March of Dimes

SHARE HOME > SHARE YOUR STORY > ALL SHORT STORIES > BLOGS

MY TE FISTULA STORY

esence22

May 2008

Category: Home

Sun

Mon

Tue

Wed

Thu

Fri

Sat

NEW BEGINNING

May 09, 2008 06:41am (EST)

We have gotten Nathan a new surgeon. I talked with his nurse, who I love, and she agreed that we should try a different surgeon. She said that the surgeon we were using, although good, wasn't here enough (he covers 2 hospitals) and we deserved to have a surgeon who is here more to answer all our questions. So on Monday Nathans surgical services will be transfered. I talked with his old surgeon today and he said they had a department meeting about him (wow!) and they all agreed that he needed a surgeon who is here more since he is so complicated.

Our only obstacle now is getting him eating. Nathan's j-tube came out on Monday and the surgeons decided to leave it out. That is how he has been fed these last few months, so now he needs a new way of eating. He has a g-tube but it's used to drain his stomach, not eating. Now it will be used for eating so it will take a while to get him to full feeds again. Hopefully he will be able to tolerate them and won't need the j-tube put back in, we all hate the j-tube.

His wound is looking better and better each day. They had to start using a smaller wound VAC. I guess the wound is healing nicely and hopefully soon they won't need the wound VAC anymore and will be able to use a regular dressing, which will be nice since the wound VAC has to be changed under anesthesia ever 4-5 days.

His j-tube site closed completley so now he just has a small scar in memory of the j-tube. On Monday he will go for a study to see if the hole in his intestines has closed yet. The doctors all think it has they just want to make sure. As long as the hole is closed and there is no leaking they will start SLOW feeds though his g-tube.

My biggest frustration is the baby he is sharing a room with. I really do understand that they need to share rooms simply because there aren't enough rooms for each baby to have a private room, I really do understand. But the baby he is sharing with is only 5 weeks old and his family can't come visit a lot, so he cries A LOT (I call him the baby who never stops crying). I just want Nathan to have to share a room with an older baby who doesn't cry quite so much. I know we aren't going to get a baby who never cries because all babies cry, but his current neighbor seems to cry more than most. The nurses all understand my frustration so we are on the top of the list for a private room. They think one might open up today but aren't positive. I hope it does!!

My advice to everyone is this: be nice to your nurses!! They can get you things you need/want (like a private room) but aren't going to be as inclined to help you if you're mean/rude to them!!!

Posted by esence22 | Comments: (5) | Permalink

FRUSTRATION

May 06, 2008 09:54am (EST)

It has been an uneventful few days. That being said I am in the worst mood possible. Nathan is doing fine, getting a little better each day. The wound on his abdomen is slowly healing, and the surgeon said that it should be a few weeks before it heals. They won't do his hernia surgery until his abdomen is completley healed so its going to be a little while.

Please notice that I said THE surgeon, not Nathan's surgeon. That's because I haven't seen Nathan's surgeon since last Tuesday (for 5 minutes) when Nathan was in emergency surgery. He came to check in to see how things were. Then he told me that he would take Nathan to the OR on Friday and didn't - it was some other surgeon. And then on monday when he went back for another dressing change it was a third surgeon. THere is no consistency at all in his care. I know all the surgeons speak with one another, but its not the same thing as the same person looking each time and judging to see if the wound is getting better (or worse).

So today I talked to Nathan's nurse about how I was feeling and she said that we could set up a team meeting, and she tried. First Nathan's surgeon's secretary said that he couldn't do it until May 22nd!!! Then she said this Friday, but I shouldn't have to wait until this Friday, so I said I wanted to talk to him WAYYY before that, so now it's tomorrow morning.

I feel like the care hes getting here isn't any different than it was when we were in Albany. And if it isn't any better we may as well go back. This is going to be a long stay and there is no reason to be 3 hours from home if the care isn't any better. Am I being unreasonable? Is it to much to ask that Nathans surgeon come see me every few days just to let me know how things are going? I need some feedback. I feel like its reasonable, but I'm not sure, maybe I'm expecting to much. I am very, very frustrated. It also doens't help that I'm a little lonely

it's no fun being in a city so far from home knowing no one.

Posted by esence22 | Comments: (2) | Permalink

ALL ALONE

May 03, 2008 06:16pm (EST)

So here I am, all alone in Boston Childrens Hospital. Well, I have Nathan with me but Matt went back to work and no one is visiting us right now. My mom was here earlier today and Matts parents are coming tomorrow but I'm all alone now. It's weird sleeping in a hospital when you aren't a patient. I didn't sleep so good last night, I kept waking up to each little sound - usually some other babies alarm (we are right by the nurses station).

So Nathan's surgery went well. He does have a hole in his bowel, somewhere. The surgeon said that on Tuesday night he didn't want to get into a big surgery so he basically just cleaned out the abscess, attached a wound-vac and ended. He did inject some fluid into his j-tube and it all went into the abscess, which is how a bowel perforation was confirmed. Right now we are just waiting for the hole to close on its own. On Friday he was brought to the OR again for a wound-vac change, and hes going again on Monday for another one. Hopefully we will know more on Monday about how long this will take to heal. Once it's healed then we can start thinking about doing the surgery to fix his hernia.

I had so many plans for us this month. Nathan's baptism was one of them. I had asked my sister (who lives in Texas) to be one of his godparents. She already bought her ticket, and we were going to go to the airport and bring Nathan with us to suprise her. So she is still coming but now she is going to have to come to Boston to see us. The baptism was supposed to be on Mothers Day - the same day that his father was baptised. I'm disappointed that it won't be that day, I thought it was special that it was going to be mothers day, and the same day that his dad was baptised. I was supposed to be in a wedding later this month, but I'm not sure I can be since I'm not sure nathan will be out of the hospital. I emailed her (she lives in new zeland and we email rather than call to keep in touch) to let her know. I'm not sure she will understand since she doesnt have kids, but I have to be with Nathan. If I'm not here with him he's all alone since no one else can stay with him in the hospital and Matts parents will be away on a cruise. Matt has to work and is just about out of time to take off. I hope he's out of the hospital by then, but you never know with him.

Hopefully I will sleep better tonight. Well, I can't sleep much worse

I miss home already.

Posted by esence22 | Comments: (4) | Permalink

SURGERY IS OVER

Apr 29, 2008 09:14pm (EST)

He's out of surgery - for now. The doctor didn't really tell us much. I just wanted to do a quick post so you all know that he made it through yet another surgery with flying colors. He is back in the NICU though, but probably only overnight. More tomorrow, for now I need some sleep... I hope I can actually sleep tonight

Posted by esence22 | Comments: (8) | Permalink

TERROR

Apr 29, 2008 05:11pm (EST)

As I write this Nathan is in surgery.... emergency surgery.... I can't even begin to describe the sheer terror that is running through me. I can hardly stop crying long enough to write this. How can my baby be in emergency surgery? How come no one noticed the HUGE abscess that was forming in his stomach? How come I was the one to call attention to it, and not his nurse? How come no one noticed that my baby, who never cries, was crying all morning while I wasn't there? How come no one noticed he was in pain, awful pain?

They believe what happened was that a hole somehow formed in his intestine and it was leaking into his abdomen. Then this morning when I changed his j-tube dressing I saw the unexpected - a huge, red, swollen, hot mass right under his belly button. I called the nurse in and she called in the nurse practicioner, who called in her senior, who called in a surgical resident who called in the attending... and did tests. First an ultrasound, but that didn't give us any results then a j-tube study. With each passing minute I can see the mass getting bigger and bigger, about to burst open any second. Then the assistant injects contrast into his already swollen belly to get a picture of his insides, and it happens - it bursts. The Dr. takes a couple pictures as I panic - it looks like formula coming out, but it isn't his intestine it's coming out of, it's his abdomen, formula shouldn't be in there. I feel like this isn't an emergency for anyone else, just me. No one else seems to care, there are two residents there who both seem to think it's "cool" and both look, for no other reason thatn just to see it. I'm still panicing, I don't know what just happened.

They need just one more picture and we need to wait 5 minutes for the room to open up. I feel like everything I ever learned during these last 5 months slip away. We don't have 5 minutes I want to scream, can't they see my baby in pain and crying?!?!! Finally we go back up to his room and the attending surgeon comes in, tells me he doesn't know whats going on (always reasuring). He needs to open Nathan up and do exploratory surgery. He will be taken down as soon as possible. I call Matt (who needed to go back to work and returned home today) - he's on his way back, doesn't want me to be alone. They're ready for him, hes being taken downstairs.

Then I have to leave, they are taking him into surgery. The doctor said he would be sick after, really sick and on a ventilator (at least with the trach he has a safe airway). He's going to an ICU for a few days until he can be off a ventilator. He will need antibiotics and a lot of them. He won't be eating again for a while and they aren't sure they will leave the j-tube in place, so they aren't sure how they will feed him without it.

I'm scared, really scared. I feel like when I said goodbye to him I was saying it for the last time. What if he has no more fight left in him. What if he's had enough of these surgeries, which seem to be never ending. The doctor said it would be a few hours, two or four. There was no way to know how long it would take since they didn't know what they were dealing with. A nun in the pre-op room asked to say a prayer for him, we all said one together. I'm not overly religious but I hope one of his doctors or nurses is. I hope he's OK and makes it through another surgery...

Posted by esence22 | Comments: (3) | Permalink

BACK IN BOSTON

Apr 25, 2008 07:39am (EST)

So much has happened since I last posted... but it ends with us being back in Boston.

On Monday morning Nathan woke up soaking wet, even his little jammies were soaking wet. So Matt thought it was just the mositure from the humidity he has to sleep with around his neck, so he took him into his room to change him. While he was in there he realized that his j-tube was leaking and he was wet with his food, who knows how long the tube had been leaking - probably hours and hours. So we went to the emergency room, just like we were instructed to do if anything ever went wrong with his feeding tube. We were there all day, and he wasn't getting fed at all so he was getting more and more dehydrated as time went on. Finally they put in a new feeding tube, bigger than the last, and sent us home. We were told that he would probably be a little sore since they had to make the opening for the new tube bigger, but we should just give him tylenol and he would be fine.

Since he hadn't slept all day he was really cranky and tired. We took him up to the NICU so he could see everyone up there for a little while, and so the doctors there oculd see how good he's doing since he was last in Albany. He cried while we were there, we attributed it to being sore and sleepy so we went home to let him sleep a little. We put him to bed early that night and he was asleep before his head his the pillow he has to sleep on.

On Tuesday he woke up and was crankier than he's ever been. He was crying unconsolably and just seemed uncomfortable. When we had started feeding him again with his new feeding tube he had gotten some air that was in the tube, so I thought it was gas and a little soreness. So I gave him the gas drops and more tylenol and we had a nice little family day. All day he was either sleeping or crying, there was no in-between. Family came over in the early afternoon and Nathan seemed to be doing a little better, he was awake without crying for a little while so I thought he was doing OK.

Later in the day after my family had left I took Nathan's temperature since he felt a little warm but it was OK (I dind't think to take into account that he had just had tylenol) so I thought he was a little warm from being held. So we put him into his swing, even though he was crying, and let him cry. We decided that he was just to used to being held and we both needed a break from the constant crying. A little while later his real tears broke my heart so I picked him and realized he was burning up. So we sat on the chair and then I realized that he has nasal flaring and retractions with his breathing (both signs of resp. distress). Matt and I took him into his room and took his temp. again and this time it was high, 101.1 when I stopped taking it, the thermometer never beeped that it was done. I called the Dr. and she said go to the ER (again!!) and see what they say. So off we went.

We got to the emergency room and were put into a room where they took his vitals. His temp. was 102.6 and his 02 was only 91%. Needless to say a nurse and doctor came in immediately and put him on oxygen. They took x-rays and thought he had a diaphragmatic hernia, so he was admitted to the PICU. The next day they did an upper GI study to see where the dye would go and he did indeed had a diaphragmatic hernia, a surgical problem. We told them anything surgical and we would need to go back to Boston. They transfered him four hours later (quicker than last time) by ambulance. So here we are, back in Boston waiting for another surgery.

I think they will do his surgery sometime late next week, they want to get a bunch of tests done first. They also might do a surgery to allow his stomach to empty quicker, which would allow him to eat by mouth (as long as he isn't aspirating)!!! Hopefully early next week we will know what they are going to do and when they'll do it. I knew we should expect to come back to the hospital, I just thought we would have been home for longer than 3 weeks. Oh well, I guess I should be glad we were able to go home at all. It's just hard for me to look at him sitting in his crib and not smiling, he usually smiles all the time. I guess thats how I know he isn't feeling well, I hope he starts to feel better soon.

Posted by esence22 | Comments: (3) | Permalink

ALL ALONE

Apr 16, 2008 01:24pm (EST)

Today was Matt's first day back to work, he actually went to work last night and then had to sleep all day. I thought that him going back to work would be not that much different for me, and it would be an easy transition - boy was I wrong. Nathan is a lot of work for one person to do alone. To make matters worse he had an awful night, his oximiter kept alarming all night (always false alarms) and he thought 4am was a good time to get up and play. I went and looked in at him since he was crying and he smiled at me, it's hard to stay mad when he smiles! So all day it was just Nathan and I. By the time Matt got up at 4 I was crying I was so overwhelmed. Between suctioning him, changing his diaper, giving him his meds., and making sure there was always food in his feeding bag I didn't have 10 minutes to myself. I really wasn't prepared for how much I was going to have to do myslef. While he was sleeping I was trying to stay ahead of the work and I had to clean the suction maching, I had to fill bottles, I got meds. ready to give and I did laundry. To make it all worse he has a bad diaper rash that has made his little butt bleed. To help that I put him, completley naked, on the floor to play so that his butt could air out but he kept going to the bathroom on the mat i put down so i had to keep chaning the pad he was on. Maybe tomorrow I will take my mom up on her offer to come help. I'm glad we don't have the home nurses anymore since they stressed me out more, but the help sure would be nice. I have never been so glad for Matt to wake up in all my life.

Posted by esence22 | Comments: (3) | Permalink

BUSY, BUSY

Apr 11, 2008 06:13am (EST)

Well, its been a while since I've posted last. I know that people who have "normal" babies think they are a lot of work but I think that would be easy. I didn't realize how much work it was going to be taking care of him all day. We have alreayd gotten rid of our home nurses - they were awful. I had two no-shows, one sleeper (who feel asleep while holding him) and one know-it-all who really knew nothing about trachs. and about his medical problems. I felt unsafe with them here so decided it was time to stop the nursing and just do it myself. I love being able to spend my days with him, but boy is he a lot of work. I spend my days cleaning syringes to give more meds, sterilizing pacifiers (I don't want to risk him getitng sick and going back to the hospital), and silencing alarms. I love it though, I love being home. I love being able to look at him when I wake up in the middle of the night.

My only problem is with matt's sister. She has a 10 month old and has no idea how to be sensitive. She came over for dinner the other night and all she talked about was how annoying her baby is. She kept telling me that he's to noisy and she would wish's he didn't make any noise like Nathan. She doesn't want to listen to him anymore because he's so loud. I mean yes, he yells, but he's 10 months old and has just discovered that he can make noise at different volumes. I wish Nathan would be able to do that, but with his trach he can't. She just doesn't understand how hard this is so I try to just let it go when she says things like that but its really hard. I hate being around her, all she ever talks about his how annoying the baby is. I tried talking to Matt about it and I know he talked to her once but it didn't stick. She is one of those people who doesn't filter what they say, AT ALL, so everything she thinks she says - which makes her really rude because she doesn't care about other people's feelings. The worst part is that she was telling us that now she can come see us more, now that we have the baby home. I want Matt to be close with his sister but I hate having her in my life. I guess I just have to deal with it, it just sucks. Sorry, had to vent. Thanks for listening.

Posted by esence22 | Comments: (6) | Permalink

ENTHRALLED

Apr 02, 2008 06:10pm (EST)

I have never been happier in my life. Nathan has finally come home. On Tuesday at about 9, after a few problems with the insurance, our ambulance arrived to pick us up. We got home a few hours after that and tried to get all settled in. It was so nice to be able to put him in his swing, and be alone with him, just the three of us. Every first time mom dreams about having their new little family all together, alone and for me that dream has finally come true.

We do however have home nursing, I didn't really know what to expect. Now I know that I don't really like it. I love having a nurse at night so that I can sleep through the night and not worry that something is going to go wrong (he has an O2 monitor) and I won't wake up for it. I don't really like having a nurse during the day, she stays until 3 and we are alone until his night nurse comes at 11. I feel like I'm not really a mom, the nurse does everything. I was holding him today while she ate her lunch and once she was done eating she came over and told me that she would take him. I know she's just doing her job but I felt like I didn't get to spend much time with him today. His nurse did all the things with him that I should have been doing. She is really nice and I like her, don't get me wrong, I just feel like I should be doing those things myself. She is the one to suction him and change his diaper, she plays with him and holds him while he sleeps. I just feel like I've already missed a lot with him being in the hospital for so long and I don't want to miss any more. I know that we will get into a routine with one another, I'm just having trouble adjusting to a stranger being in my house for 16 hours a day.

Ooops I hear an O2 monitor going off, better go check it out. Probably a false alarm (like usual) but I'd rather be safe than sorry!

Posted by esence22 | Comments: (2) | Permalink

THEY CHANGED THE DATE

Mar 29, 2008 06:50am (EST)

For the first time in our NICU stay the doctors changed something for the better... his discharge date was moved to Tuesday. I am so excited I can hardly sleep, which I should do now since when he comes home sleep will be a luxury (especially since when I call every night the nurse says that he doesn't sleep much at night)!! We have gotten all our equipment and our medical supplies are being delivered on Monday. Then Tuesday at 9am we are supposed to get in the ambulance adn drive home. I can't believe it - after all this time he finally has a discharge date. We have been in the NICU for over 19 weeks and we are finally talking about going home. The one problem that has presented itself is that the insurance company hasn't yet called the ambulance company to tell them that we were pre-approved for the ride. The ambulance company won't make a "reservation" for us until that is done. I hope that gets worked out on Monday. I am a little nervous that our date is going to get moved because of the insurance company, but I'm sure that they will make it happen, they have been (suprisingly) very helpful in the past. I am so so so excited, I'm going to be really disappointed if this doesn't happen on Monday. I already told him doctors if this is an April Fools joke (since Tuesday is april fools day) I won't think it's funny!

Posted by esence22 | Comments: (3) | Permalink

Archives