The five of us took a walk up the street the other night. I grabbed my camera and took some pictures of the kids near my favorite farmhouse...
Love That Mama Drama
Thursday, April 19, 2012
Childhood Dreams
So I can finally officially come out and say that YES we have moved back to Smithfield and are in the home I grew up in. I know I have posted a bit about this previously, but I now have the permission of Hannah's principal that she may stay at her school through the end of the year so I'd pretty much like to scream to the world how happy I am that we are in this house! I love everything about this house. I love the memories I have as a child and I love hearing my children making those same memories. The lot is just beautiful and embodies everything it means to live in the country right down to our little groundhog living under the shed. The street is breathtaking with it's wildlife, nature and beauty. This time of year has always been my favorite with the trees budding and the birds chirping. I can't wait to enjoy the summer here on Williams Road. There is nothing that feels more home to me...
Thursday, April 12, 2012
Blook Work Results
Yay, I heard from Dr. Lee today and received Layla's blood work results. It took me a bit to process the information and actually figure everything out but the short of it is this: She doesn't appear to have an immune system deficiency. She does have a Vitamin D deficiency which is mild and can be treated with a multivitamin with extra Vitamin D. Easy fix and this is quite common for children with asthma and food allergies. An easier fix would be to move to Florida and play in the sunshine every day... although the likelihood of that happening is slim to none. While she tested positive to tree nuts and walnuts back in 2010, the blood work did not show this allergy this time. However, I think we will be avoiding them just in case. We could do further testing into this, but at this rate I firmly believe that avoiding them would be our best bet. She is also still highly allergic to peanuts. (darn) So it looks like we will still be on high alert in that department. Dr. Lee also feels that she needs the 23-valent Pneumovax Immunization... which when I researched what on earth this meant, I think it simply means the Pnuemonia Vaccine. (Still looking into this to make sure I'm right)After receiving this vaccine, he then will do follow up blood work to retest her immune system.
Where do we go from here? Well we have a follow up with Dr. Lee in 3 weeks. From there we will see how her current cocktail of meds are working out for her. She is currently in the middle of yet another asthma bout, however, upon checking her Pulsox yesterday, we seem so be keeping a big attack at bay. She's on the neb every 4 hours and we have been extremely strict with making sure she is getting her inhalers twice a day along with her Singulair. If she should continue to have these bouts then we may have to add in an Advair or something of those sorts.
We also have a follow up with Dr. Verhave in 3 weeks for the EE recheck to see where we stand with that and if it is contributing to her asthma and allergies. I am curious to see where we stand with this but I have a lot of anxiety about putting her through yet another endoscopy now that she is two years older and can process more of it. That is not going to be a fun day. So back to Boston we go and it sounds like we'll be spending some time up there over the course of the next several months. I'll say again how fortunate we are to have this hospital at our finger tips and only an hour away.
I truly hope that I am not missing anything here. I lay awake at night thinking about this poor kid and what I can do to help her stay well. I rack my brain to see if there is something we are missing or something more we could be doing. I just want this Ravioli well. Period.
Other than that I am just continuing to plug along with work, planning the Father Daughter Dance for Hannah's school, planning Han's 1st Communion, and realizing that the Cannelloni is about to be TWO in only a few short months. My oh my!
Here are the Blood Work results. I like to post them here so when it comes a time to compare, I'll have them in a safe spot! ;)
Layla's lab results are below. Her blood counts show no changes concerning for an underlying immune deficiency. Antibody titers were adequate to 1 of 14 pneumococcal serotypes as well as to tetanus and Hib (PRP). Immunoglobulin levels were normal. Overall, there was the immune evaluation revealed no significant issues.
She has a mild Vitamin D insufficiecy and postive test to peanuts. Tree nut testing was negative.
Recommendation: I would like to further evaluate her immune system to see how well she responds to the 23-valent Pneumovax. This immunization can be given in your pediatrician's office. If not available, then it can be given at our clinic in Children's Hospital. Once this is done, she will need to have repeat measurement of antibody titers one month afterwards.
I also recommend that she start a multi-vitamin containing Vitamin D. Regarding tree nuts – she had a positive walnut skin test in 2010. If you are interested in giving her tree nuts, then she should come back to our clinic for tree nut testing. If negative then I would want to do a challenge to walnuts. If she passes that, then she will only need to avoid peanuts.
04/05/2012 16:29
WBC 7.50 K cells/uL 5.98 - 10.80
Hemoglobin 12.1 g/dL 11.1 - 12.9
Hematocrit 36.0 % 31.8 - 37.0
Platelet 349 K cells/uL 208 - 410
MPV 7.8 fL 7.3 - 8.0
RBC 4.26 M cells/uL 3.89 - 4.67
MCV 84.6 fL H 77.7 - 84.1
MCH 28.4 pg 27.0 - 29.6
MCHC 33.5 g/dL L 34.0 - 35.6
RDW 13.8 % 13.0 - 14.2
HDW 2.51 g/dL L 2.69 - 3.17
Absolute Neutrophil Count 1.64 K cells/uL L 2.29 - 6.36
Absolute Lymphocyte Count 4.91 K cells/uL H 1.46 - 3.78
Absolute Eosinophil Count 0.32 K cells/uL H 0.02 - 0.20
RBC Morphology Yes NA
Neutrophil/Band 22 % L 34 - 78
Left Shift Absent NA
Lymphocyte 66 % H 11 - 59
Monocyte 4 % 4 - 8
Eosinophil 4 % 1 - 4
Basophil 2 % H 0 - 1
Atypical Lymphocyte 2 % 0 - 4
Anisocytosis, RBC 1+ NA
Microcytosis, RBC 1+ NA
Pneumococcal IgG Panel Interpretation See Note NA
Pneumococcus Type 1, IgG 0.46 mcg/mL NA
Pneumococcus Type 12F, IgG 0.28 mcg/mL NA
Pneumococcus Type 14, IgG 0.30 mcg/mL NA
Pneumococcus Type 18C, IgG 0.86 mcg/mL NA
Pneumococcus Type 19F, IgG 0.67 mcg/mL NA
Pneumococcus Type 23F, IgG 0.16 mcg/mL NA
Pneumococcus Type 6B, IgG 0.56 mcg/mL NA
Pneumococcus Type 3, IgG 0.49 mcg/mL NA
Pneumococcus Type 4, IgG 0.08 mcg/mL NA
Pneumococcus Type 5, IgG 6.48 mcg/mL NA
Pneumococcus Type 7F, IgG 0.28 mcg/mL NA
Pneumococcus Type 8, IgG 0.18 mcg/mL NA
Pneumococcus Type 9N, IgG 0.08 mcg/mL NA
Pneumococcus Type 9V, IgG 0.28 mcg/mL NA
PRP (Polysaccharide Ribose Phosphate) 5508 ng/mL NA
Tetanus IgG 1.73 IU/mL 0.15 - 7.00
IgG 667 mg/dL 600 - 1500
IgG1 427 mg/dL NA 290-1065 -
IgG2 85 mg/dL NA 28-315 -
IgG3 29 mg/dL NA 4-71 -
IgG4 31 mg/dL NA 0-90 -
IgA 59 mg/dL 50 - 150
IgM 102 mg/dL H 22 - 100
IgE 159 units/mL 0 - 200
Allergen, Almond <0.35 kU/L NA
Allergen, Brazilnut <0.35 kU/L NA
Allergen, Cashew <0.35 kU/L NA
Allergen, Hazelnut <0.35 kU/L NA
Allergen, Pecan <0.35 kU/L NA
Allergen, Pistachio <0.35 kU/L NA
Allergen, Pine Nut <0.35 kU/L NA
Allergen, Walnut <0.35 kU/L NA
Allergen, Peanut 13.90 kU/L NA
25-Hydroxy Vitamin D 22.9 ng/mL L 30.0 - 80.0
Where do we go from here? Well we have a follow up with Dr. Lee in 3 weeks. From there we will see how her current cocktail of meds are working out for her. She is currently in the middle of yet another asthma bout, however, upon checking her Pulsox yesterday, we seem so be keeping a big attack at bay. She's on the neb every 4 hours and we have been extremely strict with making sure she is getting her inhalers twice a day along with her Singulair. If she should continue to have these bouts then we may have to add in an Advair or something of those sorts.
We also have a follow up with Dr. Verhave in 3 weeks for the EE recheck to see where we stand with that and if it is contributing to her asthma and allergies. I am curious to see where we stand with this but I have a lot of anxiety about putting her through yet another endoscopy now that she is two years older and can process more of it. That is not going to be a fun day. So back to Boston we go and it sounds like we'll be spending some time up there over the course of the next several months. I'll say again how fortunate we are to have this hospital at our finger tips and only an hour away.
I truly hope that I am not missing anything here. I lay awake at night thinking about this poor kid and what I can do to help her stay well. I rack my brain to see if there is something we are missing or something more we could be doing. I just want this Ravioli well. Period.
Other than that I am just continuing to plug along with work, planning the Father Daughter Dance for Hannah's school, planning Han's 1st Communion, and realizing that the Cannelloni is about to be TWO in only a few short months. My oh my!
Here are the Blood Work results. I like to post them here so when it comes a time to compare, I'll have them in a safe spot! ;)
Layla's lab results are below. Her blood counts show no changes concerning for an underlying immune deficiency. Antibody titers were adequate to 1 of 14 pneumococcal serotypes as well as to tetanus and Hib (PRP). Immunoglobulin levels were normal. Overall, there was the immune evaluation revealed no significant issues.
She has a mild Vitamin D insufficiecy and postive test to peanuts. Tree nut testing was negative.
Recommendation: I would like to further evaluate her immune system to see how well she responds to the 23-valent Pneumovax. This immunization can be given in your pediatrician's office. If not available, then it can be given at our clinic in Children's Hospital. Once this is done, she will need to have repeat measurement of antibody titers one month afterwards.
I also recommend that she start a multi-vitamin containing Vitamin D. Regarding tree nuts – she had a positive walnut skin test in 2010. If you are interested in giving her tree nuts, then she should come back to our clinic for tree nut testing. If negative then I would want to do a challenge to walnuts. If she passes that, then she will only need to avoid peanuts.
04/05/2012 16:29
WBC 7.50 K cells/uL 5.98 - 10.80
Hemoglobin 12.1 g/dL 11.1 - 12.9
Hematocrit 36.0 % 31.8 - 37.0
Platelet 349 K cells/uL 208 - 410
MPV 7.8 fL 7.3 - 8.0
RBC 4.26 M cells/uL 3.89 - 4.67
MCV 84.6 fL H 77.7 - 84.1
MCH 28.4 pg 27.0 - 29.6
MCHC 33.5 g/dL L 34.0 - 35.6
RDW 13.8 % 13.0 - 14.2
HDW 2.51 g/dL L 2.69 - 3.17
Absolute Neutrophil Count 1.64 K cells/uL L 2.29 - 6.36
Absolute Lymphocyte Count 4.91 K cells/uL H 1.46 - 3.78
Absolute Eosinophil Count 0.32 K cells/uL H 0.02 - 0.20
RBC Morphology Yes NA
Neutrophil/Band 22 % L 34 - 78
Left Shift Absent NA
Lymphocyte 66 % H 11 - 59
Monocyte 4 % 4 - 8
Eosinophil 4 % 1 - 4
Basophil 2 % H 0 - 1
Atypical Lymphocyte 2 % 0 - 4
Anisocytosis, RBC 1+ NA
Microcytosis, RBC 1+ NA
Pneumococcal IgG Panel Interpretation See Note NA
Pneumococcus Type 1, IgG 0.46 mcg/mL NA
Pneumococcus Type 12F, IgG 0.28 mcg/mL NA
Pneumococcus Type 14, IgG 0.30 mcg/mL NA
Pneumococcus Type 18C, IgG 0.86 mcg/mL NA
Pneumococcus Type 19F, IgG 0.67 mcg/mL NA
Pneumococcus Type 23F, IgG 0.16 mcg/mL NA
Pneumococcus Type 6B, IgG 0.56 mcg/mL NA
Pneumococcus Type 3, IgG 0.49 mcg/mL NA
Pneumococcus Type 4, IgG 0.08 mcg/mL NA
Pneumococcus Type 5, IgG 6.48 mcg/mL NA
Pneumococcus Type 7F, IgG 0.28 mcg/mL NA
Pneumococcus Type 8, IgG 0.18 mcg/mL NA
Pneumococcus Type 9N, IgG 0.08 mcg/mL NA
Pneumococcus Type 9V, IgG 0.28 mcg/mL NA
PRP (Polysaccharide Ribose Phosphate) 5508 ng/mL NA
Tetanus IgG 1.73 IU/mL 0.15 - 7.00
IgG 667 mg/dL 600 - 1500
IgG1 427 mg/dL NA 290-1065 -
IgG2 85 mg/dL NA 28-315 -
IgG3 29 mg/dL NA 4-71 -
IgG4 31 mg/dL NA 0-90 -
IgA 59 mg/dL 50 - 150
IgM 102 mg/dL H 22 - 100
IgE 159 units/mL 0 - 200
Allergen, Almond <0.35 kU/L NA
Allergen, Brazilnut <0.35 kU/L NA
Allergen, Cashew <0.35 kU/L NA
Allergen, Hazelnut <0.35 kU/L NA
Allergen, Pecan <0.35 kU/L NA
Allergen, Pistachio <0.35 kU/L NA
Allergen, Pine Nut <0.35 kU/L NA
Allergen, Walnut <0.35 kU/L NA
Allergen, Peanut 13.90 kU/L NA
25-Hydroxy Vitamin D 22.9 ng/mL L 30.0 - 80.0
Last but not least... HAPPY BIRTHDAY BILLY! Wishing you many more years of happiness and health! XO
Easter 2012
Tub time!
Word Parade Day
My little Bunny
The biggest welt on her back is from the horse allergy... still boggles my mind
TY Easter Bunny!
My latest creation
Surprise Robbie Dobbs! Mom and Dad flew home for your 40th!!!
My Cherubs!
Monday, April 9, 2012
Quick Update
Just a super quick update as to what transpired in Boston with Layla. She was retested for allergies and we concluded that in unison with the peanut, tree nut, soy & cat, she is also allergic to dust mites, tree pollen, dog and severely allergic to horse.... yes horse. As if she has ever been within 10 feet of a horse. Go figure. Horse was definitely the worst as the welt on her back was at least 3 x 3 inches. I am waiting on blood work to come back in regards to some other issues as well concerning a vitamin D deficiency and an immune system deficiency. I am also in the process of making a follow-up appointment with Dr. Verhave. If you remember a few years back Layla was diagnosed with EE (Eosinophilic Esophagitis). I had thought that had resolved itself since she is finally eating better and has started to turn the corner with weight gain. However, Dr. Lee strongly felt that we do a follow up endoscopy to see where we stand with the EE since it can also be known to have little or no symptoms and he feels as though the asthma is connected to it. So we will be heading up for that follow up as well as to see Dr. Lee in 3 weeks. Layla was a trooper throughout the testing and blood work even though I felt as though we tortured her a bit. The kid has good lungs! LOL My friend Shannon rode co-pilot with us and was a huge help with the visit. It was so nice to have someone along for the ride! Layla was easy peasey during the ride and very cooperative. I'm so lucky with her!
She currently started with a cold and has had a low grade fever the past several days, although she seems to be functioning fine. She has had the dry cough but we seemed to have kept the asthma at bay by doing the Neb treatments. Hopefully we can continue to keep it controlled and get her through it quickly!
I'll update more once we have the blood work results in!
Ciao! Hope everyone had a lovely Easter!
She currently started with a cold and has had a low grade fever the past several days, although she seems to be functioning fine. She has had the dry cough but we seemed to have kept the asthma at bay by doing the Neb treatments. Hopefully we can continue to keep it controlled and get her through it quickly!
I'll update more once we have the blood work results in!
Ciao! Hope everyone had a lovely Easter!
Wednesday, April 4, 2012
Tomorrow
Layla has her Boston Childrens Hospital appointment tomorrow. I am anxious to get to it. I have spent the week trying to keep her healthy. Fingers crossed we will prevail in that department. I did hear her coughing a bit last night, but she seemed fine this morning and actually quite happy to be participating in her school's Hop A Thon to support Muscular Dystrophy today. Although her favorite hopping sneakers somehow alluded us this morning and were no where to be found. They adorned her feet just yesterday and today... Poof... vanished. I was able to dry her tears and find a smile on her sparkly face by the time we dropped her off at school. I hold a lot of hope for this appointment mainly because I want to do everything in my power to keep this child out of the ICU. I'm not up for that visit again and neither is she. I want every option explored and I want to figure this thing out. I'm tired of her constantly being sick just as she tired of constantly being sick.
The other two boogers are doing well. Hannah spent the weekend on Long Island with Daddy, Auntie Jill and Uncle Dave. She got to see her first Bruins game at the Coliseum and had quite the time being the center of attention. I'm glad she got to have this time although I did miss her quite a bit. It is Reading Week at her school this week and she is having a grand time involving herself in all the activities. Mr Cam...well is Mr Cam. Crazy, loud, into everything.... yet I wouldn't have it any other way. I really do think it is just a phase and although he can certainly give me a run for my money, he is so lovable and so darn cute. He reminds me so much of Hannah at this age with his intelligence and humor. He is so verbal now and Lord if the child sees a truck and you don't acknowledge it!
Billy and I celebrated our 8th anniversary yesterday. If you call American Chop Suey a celebration! Tuesdays are the worst schedule wise. Hopefully we can find some quiet time next week for the two of us to head to dinner and actually acknowledge the fact that we have been together EIGHT years!
Other than that I am sitting here trying to calm my anxiousness about the next several crazy days. We have a bit of a hectic schedule and I am trying to figure out how I am about to get everything done. I am certain it will get done I just need to talk myself through it. Take a deep breath and be grateful for the day. This too shall pass...
The other two boogers are doing well. Hannah spent the weekend on Long Island with Daddy, Auntie Jill and Uncle Dave. She got to see her first Bruins game at the Coliseum and had quite the time being the center of attention. I'm glad she got to have this time although I did miss her quite a bit. It is Reading Week at her school this week and she is having a grand time involving herself in all the activities. Mr Cam...well is Mr Cam. Crazy, loud, into everything.... yet I wouldn't have it any other way. I really do think it is just a phase and although he can certainly give me a run for my money, he is so lovable and so darn cute. He reminds me so much of Hannah at this age with his intelligence and humor. He is so verbal now and Lord if the child sees a truck and you don't acknowledge it!
Billy and I celebrated our 8th anniversary yesterday. If you call American Chop Suey a celebration! Tuesdays are the worst schedule wise. Hopefully we can find some quiet time next week for the two of us to head to dinner and actually acknowledge the fact that we have been together EIGHT years!
Other than that I am sitting here trying to calm my anxiousness about the next several crazy days. We have a bit of a hectic schedule and I am trying to figure out how I am about to get everything done. I am certain it will get done I just need to talk myself through it. Take a deep breath and be grateful for the day. This too shall pass...
Monday, March 19, 2012
Layla baby
Miss bit seems to be doing better today. Although sluggish and sleepy, her breathing seems to be good. I took her on Friday to the Pediatrician and she was still very tight and wheezy. We upped her treatments again and I continued them throughout the night waking her every 2-3 hours for them, It was a bit of a long evening. I took her back to the Pedi on Saturday and they were happy with how she sounded. Yesterday, I officially gave both her and Cam their last doses of Prednisone so I am hoping that in a few days once it is out of their systems, all will restore to normal at the Murphy household. Maybe Mama can get her some sleep?
I have a call into Boston to see if we are better off at their Allergy Center or their Pulmonary Center. Again why I love BCH... they have specialist in each aspect of every disease possible. Hopefully we can get an appointment in the near future and see what else we can be doing for her. In the meantime, I seem to be a bit of a stress ball about the situation. Borderline neurotic. I can't help it. I don't care what people say or think about me. I am going to do whatever is humanly possible to keep her as far away from her triggers as possible. At least until we can figure this thing out and find out exactly what her triggers are.
...and I just got the callback. She's meeting with John Lee of the allergy clinic on April 6th.
That's all I have for today. Happy Monday!
I have a call into Boston to see if we are better off at their Allergy Center or their Pulmonary Center. Again why I love BCH... they have specialist in each aspect of every disease possible. Hopefully we can get an appointment in the near future and see what else we can be doing for her. In the meantime, I seem to be a bit of a stress ball about the situation. Borderline neurotic. I can't help it. I don't care what people say or think about me. I am going to do whatever is humanly possible to keep her as far away from her triggers as possible. At least until we can figure this thing out and find out exactly what her triggers are.
...and I just got the callback. She's meeting with John Lee of the allergy clinic on April 6th.
That's all I have for today. Happy Monday!
This is how we spent most of our weekend
My little Leprechaun
What happens when you live in a house full of girls!!! LOL
Friday, March 16, 2012
Layla
Soooooooooooo it seems as though we have had a few traumatizing days in the Murphy household. Tuesday night, Billy and I were up all night taking care of both Layla and Cameron. Cameron woke up out of the blue barking like a seal. Now I know both of my girls have had croup in the past, but I don't think I have ever heard the cough like this. Billy was totally freaked out. Layla was having yet another asthma flare up and just kept coughing so I knew we'd be calling the pediatrician in the morning. To be quite honest, Layla has had these flare ups quite often the past several months and for the most part, I usually feel as though I have them under control with meds, nebs, etc.. I really just made an appointment for her just to make sure her oxygen level was ok and I was mostly concerned about getting Cameron treated. In we go at 11:30 and by the love of God we were seeing Dr. Sowa. We hardly ever get to see her anymore as she is in several different offices. Fairly quickly it is determined that Cam indeed has the croup and we'll just give him some prednisone. In the meantime, the nurse does the Pulsox test on Layla and the level is reading 80. I could see the nurse getting a little nervous although she was trying to hide it. She runs to get another machine and again it reads 80. We start her on a neb right away and and the O2 reading goes up to 84-85 and then drops down again. They put her on another neb back to back and Dr. Sowa says, "Hey is there anyone that can watch Cam for you because I am thinking you're going to make a visit." Of course she says this so calmly,. Again, why I love her. She knows just how to handle me and exactly what to say. Especially going through everything I did with Hannah. So I start making phone calls to see who can watch Cam because I know this means we are heading to Hasbro. Thankfully Auntie Paula was not working and we made plans to meet in Smithfield so I could head to Hasbro with Layla. I tell Dr. Sowa the plan and she looks at me wide eyed and says, "Um, can you have her come here to get him because you're about to leave." In walk the EMT's. I quickly make the phone call as the nurses grabbed Cameron who was screaming his head off. I muster up an excited voice and manage to tell Layla that we are going on an adventure. I think my voice only cracked once. She got excited which was all I needed to keep going. "Yep, baby an adventure like Dora and Boots! Wait til we tell Hannah!!!!" I gave Cam a kiss and only had about a second to panic about the fact that I was leaving him at the Dr.'s office alone. Granted he was in the best of hands, but if I had more time to think about it I would have been a mess. His screams were breaking my heart. Layla was being strapped into a car seat on a stretcher with a smile on her face. God bless her and her brave soul. I jumped in and off we went. She was on her third neb at this point and she was so good about it. I just kept talking to her and telling her how cool it was that the sirens were on and how I couldn't wait for her to tell Daddy all about our adventure. I quickly texted Billy and told him what was going on. I asked him to please call Auntie Paula to make sure Cam was alright and that I would fill him in as soon as possible.
We were admitted to the ER around 12:15 and they started another neb. I think she had 6 in total before they decided they needed to do something else. Her chest was caving in when she was breathing and her breathing was extremely rapid. This was probably the only time I started to really panic. Watching her little body working so hard to breathe was an awful sight. The doctors for the most part were being so calm although they were concerned about how much her chest would suck in when she was trying to breathe. I seriously wanted to scream and tell them all to get in the room and fix her. I guess when you're in these situations you tend to lose your cool while the professionals are taught to remain calm. Her O2 was still lingering at 88-89 and so they put her on oxygen. I did like her ER doc and she finally decided to try something else. They decided to give her a muscle relaxing med intravenously. Its the same med that they use to stop preterm labor. They put the IV in and began the Magnesium Sulfate. (Again such a trooper with the IV. It helped to have Princess stickers to cover it with!) Only then did I begin to see a difference in her breathing. It relaxed her muscles enough so that she wasn't struggling and working so hard to breathe, allowing the meds to get to her lungs much easier. Finally, she broke a 90 on the Pulsox. It was around this time that Billy arrived and I was thankful to be able to walk outside, get a breath of fresh air and make some phone calls. Thankfully Cameron was doing well, although it did take Auntie Paula and three nurses to get him in the car seat. Yep, I pretty much traumatized him. Grammy was able to pick up Hannah from school and she was all set, so back in I went after updating the rest of the family.
She was admitted to the Pediatric Intensive Care Unit around 4:30 and we got settled up there with some great nurses. She was breathing much easier and by now I was much calmer. She was put on a 3 hour continuous neb. Let me tell you, this kid is a Rock Star. Holding that tube in her mouth for three hours. A four year old. Imagine. This child is so special. Breaks my heart that of all the things I could have passed down to her, it was my asthma. She's so little and frail and yet so full of love. I can't imagine my life without her. She is one of a kind. I jumped in the hospital bed and just held her. We were able to watch movies and that was perfect for my princess who was still wearing a tutu at this point! While her breathing was much better, the steroids began to take over. Anyone who has ever had a child on Prednisone, knows how mood altering this drug can be. A miracle for healing, a devil with it's side affects. Around 2am she woke up screaming, crying and kicking. (I had flashbacks of Hannah) For three hours nothing would calm her down. It wasn't until about 5:30 am did she finally fall back to sleep. She woke up at 7am bright eyed and bushy tailed, "Good Morning Mommy!" Mommy was a bit slower to rise.. LOL Her Pulsox had gone up to 97! Yay! We played with toys and colored before we were given the news that we would be able to break free. Dr. Sowa came to visit and helped to come up with a plan of action. #1. Keep her in a bubble #2. Head up to Boston Childrens and get her a damn good asthma specialist and #3. Give Mommy a large glass of wine!
Daddy and Cam came to get us and we quickly got settled at home. She had a decent night and was able to sleep however she did wake up very wheezy and tight. We are heading back to the Pedi this afternoon for a follow up so I am hoping we will be at a good Pulsox rate and that it's just going to take a few more days for her to turn the corner. We also need to get her on some antibiotics for her double ear infection. I forgot to mention she had that as well.
So now emotionally I am all over the board. I'm pissed that she got this trait. All of her meds have been upped obviously and I know that this is what she needs. However, the side affects are going to be brutal. My non sleeper to begin with, I fear her sleeplessness will only get worse. These meds make you very jittery and speed up your heart rate. No sleep equals a cranky kid. They also make you snap out of the blue. She's just so sweet and loving, I don't want to see that change. I'm also a flipping mess now thinking about whats in store for us. We are heading into what is supposedly going to be the worst allergy season to date. What does this mean for her? How will I know when it's time to head into the ER? Seriously, I am getting my own Pulsox Machine. I don't give a damn if I make myself crazy with it. I'd rather be crazy checking her all the time then wondering, should I take her or not. I seriously want to keep her in a bubble and I'm going to have to make some better decisions for her and keep her away from things that trigger her attacks. I am hoping that people will be understanding of this.
The whole time we were in the PICU I just kept thinking Thank God her stay is only temporary. I cant imagine the families that spend months on end with children in there. The families who have to watch their child suffer with cancer day in and day out. I was very grateful to have the Lord looking over us and protecting us. My heart truly goes out to those families who have to endure watching their child so sick. I'm thinking that when the dust settles, we are going to need to be a little bit more involved with Hasbro and do some feel good fundraisers.
For now, I'm just going to curl up with my girl and watch some Scooby Doo...
All my love..
Being Brave
We were admitted to the ER around 12:15 and they started another neb. I think she had 6 in total before they decided they needed to do something else. Her chest was caving in when she was breathing and her breathing was extremely rapid. This was probably the only time I started to really panic. Watching her little body working so hard to breathe was an awful sight. The doctors for the most part were being so calm although they were concerned about how much her chest would suck in when she was trying to breathe. I seriously wanted to scream and tell them all to get in the room and fix her. I guess when you're in these situations you tend to lose your cool while the professionals are taught to remain calm. Her O2 was still lingering at 88-89 and so they put her on oxygen. I did like her ER doc and she finally decided to try something else. They decided to give her a muscle relaxing med intravenously. Its the same med that they use to stop preterm labor. They put the IV in and began the Magnesium Sulfate. (Again such a trooper with the IV. It helped to have Princess stickers to cover it with!) Only then did I begin to see a difference in her breathing. It relaxed her muscles enough so that she wasn't struggling and working so hard to breathe, allowing the meds to get to her lungs much easier. Finally, she broke a 90 on the Pulsox. It was around this time that Billy arrived and I was thankful to be able to walk outside, get a breath of fresh air and make some phone calls. Thankfully Cameron was doing well, although it did take Auntie Paula and three nurses to get him in the car seat. Yep, I pretty much traumatized him. Grammy was able to pick up Hannah from school and she was all set, so back in I went after updating the rest of the family.
She was admitted to the Pediatric Intensive Care Unit around 4:30 and we got settled up there with some great nurses. She was breathing much easier and by now I was much calmer. She was put on a 3 hour continuous neb. Let me tell you, this kid is a Rock Star. Holding that tube in her mouth for three hours. A four year old. Imagine. This child is so special. Breaks my heart that of all the things I could have passed down to her, it was my asthma. She's so little and frail and yet so full of love. I can't imagine my life without her. She is one of a kind. I jumped in the hospital bed and just held her. We were able to watch movies and that was perfect for my princess who was still wearing a tutu at this point! While her breathing was much better, the steroids began to take over. Anyone who has ever had a child on Prednisone, knows how mood altering this drug can be. A miracle for healing, a devil with it's side affects. Around 2am she woke up screaming, crying and kicking. (I had flashbacks of Hannah) For three hours nothing would calm her down. It wasn't until about 5:30 am did she finally fall back to sleep. She woke up at 7am bright eyed and bushy tailed, "Good Morning Mommy!" Mommy was a bit slower to rise.. LOL Her Pulsox had gone up to 97! Yay! We played with toys and colored before we were given the news that we would be able to break free. Dr. Sowa came to visit and helped to come up with a plan of action. #1. Keep her in a bubble #2. Head up to Boston Childrens and get her a damn good asthma specialist and #3. Give Mommy a large glass of wine!
Daddy and Cam came to get us and we quickly got settled at home. She had a decent night and was able to sleep however she did wake up very wheezy and tight. We are heading back to the Pedi this afternoon for a follow up so I am hoping we will be at a good Pulsox rate and that it's just going to take a few more days for her to turn the corner. We also need to get her on some antibiotics for her double ear infection. I forgot to mention she had that as well.
So now emotionally I am all over the board. I'm pissed that she got this trait. All of her meds have been upped obviously and I know that this is what she needs. However, the side affects are going to be brutal. My non sleeper to begin with, I fear her sleeplessness will only get worse. These meds make you very jittery and speed up your heart rate. No sleep equals a cranky kid. They also make you snap out of the blue. She's just so sweet and loving, I don't want to see that change. I'm also a flipping mess now thinking about whats in store for us. We are heading into what is supposedly going to be the worst allergy season to date. What does this mean for her? How will I know when it's time to head into the ER? Seriously, I am getting my own Pulsox Machine. I don't give a damn if I make myself crazy with it. I'd rather be crazy checking her all the time then wondering, should I take her or not. I seriously want to keep her in a bubble and I'm going to have to make some better decisions for her and keep her away from things that trigger her attacks. I am hoping that people will be understanding of this.
The whole time we were in the PICU I just kept thinking Thank God her stay is only temporary. I cant imagine the families that spend months on end with children in there. The families who have to watch their child suffer with cancer day in and day out. I was very grateful to have the Lord looking over us and protecting us. My heart truly goes out to those families who have to endure watching their child so sick. I'm thinking that when the dust settles, we are going to need to be a little bit more involved with Hasbro and do some feel good fundraisers.
For now, I'm just going to curl up with my girl and watch some Scooby Doo...
All my love..
Being Brave
Neb after Neb
Finally a popsicle!
Good morning Mommy!
Maybe she'll be a doctor someday????
YAY! Breaking out! Riding home with my new doggie "Adeline"
Home Sweet Home!
Happy to be with her sister again!
Thursday, March 8, 2012
Whirlwind
The past several weeks have been so crazy busy! Yikes! LOL I only have a few moments to update so here goes! We have been running to and fro between dance, hockey, CCD and the 8 gazillion other things our family is involved in. Thankfully, we did get to escape the hectiness and we headed on down to sunny Naples to visit Mom and Dad! We survived the travelling with Mr. Cam and arrived in the gorgeous 80 degree weather unscathed. We spent the week taking it easy and enjoying each moment. From the pool to dinner to walks and excursions, it was exactly what we needed. The kids were excellent and so well behaved. We even headed out on an air boat ride in the Everglades. This was something that was so thrilling for me as I had never imagined ever doing anything like this. I don't get to travel and see the world much so these things amuse me. To see the wildlife and the gator infested waters was pretty awesome in my book! The kids loved it, Billy loved it and I had a blast. Mama even held herself a 30 pound "baby" alligator. Can't say I have ever done that before. Needless to say the week went by so very quickly. Hannah and I left in tears. I hated saying goodbye and I hated coming back to the craziness and routine even more! Thankfully, Spring is right around the corner and things always seem so much better then.
So now I am playing catch up. Work has been insanely busy for me. I cant keep up! I'm also diving into planning Hannah's Father Daughter dance full throttle. I have a great committee and some great ideas that I cant wait to see come to fruition! It should be a blast. The kids are all back in their routines and sports schedules and we are very much looking forward to the weekend. Hoping the weather stays as beautiful as it is today!!! Love to you all! xo
PS: 24 pounds and counting! I'm one happy Mama!!!
So now I am playing catch up. Work has been insanely busy for me. I cant keep up! I'm also diving into planning Hannah's Father Daughter dance full throttle. I have a great committee and some great ideas that I cant wait to see come to fruition! It should be a blast. The kids are all back in their routines and sports schedules and we are very much looking forward to the weekend. Hoping the weather stays as beautiful as it is today!!! Love to you all! xo
PS: 24 pounds and counting! I'm one happy Mama!!!
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