Rough Day...

Today has been a rough day for Regan.  Her G tube is bothering her. Feeds are difficult, she is cranky and wants me to hold her all the time. She has been running a low grade temp for two days now and her G tube sight looks bad and is tender to the touch. 

This is so frustrating. To watch her uncomfortable and in pain. Her coloring has been pretty good lately, with rosy cheeks. But just yesterday her coloring started to change, and she's pretty pale again. I am hoping its nothing and she just has a little bug on top of her g tube infection, but I am worried about her.

And tomorrow morning she sees GI and I have no idea what to expect. So I am nervous. Please continue to keep my princess in your thoughts and prayers. I will post an update when I know anything more! 

Thank you for your support!

<3 Reagan and Family <3

Maybe she's cranky cause I gave her a comb over today! Haha silly momma!

The perfect blog post

I realized I have been avoiding making a new blog post because I want it to be the the perfect blog post. And that's probably never gonna happen. So I just need to start writing and let it go where it goes.

Our life in this house can be really crazy. We have some pretty amazing moments in this house, like drumming, singing, dancing, playing hide and seek, snuggling as a family, letting each other know how much we love and care for each other. 

And we also have some scary moments. And those scary moments seem to last days sometimes when they are happening. And sometimes you can't get the them out of your head, that moment, that unbelievably terrifying moment, well it can replay in your head over and over and over again. It's hard. I try to play it off most days, I do. All of this- her care, her expenses, the  daily preparations that go into her care, the phone calls to/from her 10 specialists (plus her peditrician), the information to be retained about her care and diagnoses, the constant thoughts and worries- it can be a lot. And we (and I include ALL of you; our family and friends) handle it the best we can. I say we, because what happens in our house effects all of you too. From phone calls from my husband and I crying, and needing to "talk", or needing a ride to an appointment, or you having to taking care of Addison while Reagan is in the hospital, or sending your prayers and love to my little family and "our little fighter". 

Whatever it is you have done, you have become part of our family, and you live in our house with us. So it's time for me to start sharing a little bit more about Reagan's daily life with all of you. Its so you know and you understand that if I don't always answer my phone, emails, texts, Facebook messages- that I heard you, we heard you- we thank you- and you are always in our thoughts and prayers too. We love you and thank you for EVERYTHING, BIG and small.

So family to family I wanna share with you how I worry about Reagan 24/7. Sometimes I may seem like I am somewhere else, It may seem like I am on another planet, it's probably cause I am. There is no doubt I am thinking of what appointment or testing is coming up, the preparations for the rest of the day and the days to come, the symptoms she is experiencing, the doctors I need to call, and let's not for get about the awful task of being patient while waiting for test results come in! My mind is clouded at times. I feel overwhelmed. My husband feels overwhelmed. Addison worries about her little sister. Our extened family worries too. It's hard. But together, all of us, we stick together we pull thru.

Some of the things I am anxious about is some of her up coming testing and new specialist appointments. And here is why...

She saw genetics recently. Her geneticist says she has seen a million babies like Reagan before. And she is confident that her genetic testing is going to come up with positive results. She suspects connective tissues disease. She said it doesn't fit all her diagnoses but most, she said she could have two genetic syndromes, and we won't know til the testing comes back. And hopefully it will let us know what the long term is going to loom like for her, what her care will consist of. 

She also wanted Reagan to see an ophthalmologist because her peditrician said it kinda looks like she has a "lazy eye", and apparently with some types of connective tissues disease you can have eye problems. Then she was concerned with the fact that Reagan has had so many upper respiratory infections since birth and is now on her 3rd g tube infection! She she decided that she should go see an allergist/ immunologist. She also ran some lab work to check her immune levels and they were pretty low. Her geneticist is aware of those results and is deferring her to the allergist/ immunologist for further work up. The abdominal ultrasound her geneticist ordered was normal, which is awesome news! Her geneticist said that we are gonna get a lot of normal results back, but we are also gonna get some abnormal results.

It just makes me nervous, we have been looking for answers for 7 1/2 months, I NEED to know what causing all her issues, but I am terrified of what is gong to show up. We are expecting a call from her next week to discuss some results. 

I mentioned before that she is on her 3rd G tube infection and she is now on her 11th day of antibiotics out of 21 days. She has to be on it until she can see her GI doctor on 10/30. Needless to say it gives her bad stomach aches, and since starting it she has lost 2 oz. I feel so bad for her. But she is so tough, she sticks it out and kicks butt. I am so proud of her.

So those are the big things in addition to the little things that I am always worrying about. Now you know. So I am gonna wrap this up. It's not a perfect blog post. But I was able to communicate to all of you reading this. So thank you! Thanks for reading, thanks for caring, thanks for your patients! As always, I will post when I can. And hopefully next time I don't wait 2 months! :-) 

Love,

Reagan's Mom and family!

Infected with tears...both good and bad!

So Reagan was discharged on last Friday 8/9. While she was in the hospital she had some questionable discharge coming from her G tube. She was also having a lot of pain and tenderness whenever I touch it to put the extension on or cleaned it.

By Friday night she had bloody greenish yellowish puss oozing out of the site. On Saturday the visiting Nurse came for a visit and was concerned by the look of it. So we took her to the pediatrician on Saturday, lucky for us her PCP was on call that weekend and was able to see her in the office.

She was concerned that she could have an abscess. Her first thought was to send her back down to children's. And the she felt bad even having to suggest it. I asked if we had any other options, so we came up with the following plan after talking to the surgeon- they cultured the ooze coming out of the site. Started her in antibiotics and sent her home. She had a follow up in Boston with the GI nurse to check the site on Tuesday 8/13. 

In the mean time I brought Reagan back home. She was vomiting 1-2 times a day and spitting up. She was screaming and crying at times for long spans of time, she just wasn't herself.

Tuesday came and Anthony and I brought her down for her appointment. The nurse asked what antibiotics she was on and I told her. The nurse didn't think that it looked right so she asked one of the doctors to come look at it too. And the doctor agreed it didn't look good. So they increased the dose of antibiotics.

We got home that evening and within 30 minutes we got a phone call from her Peditircians office saying that the final G Tube cultures came back and the bacteria is resistant to the antibiotic she was on. Grrrrr! We were so frustrated, this poor baby can not catch a break.

So on Wednesday morning her visiting nurse had come in the morning and took her temp and weighed her, and she still had a fever and had lost 4 oz since Saturday. I called down to GI to make sure she was being put on the right antibiotics. They waited all afternoon for the culture report to show up and when it finally did they opted to put her on a different antibiotic.

I was given clear instructions that if at any point her condition worsened then I was to bring her down to the ER. I was also told that after 24hours of her being On the antibiotics and she still has any of the same issues: fever, vomiting, feed intolerance, pain etc.. Then she would need to come down to be seen.

Wednesday evening she had her first dose of the new antibiotic, and there was no noticeable change. 

Thursday morning the same thing no change and she still had a low grade temp. She was due at 3pm for her next dose of antibiotics. 

In the meantime I called down to GI because she still wasn't tolerating her feeds and I kept having to stop her feeds because she was refluxing. Most babies have reflux and its not an issues, but she is at a high risk for aspirating her reflux because of her laryngeal cleft, Laryngomalacia, and trachomalacia. By the time I got a call back from GI her G tube looked a bit better, but it still had some nasty drainage coming from it. Her temp was at 100.2 which is still a low grade fever. 

The nurse I talked to said that she had strict instructions from the doctor that if she wasn't better then Reagan needed to come back down....

This might sound a little selfish on my part, but it has been torment to watch her go through all that she has been through and I wasn't sure I could handle it anymore. It's easy to be strong for your kids day in and day out. But there are times and certain things that you just can't handle. And the thought of having her put back in the hospital and separating our family once again was just devastating. I wanted to avoid it at all costs.

I had multiple conversations with the GI nurse on Thursday. One of the last conversations was that she thought that Reagan should go to the children's hospital ER. I made one final plea and said "she has only had two doses of antibiotics, can we give her her next dose and see how she does with it, and if she still has a fever then I will bring her in?" 

Call it denial or fear of what was happening, I don't know. All I know is I knew deep down inside that she needed to come down here. I was just tired of all the ups and downs. She already had 8 hospitalizations in her short life, I didn't want it to happen again.

So the GI nurse said she would talk to the Dr, and see what she thinks, but her gut was telling her that Reagan needed to be seen. She said she would call me back.

In the meantime Anthony and I packed bags for Reagan and Addison, and took Addison to my parents house while waiting for the call. We were there about 20 minutes before my phone rang and I knew it was them.

And the verdict was in, the doctor said that she MUST come in. We were sad, but knew and understood it was in her best interest.

Waiting to see the doctor!

Within 15 minutes of being in the ER we knew she was being admitted. Her temp had spiked to 101.8. They decided that the needed to give her IV antibiotics to get ahead of the infection before it spread to her blood. They started her on one type of antibiotic before realizing it wasn't quit doing the trick. They finally received the culture report from her Peditircians office this morning and realized that the bacteria that was causing her cellulitis was resistant to all but one antibiotic, that they try not to give to little ones cause of the side effects. So she got one dose of IV antibiotics. And they sent her home to recover at home! So for 7 days she will be on Antibiotics at  HOME! And hopefully it will fix everything.

As far as her vomiting is concerned the doctors said its probably caused by the infection, a side effect of the antibiotic, and possibly the position of the G tube.

So the priority is to clear the infection from her body. Once that happens we will be able to figure out how to get her to tolerate her feeds. In the meantime she is on a very slow rate.

So the good news is... WE ARE AT HOME!!!  She is resting and fighting off this nasty infection! She was happy when I told her we were going home even thigh she still feels a little crappy.

I will post updates as much as possible, things can get pretty crazy in this house as I am sure you can't tell. Things change real fast.

I also wanted to add how greatful we are to EVERYONE for all your love and support and generosity. It brings tears to my eyes to think that there are so many people out there that care about Reagan and our family. You have no idea what it means to me and my family. It certainly take a little stress away. So THANK YOU, THANK YOU, THANK YOU! I will never be able to stop thanking people for all they have done. So let me add one more...THANK YOU!

Love, Reagan and family!

Feeding tolerance/ HAPPY FRIDAY!

Reagan was brought in because she wasn't tolerating her tube feeds and was vomiting. 

I am happy to report that the little princess is doing much better and is tolerating her feeds.

The doctors think a couple of things happened that made her stop tolerating her feeds. First thing they think happened is that she still had anesthesia in her system, they said sometimes it takes certain kids a little longer to get it all out of their systems. It can make them sleepy and slow down their digestive tracts, hence the vomiting. They also think that she got a little hospital bug from being in the hospital so much. She had a low grade fever, she was pretty sleepy/lethargic, and she was super cranky.

When she was first was readmitted they couldn't let her feed through the G tube, they had concerns that the tube had been dislodged and that could have caused her intolerance. So for 48 hours she received IV fluids until the surgeons figured out if it was safe for her to feed through her tube.

What they did find is that the ballon at the bottom of the G tube had a little too much water in it and could have been adding some extra pressure on the contents of her stomach. So they removed the excess water and started her feeds slowly again.

They first started her on pedilyte on a slow continuous rate, then advanced her to half pedilyte and half formula at a higher rate. They then allowed her to go to full strength formula and slowly started the transition over to her bolus feeds.

She has been tolerating her feeds well and she gets to go HOME today! Happy Friday! Lets just stay home this time! 

Thanks again everyone for your love and support..We appreciate it!

Love, Reagan and Family

Déjà Vu!

Wait didn't we just leave this place? Yes that's right, you guessed it, Reagan is BACK in the hospital. She wasn't tolerating her feeds, was vomiting, and irritable . And her GI doctor decided she needed to go back to Children's ER and from there she was readmitted. 

This destroyed our spirit last night as a family. It's been difficult.

They are checking to make sure that the G tube is functioning. 

And now she is running a low fever, which they are watching to see if it spikes, before they give her meds. So I have a cranky baby on my hands that hasn't eaten since 1pm yesterday!

Will post an update later...

Home sweet home!

We had a wonderful afternoon and night back at home! It feels so good to have the whole family together again!

Everyone was so relaxed and happy to be home!

Home home home!

This little nugget gets to go home today! Yay!!!!! We are thrilled! She is tolerating her feeds well! So very happy!

We can't wait to go home and spend time together as a family!

Thanks for all the love, well wishes, and support!

Love, Reagan and Family