E. Coli Pays an Unexpected Visit.....(March)
March came in a flash, and we were already seeing progress from Caitlyn's surgery. Her diaper area was significantly smaller, and i was able to see her cute little bottom, when i never could before! I was in the process of getting Caitlyn enrolled in the Birth-3 program, when suddenly had a drastic change of events.
Unfortunately, I remember the incident too well. It was March 13, and Caitlyn woke up early in the morning painfully screaming and crying. Assumming she was hungry or needed to be changed I sprung into action, however, even after being changed and while being fed she continued to wail. For the last two months, the idea of Caitlyn having colic was discussed and rediscussed, so, initially we assumed she was displaying these symptoms. Her temperature was normal, but nothing seemed to soothe her; not rocking, singing, walking, or feeding her. Finally, I decided that her discomfort had gone on long enough. I had Pete return home from work. In one final effort to calm her, we took her on a long car ride. After what seemed like hours, and driving up and down the same roads, Caitlyn finally fell asleep. It couldn't have been more than fifteen minutes later, and Caitlyn was emitting her painful shrieks, again. After trying to feed and change her yet again, I was exhausted and tried to see if holding her would calm her down. As I walked towards the couch, every movement I made caused her to cry out in pain. She finally was able to sleep in my arms, but her sleep was restless and full of moans and cries. As she laid restless in my arms, I had a horrid feeling that something was terribly wrong. I bent down to kiss her and noticed her forehead was burning hot. I jumped out, causing screams to erupt. In a few short hours her temperature rose from normal to 103.3 F!
We arrived at our hospital in record time, the entire way I blamed myself for not going sooner. She was admitted for an infection, although no one knew what the infection was or what may have caused it. Her leg, with the lymphatic malformation, was very red and swollen, and hot to the touch. At that point in time, everyone assumed her leg was the location of the infection. Being vulnerable because she had just been operated on, I wanted to have Caitlyn's special team of doctors to care for her, and both hospitals were in agreement with that decision. Arrangements we were being made to have Caitlyn transferred back to Milwaukee Children's.
Later that night an ambulance arrived to transport Caitlyn and me to the airport where we would take a jet to the Milwaukee Children's Hospital. What would normally been a three hour drive was only twenty minutes in the jet. It was instant chaos in Caitlyn's room. Nurses came in and our, doctors came in the room with questiosn, and lab work was constantly being taken. I cannot even guess how many times she was poked in the first 24-hour period. The following morning we learned that the blood cultures from our local hospital were already growing bacteria, meaning that whatever infection she had was fast growing and in her bloodstream. It would be at least another day until we would be able to know what her infection was. I stayed by her side, in her crib, all night without sleeping for fear of missing a doctor's visit, or worse.
By the next day, her Pediatrician on the 7th floor told me that Caitlyn was experiencing "significant tachycardia" along with having E. Coli resulting in septicemia which are both life threatening illnesses. Her body was going into shock and there was nothing I could do to help her. The E. Coli didn't come from anything she ate because she was only eating formula. This type of E. Coli came from within her gut and somehow infected her lymphatic malformation and got into her blood stream. There was nothing I could do to prevent this from happening to her, it just happened. That's a scary thought because that meant that it could happen again.
Needless to say
, I was getting more and more worried for her as the hours passed and it didn't seem like she was getting any better. Since I was tired of them poking her so many times, I requested to have a PICC line put in. Dr. Johnson, from Interventional Radiology, the same doctor that did her Sclerotherapy in February, agreed with the idea and decided to put in her line as soon as he could call in his team. By that afternoon, Caitlyn was in the OR and in about 30 minutes she was out with a PICC line in her thigh running up close to her heart. After leaving the recovery room and getting back to her main room, they decided to give Caitlyn some plasma, which was run in her PICC. Now all lab work and antibiotics could run through that line without her having to get stuck by any more needles. Her blood count had gone done trem
endously. Her blood was becoming diluted from all of the fluids that were being pumped into her. The doctors decided to give Caitlyn a blood transfusion. The first time they attempted a transfusion, Caitlyn had a reaction. Her heart rate jumped up and she spiked an even higher fever. They stopped the transfusion. After some discussion, the doctors still wanted to give Caitlyn this transfusion. Since it was taking, what seemed like a long time to me and the PICU doctors for Caitlyn to receive her transfusion, one of the PICU pediatricians decided it would be best for Caitlyn to be transfered there instead of staying on Center 7.
Once transferred to the PICU another attempt was made to give Caitlyn a transfusion. She was pre-medicated first to try and prevent another reaction from happening; it was successful, she didn't have any reaction this time and the transfusion was administered with no delays.
Throughout the day her breathing wasn't getting any better, her heart rate was anywhere from 180-200+. She was still receiving blood but her blood count didn't seem to be getting better. I spoke with Father Niles, who is a very close family relative and we decided that Caitlyn should be baptized right away. I wasn't sure what was going to happen to my tiny baby girl and I thought that having her baptized would be the right thing to do. During the baptism, in Caitlyn's PICU room, I was on the phone with her God-Father, Luke, so he would be apart of it and listen to the whole thing. I twas a very special moment that I will treasure forever.
After the baptism was over, I spoke with the doctors again and it was thought for a while that maybe she was having internal bleeding. We took her down to have a CT Scan done of her abdomen and left leg, but the results were normal, she had no internal bleeding. She also started to receive lasix treatments to help rid a chunk of the fluid that she had been given. This really seemed to help with her numbers and with the extreme tenderness of her left leg. Once she got another blood transfusion her blood count finally started to get better. By that night, Caitlyn finally started to drink from her bottle. She didn't eat much but at least it was something. I was very excited and was hoping that she was starting to feel better. I laid with her all night, and was constantly looking up to watch her numbers. Again, I didn't sleep but maybe an hour or so, I just couldn't take my eyes away from her or her monitors. By the afternoon of the 16th, Caitlyn was moved to the 8th floor and within an hour she was back on Center 7! She was doing better; her numbers were getting better - not great but better. Her leg was becoming softer and softer with each lasix treatment. Things were definitely looking better for her.
The days passe
d, and they stayed pretty much uneventful. Her numbers were getting better and better. The lasix treatments worked so well and were finally stopped, along with the blood transfusions. Caitlyn was eating again, and eating more and more with each feeding until she was back to her normal 8-10 oz. Physical therapy was started and I even had somebody come to her room and teach me the best ways to massage Caitlyn and to help make her feel comfortable. I was getting very anxious to get home, I wanted her around loved ones and it was hard trying to entertain a 3 1/2 month old while sitting in a hospital room. Dr. Johnson did bring Caitlyn another little gift to go along with the green lay that she got on St. Patrick's day from him; he bought a cute little teddy bear from a basketball game that he went to. I had other stuffed animals in her crib, but she didn't even care about those, she just wanted to look and play with that dang green lay!
March 24th finally rolled around and we were headed back home by 9am! We made it home in record time, 12pm we walked through the door and it felt amazing to be back in our own environment! Later that afternoon, Caitlyn's supplies were delivered for her home health care. By 6pm that evening, her home nurse arrived to make sure I knew how to administer Caitlyn's flushes, medications, and the vanco heparin. That night Caitlyn slept in her crib for the very first time and slept completely through the night! She has slept in her crib every since night since and she continues to sleep through the night. Her bedtime is anywhere between 9pm and 10pm and she wakes up at 7am every morning! So if nothing else good came out from her being in the hospital, the fact that she was finished being colicky and she slept in her crib, through the night was good enough for me!
So the month of March had so many ups and downs. Unfortunately, this could happen again. There is no way to prevent her from getting this infection in the future. I talked to an Infectious Disease doctor to see if there was a preventative antibiotic that she could continuously be on to try and keep this from happening again, unfortunately there is not. We will just have to keep a very close eye on her and watch for anything out of the norm. She can go from being just fine, to being so sick in such a short amount of time from an infection like this, so it is a good thing that I am able to stay home with her everyday.
Spring has Sprung!
The month of April was so much easier than the month of March. Caitlyn stayed on her antibiotics until April 4th. After that, her PICC was removed, she had her 4-month checkup and received her immunization shots. She did get enrolled and approved for the Birth-3 program! This is going to be such a good thing in the first few years of her life. Birth-3, I think, will really help her, especially with her physical needs. We will be having a physical therapist come out every 2 weeks to visit with Caitlyn. A teacher will also come visit once a month to make sure all of her cognitive skills are up to par, but I am not too worried about that. They will be getting her things that will help her out a lot, such as a medium size exercise ball to help her with tummy-time. I think she gets pretty uncomfortable with tummy-time because of her leg. They will be buying her toys to help her and even a spica chair to help her when she gets put in her full body cast after her hip surgery. So I feel so lucky that there is a program out there like this that will be helping Caitlyn stay on track for all of her developmental skills.
Sunshine in May!
Unfortunately, I remember the incident too well. It was March 13, and Caitlyn woke up early in the morning painfully screaming and crying. Assumming she was hungry or needed to be changed I sprung into action, however, even after being changed and while being fed she continued to wail. For the last two months, the idea of Caitlyn having colic was discussed and rediscussed, so, initially we assumed she was displaying these symptoms. Her temperature was normal, but nothing seemed to soothe her; not rocking, singing, walking, or feeding her. Finally, I decided that her discomfort had gone on long enough. I had Pete return home from work. In one final effort to calm her, we took her on a long car ride. After what seemed like hours, and driving up and down the same roads, Caitlyn finally fell asleep. It couldn't have been more than fifteen minutes later, and Caitlyn was emitting her painful shrieks, again. After trying to feed and change her yet again, I was exhausted and tried to see if holding her would calm her down. As I walked towards the couch, every movement I made caused her to cry out in pain. She finally was able to sleep in my arms, but her sleep was restless and full of moans and cries. As she laid restless in my arms, I had a horrid feeling that something was terribly wrong. I bent down to kiss her and noticed her forehead was burning hot. I jumped out, causing screams to erupt. In a few short hours her temperature rose from normal to 103.3 F!
We arrived at our hospital in record time, the entire way I blamed myself for not going sooner. She was admitted for an infection, although no one knew what the infection was or what may have caused it. Her leg, with the lymphatic malformation, was very red and swollen, and hot to the touch. At that point in time, everyone assumed her leg was the location of the infection. Being vulnerable because she had just been operated on, I wanted to have Caitlyn's special team of doctors to care for her, and both hospitals were in agreement with that decision. Arrangements we were being made to have Caitlyn transferred back to Milwaukee Children's.
Later that night an ambulance arrived to transport Caitlyn and me to the airport where we would take a jet to the Milwaukee Children's Hospital. What would normally been a three hour drive was only twenty minutes in the jet. It was instant chaos in Caitlyn's room. Nurses came in and our, doctors came in the room with questiosn, and lab work was constantly being taken. I cannot even guess how many times she was poked in the first 24-hour period. The following morning we learned that the blood cultures from our local hospital were already growing bacteria, meaning that whatever infection she had was fast growing and in her bloodstream. It would be at least another day until we would be able to know what her infection was. I stayed by her side, in her crib, all night without sleeping for fear of missing a doctor's visit, or worse.
By the next day, her Pediatrician on the 7th floor told me that Caitlyn was experiencing "significant tachycardia" along with having E. Coli resulting in septicemia which are both life threatening illnesses. Her body was going into shock and there was nothing I could do to help her. The E. Coli didn't come from anything she ate because she was only eating formula. This type of E. Coli came from within her gut and somehow infected her lymphatic malformation and got into her blood stream. There was nothing I could do to prevent this from happening to her, it just happened. That's a scary thought because that meant that it could happen again.
Needless to say
, I was getting more and more worried for her as the hours passed and it didn't seem like she was getting any better. Since I was tired of them poking her so many times, I requested to have a PICC line put in. Dr. Johnson, from Interventional Radiology, the same doctor that did her Sclerotherapy in February, agreed with the idea and decided to put in her line as soon as he could call in his team. By that afternoon, Caitlyn was in the OR and in about 30 minutes she was out with a PICC line in her thigh running up close to her heart. After leaving the recovery room and getting back to her main room, they decided to give Caitlyn some plasma, which was run in her PICC. Now all lab work and antibiotics could run through that line without her having to get stuck by any more needles. Her blood count had gone done tremendously. Her blood was becoming diluted from all of the fluids that were being pumped into her. The doctors decided to give Caitlyn a blood transfusion. The first time they attempted a transfusion, Caitlyn had a reaction. Her heart rate jumped up and she spiked an even higher fever. They stopped the transfusion. After some discussion, the doctors still wanted to give Caitlyn this transfusion. Since it was taking, what seemed like a long time to me and the PICU doctors for Caitlyn to receive her transfusion, one of the PICU pediatricians decided it would be best for Caitlyn to be transfered there instead of staying on Center 7. Once transferred to the PICU another attempt was made to give Caitlyn a transfusion. She was pre-medicated first to try and prevent another reaction from happening; it was successful, she didn't have any reaction this time and the transfusion was administered with no delays.
Throughout the day her breathing wasn't getting any better, her heart rate was anywhere from 180-200+. She was still receiving blood but her blood count didn't seem to be getting better. I spoke with Father Niles, who is a very close family relative and we decided that Caitlyn should be baptized right away. I wasn't sure what was going to happen to my tiny baby girl and I thought that having her baptized would be the right thing to do. During the baptism, in Caitlyn's PICU room, I was on the phone with her God-Father, Luke, so he would be apart of it and listen to the whole thing. I twas a very special moment that I will treasure forever.
After the baptism was over, I spoke with the doctors again and it was thought for a while that maybe she was having internal bleeding. We took her down to have a CT Scan done of her abdomen and left leg, but the results were normal, she had no internal bleeding. She also started to receive lasix treatments to help rid a chunk of the fluid that she had been given. This really seemed to help with her numbers and with the extreme tenderness of her left leg. Once she got another blood transfusion her blood count finally started to get better. By that night, Caitlyn finally started to drink from her bottle. She didn't eat much but at least it was something. I was very excited and was hoping that she was starting to feel better. I laid with her all night, and was constantly looking up to watch her numbers. Again, I didn't sleep but maybe an hour or so, I just couldn't take my eyes away from her or her monitors. By the afternoon of the 16th, Caitlyn was moved to the 8th floor and within an hour she was back on Center 7! She was doing better; her numbers were getting better - not great but better. Her leg was becoming softer and softer with each lasix treatment. Things were definitely looking better for her.
The days passe
d, and they stayed pretty much uneventful. Her numbers were getting better and better. The lasix treatments worked so well and were finally stopped, along with the blood transfusions. Caitlyn was eating again, and eating more and more with each feeding until she was back to her normal 8-10 oz. Physical therapy was started and I even had somebody come to her room and teach me the best ways to massage Caitlyn and to help make her feel comfortable. I was getting very anxious to get home, I wanted her around loved ones and it was hard trying to entertain a 3 1/2 month old while sitting in a hospital room. Dr. Johnson did bring Caitlyn another little gift to go along with the green lay that she got on St. Patrick's day from him; he bought a cute little teddy bear from a basketball game that he went to. I had other stuffed animals in her crib, but she didn't even care about those, she just wanted to look and play with that dang green lay!On the 21st, Caitlyn became a free woman! She was finally taken off the constant monitors and IV fluids. The nurses put vanco heparin in her PICC to keep it from clotting. I could finally take her out of her room and walk around! We almost wore the carpet out walking around in a big circle from one side of the floor to the other side, over and over again. It was better than sitting in her room all day. Gena, Caitlyn's Great-Aunt, came to visit a couple of the days that she was there, and I was finally able to eat and enjoy some adult company. We took her for walks around the floor, and then her Pediatrician said that we could take her off of the floor and walk around the hospital if we wanted. It wasn't even a question, Gena and I took Caitlyn downstairs and walked around the nice open lobby, and then we walked across the skywalk; there Caitlyn was finally able to see some sunlight! I was disappointed when Gena left, but I was so very glad she came!
Good news at last! I was finally told that Caitlyn would be able to come home on the 24th! As long as no other problems came up she would be discharged after 10 days of antibiotics at the hospital. She would then need an additional 11 days of IV antibiotics, a total of 3 weeks, which would be through her PICC, at home. I wasn't nervous at all about giving her antibiotic myself at home, I had watched the nurses administer them to her so much and it really was a simple thing to do. We were also finally able to figure out what was wrong with Caitlyn and her colickyness! When Caitlyn started feeling better she started having episodes of screaming and crying and nothing would help. Her nurse suggested her pain medication: hydrocodone, within 20 minutes she stopped and was ready to go to sleep for the night. The next day, her doctor said that she wasn't going to give a prescription for us to go home with, for hydrocodone if all she had was colic. However, later on that morning Caitlyn had another episode and her Pediatrician got to see it in action. She decided to put Caitlyn back on her Prevacid to help her with acid-reflux, she was on it in the PICU because she wasn't eating for a couple of days and her formula normally helps her with her acid-reflux. Once she was back on Center 7 it was discontinued because she was eating again. Caitlyn had one more episode that night, but after that she hasn't had a single issue since! The third good news that we got was, Caitlyn had been approved for disability! I was so overjoyed I couldn't even stand it! I was finally going to be able to quit my job and be a stay-at-home Mom and take care of Caitlyn the way she needed and deserved!March 24th finally rolled around and we were headed back home by 9am! We made it home in record time, 12pm we walked through the door and it felt amazing to be back in our own environment! Later that afternoon, Caitlyn's supplies were delivered for her home health care. By 6pm that evening, her home nurse arrived to make sure I knew how to administer Caitlyn's flushes, medications, and the vanco heparin. That night Caitlyn slept in her crib for the very first time and slept completely through the night! She has slept in her crib every since night since and she continues to sleep through the night. Her bedtime is anywhere between 9pm and 10pm and she wakes up at 7am every morning! So if nothing else good came out from her being in the hospital, the fact that she was finished being colicky and she slept in her crib, through the night was good enough for me!
So the month of March had so many ups and downs. Unfortunately, this could happen again. There is no way to prevent her from getting this infection in the future. I talked to an Infectious Disease doctor to see if there was a preventative antibiotic that she could continuously be on to try and keep this from happening again, unfortunately there is not. We will just have to keep a very close eye on her and watch for anything out of the norm. She can go from being just fine, to being so sick in such a short amount of time from an infection like this, so it is a good thing that I am able to stay home with her everyday.
Spring has Sprung!
The month of April was so much easier than the month of March. Caitlyn stayed on her antibiotics until April 4th. After that, her PICC was removed, she had her 4-month checkup and received her immunization shots. She did get enrolled and approved for the Birth-3 program! This is going to be such a good thing in the first few years of her life. Birth-3, I think, will really help her, especially with her physical needs. We will be having a physical therapist come out every 2 weeks to visit with Caitlyn. A teacher will also come visit once a month to make sure all of her cognitive skills are up to par, but I am not too worried about that. They will be getting her things that will help her out a lot, such as a medium size exercise ball to help her with tummy-time. I think she gets pretty uncomfortable with tummy-time because of her leg. They will be buying her toys to help her and even a spica chair to help her when she gets put in her full body cast after her hip surgery. So I feel so lucky that there is a program out there like this that will be helping Caitlyn stay on track for all of her developmental skills.
Caitlyn only had one doctor appointment down in Milwaukee on April 26th. It was to see Dr. Johnson for a follow-up on the Sclerotherpy that was done in February. He did an ultrasound of the areas that he worked on and they all looked wonderful! He was very please with the results; I personally wish it would have just gotten rid of those areas completely, but I know my expectations are set way too high. Her next appointments will be on May 11th. Then we will be seeing a pediatric orthopedic surgeon to discuss options for Caitlyn's hip surgery. Then we will be seen in the Vascular Anomalies Clinic to meet with all of Caitlyn's wonderful doctors and talk about the next step of treatments for her.
Caitlyn did have a couple of "firsts" this month. She started sitting in her exersaucer, which she absolutely LOVES! And she got to experience her first thunderstorm and walk in the rain! She slept the entire time is was thundering outside, then again the booms weren't that bad. She hasn't rolled over yet, or even really tried but I'm sure it will happen, it's just going to be a little bit harder for her and that's okay.Sunshine in May!
The fifth month of Caitlyn's life was a pretty good one. On the 5th, Caitlyn started cutting her first tooth and by the 25th she had 2 teeth! I wish she would let me enjoy her being a baby for a while instead of growing up so fast! I can still remember her first day of life as if it were yesterday, the first time I kissed her, and the first time I told her that I love her and here we are five months later. Five months isn't a long time, however I wish it would have went by a little slower.
We saw her vascular anomolies team in Milwaukee on the 11th, there it was decided that Caitlyn would start chemo treatment in June. It was hard talking to her oncologist, Dr. Kelly, about Caitlyn prognosis. He was up front with me and said that patients have passed away from Klippel-Trenaunay Syndrome and even more patients have passed away from the complications that arise from having KTS. It was then and there I decided she would experience everything she can and not hold her back from anything. I don't know how long I will have her so I want to make sure she gets the most that she can out of life.
Not only did she start getting her first two teeth coming in but she started doing a lot of new things too! Caitlyn went for a boat ride and swimming for the first time. On the 20th, we took her for a walk to the park and she played in the grass. On May 24th she even started holding her bottle for the first time!
June was about to be a big month for us, and Caitlyn, so I'm extremely glad that May went by as smoothly as it did. Right around the corner is Caitlyn starting chemo and I am worried, excited, and anxious all at once.
We saw her vascular anomolies team in Milwaukee on the 11th, there it was decided that Caitlyn would start chemo treatment in June. It was hard talking to her oncologist, Dr. Kelly, about Caitlyn prognosis. He was up front with me and said that patients have passed away from Klippel-Trenaunay Syndrome and even more patients have passed away from the complications that arise from having KTS. It was then and there I decided she would experience everything she can and not hold her back from anything. I don't know how long I will have her so I want to make sure she gets the most that she can out of life.
Not only did she start getting her first two teeth coming in but she started doing a lot of new things too! Caitlyn went for a boat ride and swimming for the first time. On the 20th, we took her for a walk to the park and she played in the grass. On May 24th she even started holding her bottle for the first time!
June was about to be a big month for us, and Caitlyn, so I'm extremely glad that May went by as smoothly as it did. Right around the corner is Caitlyn starting chemo and I am worried, excited, and anxious all at once.
