We are back from our trip to Boston with no distressing phone calls on the drive home. The visit was pretty uneventful and probably one of the shortest times spent in clinic. Now begins the waiting game. As the respiratory virus season approaches, we know for sure that Juliana will not be having surgery. Since she is still on oxygen her surgeon has decided against reanostomosis till at least after the winter. I already knew that plans for surgery were heading in this direction. Our next clinic visit is in two months which is the longest we will have stayed away from a hospital since Juliana's birth.
Our goals still remain the same for now, stay out of the hospital, continue to grow and avoid infection at all costs.
Friday, August 21, 2009
Wednesday, August 19, 2009
Pictures!!!
Off the O2 for a moment... she pulled her tube so Dad took the opportunity to get a pic with a tube/ tape free face
Juliana has to have her own spoon when she eats or we end up fighting. There's no food on this spoon but it's still great for chewing on.
Eating is hard work....
She is actually enjoying sitting in the Bumbo.
She loves her music player... also great to chew on.
Short Gut at Home
Learning to live with short gut at home has been quite an adventure. I am happy to say that after six months at home I have become pretty efficient at handling supplies and routines. It did take some time to get used to everything. Juliana is on oxygen and also receives TPN/ Omegaven through a Brovaic line. She also has an NG tube for feeding and two ostomies for pooping.
Over time I have discovered that being prepared is number one when it comes to ostomy care at home and on the go. I try to always make sure that we have the supplies we need ready to go at a moments notice (sometimes all you get is a moment). Right now ostomy bag changes are a daily event and we are still trying out different bags to see which will give us the most wear time. I have been successful with minimizing the amount of time it takes to change an ostomy bag. I keep a few sets of bags and barrier rings cut and ready to stick for a quick change at all times. This has become very important now that Juliana is maturing and moving all over the place. If it takes too long to change her bag Juliana will surely make a poopy mess all over the place and with a Broviac line that is prone to infection that is the last thing I want to happen.
Organization is the one tool that makes all of this possible at home. We have tons of supplies for everything related to Juliana. I have a dressor set up in the living room with all of Juliana's medical supplies. Keeping everything in one place helps me to stay on top of all our supply needs.
I set up daily bags of the basic supplies we need each day to set up her TPN/ Omegaven. I have found this very helpful for get things set up in a hurry. I can get TPN/Omegaven setup and hooked up in about 15 minutes.
Set up consists of adding the vitamins to the TPN, mix well and then priming (replacing the air in the tube with TPN) the tubing attached.
We then spike the Omegaven and prime the tubing for this as well. After setting up the "Y" extension and priming with saline we connect it all together and we are now ready to hook her up.
Since Omegaven comes in a nice glass bottle not really made for travel, we put Juliana to bed first and hook everything up upstairs. Typically she stays in her crib till the Omegaven is done and then we bring her back downstairs for the day. Her feeding pump and TPN pump fit nicely into on backpack. We use the bag sent for use with the feeding pump. The rear compartment is meant to hold larger feeding bags, but we use it for TPN. Having both in one bag makes travel in and out of the house much easier.
This is the feeding pump in the front compartment and her TPN and pump in the rear.
Since Juliana has become very interested in all her tubing we have to hide everything from her. The blanket trick has been working pretty well. We keep everything under the blanket and then tucked behind another blanket rolled up along the side of the crib. By the way this is Juliana about two minutes after being put in her crib (if only it was this easy to put her big brother to bed)
She is also on oxygen 24/7. We have on big liquid O2 tank in the living room and we use a 50' extender. With the extra length she can go any where in the house including the outside porch. We have two monitors, one for upstairs and one for downstairs. The cable is long enough that I can have one on my night stand at night. The alarm will wake us up and not the kids. When traveling we have refillable portable tanks, but I also make sure to keep a back up cylinder in the car. Since we travel pretty far from home at least once a month, I like to have a security blanket with me.
Over time I have discovered that being prepared is number one when it comes to ostomy care at home and on the go. I try to always make sure that we have the supplies we need ready to go at a moments notice (sometimes all you get is a moment). Right now ostomy bag changes are a daily event and we are still trying out different bags to see which will give us the most wear time. I have been successful with minimizing the amount of time it takes to change an ostomy bag. I keep a few sets of bags and barrier rings cut and ready to stick for a quick change at all times. This has become very important now that Juliana is maturing and moving all over the place. If it takes too long to change her bag Juliana will surely make a poopy mess all over the place and with a Broviac line that is prone to infection that is the last thing I want to happen.
We do have a lot on our plate when it comes to Juliana and I have to remind myself of that sometimes. Not every day is perfect but we do the best we can to make the most of it.
Tomorrow we head up to Boston for our monthly clinic. My fingers are crossed that all will go well. Since surgery is tentatively postpone till at least next spring, our goal from now until then is to stay hospital free. So many prayers will be needed.
Friday, July 24, 2009
No News is Good News
So the past few weeks have been pretty uneventful. We went to our clinic visit in Boston yesterday and of course my anxiety level was up. It's so hard to know how those labs are going to turn out. It's usually when everything seems pretty normal that we end up with an abnormal result. We left the clinic with the understanding that if her electrolytes were out of range they would call me on my cell and we would take her to Yale.
Well no news is good news and everything was in normal range. We made it home last night without a phone call. They did however call me this morning to discuss some changes. Juliana's lung disease causes the doctors to be a little nervous about increasing the volume on her TPN. If she gets too much fluid it can overload her lungs, but if she doesn't get enough fluid she will become dehydrated. Her urine output has been on the low side lately and she has gained a bit of weight this month (yeah!), so they have decided to increase the volume again. She will have labs drawn again in two weeks to see how it all goes and of course we will be watching her very carefully as usual. Next week we will also see her pulmonologist which will be just in time with all of the changes.
If she tolerates the volume increase we will be able to cut back to 18 hours of TPN down from 19 hours. I am hoping that by the end of the year she will be on TPN for 12 hours. Now that she is moving around it would be nice to have one less thing for her to get tangled up in. If she can get off oxygen by the end of the year as well we would only have the feeding tube in the daytime. Right now she has so much I couldn't even imagine how tangled she would get if she were crawling and cruising. When her therapist comes for her exercises I try to eliminate as much as I can (like unpluging the monitor and stopping her feeds) and we still end up tangled.
She is still working on her rolling. She manages to roll on to her belly but gets really frustrated. She isn't holding her head up while on her belly. I think that once she is able to support her weight on her arms and upper body that the belly to back roll will come easily. Juliana has also taken an interest in the little stuffies she's been collecting since birth. She especially likes her Zoe that she tosses around. If you hold Zoe up and make her dance Juliana starts to laugh out loud. It's the greatest sound in the world.
All in all things are going well on the health front. We are still recovering from Omar's layoff last month but he's back at work now and we are making the best of it. I did enjoy spending weekday mornings in the office over spending late afternoons and Saturdays in the office, but we do what we have to do to make it work. We are blessed to have employment at all in the current economy so I take none of it for granted.
Hopefully life will continue to be uneventful (at least until our next planned surgery).
Well no news is good news and everything was in normal range. We made it home last night without a phone call. They did however call me this morning to discuss some changes. Juliana's lung disease causes the doctors to be a little nervous about increasing the volume on her TPN. If she gets too much fluid it can overload her lungs, but if she doesn't get enough fluid she will become dehydrated. Her urine output has been on the low side lately and she has gained a bit of weight this month (yeah!), so they have decided to increase the volume again. She will have labs drawn again in two weeks to see how it all goes and of course we will be watching her very carefully as usual. Next week we will also see her pulmonologist which will be just in time with all of the changes.
If she tolerates the volume increase we will be able to cut back to 18 hours of TPN down from 19 hours. I am hoping that by the end of the year she will be on TPN for 12 hours. Now that she is moving around it would be nice to have one less thing for her to get tangled up in. If she can get off oxygen by the end of the year as well we would only have the feeding tube in the daytime. Right now she has so much I couldn't even imagine how tangled she would get if she were crawling and cruising. When her therapist comes for her exercises I try to eliminate as much as I can (like unpluging the monitor and stopping her feeds) and we still end up tangled.
She is still working on her rolling. She manages to roll on to her belly but gets really frustrated. She isn't holding her head up while on her belly. I think that once she is able to support her weight on her arms and upper body that the belly to back roll will come easily. Juliana has also taken an interest in the little stuffies she's been collecting since birth. She especially likes her Zoe that she tosses around. If you hold Zoe up and make her dance Juliana starts to laugh out loud. It's the greatest sound in the world.
All in all things are going well on the health front. We are still recovering from Omar's layoff last month but he's back at work now and we are making the best of it. I did enjoy spending weekday mornings in the office over spending late afternoons and Saturdays in the office, but we do what we have to do to make it work. We are blessed to have employment at all in the current economy so I take none of it for granted.
Hopefully life will continue to be uneventful (at least until our next planned surgery).
Sunday, July 12, 2009
Happy Birthday!
We made one year and what a long journey it has been. These last few days have been bitter sweet as I remember the events of this past year and how it all started. Fortunately I can focus on the sweet part and have finished beating myself up over the why.
Juliana had a quiet birthday at home. Her brother just had his birthday party the week before and that was enough excitment for all of us. She is now rolling from back to belly but gets very upset because she can't roll belly to back yet. It's pretty funny to watch her do a full roll and then start screaming and kicking her legs up. We have been showing her how to roll back to her back but she just gets too upset. She also has a new interest in pulling on her line (not good at all). I knew this day would come so we are taking many precautions to hide the line to prevent her from pulling it out. It's just really hard to hide and keep it away from the diaper area to avoid infection. I made a sleeve that velcros around the line to keep it out of her site. Hopefull this will deter her for a while.
I think we may be getting teeth soon or at least I am hoping. She has taken a disinterest in her bottle feeds which isn't the end of the world because I have two other ways to give her nutrition (NG tube and her central line). It is however frustrating because ultimately our goal is to have her get all of her nutrition by mouth. I was always so thankful that Juliana didn't have any oral aversions from her lengthy intubations. I am hoping that the reason for this sudden disinterest is that she teething and that she will soon get back to her old bottle gulping self. She is however taking her cereal just fine. She is only taking 1/2 a tsp with formula but the belly seems to like this so we will stay here for a while.
I am not sure if I shared the news of Juliana's hearing loss. It was a bit hard for me to swallow. I am not really sure why because hearing loss isn't nearly as life threatening as chronic lung disease or short bowel syndrome. Juliana has profound hearing loss in her left ear and severe loss in her right ear. At least I can stop telling little Omar to turn the volume down when he is playing his keyboard. She is scheduled to be fitted with an amplification device that will basically turn up the volume for her. She can hear noises that are classified as extremely loud but can't hear noises that are very loud like the vacuum cleaner, alarm clock, or heavy traffic. So this also means that my family will have to become tri-lingual and learn sign language as well as spanish.
Overall things have been pretty normal for us which is more than I could ever ask for. There are some things on our list of summer activities that we have to be very careful about like going to the park or the beach or taking a walk. The weather has been warming up which makes it a little harder to bring Juliana out. She is really crabby when she's hot and we also run the risk of dehydration. I have been in search of a baby sun tent so that we may be able to spend the day outside and still keep her comfy out of the sun. Fortunately it doesn't seem like it's going to get too hot this summer.
I have some videos and pics of Juliana rolling and laughing that I will try to get up soon. It was pretty hard to get her on camera because as soon as I pull it out she stops what she is doing to look at the camera. She is turning into such a character and we are so blessed to have her in our lives.
Juliana had a quiet birthday at home. Her brother just had his birthday party the week before and that was enough excitment for all of us. She is now rolling from back to belly but gets very upset because she can't roll belly to back yet. It's pretty funny to watch her do a full roll and then start screaming and kicking her legs up. We have been showing her how to roll back to her back but she just gets too upset. She also has a new interest in pulling on her line (not good at all). I knew this day would come so we are taking many precautions to hide the line to prevent her from pulling it out. It's just really hard to hide and keep it away from the diaper area to avoid infection. I made a sleeve that velcros around the line to keep it out of her site. Hopefull this will deter her for a while.
I think we may be getting teeth soon or at least I am hoping. She has taken a disinterest in her bottle feeds which isn't the end of the world because I have two other ways to give her nutrition (NG tube and her central line). It is however frustrating because ultimately our goal is to have her get all of her nutrition by mouth. I was always so thankful that Juliana didn't have any oral aversions from her lengthy intubations. I am hoping that the reason for this sudden disinterest is that she teething and that she will soon get back to her old bottle gulping self. She is however taking her cereal just fine. She is only taking 1/2 a tsp with formula but the belly seems to like this so we will stay here for a while.
I am not sure if I shared the news of Juliana's hearing loss. It was a bit hard for me to swallow. I am not really sure why because hearing loss isn't nearly as life threatening as chronic lung disease or short bowel syndrome. Juliana has profound hearing loss in her left ear and severe loss in her right ear. At least I can stop telling little Omar to turn the volume down when he is playing his keyboard. She is scheduled to be fitted with an amplification device that will basically turn up the volume for her. She can hear noises that are classified as extremely loud but can't hear noises that are very loud like the vacuum cleaner, alarm clock, or heavy traffic. So this also means that my family will have to become tri-lingual and learn sign language as well as spanish.
Overall things have been pretty normal for us which is more than I could ever ask for. There are some things on our list of summer activities that we have to be very careful about like going to the park or the beach or taking a walk. The weather has been warming up which makes it a little harder to bring Juliana out. She is really crabby when she's hot and we also run the risk of dehydration. I have been in search of a baby sun tent so that we may be able to spend the day outside and still keep her comfy out of the sun. Fortunately it doesn't seem like it's going to get too hot this summer.
I have some videos and pics of Juliana rolling and laughing that I will try to get up soon. It was pretty hard to get her on camera because as soon as I pull it out she stops what she is doing to look at the camera. She is turning into such a character and we are so blessed to have her in our lives.
Monday, June 22, 2009
Rolling!!!!
Finally Juliana has begun to roll. It's not a full roll, but it is definitely a roll. We have been working on this for quite a while. We first started with getting her interested in her feet. I was trying to get her to grab them with her hands since she adores her hands. She never really grabbed them but did spend a lot of time looking at them and kicking around in her new bouncy seat. One day during diaper change as I am trying to empty her ostomy bag she decides to roll to one side about 60 degrees. I was super excited to see her roll but not very happy with her timing. She seems to favor her left side (of course because the bag on the left usually makes the most mess) but recently has been exploring both sides. Our new goals are to make that 60 degree roll a 90 and then a 180. We have also been forcing her to spend more time on her tummy not sleeping. She usually cries and we try to make the best of it. She still is unable to lift her head and push her upper body up with her arms but we will get there one day. She has been very happy and enjoying her brother so much.
I have been carefully watching her urine output as it has slowed down a little. She had a little increased stool output after we started her on rice cereal once a day. It's really hard to tell when enough is enough. We stopped the cereal for now to let the stool output get back to normal volume and consistency. She's not over stooling but it is slightly increased which may be why her urine has decreased. This is exactly why I refuse to make multiple changes with Juliana. She is so sensitive to change it would be hard to tell what caused what. At least I can take one step back and then try again. In a couple of days I think we will try the cereal again but maybe only a 1/2 tsp. instead of a full one.
I have been carefully watching her urine output as it has slowed down a little. She had a little increased stool output after we started her on rice cereal once a day. It's really hard to tell when enough is enough. We stopped the cereal for now to let the stool output get back to normal volume and consistency. She's not over stooling but it is slightly increased which may be why her urine has decreased. This is exactly why I refuse to make multiple changes with Juliana. She is so sensitive to change it would be hard to tell what caused what. At least I can take one step back and then try again. In a couple of days I think we will try the cereal again but maybe only a 1/2 tsp. instead of a full one.
Tuesday, June 16, 2009
Boston to Yale to Home
So we went up to Children's in Boston for our regular clinic visit. Everyone was amazed to see Juliana. After hearing news about Juliana being on ECMO, many people thought that would be the end for Juliana. Fortunately that was not the case and Juliana is back and better than ever (so I thought). The visit went as usual and Juliana was fairly content after having her afternoon bottle. We discussed increasing her continuous feeds to a rate of 10ml/hr since she was doing very well at 9. After that we were granted permission to start Juliana on some rice cereal mixed with formula and maybe introducing some stage one fruits and veggies. We met with the infection control nurse and started a new ethanol protocol in an effort to decrease the chance of future infection in the line. It seems the surgeons want to wait a little bit longer than I had anticipated for reanastomosis. I actually like this idea better because Juliana will only get stronger with time and the stronger she is the less recovery time she will need. Her lungs are still very weak and will need time to mature. Since we had such a late appointment I decided to hit the road rather than wait for lab results to come in.
Of course this is the time that I get a call on the way home from the hospital. I looked at the caller id and said "oh no". I just knew it was going to be bad. The first question they ask is "how far away are you?" Once again her sodium level was dangerously through the roof. They asked us to come back and I immediately thought back to the last time this happened and all of the driving back and forth from Boston in the middle of the night. Trying to stay awake while driving the rest of the family back home after a 2 am admission to the floor from the ER was just not something I was prepared to do again. I was already half way home and decided to drive straight to Yale where her sodium levels could be safely brought back to normal and I wasn't risking my life driving home in the middle of the night and leaving my baby alone in the hospital for the night. My husband met me along the way, brought me an overnight bag and took the family back home so I could continue on to the ER with Juliana.
We made it to Yale went through the whole admission process which went pretty quickly considering the crowd that was present in the ER waiting area (which I never even sat in). The quickly set up up in a room and then the waiting began. I turns out Juliana has strict orders for no room sharing whenever we are at Yale. I particularly like this idea but it makes it hard to find a room when the pediatric floors are full. We eventually made it upstairs but this time in 7-2 with the school age kids and not 7-3 with the other infants and toddlers. At any rate the attendings at Yale are fabulous. They called Boston first thing and the nutritionists from both hospitals worked together on a new TPN order. I like going to Yale because everyone is so willing to follow Boston's protocols and they really keep me involved in the process. The other big reason is that it is much closer to home.
After re hydrating Juliana and getting her sodium back to normal, they started her up on her new TPN, did some follow labs, and we were headed for home on Sunday. While in the hospital we had some visitors from the PICU and 7-3. It turns out the Juliana has really made a name for herself at Yale. Hopefully this will be our last visit to the hospital till surgery time. We really need to tip the scales. She has spent more of her life in the hospital than at home, so our goal for the next year is to turn those numbers around. I am hoping my next post will be about something a little more mundane like sitting in a high chair.
Of course this is the time that I get a call on the way home from the hospital. I looked at the caller id and said "oh no". I just knew it was going to be bad. The first question they ask is "how far away are you?" Once again her sodium level was dangerously through the roof. They asked us to come back and I immediately thought back to the last time this happened and all of the driving back and forth from Boston in the middle of the night. Trying to stay awake while driving the rest of the family back home after a 2 am admission to the floor from the ER was just not something I was prepared to do again. I was already half way home and decided to drive straight to Yale where her sodium levels could be safely brought back to normal and I wasn't risking my life driving home in the middle of the night and leaving my baby alone in the hospital for the night. My husband met me along the way, brought me an overnight bag and took the family back home so I could continue on to the ER with Juliana.
We made it to Yale went through the whole admission process which went pretty quickly considering the crowd that was present in the ER waiting area (which I never even sat in). The quickly set up up in a room and then the waiting began. I turns out Juliana has strict orders for no room sharing whenever we are at Yale. I particularly like this idea but it makes it hard to find a room when the pediatric floors are full. We eventually made it upstairs but this time in 7-2 with the school age kids and not 7-3 with the other infants and toddlers. At any rate the attendings at Yale are fabulous. They called Boston first thing and the nutritionists from both hospitals worked together on a new TPN order. I like going to Yale because everyone is so willing to follow Boston's protocols and they really keep me involved in the process. The other big reason is that it is much closer to home.
After re hydrating Juliana and getting her sodium back to normal, they started her up on her new TPN, did some follow labs, and we were headed for home on Sunday. While in the hospital we had some visitors from the PICU and 7-3. It turns out the Juliana has really made a name for herself at Yale. Hopefully this will be our last visit to the hospital till surgery time. We really need to tip the scales. She has spent more of her life in the hospital than at home, so our goal for the next year is to turn those numbers around. I am hoping my next post will be about something a little more mundane like sitting in a high chair.
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