Well this update is not the kind of update I prefer to give but have been holding off long enough.
For a couple weeks now Bug has been really struggling now with her tummy. I think I got to excited with her "ability" to try new foods and let just keep going with the new foods. This backfired badly. All the progress we made has completely stopped as we are now having to back off nearly everything for a bit.
Nearly three weeks ago I realized that Bug was starting to have issues and slowed down on the foods but did not create the time for a clean out.
Why? Simple. we have just moved here, had not celebrated our Christmas with the kids yet nor seen her father off to Korea. I was hoping I could delay and she'd be okay.
I waited until she let me know that her tummy was hurting her after eating her normal foods and she was distended. Looking back now, waiting was the wrong choice but I wanted to enjoy the little bit of time left with her father before he deployed.
Last week on Friday, we started the clean out using magnesium citrate. This method normally produces results very quickly. The first bottle went in and nothing happened so I started a second bottle. Again, nothing. The third bottle was started and we just waited. Finally, about 3 am things started moving through but not enough. Around noon the following day I started a fourth bottle.
Normally this child is running pretty clean by this point but still was no where near cleaned out. We had gone through four 12oz bottles of magnesium citrate, seven or eight liters of Pedialyte, and she to top things off near the end of the second day she had not asked about food yet. I ran only Pedialyte for a couple more days hoping that her body would just dump the rest from her body.
Finally, near the end of day four she started asking about applesauce, and apple juice. At this point I let her have applesauce. Since the clean out we started with half strength pedialyte/formula then full strength formula at a slower rate. then we worked back up to her normal rate of 125. She has also only had applesauce and pears.
Going into the new GI, he wanted her kept on just apples, pears, and go ahead and try chicken, but nothing else yet. Bug is really frustrated right now because she doesn't like being so limited, but then she doesn't like her tummy hurting all the time either. We are adding more formula powder to the mix to increase the calorie count and may have to include polycose again. She's dropped down to 63lbs again, down from 70lbs at the beginning of Nov.
We're in the process of getting into the Oakland Children's Hospital where the dr's there are more specialized and knowledgeable with complex kids like Bug. We do not know if some of the meds she's on are causing her gastroparesis to be worse, or if her gastroparesis is just bad enough and causing everything to be really bad again.
Tuesday, January 26, 2016
Tuesday, December 22, 2015
Moving Day
Well the day that seemed so far away is here. Right now I am sitting here on the airplane, 30,000 feet in the air with Zach, Ellie, and Ava. Frank, the other 4, and Amy are someplace else on the plane.
Today has already seen its share of adventure.
To begin our day we were finishing getting our carry on bags and suitcases ready as the fire alarms in the hotel started screaming and the strobe lights flashing. Having awakened with a mild migraine already and my head sensitive enough that touching my hair hurt I knew I needed to leave immediately. Grabbing Ava, she and I left, and Frank gathered the kids.
Once given the OK, I stayed out front because by this point the taxi was now due any time. Frank and the kids returned to the rooms and retrieved all the luggage.
We then helped the driver load everything, said a final goodbye, and left APG for the last time.
Once at the BWI we began the check-in process. Everything was good to go. Amy's crate tagged for the plane. Suitcases off to be loaded on the plane. Now off to the TSA lines.
The kids went through, Celidah didn't know to leave her jewelry on and almost lost her young woman's medallion.
Ellie went through and everyone was lost as to what to do with her feeding pump. 2 supervisors later, and 3 workers (1 not using latex gloves) they finally figured out that they only needed to check her hands because her bag is clearly a medical device. Then our medical bag had to be visually inspected because things (I bet her spare GJ tube) looked strange and odd. So a quick look (lol puzzled look) the TSA said, "um this bags good, it's all medical and medicine. Looks like for the little girl there."
All was great until we boarded and we found out the crate for Amy was to big. Why we're we NOT told 3-4 hours earlier? The flight was held up as southwest searched out a new (we had to buy it) soft crate so the plane could leave.
Yay!!! We could now take off!
Well... Not quite.
The vehicle that pulled the plane into position to begin the taxi wouldn't let go of the plane. Emergency maintenance. LOL they had to bring a crew over to fix the release thing.
50 minutes late, all was finally right in the airplane world and we were taking off.
We are now nearing Vegas and will be landing around 5 something Vegas time with hopefully just enough time to dash to the next terminal, charge our phones some, and take off again.
Monday, October 26, 2015
AHS Marching Band
This past week has been a very and busy week for the kids.
Friday Corbyn, Jade, and Jairon had the Harford County Band night. During this event all the feeder elementary and middle schools for Aberdeen join the high school marching band on the field. This year they had over 350 students playing together. The elementary kids played one song while the middle school kids played two songs then everyone marched off together. The smiles, excitement, and pride from especially the youngest kids was wonderful to watch.
Sunday the county had its annual Showcase of the Bands. Everyone was delighted the weather held out and allowed all schools to perform. In my opinion, only three schools really excelled and had marching band programs that were not only entertaining but showed solid commitment between both students, parents, and staff. Aberdeen, North Harford, and C. Milton Wright. If the schools were judged I'm not quite sure who would be on top of the three.
CMW for sure has the largest marching band. I don't remember if North Harford used music or not. However, with the wind, the schools relying on music were greatly affected as the lyre pages were flapping all over and if music was not taped in place, flying all over the field. Many students relying heavily on music were often unable to look up as needed and instrument bells faced downward, causing a natural mute. Especially with the wind.
Poor Jade has been sick this week, but refused to miss the game. While she was running a fever and not at school on Thursday, she went on Friday so she could make the game (fever and all). Then still not feeling well on Sunday, she went anyway because again she was not going to miss the performance.
Last week we discovered petechia rashes on Corbyn. Blood work confirmed his platelets are indeed dropping again. His band instrument is the bassoon, marching band, auxiliary percussion, meaning he stands still banging things keeping a steady rhythm. He'd be just fine for both the game and the show. We'll keep an eye on him and let the school know when he needs another emergency IVIg infusion. We tag along to everything anyway.
Saturday, October 24, 2015
You're Not A Good Anesthesiologist
Chantelle has quite the personality and often speaks what she is thinking. During her last surgery she had a new anesthesiologist and did not think she was good because she all business and did not have any good jokes to make her giggle.
As she was in IRC and in the process of being put under with the laughing gas first, Bug is used to the anesthesiologist telling her jokes to help her giggle and take good deep breaths. Well this anesthesiologist was business and this step was not as important to her. This step is an important part of the routine that Bug has become used to, and skipping this step is unacceptable, as was pointed out.
Bug- You're not a good anesthesiologist!
Dr.- Oh really why is that?
Bug- Because you don't know any good jokes. You have to know jokes and makes kids like me laugh. I know jokes too but that's your job not mine. I'm not scared, but you can't let others get scared.
Dr.- You're very right.
At this point she tried telling a joke and Bug laughed saying "that's worst joke I heard." She then told one and had everyone laughing. At this point the anesthesiologist nodded to the team to used the sleepy medicine and she drifted off to sleep.
As I was walking out of the room the anesthesiologist motioned for me to come to her an with a very serious face she told me, "Your daughter is right. It's my job to help make sure these kids are not scared and their last memories are happy silly memories. Many of them will wake up confused, scared, and in so much pain because of what we have to do. I need to help them better."
As she was in IRC and in the process of being put under with the laughing gas first, Bug is used to the anesthesiologist telling her jokes to help her giggle and take good deep breaths. Well this anesthesiologist was business and this step was not as important to her. This step is an important part of the routine that Bug has become used to, and skipping this step is unacceptable, as was pointed out.
Bug- You're not a good anesthesiologist!
Dr.- Oh really why is that?
Bug- Because you don't know any good jokes. You have to know jokes and makes kids like me laugh. I know jokes too but that's your job not mine. I'm not scared, but you can't let others get scared.
Dr.- You're very right.
At this point she tried telling a joke and Bug laughed saying "that's worst joke I heard." She then told one and had everyone laughing. At this point the anesthesiologist nodded to the team to used the sleepy medicine and she drifted off to sleep.
As I was walking out of the room the anesthesiologist motioned for me to come to her an with a very serious face she told me, "Your daughter is right. It's my job to help make sure these kids are not scared and their last memories are happy silly memories. Many of them will wake up confused, scared, and in so much pain because of what we have to do. I need to help them better."
Failed Feeding Tube and Tube Change
So almost three weeks ago during an appointment with the pediatrician Dr. M to take care of paperwork for the military for our upcoming move we discovered the stability button in Chantelle's G-Jet (GJ feeding tube) had failed and her tube was sticking over three inches away from her stomach. At the sight of this my heart dropped into my stomach, and Dr M commented that he was sure that not right.
I took the opportunity to show him exactly where the stability button is "supposed to be" and at that excused myself from the exam for a moment leaving Bug with him as I left and went to the immunization clinic to ask for a slip tip syringe. (Of course only being there for a quick appointment I did not have my bag with me, nor did I have anything in the vehicle I was borrowing) Not understanding what I was needing and that I did not need a needled syringe the immunization tech was very unhelpful. Not in the mood to run to the blood lab, Dr M and I med back up and we decided that I would simply call Johns Hopkins as soon as I got home and we would devise the best route of action from there.
We hurriedly finished the EFMP appointment and paperwork and I left. Once home I called the GI clinic, explained what was up, that we had no spare, and waited.
Finally about 4:30 that evening we were told to take her to Urgent Care to get a KUB with contrast (stomach Xray) to determine placement. After calling the insurance we get authorization and head over to urgent care only to find out that because she has GJ tube she needs contrast and they are unable to use contrast so we had to go to the ER instead. (sigh... very annoyed by now as it is now 7pm).
We left for the local ER and watched an ambulance race past us with both lights and sirens. Resigning myself to a very long night.
Once checked in I checked the time board and noticed a 15 minute wait, yet knew this was not to be with the ambulance that passed us and knew another had turned off a road just minutes from the hospital. Within five minutes of sitting down and both of of us settling into a book, four more ambulances pulled up. Within minutes, the time board jumped to a 45, 60, then 90 minute wait. The other hospital 30-40 minutes away had wait times even longer. Since we were there for a simple KUB, I was NOT making a 30-40 minute drive then waiting all night since we were already early in the line.
By the time Bug made it back to a room, I explained exactly what was up, what we needed and why. We were blessed with an amazing nurse and PA. The xray order was made, they sent her back right away for her "tummy pictures" and thank goodness her tube was in place and nice and deep in her jejunum, where it needed to be. We arrived home just after midnight, exhausted but thankful to be able to use her tube until we could have it replaced. This meant she got to stay home and not be hospitalized this time.
Unfortunately Bug was unable to attend school for the rest of the week as I had find a way to secure her feeding tube. Frustrated and still waiting for a spare tube, I got creative. Unfortunately, while she was back at school, she was unable to participate in PE or recess. The risk of her tube being pulled out was to high.
Tuesday the 13th, I got a call that they could finally do the surgery. Of course the intended day would have been October 15th. My only request was the following Monday on the 19th. If possible I wanted to keep her home on her birthday. Thankfully, Children's agreed. Finally, two weeks after her tube support, we were going to be getting her tube changed.
Realizing that we never got the confirmation call telling us for sure what time to be there on Monday, I called to verify our arrival time and discovered her surgery had been cancelled because her tube still had not arrived. As of Tuesday morning, my message stated her surgery once again had to be cancelled and rescheduled, again due to the tube not arriving.
However, 3:45 Tuesday afternoon the surgery prep nurse called for the third or forth time that day letting me know they had just received her feeding tube and Bug needed to be at Hopkins peds surgical center by 7:30 Wednesday.
At this point we now had to get her pre-op steroid prescription, and begin her pre-op process.
Surgery went very well, and when I came back to the PACU the silly child was already wide awake.
She went into surgery at 10, we headed home at 12:30.
I took the opportunity to show him exactly where the stability button is "supposed to be" and at that excused myself from the exam for a moment leaving Bug with him as I left and went to the immunization clinic to ask for a slip tip syringe. (Of course only being there for a quick appointment I did not have my bag with me, nor did I have anything in the vehicle I was borrowing) Not understanding what I was needing and that I did not need a needled syringe the immunization tech was very unhelpful. Not in the mood to run to the blood lab, Dr M and I med back up and we decided that I would simply call Johns Hopkins as soon as I got home and we would devise the best route of action from there.
We hurriedly finished the EFMP appointment and paperwork and I left. Once home I called the GI clinic, explained what was up, that we had no spare, and waited.
Finally about 4:30 that evening we were told to take her to Urgent Care to get a KUB with contrast (stomach Xray) to determine placement. After calling the insurance we get authorization and head over to urgent care only to find out that because she has GJ tube she needs contrast and they are unable to use contrast so we had to go to the ER instead. (sigh... very annoyed by now as it is now 7pm).
We left for the local ER and watched an ambulance race past us with both lights and sirens. Resigning myself to a very long night.
Once checked in I checked the time board and noticed a 15 minute wait, yet knew this was not to be with the ambulance that passed us and knew another had turned off a road just minutes from the hospital. Within five minutes of sitting down and both of of us settling into a book, four more ambulances pulled up. Within minutes, the time board jumped to a 45, 60, then 90 minute wait. The other hospital 30-40 minutes away had wait times even longer. Since we were there for a simple KUB, I was NOT making a 30-40 minute drive then waiting all night since we were already early in the line.
By the time Bug made it back to a room, I explained exactly what was up, what we needed and why. We were blessed with an amazing nurse and PA. The xray order was made, they sent her back right away for her "tummy pictures" and thank goodness her tube was in place and nice and deep in her jejunum, where it needed to be. We arrived home just after midnight, exhausted but thankful to be able to use her tube until we could have it replaced. This meant she got to stay home and not be hospitalized this time.
Unfortunately Bug was unable to attend school for the rest of the week as I had find a way to secure her feeding tube. Frustrated and still waiting for a spare tube, I got creative. Unfortunately, while she was back at school, she was unable to participate in PE or recess. The risk of her tube being pulled out was to high.
Tuesday the 13th, I got a call that they could finally do the surgery. Of course the intended day would have been October 15th. My only request was the following Monday on the 19th. If possible I wanted to keep her home on her birthday. Thankfully, Children's agreed. Finally, two weeks after her tube support, we were going to be getting her tube changed.
Realizing that we never got the confirmation call telling us for sure what time to be there on Monday, I called to verify our arrival time and discovered her surgery had been cancelled because her tube still had not arrived. As of Tuesday morning, my message stated her surgery once again had to be cancelled and rescheduled, again due to the tube not arriving.
However, 3:45 Tuesday afternoon the surgery prep nurse called for the third or forth time that day letting me know they had just received her feeding tube and Bug needed to be at Hopkins peds surgical center by 7:30 Wednesday.
At this point we now had to get her pre-op steroid prescription, and begin her pre-op process.
Surgery went very well, and when I came back to the PACU the silly child was already wide awake.
She went into surgery at 10, we headed home at 12:30.
Tuesday, July 14, 2015
TheatreWorks Live- Charleston- Ellie
My favorite thing about Theater camp was all the weeks from the beginning to the production day.😸😸😸😸!!!!!!!!!!!! We got to sing,play,dance and sometimes be crazy!But not for very long.😔 My favorite game is Grandma's footsteps it's like red light green light but you can move above the waist. My favorite song is the prologue Happy days are here again.I loved all of the dances. At the production day there was doughnuts but I'm used to have friends that eat other foods that I can't have.We played duck duck goose,tellaphone then we were getting a little bit too crazy I
Was so nervous during the musical and no one knew that!!!!😸😸😸😸
Boyscout Camp and TheatreWorks Live- Jairon
My first favorite activity was White Water Rafting where we had to wait for 30 minuets then we got to learn about the safety and what to do if we are stuck in the cold water. Next we got on a bus to go to the rafting area. The next thing that happened was we picked a group and got on a raft and got instructions, on what the commands are how to pull some one back in to the raft.Then we waited for our guides the reason is the river water was 6.5/7 ft deep and dangerous.When the guides got there we where assigned a guide and went to the river bed, except my group because our guide was not there yet when he got there we left it was awesome.At theater camp i met a 4 year old (He was VARY energetic) the day was get up get ready for theater camp helping. Then go to theater camp help out wait for Zach and Chantelle to finish, go home then came the recital before the show and near the end the energetic 4 year old pulled down his pants and underwear on the stage when someone was recording. other then that it was really well.
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