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).
Friday, July 24, 2009
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.
Saturday, June 6, 2009
Going to the Park
So today was my first attempt at bringing Juliana and her brother to the park on my own. Well things didn't quite go according to plan. I arrive home from work ready to go and Juliana's ostomy bags are leaking. So I strip Juliana down and begin changing the bags. While changing her bags Juliana is seeing how crazy she can make her mommy by pulling her nasal cannula down to her mouth and then sucking on it. I put the mittens on her and she is still pulling her cannula. Stuff the mitten with cotton balls and somehow she is still managing to pull her cannula. I then cut circles out of cardboard and stick them in her mittens. Juliana is so determined to suck on her cannula that she chews the cardboard through her mitten making it soft enough that she can get her fingers over the top and pull her cannula again. In the meantime big brother, Omar, decides now is the time to have a meltdown. By the time I get the ostomy bags secure and change her clothes, she is screaming her head off and still fighting me for the nasal cannula. Omar finally settles down and three minutes later this is what I see.
So much for going to the park. I guess I will just have to try again tomorrow when daddy is home.
Thursday, June 4, 2009
Home at Last!!!
So we are finally home and getting back into the swing of things. The first night went very well. Everyone was very excited to have our baby back at home. Her brother couldn't stop giggling when we picked him up and he saw his sister in the car. I could tell Juliana was happy to be back at home when I put her to bed and she smiled and went right to sleep. She spent quite a few nights in the hospital fighting her way to sleep, so it was nice to see her comfortable again.
Juliana is stronger and definitely bigger than ever. She is talking (well baby talking) a lot now and her voice is so strong. She still is not sitting up or rolling but we keep up with our exercises. We are trying to get her interested in her feet but she is still mesmerized by her hands. It's so hard to believe that almost one year ago we started this journey. As she becomes more aware I begin to worry about how all of this is going to effect her in the future. I hope that we will be done with the long term hospitalizations soon. We have one more surgery to go which is causing some anxiety for me. I don't know if I can take another month or two in the hospital but the reality is that I have no choice. She needs to have this surgery or she will never get off TPN and be able to eat like a normal child.
Fortunately her lungs sound great. They actually are the best I have seen/ heard in her whole life. Too bad it took 12 days of rest on ECMO to do the trick, Now that we are home I am able to wean her oxygen and she is doing fabulous. We are taking it slow with only one wean per day and her oxygen sats remain in the high 90's. She is still grabbing on to her cannula and pulling it away from her nose whenever she can. When she does do this her sats drop into the high 80's which makes me very hopeful that she can come off the oxygen within the next month or so.
Now that Juliana is out of the hospital everyone wants to see her. We went to her pediatrician on Tuesday morning and will see audiology on Monday and then off to Boston on Thursday to see what our team thinks and what steps we are going to take next. I am thinking surgery probably in July or August, but her surgeon is unpredictable sometimes so we will have to just wait and see what he thinks.
Juliana is stronger and definitely bigger than ever. She is talking (well baby talking) a lot now and her voice is so strong. She still is not sitting up or rolling but we keep up with our exercises. We are trying to get her interested in her feet but she is still mesmerized by her hands. It's so hard to believe that almost one year ago we started this journey. As she becomes more aware I begin to worry about how all of this is going to effect her in the future. I hope that we will be done with the long term hospitalizations soon. We have one more surgery to go which is causing some anxiety for me. I don't know if I can take another month or two in the hospital but the reality is that I have no choice. She needs to have this surgery or she will never get off TPN and be able to eat like a normal child.
Fortunately her lungs sound great. They actually are the best I have seen/ heard in her whole life. Too bad it took 12 days of rest on ECMO to do the trick, Now that we are home I am able to wean her oxygen and she is doing fabulous. We are taking it slow with only one wean per day and her oxygen sats remain in the high 90's. She is still grabbing on to her cannula and pulling it away from her nose whenever she can. When she does do this her sats drop into the high 80's which makes me very hopeful that she can come off the oxygen within the next month or so.
Now that Juliana is out of the hospital everyone wants to see her. We went to her pediatrician on Tuesday morning and will see audiology on Monday and then off to Boston on Thursday to see what our team thinks and what steps we are going to take next. I am thinking surgery probably in July or August, but her surgeon is unpredictable sometimes so we will have to just wait and see what he thinks.
Thursday, May 28, 2009
The Door is in Sight
Well as her pulmonologist put it today, we can see the front door and are just knocking down all the obstacles in between. She is so close and we are all shooting for Monday. We moved to the floor last Saturday and I must say that I was very impressed by the whole staff on 7-3. The nurses were very attentive and took the time to learn about Juliana and her history. The doctors came into the room and were very interested in hearing my take on the whole situation which is not usually done. In most instances the docs come in say this is what we are going to do and that is that. This usually causes anxiety for me because not everyone understands the big picture with Juliana and more importantly their plan doesn't include all of the details that I need to hear. I am often told that not every parent wants to hear all the fine details. Someone must have given them the heads up. They came in and said let us know what you want to do and it was done.
While in the PICU we met a wonderful intern who has simply amazed me. When she gets the ball she runs with it. She took the time to call Boston and coordinate labs and TPN orders. We are fortunate that she moved to 7-3 on Tuesday. She knows Juliana very well at this point and is very efficient at everything. She doesn't miss a beat and communicates very well with me which is most important.
Today we stopped the ativan and decreased the dose on the morphine. She is tolerating the weans very well and has no signs of withdrawal. We did however have an incident with one of the stitches being pulled from her line. This caused a small superficial wound that began oozing a few days ago. This invites Surgery and Infectious Disease back into the picture. The big concern is that we are running out of access options for Juliana so this line is to be protected at all costs. It's not just a central line, it's our life line. ID wants to pull it and Surgery says no way (as do I). Blood cultures were drawn from both the line and her body. So far all results are negative, but the site is still oozing. Dressing changes are ordered daily till this clears up and she is back on antibiotics. The attendings don't feel like this will prevent her from going home. We can continue to give her antibiotics at home and monitor the situation. The ultrasound and all the lab results lead us to believe that this is not a line infection nor an abcess.
We are now in the process of getting her TPN order into the pharmacy for Monday delivery. We are narrowing down the home meds and readjusting according to Juliana's needs. Also on the agenda is the hearing screening which we have attempted twice unsuccessfully. The hope is to get her hearing tested and her seen by pediatric opthamology before heading home so we won't have to do it out patient. We are all so ready to get her back home again.
While in the PICU we met a wonderful intern who has simply amazed me. When she gets the ball she runs with it. She took the time to call Boston and coordinate labs and TPN orders. We are fortunate that she moved to 7-3 on Tuesday. She knows Juliana very well at this point and is very efficient at everything. She doesn't miss a beat and communicates very well with me which is most important.
Today we stopped the ativan and decreased the dose on the morphine. She is tolerating the weans very well and has no signs of withdrawal. We did however have an incident with one of the stitches being pulled from her line. This caused a small superficial wound that began oozing a few days ago. This invites Surgery and Infectious Disease back into the picture. The big concern is that we are running out of access options for Juliana so this line is to be protected at all costs. It's not just a central line, it's our life line. ID wants to pull it and Surgery says no way (as do I). Blood cultures were drawn from both the line and her body. So far all results are negative, but the site is still oozing. Dressing changes are ordered daily till this clears up and she is back on antibiotics. The attendings don't feel like this will prevent her from going home. We can continue to give her antibiotics at home and monitor the situation. The ultrasound and all the lab results lead us to believe that this is not a line infection nor an abcess.
We are now in the process of getting her TPN order into the pharmacy for Monday delivery. We are narrowing down the home meds and readjusting according to Juliana's needs. Also on the agenda is the hearing screening which we have attempted twice unsuccessfully. The hope is to get her hearing tested and her seen by pediatric opthamology before heading home so we won't have to do it out patient. We are all so ready to get her back home again.
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