once the IV is in the actual surgery will begin. First a general surgeon (hopefully his pediatric surgeon Dr.B) will take rib cartilage out. Then the ORL doctor will use the rib cartilage and place it between his vocal cords. The rib cartilage will be used to "prop open" his vocal cords. Opening the vocal cords will give him a wider airway and allow him to breathe without the trach, hopefully.

Once the vocal cords are opened the ORL doctor will close his trach site. That means closing the opening they created in his trach and closing the stoma on the outside. This will leave him with just a little scar on the front of his neck that eventually we would never see. Who has ever see Catherine Zeta-Jones former trach scar?

I know it doesn't sound like much but keep in mind that this will be our little 3 year old boy's 14th surgery - in 3 years. Each time he has surgery he develops more and more scar tissue and that has effectively turned his abdomen into concrete (his surgeon's exact words), the scar tissue is tough to get through and remove. It makes surgery more difficult and makes everything take longer.

Once Nathan is out of surgery he will be taken to the ICU for at least a week. While he's in the ICU he will be heavily sedated, probably medically paralyzed, for at least the first week. He is scheduled to go back to the OR on September 1st for a trial extubation. At that time the ORL doctor will use a camera and look down his throat at the surgical site, as long as it looks like it's healing they will trial an extubation.

Possible Complications
Inability to Breathe - the ORL doctor said that some kids who had been trached for a while just panic once they are expected to breathe without the trach. Nathan has been trached since he was 4 months old, he's lived virtually all of his life with the trach so this is a very real possibility. Nathan has never reacted well to change, or when he's expected to do new things. He used to throw up at the mere sight of his physical therapist. He's not great with new things so hopefully he does OK with his "new" breathing.

Bleeding - while the general surgeon is operating he will be open for a while. That means there will be a lot of bleeding, it could be too much. This is nothing new for Nathan, it wouldn't be his first transfusion and I'm sure it wouldn't be his last. Then once ORL takes over they are operating VERY close to a major vein in his neck that runs right behind his trachea. Ever since he was trached there has been the risk of his trach "rubbing" through his trachea and opening up that vein causing a major bleed - that risk is still there during surgery while the surgeons are in there manipulating things. This is the one that really scares me. This one means there is a very real risk Nathan wouldn't make it out of surgery. I'm living in denial about it and I prefer to stay there.

Protecting his airway - Once Nathan has been extubated and has proven that he can breathe on his own it turns to safety. His vocal cords will not move at all, they won't be able to protect his airway. He is going to have to compensate for that with his swallow technique. He will need to be able to swallow safely for this surgery to be called a success. The first hurdle is his own saliva, if Nathan can't even swallowing his saliva safely this surgery is a complete failure. When I say "swallow safely" that means swallowing without anything going into his lungs, if something does go into his lungs that is called aspiration. He can't aspirate - that's how people get pneumonia. If he can handle his saliva we will move onto actual eating. The hope is that Nathan will be able to swallow safely, even thin liquids. The thinner the liquid is the harder it is to swallow, especially without vocal cords. If he can handle thicker liquids that is just fine with us, he will just be on thickened liquids for a while. If he can't even handle his saliva he will need to be re-trached. It will simply be safer for him to have a trach than live with constant aspiration. A re-trach surgery will mean at least 2 additional weeks in the hospital, and a devestated mommy.

Being a kid - Nathan hasn't breathed without his trach since he was 4 months old, at that time he was immobile and didn't do anything. Nathan has no idea how to run, jump and play and breathe effectively. He will need to prove to the doctors that he can hold his oxygen saturation while being a kid. This will be done in the weeks after he is extubated. He will be on a monitor that will monitor his oxygen level while he is doing things.

Going Home
Nathan needs to be able to breathe on his own to go home.
Nathan needs to be able to safely swallow at least his saliva to go home.
Nathan needs to be able to hold his oxygen saturation to go home.

It doesn't sound like a lot but it is. There are HUGE goals for him, goals Matt and I have had since we first heard that Nathan needed to trach, when he was 4 months old.

When Nathan first got the trach it was devestating to us. It completley changed the course of all our lives, we were suddenly the parents of a child with chronic medical needs. We were a family who depended on Apria (HATE THEM) to keep Nathan safe with his medical equipment. We were a family who couldn't go on vacation without first sending a few boxes full of equipment. We want to be a family who can travel without medical stuff. We want to be a family who doesn't have to live with the constant worry that comes with chronic medical needs. We want Nathan to have as normal a life as possible, and for us that means no trach.

We are hopeful that the surgery will work but aren't counting on it. Read over those possible complications and understand why Matt and I aren't "putting all our eggs in one basket" We want to be realistic, we want to be prepared. Nathan has never had surgery without a complication. We are just expecting the complication that comes with this surgery to be one that causes the trach to go back in.

Sunday, August 14, 2011


We have spent the last two days at my Aunt and Uncles house on Crooked Lake. Nathan loves to go out there to see all our california cousins and go fishing with Aunt Susie. This year while they were visiting my cousin had a lot of his friends visiting as well. They are all in their early 20's, not married with no kids. I didn't think they would be at all interested in the boys and sort of assumed the boys would be an annoyance to them - I remember being that age.

So we got to the lake and were introduced to the people we didn't know (we had met some of them before) and then Nathan wanted to go fishing. Trevor however wanted to stay on the deck and eat, he does love to eat. Trevor and Nathan both had a great time and warmed up to all the new people quickly. I was also very suprised at how all the other people there were with the boys - they were all amazing.

At one point Nathan decided he wanted to play baseball with the other "big boys" so I asked my cousin if he would mind letting Nathan have a turn (they were plaiyng a real game and I didn't want Nathan to be in the way) but he didn't mind. They gave nathan the bat and let him have a turn. He hit the ball and then ran all the bases, all while the others were throwing it around "trying" to get him out. He had a great time running and got a home run (imagine how suprised I was). The whole way home, the part he was awake for, he talked about how he ran fast and won!

Then today we went back to the lake and everyone was again great with the boys. They included them in what they were doing and Trevor loved all the attention. I was just suprised that a group of young adults would be so good with the kids. It was very nice to see Nathan have so much fun with everyone. He was so sad when we had to leave, but Trevor's fever is back so we needed to get him home at a reasonable time.

I got a call today from the Cape Cod hospial, Trevor has a UTI, that is why his fever is so high. I am going to call the pediatrician tomorrow and get a prescription for an antibiotic. Hopefully that will help him feel better for good. He is starting to get sick again. His fever retunred today and he was cranky all day. I'm ready for him to be healthy again.

Saturday, August 13, 2011


We are home from the vacation that wasn't. I'll start my story at the beginning...

We left for Cape Cod on Monday morning, the drive was good. We got to the house we were renting around 1 and started to unpack and unload the cars. We also went grocery shopping to get ready for the rest of the week. Then we met some family at the beach for a night-time concert. It was a good day, as good as a day can be spending it traveling.

Tuesday we went to Provincetown to take Nathan whale watching, he was VERY excited to go on a big boat and see whales. While we were walking around I noticed Trevor was cranky and felt warm, I figured he was getting more teeth. I gave him tylenol and we got on the boat. I was a little nervous since I usually get seasick but this time I was fine. Trevor was very fussy and whined for a while until he finally fell asleep. We saw tons of whales and Nathan was thrilled to pieces to see a whale jump out of the water! He told anyone who would listen that the whale jumped out of the water, he was so happy. Then it was time to go back to the harbor and it started to sprinkle so we all went inside the boat. Trevor was sound asleep in the carrier but was like a furnace on my chest. He slept most of the way in until we were about 15 minutes out then he woke up cranky! He cried and cried until I got up, I started to walk around with him and then a woman says to me "he's throwing up on you" I looked down and Trevor had gotten sick all over. Katherine and I took him outside and stripped him down to get out of the puke clothes, I took my sweatshirt off since that was also dirty and then we wrapped Trevor in my sister's sweatshirt. By this time he was burning up but we couldn't do much for him. When we got to shore we gave him more tylenol and walked to the car. We drove home (a 45 minute drive) and then checked his temperature, it was 105.7. Katherine and I took him to the ER, after Ginny went to the neighbor's house to find out where the hospital was. We spent 6 hours in the hospital with Trevee. They put an IV in him, did bloodwork, urine tests and an x-ray. Everything came back normal so they sent him home with a prescription for "just in case" antibiotics and called it a viral illness.

Trevor was sick until the day we left. He got tylenol every 4 hours all week just to kepe his temp under control. He slept all day every day. He drank apple juice and ate nothing. I watched a lot of TV.

Nathan had a great time with his Aunt Lisa, Aunt Katherine, Aunt Trisha, Ginny, and of course Mimi. They all went to the beach where he got to catch hermit crabs. They went mini golfing, it was pirate mini golf and he still talks about how fun it was. He went into the ocean to kick water at Aunt Lisa and scare her. He had so much fun. He told me he wants to go back to the beach again. He cried when we left, he wanted to go to the beach again.

Finally on our last day Trevor was feeling better so Trevor, Nathan, Aunt Trisha, Aunt Lisa and myself all went to the go-karts. It was going to be fun since Trevor could go on with everyone else. We paid for our ride and then stood in line. We were surrounded on every side by people since it's a fun attraction. Then I hear Lisa say "it just came out" I look over and I see Nathan holding his shirt and starting to panic, his feeding tube had come out and he was scared. Aunt Trisha took Trevor from me and I went to the car to get the syringe to deflate the balloon so I could put the tube back in. Much to my horror I didn't have the syringe with me, I didn't have one at all. That only meant one thing: ambulance. We needed to get the tube back in and that was the only way I could think of. So I asked the woman who worked at the go-kart place to call me an ambulance and explained to her what was going on. She called and then people came. We took Nathan out of line, took his shirt off and used that to stop the bile from coming out the hole and then went to a little seating area to sit down. We sat down and then a police car came, 1 cop was inside. He made sure we weren't in an emergency and then called the ambulance and told them to keep coming. Then the ambulance arrived, with lights and sirens. Nathan was thrilled with the lights and sirens! Then it happened, not 1 not 2 and not even 3 paramedics came out, there were 5 of them, 5 paramedics surrounded us to reinsert a feeding tube. I told them what I needed, they gave it to me and the tube was put back in. Then Nathan panicked that he wasn't going to go on the go-karts and he was going to go in the ambulance. We assured him he was going to get to go in the go-karts and walked back over to wait in line. The whole incident happened so fast that the same people who were behind us (and witnessed the incident) were now in the front of the line. They all let Nathan go ahead of them, it was so nice.

The woman who worked there let Nathan go on twice since he was so brave! It was so nice to see people who were so sweet to him after his little incident.

So our vacation didn't exactly go as planned. Trevor and I never even made it to the beach, oh well there's always next year.

Pictures to come later. I didn't take any since I wasn't involved in any of the fun!

Sunday, August 7, 2011

Of Course

Just thought I'd let you all know that we are leaving for Cape Cod tomorrow morning, so of course that means Nathan now has a fever and says he doesn't feel good. His trach still isn't producing green mucous but I'm bure that isn't far off considering the amount of stuff coming out. Of course he gets sick before we leave for vacation, he'd hate to go away and feel good.

In good news he's now a talking maniac. He can say so many words I can't believe it. Mostly when he speaks a work he will say the vowel sounds for the word, for instance Lisa has become "eeuuhh" but he can say some other consonant sounds, he now calls Grame "mee mee" so she's changed her name to MiMi to acomodate his speach. Sign is still his easier form of communication and when he is speaking a word I don't understand I'll ask him to sign it, and he still signs 98% of the time, but he is saying more now than he was a week ago and that's amazing!

Trevor has decided he's ready to walk. Yesterday Lisa dropped the boys off at my house and stayed so she could watch them while I worked. So we were all hanging out in the living room, Lisa was supervising the boys I was getting ready to throw my phone out the window from frustration and then Trevor just walked across the living room as if he's been doing it forever. Then he turned around and walked back to me, then laughed hysterically.

OK, I'll post pictures once we're back. No internet access while we are there!

Monday, August 1, 2011

Getting Ready

As I write this I shold be getting things ready to go to Cape Cod in a few days but I'm not. I have the big things packed but nothing that any other person would ever even need. I have sterile water, trach ties, HME's, saline ampules, an extra trach, suction catheters...  No clothes yet though, they will be packed this weekend right after I do laundry.

The boys are both doing great. Nathan is in his last week of summer program for preschool. His graduation in next week but we are going to miss it because of vacation. Trevor has started walking a little, he will take a couple steps and then fall down and crawl, crawling is faster for him right now so he likes it better.

Nothing has been going on so I haven't updated much. I have been working a lot to try to compensate for the week I'll be in Cape Cod and the month or so I will be in Boston. We leave for Cape Cod on Monday, Nathan's pretty excited to drive in Grame's car the whole way there. That will leave just Lisa and I in my car with Trevor. Hopefully he'll be good, I plan on bringing snacks to ensure his good behavior.

We've started talking to Nathan a little about his surgery. He knows that we're going to go see the doctor who is going to help him take a nap and while he's napping he is going to get his trach out. He doesn't know much more than that but he's 3 and doesn't need to know much more than that right now. As we get closer to surgery we'll talk with him more about what's going to happen but for right now he doesn't need to worry about it.

Here are a couple pictures of the boys from when we went to visit Matt's parents while they were camping. They both loved the camper and Nathan decided we're going camping next year with Grandma and Grandpa!