Tuesday, February 15, 2011
The night before
After a brief postponement due to influenza b, Maggie will be going into CHOP tomorrow for her endoscopy and insertion of her ng tube. As I get ready to put Maggie to bed, I can't help but think about the fact that this may be the last "normal" night of putting her to bed for a while. After tomorrow, she will have a tube in her nose, going down her throat and into her stomach to receive nightly feedings of formula by a pump. We will learn a new normal as we adjust and I am sure we will be fine, but there is a little sadness in my heart tonight.
Monday, February 7, 2011
February 7, 2011, 1:08pm. For six weeks we have planned for this day and thought we would be finished with yet Maggie's third endoscopy and the new insertion of the ng tube. For six weeks I have gone from sadness, to acceptance, to fear, to sadness, to wisdom and finally acceptance and readiness to begin this journey. Back on December 29th we were told Maggie would need an ng feeding tube to supplement her eating because her weight and height had leveled off for 9 months. We have been trying an appetite stimulant since with early success but nothing lately. I know now this is the right thing for her to grow and thrive. I actually came to a point of looking forward to it.
CHOP has been wonderful getting us ready as well as my many extremely supportive friends, especially those who have been through what we are going through now. The plan was going to be perfect: today would be the scope in the OR and they would place the tube while she was under anethesia. Best you can get when it comes to this. Then a stay in the hospital for a few days to adjust and get trained. Friends have been amazing! Everyone helping where they can and had everything lined up. Best laid plans right? You guessed it, a wrinkle, a big wrinkle!
Last Thursday, Maggie started getting a little stuffy, then woke Friday with a low grade fever. Still hopeful, we have her until today to get better but she has a higher fever and a cough. The plan, the hope for today melted away as I made the dreaded phone call to cancel her procedure. I had prayed and others had prayed and prayed! The highlight though was when the phone rang at 8:00am from CHOP...rescheduler? No, Dr. Grossman himself to checkon Maggie and see how she was feeling. We talked options like having her come in for the tube anyway, but the virus she has would cause her to be isolated so that didn't sound good, or wait. After a very nice conversation we both agreed to wait until she feels better and call the scheduler. He truly expressed his care for Maggie and understood our disappointment. I hung up at least knowing that he will do whatever is best for her and we are on a team here. Now if only the OR was on our team.
Next call to Lisa the scheduler...been here before...me, "Dr. Grossman needs us to reschedule as soon as we can." Lisa, "We can get her in March 4th." WHAT?! I can't go through 4 more weeks of waiting for her to get what she needs and for us to know what is going on inside her. And I can't wait 4 more weeks for another virus to come along and postpone it again. I am now praying on Dr. Grossman and that he can work something better out for us.
In the meantime, I guess I will be back to work but I am scared to send her back to preschool to catch another bug. Does FMLA cover prevention of further illness? ;) Oh I am just in so many places emotionally right now. First I was scared for her to get her ng tube but after finally coming to terms with number one, this is a chronic illness, 2, she really hasn't grown and 3, I know our doctors are the very best and she will be better for it, I am ready. It's like standing at the starting line for a race you've trained a year for and the damn guy won't fire the start gun!
CHOP has been wonderful getting us ready as well as my many extremely supportive friends, especially those who have been through what we are going through now. The plan was going to be perfect: today would be the scope in the OR and they would place the tube while she was under anethesia. Best you can get when it comes to this. Then a stay in the hospital for a few days to adjust and get trained. Friends have been amazing! Everyone helping where they can and had everything lined up. Best laid plans right? You guessed it, a wrinkle, a big wrinkle!
Last Thursday, Maggie started getting a little stuffy, then woke Friday with a low grade fever. Still hopeful, we have her until today to get better but she has a higher fever and a cough. The plan, the hope for today melted away as I made the dreaded phone call to cancel her procedure. I had prayed and others had prayed and prayed! The highlight though was when the phone rang at 8:00am from CHOP...rescheduler? No, Dr. Grossman himself to checkon Maggie and see how she was feeling. We talked options like having her come in for the tube anyway, but the virus she has would cause her to be isolated so that didn't sound good, or wait. After a very nice conversation we both agreed to wait until she feels better and call the scheduler. He truly expressed his care for Maggie and understood our disappointment. I hung up at least knowing that he will do whatever is best for her and we are on a team here. Now if only the OR was on our team.
Next call to Lisa the scheduler...been here before...me, "Dr. Grossman needs us to reschedule as soon as we can." Lisa, "We can get her in March 4th." WHAT?! I can't go through 4 more weeks of waiting for her to get what she needs and for us to know what is going on inside her. And I can't wait 4 more weeks for another virus to come along and postpone it again. I am now praying on Dr. Grossman and that he can work something better out for us.
In the meantime, I guess I will be back to work but I am scared to send her back to preschool to catch another bug. Does FMLA cover prevention of further illness? ;) Oh I am just in so many places emotionally right now. First I was scared for her to get her ng tube but after finally coming to terms with number one, this is a chronic illness, 2, she really hasn't grown and 3, I know our doctors are the very best and she will be better for it, I am ready. It's like standing at the starting line for a race you've trained a year for and the damn guy won't fire the start gun!
Here it is Saturday, February 5th, 2011 as I sit next to my little Maggie with a cold, cough and 100.4 fever. Monday was supposed to be the big day but now it's another waiting game and we've already been waiting. This new journey began back in September of 2010 when our check in with Dr. Grossman showed she had not even stayed the same weight, but had lost. This was a first. We tried various stategies to help her eat and even had a feeding and swallowing evaluation at Children's Hospital of Philadelphia in October. The new was good and bad. Good news: no functional problems, speech on target and milestones met. Bad news: severly underweight, I'm sorry, their term, "mildly unserweight but close to moderately underweight" due to behavioral pychological issues with food. Made sense at least. In her short 2 years, she has had either pain from food, other negative experiences like vomiting after eating food and now we are always telling her what she can't eat. Recommendations: feeding therapy with a child psychologist and other suggested startegies. Come back in 6 weeks and if she is the same, ng tube feedings. It was a shock!! I knew she was having trouble but I didn't understand the urgency. Then to find out Blue Cross Blue Shield would not cover any of those therapies and fights covering formula. GREAT! Wait I have 24 hours to still change insurance at work...off the phone I go! And home to make sense of the day.
Next came our next visit with Dr. Grossman, Maggie's incredible GI at CHOP. He immediately calmed me from what the feeding team said and offered new more options to try before we need to do the tube. One was a medication to help empty her stomach faster so she would get hungry, the other an appetite stimulant. We tried the first one for 6 weeks and at times considered trying the stimulant but couldn't get a consistent read as to whether the first was working. We were scheduled for our follow up on December 29th and thought for sure she had progressed.
Due to the Christmas snow storm we had rescheduled our Delaware trip for the same day and therefore the whole family was at this appointment. Talk about fate. Dr. Grossman came in and Maggie was so happy to see him and give him a little gift we got for him! Then he cut to the chase and turned the monitor around to show us her curve for weight and height. He explained that both her weight and height had not changed in over 9 months and at this time it was "alarming." ALARMING? Dr. Grossman doesn't use those terms lightly! I welled up immediately about to hear what we feared. There was no time to wait, Maggie needed an ng tube for night feedings soon to reverse this trend! He explained also that this age is critical to the development of their brain and it is more important than ever to do this. We agreed to add the appetite stimulant and see if it made any difference but things weren't looking good.
Now why isn't she eating? Is her eosinophilic esophagitis flaring? Is she reacting something new? So here comes another scope. Please some answers!
Next came our next visit with Dr. Grossman, Maggie's incredible GI at CHOP. He immediately calmed me from what the feeding team said and offered new more options to try before we need to do the tube. One was a medication to help empty her stomach faster so she would get hungry, the other an appetite stimulant. We tried the first one for 6 weeks and at times considered trying the stimulant but couldn't get a consistent read as to whether the first was working. We were scheduled for our follow up on December 29th and thought for sure she had progressed.
Due to the Christmas snow storm we had rescheduled our Delaware trip for the same day and therefore the whole family was at this appointment. Talk about fate. Dr. Grossman came in and Maggie was so happy to see him and give him a little gift we got for him! Then he cut to the chase and turned the monitor around to show us her curve for weight and height. He explained that both her weight and height had not changed in over 9 months and at this time it was "alarming." ALARMING? Dr. Grossman doesn't use those terms lightly! I welled up immediately about to hear what we feared. There was no time to wait, Maggie needed an ng tube for night feedings soon to reverse this trend! He explained also that this age is critical to the development of their brain and it is more important than ever to do this. We agreed to add the appetite stimulant and see if it made any difference but things weren't looking good.
Now why isn't she eating? Is her eosinophilic esophagitis flaring? Is she reacting something new? So here comes another scope. Please some answers!
Wednesday, October 6, 2010
How it began
Tonight begins hopefully the first of many to tell the story our journey with our daughters and with food allergies, asthma and eosinophilic esophagitis. A few of my friends suggested I start a blog a long time ago and it probably would have been therapeutic. It may still be and hopefully helps someone else out there who is going through it, too.
So both my kids are small, healthy but always been small. From the time our first was born weight issues were well, issues. Born at 6lbs 2oz, she promptly dropped to 5lbs 7oz and was a very fussy baby. Through the years she has been low on the charts, then below the charts but it seems to be a pattern in my family. Then came baby girl number 2...born 6lbs 14oz and left the hospital at her birth weight. She nursed right away and gained well. Still only in the 25th percentile but that was exciting for us! She continued to do well until we started introduce solid foods at 6 months. She loved them at first! Gobbled down 3-4 jars at a time! Then things started to change.
From 6 months to 15 months we struggled to get her to eat enough but there were "colds" (that I now know I accurately pinpointed at the time as allergies,) molars coming and a lot of fun summer activities. Things would calm down in the fall. Fall came and so did her 15 month appointment. I had expressed my concerns about her feeding habits at her 12 month check but we were going to give it time. Well, in the 3 months since that appointment, she had only gained 3 ounces and combined with her pattern of decline, was given the diagnosis of "failure to thrive."
Some of you know this feeling...the one when a doctor tells you your child is not growing right, developing right or whatever else comes to mind when you hear, "failure to thrive." Failure to parent right? Failure to know sooner where there was a problem? Failure to miss the signs? I just wanted answers and get on track. The doctor suggested a feeding and swallowing evaluation at CHOP but before we made the appointment we got one other second opinion. That doctor doubted she would be eating pizza if she has a swallowing issue and ran some bloodwork.
I will forever remember the moment I got that call. I remember I was standing in my classroom on Back to School Night about to head downstairs to meet my new parents in 10 minutes (which actually forced me to stay calm while I listened to the doctor because I have only a few minutes before I stood in front of all those parents!.) The doctor himself called to tell me her test results were abnormal. Her eosinophils were off the charts, 17 when 4 is high. Eos-whats? What does that mean? He explained it was a white blood cell and the high numbers can be caused by everything from parasites to cancer. Something was seriously wrong and we needed to find out what it was...and so it all began...
So both my kids are small, healthy but always been small. From the time our first was born weight issues were well, issues. Born at 6lbs 2oz, she promptly dropped to 5lbs 7oz and was a very fussy baby. Through the years she has been low on the charts, then below the charts but it seems to be a pattern in my family. Then came baby girl number 2...born 6lbs 14oz and left the hospital at her birth weight. She nursed right away and gained well. Still only in the 25th percentile but that was exciting for us! She continued to do well until we started introduce solid foods at 6 months. She loved them at first! Gobbled down 3-4 jars at a time! Then things started to change.
From 6 months to 15 months we struggled to get her to eat enough but there were "colds" (that I now know I accurately pinpointed at the time as allergies,) molars coming and a lot of fun summer activities. Things would calm down in the fall. Fall came and so did her 15 month appointment. I had expressed my concerns about her feeding habits at her 12 month check but we were going to give it time. Well, in the 3 months since that appointment, she had only gained 3 ounces and combined with her pattern of decline, was given the diagnosis of "failure to thrive."
Some of you know this feeling...the one when a doctor tells you your child is not growing right, developing right or whatever else comes to mind when you hear, "failure to thrive." Failure to parent right? Failure to know sooner where there was a problem? Failure to miss the signs? I just wanted answers and get on track. The doctor suggested a feeding and swallowing evaluation at CHOP but before we made the appointment we got one other second opinion. That doctor doubted she would be eating pizza if she has a swallowing issue and ran some bloodwork.
I will forever remember the moment I got that call. I remember I was standing in my classroom on Back to School Night about to head downstairs to meet my new parents in 10 minutes (which actually forced me to stay calm while I listened to the doctor because I have only a few minutes before I stood in front of all those parents!.) The doctor himself called to tell me her test results were abnormal. Her eosinophils were off the charts, 17 when 4 is high. Eos-whats? What does that mean? He explained it was a white blood cell and the high numbers can be caused by everything from parasites to cancer. Something was seriously wrong and we needed to find out what it was...and so it all began...
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