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MACE/Mitrofanoff Day 16- Home Routine (irrigation, dressings, etc)

Annie Beth — Sun, 16 Jan 2011 02:44:36 +0000

Home at last. And now to figure out how this all works in the real world….

Since coming home on Sunday, we’ve gotten into a routine. We started doing things one way, adjusted, adjusted back, and so on. We’re really still in a state of flux, but we have things mostly under control. Anna takes Bactrim twice a day, and has Tylenol with Codeine and Ditropan to take as needed. Anna flushes the MACE in the evening, but sometimes we flush it in the morning as well- depending on her diapers. We are drawing warm tap water out of one of those pink hospital buckets. 150ml is all we use for now. The water goes through almost immediately. After the MACE in the evening, (and in the morning, whether or not we do the MACE) we irrigate the suprapubic catheter. In the mornings, we flush about 30-40ml of sterile water through the Mitrofanoff. It comes out the suprapubic. Then we cap the Mitrofanoff and irrigate the suprapubic with about 40ml (draw up 50 and then push in the amount she’s comfortable with and draw it back out- this same water may get pushed in and out 4 times, or if it get gooey, we may get fresh water and do it a second time). In the evening, we do not flush the Mitrofanoff, we just irrigate the suprapubic after the MACE. Bandages get changed about once a day. The stomas tend to ooze mucus, which is normal. Redness and fever would be cause for concern of infection. Goo alone is just goo. You can gently wipe it away with a Q-tip, or wash it away with sterile water.

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Anna is in charge of all the syringes. This makes her feel a lot more comfortable. While an adult does the drawing in and out for the irrigation, Anna pushes the initial amount in to make sure it’s something she’s comfortable with. She also controls how fast the water goes into the MACE. She has good fine motor skills and is adept at controlling a syringe. Here are some pictures of our setup.

First dressing around the MACE/suprapubic.

Mitrofanoff

MACE and suprapubic catheter

Putting the first dressing around the Mitrofanoff.

Second dressing taped over the first.

Tape over second dressing extends across to the Mitrofanoff side.

To avoid putting tape directly on her leg, we wrapped Coban around, taped the end to iteself, and then taped the catheter onto the Coban.

We put a diaper over the dressings. The cap to the tubes are sometimes more comfortable on the outside.

We brought plastic drawers into the bathroom to keep the supplies.

Our Rifton toilet to shower chair.

Syringes for irrigation and flushing.

A box of stuff we are supposed to need after the tubes come out. The hospital ordered it, so I don't really know what's in there.

Sterile water for the bladder. We pour it into the smaller sterile cup (to the left) to draw it into the syringe.

Clean (but not sterile) tub we use to hold the warm tap water for the MACE.

So there you have it. I’m sure this will all change in a week. We have our second post-op visit next Saturday. I’ll update again when we get back from that appointment.

MACE/Mitrofanoff Day 10- Home

Annie Beth — Mon, 10 Jan 2011 03:58:05 +0000

Last night, all went well with the flushing of the MACE. It was rather comical, actually. Dr. Perez said to start with 20ml and continue up to 100ml as long as she tolerated it. We were using warm tap water and a large syringe. Anna was very afraid of the “what ifs” of the situation, but she had much less discomfort than she anticipated- if any at all. After putting the water in, we set Anna up to prop her legs up on the bed (because of her orthopedic surgery) and watch Curious George. We expected a 20 to 30 minute process max. An hour later…. I asked Anna if she had pooped yet. I was relying on her to tell me if she felt anything come out, because unlike on our toilet at home, there was no gap to see through between the seat and the bowl of the commode. The toilet chair was one solid piece. Anna said that no, she had not yet pooped. I was soooo tired at this point. I just wanted to go to bed. In desperation, I went over to the chair and tried to peer into the container without shifting her around too much. Lo and behold- there was all the water and poop, sitting in the bottom of the toilet. Anna was just as surprised as I was. I think she expected it to hurt or be uncomfortable or crampy. It probably all came out within the first few minutes of sitting on the potty, and we could have flushed her suprapubic and gone to bed an hour ago. But, oh well. At least the result was better than expected.

***

I spent the night last night. I usually dislike spending the night in the hospital because I wake very easily. On the suggestion of another mom, I took some Motrin PM to help me sleep. This was a great idea because it also helped with the aches and pains I get from sleeping on firm surfaces. I had borrowed from my mother-in-law a sleeping bag and the pad that goes underneath. This gave me a little more cushion and was quite cozy. I laid it on the bench/couch in the room, tucked the edge of the sleeping bag in between the seat cushion and the back cushion, borrowed a hospital pillow, and I was set. During the night, Anna had to have her suprapubic irrigated 3 times. In the morning, the nurse and I discussed the fact that Anna didn’t drink enough water the day before, making the urine more concentrated. She suggested that drinking more urine would keep the urine dilute and help us avoid clogs.

***

Dr. Perez came to visit at lunch time, bearing gifts. He had an arm full of extra syringes (of varying sizes), prescriptions for saline, Septra, Ditropan, and Tylenol with codeine, extra catheters, tube plugs, dressing supplies, two sets of scissors and tweezers, sterile cups, gloves, and an extra urine bag. He announced that we could leave any time we wanted, and proceeded to inundate us with information regarding irrigation, follow up visits, emergency procedures, etc. After getting everything straightened out, and our discharge papers completed, we finally left the hospital around 3:30pm.

***

Anna’s early evening was spent catching up with her siblings, playing board games, eating dinner, and watching a little TV. We braved the process of MACE flush and suprapubic irrigation at around 7pm. Once again, Anna was wary. However, this time we let her use the syringes to put the water in both the MACE and the Mitrofanoff (tonight we irrigated into the Mitrofanoff and out through the suprapubic instead of into and out of the suprapubic). She did a great job with the syringes and had little to no discomfort. Tonight we heard the poop come out because it was hitting the water in the commode. Anna was very proud of herself and seemed pleased with the situation, despite being sore from surgery. We plan to change the surgical dressings in the morning, do a suprapubic irrigation in the morning, and do the Mitrofanoff/suprapubic irrigation in the evening after dinner, as well as flushing the MACE. We are on Septra twice a day and Ditropan every 6hrs as needed. The pain meds are every 4hrs as needed.

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Sometime in the next couple of days I will take good pictures of our supplies and the surgical site. Then I will try to do a step by step post on how we are following the procedures at home.

Anna plays "Don't Break The Ice" with Ben and Emily.

MACE/Mitrofanoff Day 9- Holding Pattern

Annie Beth — Sun, 09 Jan 2011 02:29:00 +0000

Today was sporadically eventful. The day started off with the permanent removal of TPN. Hooray. We also had our first clog in the suprapubic. Boo. As we have been warned, that was a painful experience. We’ve been flushing it twice a day, but it just got backed up in a short period of time. Contributing to this was the capping of the Mitrofanoff tube. The Mitrofanoff had been draining a little if there was any overflow. With it capped, the suprapubic had to do all the work of draining the bladder. Brad was here during this episode, and he was the one to suggest flushing the tube. He felt she didn’t have as much urine in her bag as she should. He was right on target. They sent 20 ml up the tube and then drew it back out. After that, the pee just started flowing.

***

Today we were supposed to do our first flush with the MACE. Exciting. However, we were in a holding pattern. I’m not sure why, but it took a while to figure out the best way to acquire and use a potty chair. Brad asked me to bring the potty ring from home. I brought the potty ring that our toddlers use on the big toilet to potty train with- you know, the cushion-y kind. The nurses thought I was bringing Anna’s toileting system. I’m not sure they realized how big it was. We have a Rifton that goes from toilet to shower, and has a back, as well as arms, a tray, and a foot rest. It rolls over a normal sized toilet and straddles it. I thought that surely they didn’t mean for me to bring that thing up to the hospital and wheel it down the halls. I’m not even sure we would have been able to cram it into the bathroom. Anyway. The only equipment the hospital had was adult sized, and the nurse was afraid Anna would fall into the hole. So, I suggested we get an adult sized toilet chair and put the potty ring in it to make the seat smaller. Great idea. Except for the fact that for the entire hospital (CMC main and Levine’s Children’s), there was only one person delivering equipment today. As I write this at 8:30pm, the charge nurse is going down to the supply room herself and picking up our chair. Oooh ooh! It just came through the door! Tomorrow I will let you know how it all goes. Once we do the MACE and flush the suprapubic again, Anna will be ready for bed.

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In other news, Anna had a few visitors today. Her friend Hayle came and they had a nice long visit together. Anna is social, and has really cheered up during visits from her friends. Emily (3) and Caleb (2) also got to come up and see their sister today. We are all hoping tomorrow will be our homecoming.

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edit:

We put 100ml of water through the MACE (gradually). Anna was wary of the whole thing and cried, but mostly because she was afraid, not because it hurt. We made sure to put it in slowly and that the water was warm. Right now she is sitting on the toilet chair watching Curious George and waiting for it to come out. It’s all still in there right now, so I will bid you goodnight and report on the end result in the morning.

This is a fuzzy picture from my phone. I wanted to show you how we put the potty ring in the toilet chair to adapt an adult chair to a pediatric size.

MACE/Mitrofanoff Day 8- Solid Foods

Annie Beth — Sat, 08 Jan 2011 00:41:00 +0000

For those of you who know that our family has special dietary needs, I will clarify that Anna, specifically, does not have any food intolerances that we know of. So, although our household is gluten, dairy, food coloring, cane sugar, etc. etc. free (the list actually goes on), Anna gets to eat whatever she wants when she’s in the hospital. That’s why, besides a bite of pancake this morning, her first real meal was a cheeseburger and mac and cheese. But don’t worry folks- for dinner she had pizza and mac and cheese. Nothing like variety in your diet. Excuse me, while I take a bite of avocado now…

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So, while Anna didn’t polish off her entire meal, she did eat what I would consider a decent amount. The nutritionist gave permission for her to be off her TPN from 2 to 6, to see if that would help her eat her dinner. The new bag they put on was for less than 24hrs. The nurse said she expected they would take her off of it tomorrow afternoon if everything is going well. From about 3:15 to 4pm, Anna and I were in the playroom. She graduated from the wagon to a hospital wheelchair. One of those nice, big chairs- three times Anna’s size. We stuffed pillows behind and around her and attached her bags to the sides. She was off the TPN at this time, so the nurse gave permission to disconnect her regular IV as well, so we could travel and play with less hindrances. Good. idea. However, the clock would “strike midnight” at 4pm, when an IV antibiotic was due. Anna enjoyed going to the playroom and watching Mommy try to play the Wii. It really cheers her up because we don’t have a video game system at home. She never played it, but she directed me what to do and got to laugh at my ineptitude. Another enjoyable event was when Trooper, the therapy dog, came to snuggle. Trooper is one of the shelties that come to the hospital to cheer up the kids.

***

Anna had to take Ditropan a couple times today to ease her bladder spasms. She also took Tylenol with codeine at 6:15pm. We noticed that a few minutes after starting to eat, she would have pain. I think it may be gas or some kind of gastrointestinal discomfort. I guess by tomorrow we’ll know a little bit better how things are digesting.

*Cue the shaft of light and singing choir* Soliiiiiiiiids! (Mac and Cheese and Cheeseburgers are part of a balanced breakfast.)

Trooper came to snuggle.

MACE/Mitrofanoff Day 7- Thick Liquids

Annie Beth — Thu, 06 Jan 2011 23:43:11 +0000

Today, Anna graduated from clears to thicker liquids. She’s not as excited about this as one might imagine. For lunch, they sent her a yummy looking strawberry smoothie from “Freshens”. She took one sip and rejected it. Ben (age 6) was there to save the day, though. He slurped down almost the entire thing. Anna is allowed to have anything she doesn’t have to chew, pretty much. Thick soup broths, smoothies- even ice cream. I’ve ordered a Chocolate Boost for her to try this evening. I think her taste buds are a little off, so maybe the chocolate will entice her.

***

While Anna still has her central line and TPN, she did get to ditch the leads. No more heart rate, respiration rate, oxygen, etc. An improvement, although small. The central line was still pulling out, even after the extra tape. The day nurse ended up taking all the tape off, cleaning the site, placing a new cushion around the line, and adding new tegaderm. At my request, we also took some steri-strips and taped the bundle of lines to her neck about an inch above the port. The steri-strips don’t stay on very well, though. A different type of tape would have worked better.

***

Last night we realized she would have twinges of pain when her suprapubic line wasn’t draining. The problem was not mucus but the position she was in. If the pee stayed in the top of the tube (the part laying on the bed) and didn’t make it off the edge of the mattress to drop down into the bag, it would back up just a little bit. If we check on it periodically and move it around, we can prevent this from happening. The only real problem is that when she is in the wagon, her body is down lower than the line. The pee can’t flow up the tube and over the edge of the wagon without a bit of pressure building up. That cut our craft trip short this afternoon. Child Life let us pack up her supplies and take them from the playroom back to her room.

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Last night Brad had a nurse he didn’t prefer. As many times as we’ve been to Levine’s, we’ve never had a nurse that was less than friendly and sympathetic. While not doubting this lady’s ability to preform her job, Brad felt that Anna was not as at ease with this particular individual because she was more brusque. He mentioned this to one of the nurses at the desk, and they were quick to tell him he could both request a particular nurse or request to not have a particular nurse. Once again, Levine’s proves that you don’t have to settle for a less than excellent experience.

Ben's visit made Anna smile. Siblings work wonders.

Anna's "thick liquid", Boost. We need to label it "Drink Me", a la Alice in Wonderland.

MACE/Mitrofanoff Day 6- NG Tube Removal

Annie Beth — Thu, 06 Jan 2011 01:32:37 +0000

Anna had a bad night last night. She had lots of gas pains and finally started pooping. The poop looked like the goo that was coming out of her stomach- which makes sense given the fact she hasn’t eaten anything and was cleaned out for surgery. However, the poop and gas are a good thing in the long run. Because her bowels are working, we were able to remove the ng tube this morning around 8:30. Hooray! But before you start celebrating too hard, she is still on clears, which means we’re keeping the IV nutrition. Anna’s stuck with jello and Popsicles for a while. Of course, jello is much better than no jello and a tube in your nose, so…

***

Today, the nurse demonstrated to us how to flush the suprapubic and Mitrofanoff. Everything has been flowing great so far, but we’re supposed to do it every 8 hours for now, to prevent mucus build up and to make sure the catheters don’t get blocked. We’ll have to do the flushing on our own once we get home. Anna is now wearing her AFOs in the bed. When Dr. Frick removed the plates he said the only way he could get away with not casting her was if we promised to make her wear her AFOs. We didn’t want to have casts on top of this surgery, so we promised to be good. Originally, her legs were bandaged so thick that they didn’t fit into the orthotics. Now they only have gauze and tape, so we had to put the AFOs back on.

***

At 6:00pm Child Life had a craft event on the 8th floor. Anna never wants to get in the wagon, but she has to, so I decided this would be a good excuse to go for a ride. While the overall experience was positive- she made two crafts and I read her a couple of books- we had an unfortunate event while getting into the wagon. Lifting from the bed involves 2 or 3 people because of catheters, possible poop, IV, TPN, etc. etc. etc. This time around, Anna’s TPN line got hung on something and pulled on her central line. It wasn’t a violent tug, but it was enough to pull it away from her neck some, causing pain. We had to add tape to it to keep it from pulling more, and Anna was pretty miffed with us during the whole ordeal. When we put her back in bed after the excursion, we made sure it was a 3 person job instead of just two. One person to lift, one person in charge of the suprapubic and mitrofanoff bags, and one person in charge of the IV lines. Once she starts eating, the IV can go away because it is there mostly for nutrition. We hope that tomorrow she will be able to start eating solid foods. She said the jello “didn’t taste good” today- probably just the effects of meds and having your mouth dry and empty for so many days. We’ve been encouraging her to drink water today to prove that her stomach is handling it. Water is always better in an exciting cup.

This is Anna's Contigo water bottle she got for Christmas. She is more willing to drink from this water bottle than from the hospital cups or even the apple juice containers.

MACE/Mitrofanoff Day 5- NG Tube Clamp

Annie Beth — Wed, 05 Jan 2011 01:48:40 +0000

Today was not very monumental. We had two significant events. Event number one was that Anna’s suprapubic catheter came untaped from her leg. Nothing bad happened, but Dr. Perez was very serious about making sure that it wouldn’t happen again. If it got pulled out in some way, it would be a very bad thing. He put lots of extra tape on it- now Anna looks like she also had surgery on her thigh.

The other even was positive. The suction on Anna’s ng tube was turned off, and the tube was clamped. We were supposed to unclamp it and do suction every four hours if she tolerated it being off for that long. She tolerated it being off for longer than four hours, because we kind of just forgot about it. Oops. There were a lot of small things that distracted both the nurse and me. For one, one of her IV pumps had a bad battery, and wouldn’t quit beeping, even when it was plugged in. The nurse had to find a new unit. We were also checking her lab results constantly to find out about the flu test. As of this writing, the results still haven’t been posted from the lab. Technically, that means Anna shouldn’t be allowed to ride the wagon down the hall because of droplet precautions. She really has to get up and around, though, so the nurses are letting her do it anyway, with explicit instructions not to touch anything. Since we forgot about the tube, Dr. Perez changed the orders to every 6 hours. We are hoping she’ll do great and the tube can come out tomorrow. Otherwise, today was occupied mostly by watching Cinderella, Angelina Ballerina, …..more Cinderella….etc etc. Still blowing bubbles for lung function. Anna no longer has a fever (she had a low grade fever a couple days ago) so that’s another positive.

***

I wanted to take a picture of her surgical site, but I haven’t been here when Dr. Perez comes by. Brad took a picture for me this morning, but unfortunately it is very fuzzy. I am going to post it today, but I will take a better picture later.

Sorry for the fuzzy picture. It was low light. This is Anna's MACE and suprapubic catheter.

MACE/Mitrofanoff Day 4

Annie Beth — Tue, 04 Jan 2011 03:02:21 +0000

Last night Brad was able to get Anna up and into a recliner. He pushed her around the hall a little bit, but it was a brief trip. This morning at 10:30 she was placed in one of those little red wagons that has a pole attached for hanging all your monitors and IV stuff. We took a trip down the hall and read a book in the playroom. After about 15 minutes, she was ready to go back. Anna’s oxygen levels started to stay in the upper 90s, so we took away the oxygen mask. At around 12pm, she was complaining of pain “in her bottom”, which is different than the pain of her surgical site. The nurse said it’s possible she had bladder spasms, and if it continued, we would get Dr. Perez to order something for that. Dr. Perez came by around 7am, so I missed seeing him. Brad said he took the dressings off and looked at the stomas. They must have looked fine because I didn’t hear a report otherwise. Anna had some greenish drainage coming from her bottom. We assumed it was rectal, and planed to talk to Dr. Perez about that when we get a chance. It may be a good sign that things are moving down there.

***

Anna’s little trip this morning seemed to wear her out. Dr. Frick came by and changed the dressings on her legs, but other than that, Anna spent most of the day dozing and watching TV. I got her to blow bubbles a few times to exercise her lungs. Around 6:00pm we got her back out of bed for another trip in the wagon. This time we were out for an entire hour! There were a lot of trips up and down the hall, but we spent a good amount of time in the playroom. We played Go Fish, Connect Four, and Wii Bowling. Ok, so I did most of the “playing”, but Anna partially participated. The only bad thing to come of this was that our IV kept getting occluded. They play room volunteer called for someone to come fix it, but no one ever came. We were busy entertaining ourselves, so by the time we left at 7:00 (when the room closed down) and finally located a nurse, blood had backed up in the line and clotted. Because of the clotting, it was not able to be flushed. Fortunately, the central line has three little lines coming out of it. One for the IV, one for the TPN, and one extra. The nurse just detached the IV line and used the spare. Now we need to make sure it doesn’t happen again because we have no more extra. At some point tonight Anna will have a flu test done because Caleb was diagnosed with the flu at the pediatrician today. Until the results come back tomorrow morning, she is confined to her room, but that shouldn’t be too much of a hardship. We’re still just waiting for the day that the ng tube comes out.

Anna rode in the wagon today. She was supposed to get up at least 2 times.

MACE/Mitrofanoff Day 3- TPN

Annie Beth — Mon, 03 Jan 2011 02:52:55 +0000

The day after surgery has been mostly characterized by sleeping with periodic wakefulness. Anna slept/rested until her morphine wore off. Then she was wakeful until the next time she was able to receive the morphine again. Generally, by the time the two hours were up, she was requesting more pain meds because she had been coughing, which made her tummy sore. The ng tube continued to suck out bloody goop- but not a frightening amount. By the end of the day, we hadn’t quite reached 200cc, which is ok, from what I understand. There was a lot of video watching (or rather video listening, since she often had her eyes closed). Cinderella played so many times that Brad accidentally referred to the anesthesia as Anastasia.

***

Dr. Perez came to visit in the early afternoon. He expressed the hope that Anna would sit up a little more, and perhaps try to move around some. Anna expressed the hope to not do those things. We had a couple periods where her oxygen would drop. Since it looked like she would have to continue to prop the oxygen mask near her face, the nurse added the humidifier to avoid drying out her nose, mouth, and throat. Anna was not allowed to drink anything, but she was allowed to have ice chips. They also provided little sponges on a stick that you could wet and use to dampen your tongue and mouth. They were faintly mint flavored. Anna did not prefer to use them. She swatted us away, so we didn’t press the issue.

***

At 6:00pm, we started TPN. TPN stands for total parenteral nutrition. Sometimes it is referred to as hyperalimentation. Basically, it’s pre-digested food that goes in through your central line. Actually, I don’t think it’s really food, exactly, but it is the nutrients that make up your food- sugars, proteins, vitamins, etc. The bag was hooked up to the IV, and should be running in gradually over a 24hr time period. After that, our next goal is just to get her sitting up. When I left this evening, the nurse was giving her more morphine in hopes that it would make her comfortable enough to sit up in bed, at minimum, but preferably transfer to a recliner. We waited until Daddy got to the hospital for the night because I knew he would be able to help lift her.

These vitals are ok, but not excellent. Oxygen often dipped to 85 and heart rate jumped into the 180's, which is not preferable.

The oxygen (green) now has water attached to act as a humidifier. The Medi-Vac canister is where the goop is going after being sucked through the ng tube.

The TPN bag contains a white, milky looking fluid. It was covered by a special bag that protects the food from light (like those yellow milk jugs).

Top Ten- What To Take To The Hospital

Annie Beth — Sun, 02 Jan 2011 19:06:14 +0000

Wander over to our parent site and check out the “top ten” for hospital visits. Signposts Ministries is our non-profit organization, devoted to bringing you resources such as Lifestyle Accelerator, and providing physical and spiritual assistance to families that face chronic health problems or disabilities. After reading the article, post your own “top ten” to let us know what you can’t stay in the hospital without.

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http://bit.ly/hospitaltopten