Surgery..

Reagan is 5 months old and will have her 3rd surgery in the morning. Her first surgery was a Supraglottoplasty on May 4th (10 weeks old), she had a second Supraglottoplasty on June 6th (15 weeks old). And tomorrow they will put a G tube in (23 weeks old). 

At first I was fine with the decision, but as her surgery approaches I am getting very nervous. About the surgery and care at home. It saddens me at times that this is what her life has come to, hospital stays and surgeries. And I know that it could be worse. But it still hurts to watch her go through all this. No one wants to watch their child fall and get a boo boo, let alone have to have had three surgeries in their first 5 months of life.

I am very overwhelmed right now and will make a post after her surgery to update everyone.  Her surgery is at 10:30am. All I ask is that you send healing energy, positive thoughts, lots of prayers, and lots of loving thoughts her way tomorrow.

Thank you..

 Love Reagan and Family

The Mayor of the 11th floor..

I know I was gonna post an update the other night about little Miss Reagan, but I've had a hard time explaining what's going on to family members let alone trying blog about it. So I am gonna make an attempt.

When her GI doctor came to see her, Anthony and I explained how she has been since she was discharged. She wasn't tolerating her feeds well, she was still refluxing and had two clear aspiration events. 

In talking with them they decided that its important for us to protect her lungs and improve her daily living. They had warned us in her last admission that down the road she could potentially get a more permanent feeding tube called a G tube. The Ng tube that goes in her nose and down her esophagus into her stomach is usually only meant to be a temporary measure. They are a culprit for infection and can cause irritation and inflammation in the nose going down to the stomach.

The decision was made that she would be getting a more permanent feeding tube. The only question was what kind would she be getting. There are a few different kinds, and in her case she has three options which I will get to in a minute. One of the things they decided to try was a drug for GI motility. 

"Gastrointestinal (GI) motility refers to the movement of food from the mouth through the pharynx (throat), esophagus, stomach, small and large intestines and out of the body. The GI system is responsible for digestion." -UC San Diego Health System GI motility specialists. 

Because she vomited 1.5 hours after a feed the other day, they suspect that things aren't moving through her digestive tract like they should be. The drug they put her on to help her motility is erithryomycin, which is actually an antibiotic. It is used to help move things through her digestive tract, apparently it stimulates the gut. They give it in very small doses so it is very very unlikely that she would ever build up an antibiotic resistance. This drug is apparently much safer than some of the older motility drugs they have, which can cause neurological side effects.

This drug is a trial for her to see if it improves her symptoms. Depending on how she does with her feeds while on this drug will determine what kind of feeding tube they decide to do. If the drug works for her she will get a G tube. If its not working she will get a G-J tube. And her third option is to get a G tube with a Nissen Fundoplication.

A G tube or gastrostomy tube is:

"A gastrostomy feeding tube insertion is the placement of a feeding tube through the skin and the stomach wall, directly into the stomach." -Neil K. Kaneshiro, MD

A G-J tube is:

"A G-J tube is a single tube that passes through the abdominal surface, into the stomach and down into the second part of the small intestine (the jejunum)." -Boston Children's Hospital/ Harvard Medical School

A Nissen Fundoplication is:

"During fundoplication surgery, the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach (lower esophageal sphincter), which stops acid from backing up into the esophagus as easily." -WebMD

There are obviously risks and benefits to each. Including some being major lifestyle changes for us. I mean tube feedings in general are a huge lifestyle change especially when you are looking at them more as a longer term thing than just a few weeks. Right now she gets what's called a bolus feed which is run over a short period of time in intervals. So for Reagan she gets 4oz of hypoallergenic formula slowly over the course of an hour. Her feeds are every 3 hours starting at 6am and ending at 12am.

She can also have continuous feeds, which are given very slowly and continuously over the course of a 12 hour period, or 24 hour period. So if she has continuous feeds she will be connected to the feeding pump for 12 or 24 hours. If she still doesn't tolerate her bolus tube feedings she could be switched to continuous feeds.

If she gets the G tube she will most likely get bolus feeds. If the bolus doesn't work she will be switched to continuous feeds. If she gets the G-J tube her only option is continuous feeds.

If she gets the Nissen Fundoplication with her G tube (which I am not I am not fond of) there are some yucky side effects. If she ever gets a stomach bug and has to throw up she could have difficulties and will retch. In my research I found out that the surgery is never undone, it is permanent, so any side effects she has from it will be life long. Another side effect is it can loosen and she would need to have another surgery to repair it. It also isn't always effective to stop reflux from coming back up.

As you can see we have a few options and it's a bit overwhelming.

We were hoping she would have her surgery today to place the tube, but as the nurse said "GI needs to get their shit together and come up with a plan". There is a chance that could get together and she could have surgery today at the end of the day. But it will most likely happen tomorrow or Wednesday. There is a chance that if they are too busy to do the surgery she will have to go home and come back when they can schedule it. But it is most likely gonna happen over the next couple of days.

She is having the tube placed for many reasons. Mostly because she refluxes up and aspirates on it. But she also has Anatomy abnormalities of her throat and airway that  prevent her from feeding by mouth and aren't going to resolve any time soon. Placing a more permanent feeding tube is her best option. It also can be removed very easily at anytime her team of doctors decides is best for her.

So right now we are waiting for GI and the surgeons to come up with her schedule. I hope this explains it all well. It can be very confusing. I will update when I know anything. 

In the mean time here is a pic of the Mayor of the 11th floor from this morning...

She was referred to as the Mayor of this floor this morning by one of the nurses  because all the nurses and doctors know her and come to visit her and play with her cause she is so darn cute. Also whenever we go for a walk we literally have to stop ever few feet cause someone wants to say hi to her and talk to her from staff members at the hospital to other kids and parents! She is very popular her. Mayor Reagan Jean!! Haha

A mini adventure!

So I started this whole post updating on what the doctors talked about during rounds this morning, and my phone died in the middle of it! Instead of typing it all up right this second I will save my update til tonight in case there is more information to add.

For now Reagan is doing well. She is not quite her old self yet, but she is better today than yesterday!

They allowed us to go for a walk in the beautiful garden called the Prouty Garden, which is on the grounds of the hospital. So I wanna share pictures with everyone of our mini adventure!

Here we go...

 Reagan in her car seat waiting patiently for us to leave.

First BIG smile of the day while waiting for the elevator! So happy to be out and about!

Relaxing in the shade breathing in the fresh air!

People watching with Momma one of our favorite activities! Haha

Dozing off!

Her and I wanted to go for a swim in the fountain, for some reason I don't think that would be acceptable..

Flowers are EVERYWHERE!

Coolest looking tree!

Oh and as we were sitting in the garden a helicopter took off from the helipad! Of course I took pictures of it, it was so cool!

Helipad on top of the building!

You can see the blades going.

And the take off...

It backed up from the helipad, then switched directions really quick.

When it turned around we got a HUGE gust of wind from its blades, it felt like a strong breeze. We both loved it!

And now we are back in her room. Which she started to cry when we entered. I think she thought we were going home, poor baby! I felt bad.

Update on her treatment plan to come later. For now we are both gonna get a nap in!

Just published this post from Reagan's room and I was looking out the window when the helicopter returned! Had to post the pic. It is massive flying by her window compared to the picture.

8 days of freedom then Pneumonia happened...

So I've been sitting here trying to figure out how I want to go about this post. For the last 8 days I haven't had the time or energy to post an update. Our daily schedule can be a bit hectic. When Reagan was discharged we were THRILLED. Our family felt whole again. We celebrated Addison's 2nd Birthday, and had a blast. It felt good to share a positive day with our family after all that has happened. As some of you probably have figured out already that Reagan's life things can change very very fast from good to bad, and bad to better, and better to horrible. 

Her daily routine looks like the folowing:

6am-7am  FEED through Ng tube

8am Meds

9am-10am FEED through Ng tube

12pm-1pm FEED through Ng tube

3pm-2pm  FEED through Ng tube

6pm-7pm  FEED through Ng tube

8pm  Meds

9pm-10pm FEED through Ng tube

12am-1am FEED through Ng tube

*Reagan can't go on her CPAP machine for 30min after the end of her feed, so my night ends at 130 am at the earliest. Sometimes she doesn't tolerate her CPAP machine well and I give up trying at around 3am cause I am so deliriously tired.

In addition to her feeding schedule she also has lots of visitors who assist in her care. She has a Visiting nurse come 1-2 times a week. She has Early Intervention following her and a nurse comes out once a week, and her physical therapist comes out once a week. She also has a respiratory therapist come to check in on her CPAP machine and other equipment. She has appointments with her primary care doctor, GI doctor, nutritionist, ENT doctors, and neurologist.

When Reagan came home last week she came home with a lot of equipment, so I quickly set out to reorganize my house and make it feel more like a home instead of a hospital. Reagan has oxygen, a CPAP machine, oxygen monitor, and iv pole with a tube feeding pump on it. The set up looked daunting to an adult let alone Addison and any other children that stepped into our house. It took a few days but I came up with a few creative solutions for the kids.

In the meantime Reagan overall was so much better...UNTIL the doctors decided they wanted us to try and feed her puréed foods. Two bites in she choked and turned blue. She recovered pretty quick, but her breathing was really labored after that. Since then she hasn't tolerated her tube feeds as well. She would arch her back, reflux, gulp formula back down, and cough. Then yesterday she threw up and started to turn pale around the lips and I knew something wasn't right. She also had physical therapy and the therapist pretty much just held her because she wasn't tolerating anything. She was working so hard to breathe at times it exhausted her. She fell asleep before her therapy session was over and slept for hours after.

The visiting nurse came and said she sounded so much worse than last week. She was getting pale around the lips at times, retracting in her neck and ribs, and using all the muscles in her belly to help her breathe. Over all she was struggling to breathe. The nurse called down to Boston to talk to the GI doctor and they said she needed to go to the children's ER. But first they said she needed to go to the closest ER and be transferred to children's. They were afraid she could aspirate on the drive down to Boston. So at 2:30pm we arrived at LGH. We left via ambulance at 5:30pm to Children's. We arrived at 7pm and spent the next 4 hours in the ER before they transferred her up to the floor. They have started her on IV antibiotics because she has pneumonia, most likely from aspirating her vomit yesterday. Until tomorrow she isn't allowed to eat at all, she needs to be reevaluated by the feeding team and see GI.

In this moment, I am sad, I am sad my baby is sick again. I am sad she is being poked and prodded. I am sad she has to be in the hospital instead of being at home with her family. I am sad Addison and Anthony aren't with us. I am sad for the life she is missing out on.  I am just sad and tired of all this back and forth. She made it 8 days at home this time. Hopefully there isn't a next time. Please pray and if you don't pray, please send positive thoughts to my family, we all need it.

I am gonna end this post with a bunch of pictures. All of them were taken in the past 8 days since Reagan's been home. They highlight the ups and downs. Here we go...

My girls are so happy to be back together. Our whole family is happy we are all back together once again. 

Reagan most times struggles to do the things other babies her age can do. She cant be flat on her back for any lengthy period of time because she will reflux  and hold her breath then have trouble breathing. She even struggles to sit up on her own unsupported.

The birthday girl and her baby sister! 

The birthday girl bowling for the first time!

Momma and Reagan while bowling. She didn't feel good and was pretty attached to me this day.

My girls and I snuggling at Addison's birthday party!

It was a long day, and she had a bad day. She finally fell asleep on me and I fell asleep with her!

This morning the girls spent time together smiling at each other and laughing, it was a great way to start a very long day.

Hugs!

Kisses!

Ambulance ride to Children's!

Upset after she got her IV in. She wanted nothing to do with anyone.

Right now she is sleeping, and I have updated this blog the best I can. Gonna get some rest and post more tomorrow. Thanks in advance for love and prayers!

Home is where the heart is!

Reagan had a great night and was just discharged!! We are in the car on our way home! So excited to have our family back together!

Tired baby!

School for the mommy of a complex baby..

Today's day consisted of myself and my wonderful mother a.k.a Mimi, learning how to use all the equipment Reagan is being sent home with. So maybe some day soon my husband and I will be able to go on a date together. 

My brain is fried at this point and I am not sure if I mentioned that the CPAP machine Reagan was sent home from Tufts with was completely inappropriate for her age, the machine is the same machine adults use and has no alarms if the mask is leaking, and no battery back ups if the power fails, and it isn't portable, so if she falls asleep in the car or she spends the day in Boston for follow up appointments and naps we need to put her on the machine. 

The FDA hasn't approved CPAP machines for kids under the age of 4 (I believe). So it was an ordeal to get a company to lease us the machine in the first place. Tufts told me that they had never sent a baby home on CPAP before, so I am certain they had no idea what they were doing. The team of doctors and the respiratory therapist at Children's said they send patients home on CPAP all the time. Tufts also sent her home WITHOUT an oxygen monitor, which come to find out is a BIG no no! They had told me that they didn't want false alarms to give me anxiety. Which is funny because the pulmonologist at Children's said to me when I told him that piece  of information "ok... So lets take all our ICU patients off the monitors because we don't want false alarms to give us anxiety, that makes no sense". I thought it was amusing. The logic behind needing an oxygen monitor with the CPAP machine is if the machine fails and her oxygen levels drop, the monitor will alarm to let me know. She is also going home with supplemental oxygen in case her oxygen levels do drop and she needs it. She also has a new, portable CPAP machine with 9 hours of extra battery backup in case of power outages or traveling. 

So things my mom and I learned today:

1) How to use the CPAP machine

2) How to use the oxygen monitor

3) How to use the pump the delivers formula through her Ng tube

4) How to replace her Ng tube god forbid she or her big sister rips it out

As long as Reagan tolerates her new CPAP machine tonight we will be going home tomorrow! She is on it right now, and so far so good!

My eyes are crossed and most of this post probably makes no sense, so ill fix it tomorrow.

Happy baby knows she's going home tomorrow!

A bitter sweet feeling..

As a mother you never want to see your child have health issues. And when they do, you are willing to try anything and EVERYTHING to make them better. It can be frustrating at times when you feel like you have exhausted all options and she's still not 100%. 

So when they did the trial of Ng tube feeds myself, Anthony, the doctors, and nurses noticed a difference in her almost immediately. Her team wanted to avoid at all costs sending her home on any kind of tube feeds. Obviously it is a HUGE lifestyle change and I agreed with the team at first. She is already on CPAP  and will be going home with an oxygen monitor and oxygen because of her blue spells, that alone can be overwhelming in her daily life.

As I mentioned in my previous post they wanted her evaluated by the swallow team. They came early this afternoon and after watching her feed they decided that she is still aspirating on the honey thickened feeds. They decided that they didn't want her to get another swallow study done considering she has had two studies in the past three weeks and there are concerns for exposing her to too much radiation. The speech pathologist said that regardless of the results of the study it is clear to see that she is aspirating during feeds and after feeds. She said its not safe for her to be feeding by mouth at this time.

Part of the problem is that she aspirates when formula goes down, but she also has such bad GERD that it comes back up and she aspirates on that too. And because it is honey thick the speech pathologist said that the lungs have a harder time clearing that thick of a consistency. They worry about her lungs getting damaged from constantly aspirating.

So the game plan is as follows:

•She will get her feeds through the tube for the next 4 weeks to hopefully give her lungs some time to heal.

•She will then have another evaluation and swallow study. If she doesn't pass then the discussion about a G tube will happen.

•She is now on Prilosec 10mg twice a day (it's her max dose) and they just added Zantac 15mg twice a day (which I believe is also her max dose).

•Over the next 24-48 hours the nurses will be teaching me how to use the oxygen, oxygen monitor, her new CPAP machine (which is more age appropriate than the one Tufts sent her home with), and the tube feeding pump. The goal is to discharge her Wednesday!

This is all completely overwhelming at times. To think my poor baby is incapable of feeding by mouth is sad. It's bitter sweet because I hate to see her in this state, but knowing she will be safer at home makes me feel a bit better.

Pictures from today:

Look of pure determination! She is working on trying to reach for object and is improving every day. Baby steps!

I just had a bath and the mean nurse re-taped my Ng tube, but I am happy now cause I am so fresh and so clean clean!

I believe that is all for today's day. As always I will update as soon as I can.

Safe to feed or not safe to feed that is the question..

So the doctors little experiment gave some insight to what's going on with Miss Reagan. After 24 hours with no feeds by mouth she seemed so much better. She was more relaxed and comfortable. We were able to do more tummy time without her getting stressed out. She seemed happier. The doctors in step down ICU wanted to get a feel for what her oral feeds were like, so they decided they wanted to watch one. The senior resident, resident, and her nurse came in and watched her feed. They saw the same things I was seeing in her, and decided they wanted to watch one more feed. So at her next feed she did even worse. They worry that she is silently aspirating still and they also worry that the contents of her stomach are coming up and she is aspirating on it. Her breathing was also very labored during her feed, and they don't want her working too hard to feed, it can become unsafe. They decided that for now she is not safe to feed by mouth so she switched back to Ng tube feeds. In the morning she will be reevaluated by the swallow team and they will decide if they think she needs another swallow study to rule out aspiration.

In case you were wondering, some of the things that happen during her feeds are:

Increased work of breathing

Noisy breathing 

Flaring nostrils

Turning blue around the lips 

Coughing/choking during and after feeds

Sweating 

Red watery eyes

Crying during feeds

Arching her back during and after feeds

Wet gurgling sounds during/after feeds

Crying for hours after feeds

Stressed out look in her eyes 

Miserable looks after feeds

She just had her first Ng tube feed since her oral feeds last night. And she is so much more comfortable and she is quite, no abnormal noises. The nurse noticed there is a HUGE difference in her when she is not feeding by mouth.

Last night we snuggled before I put her to bed, because she was so worked up after her feeds. She is my snuggle buddy! Love her! <3

Post an update when I have one. Also wanted to add a big THANK YOU to all our friends and FAMILY for their support through all this. Especially those of you who have been taking care of my other baby Addison Penelope. I appreciate you!

The eyes can be deceiving

She just ate, now it's nap time!

This may look awful with a tube down her nose to feed and a cpap mask on to keep her airway open- but this is the most relaxed I have seen her in weeks. She is usually very tense even while sleeping. Maybe this is actually gonna work for her. Will post as to what the docs say.

Transfered!

She was just transferred to a ICU step down bed. It's on the same floor and is attached to the ICU. She will remain here until she is discharged. Apparently she doesn't qualify to go to the regular floor because of her age, airway issues, and the fact that she is on CPAP. Hooray for making strides in the right direction!

Feeding Issues aren't good issues/ Visitors made her day!

Part of Reagan's issues are feeding troubles. She takes the appropriate amount volume wise, she just struggles with it. She is still showing signs that she could be aspirating on her feeds. Last night she had a really bad feed. Her oxygen levels dropped and she seemed distressed. After that feed she kept coughing and was irritable. She did not let me put her down. When she finally let me put her down she wouldn't let go of my hand, every time I tried to pull away she would wake up and start crying until I gave her my hand back to snuggle with. I managed to capture a picture of it.

Her first feed this morning was pretty good. She still seemed uncomfortable feeding. Her next couple of feeds were not so good. Her last feed was even worse. She was coughing and her oxygen dropped she sounded awful after and seemed miserable. Her spirits picked up when she saw she had some visitors: Uncle David, Auntie Diana, and little miss Ava. She was even happier when she saw Auntie Julie and Addison came to visit! Here are some pictures of the visits:

Addison and Ava giving hugs bye bye!

Addison kissing and hugging Reagan bye bye!

Snuggling with Auntie Julie!

After her visitors left the doctors and her nurse came to chat about her feeds. In the discussion we talked about how they have to try to limit a child's exposure to radiation when doing the modified barium swallow. So in the study they did the other day they first tried regular formula and she aspirated. Then they tried formula thickened with oatmeal to the consistency of nectar (which is what she had been having at home), and she still aspirated. So then they tried formula thickened with oatmeal to the consistency of honey and for the little glimpse  they took her swallow look good and there was no aspiration. Over the course of the past couple of days she has still struggle with her feeds very similar to how she was doing at home. The doctors said that she could still be aspirating especially if the contents of her stomach are coming up. There is still a concern that she will aspirate especially if she is tired, or not feeling well during feeds. They said that the thickness of the new feed can be too much for her. So they came up with a game plan for the next 24hours she will have a tube that goes in her nose and down to her stomach called an Ng tube. She will not be allowed to eat by mouth and she will be fed and through this tube. If her symptoms resolve then they feel she still could be aspirating on the honey thickened feeds. And she will go home with an Ng tube and eventually have a G tube placed (which is a tube that's not in her nose and goes straight to her stomach). Ng tubes are not permanent and babies can rip them out, so she would need something a little more permanent, until hopefully she grows out of her issues. So far she seems less stressed out with her feeds. She does get a smaller amount over the course of an hour, so hopefully it makes a difference for her. I NEVER EVER wanna find her blue again. And if last sundays event was caused by aspiration (which they suspect it could have been) and these are the steps we have to take to make sure she is safe then I am fine with that. I'll post another update when I have one.

Sleeping after her Ng tube was placed.

Oh and good news! As I am writing this post the docs came in and told me her EEG was normal! Yay! One less thing to worry about, no seizures!

Hope this post makes sense, I am very tired today!

Technology is a wonderful thing for the aching heart <3

Reagan and I have had a hard being away from the other half of our family during this admission and her previous admissions. Sometimes it feels as though we get home and get our family settled and she ends up back in the hospital. So that has been extremely difficult. It makes Anthony and I sad that we feel like our family has been ripped apart at times. So the goal is to get Reagan home SAFELY and keep her home so our family can feel connected again.

In the meantime technology has been a wonderful thing. Having an iPhone to do FaceTime is awesome! So everyday I have been able to see Addison in real time, it makes it hurt a little less to be away from my other beautiful child. It's even better that Addison gets to see Reagan. I think Addison worries about Reagan. Addison is smart and picks up on emotions. She knows where Reagan is and asks for her every time I talk to her. So I think it makes Addi feel better to see her even if its through the phone.

This morning Addi FaceTimed me and asked for the baby. At the time Reagan was sleeping, so I turned the phone toward Reagan and Addi said "hi baby". Even though Reagan was sleeping as soon as she heard Addison's voice she smiled in her sleep. I captured a picture of it, if you looks close enough you can see Reagan smiling. 

Technology can help make the aching heart hurt a little less! We can't wait for our family to be whole again! Hopefully this time we get some answers and stay whole!

No news is good news?

Yesterday Reagan was supposed to have the barium swallow study done. After holding off her feeds for nearly 12 hours they cancelled the study. The radiologist had called up during the doctors rounds on her and said that they would not do the test. When the doctors asked why not, the Radiologist said its because they can't thicken the barium to be as thick as honey and now that it is documented that she aspirates she can't have anything that's not as thick as honey. When the ICU doctor asked if it could be thickened even a little they said no. So her team of doctors decided that the risks outweigh the benefits and they wanted her to have the study done even if they couldn't thicken it. The radiologist still refused to do the study. They are still working on getting that study done, the ICU docs and ENT teams are ganging up on the radiologist to get the study done. 

Last night she had the EEG removed, no words on those results yet.

She met the GI fellow last night who was fantastic. He reassured me that the most important thing we can do is to keep her safe, so she doesn't have another event like Sunday night. He said that all her doctors will work together to ensure that before they send her home.

Here are some pics of the princess, who is also the most popular kid on the unit. Some say she is even the cutest kid in the hospital. Talk about making a momma proud. 

Getting the EEG removed, FINALLY!

The EEG technician said there were probably about 25 wires connected to her head!

She is in good spirits today! The ICU team is trying to figure out what her other providers want for testing before we go into the weekend. I'll post as I find out information.

And hopefully no news is good news!

Smiley

And to prove to you she can smile at anything....

This is her after they connected her to the EEG, nice durag kid!

A busy day and an update

I will eventually go back and give Reagan's full history, I promise. For now I can tell you what her current diagnoses are:

Severe GERD
Laryngomalacia
Tracheomalacia
Laryngeal cleft
Tiny PDA
Torticollis
Metatarsus adductus
Plagiocephaly
Developmental delays (most likely due to lots of hospitalizations, breathing issues, and torticollis)
Microhemorrhage of the cerebellum (most likely due to a difficult labor)- they don't believe this will cause her any issues but cant say for sure

Treatments so far:

10mg Prilosec for GERD
Supraglottoplasty (5/3/13)
Supraglottoplasty revision (6/6/13)- after being diagnosed with severe obstructive sleep apnea, and some central apnea)

We spent most of today trying to get her medical records from Tufts to help the doctors here decide what steps they wanna take next. They did repeat the modified barium swallow study today. This is a study that she originally had at Tufts two weeks ago which was negative. Today it showed that she was aspirating silently. Her formula now has to be as thick as honey in order to prevent it from going down the wrong pipe. Today she also got hooked up to an EEG for 24 hours. They decided to do this because they want to rule out that the event that took place on Sunday wasn't a seizure. In the morning she is going to be having and upper GI series to rule out a vascular ring. She has had a very busy day today. She was very cranky tonight it took a long time to get her to sleep. Putting her to bed with all the EEG leads on and getting her CPAP mask on over it was difficult. I know she is going to be even more exhausted after tomorrow's day. I feel so bad for her. But the best part about Reagan is that she will always smile at you even in her toughest moments on her hardest days. She is a strong girl and we love her dearly. I will try to post an update on her condition as soon as we know anything.

-Reagan's mom

A scary event led us here..

I really should start from the beginning and tell Reagan's WHOLE story. But it's 4am and I haven't slept in days. I will write about her eventful 4 months very soon.

In the meantime let me briefly explain what happened that led her to be readmitted to the hospital. She turned as white as a ghost and was blue from head to toe, late Sunday night. I thought I was going to have to give her CPR at one point, but after stimulating her, her coloring returned and she seemed stable. She was lethargic and didn't want to eat. I watched her all night long afraid another event would take place. I managed to doze of at points. She slept until morning and woke up and still didn't seem herself. She was still very pale all day and seemed a bit off at times. I took her to the pediatrician and got the same speech all the other Docs at TUFTS gave "she will put grow this" "I don't like the blue spells, but as long as she recovers on her own she will be ok"... Ummmm HELLO? She turns blue!! Cause that seems TOTALLY normal! *sarcasm*

After much discussion with my husband and my RN mother we decided it wouldn't be right to risk another possible episode. Reagan's dad and I took her into Children's Hospital ER and they admitted her because they didn't feel we should have to go through what we went through last night. It's just not safe. FINALLY doctors that get it! So she is currently in the medical ICU because of her age, breathing issues, and the fact that she is on CPAP. I will try to post more as soon as possible. 

For now my precious baby is sleeping, so this tired momma is gonna try and get some ZZZzzzzZzzzzZzz's

Send Positive vibes to my Reagan Jean