Monday, April 24, 2006


Yesterday Max and I had a great day and I was so thrilled with how "portable" he is becoming and how enjoyable our day's activities were. We started off with church and then we went to the dog park yesterday afternoon with Eliz and Thomas. I used to go to the dog park all the time in WV and VA but since Max was born, obviously I have been just a little too busy! So it was an interesting adventure to have a baby (especially one who has to keep a hat on to protect his eyes and can't control his head quite yet) AND two dogs...but it worked out fine. Max actually feel asleep on my lap about 30 minutes into it. :) It was an absolutely beautiful day.

So a perfect day, but a difficult night. As Max went to sleep, he required much more oxygen than usual to keep his sats up. I was very worried that perhaps I have been pushing the feeding too much (which I will post about another time) and he had aspirated. I was very disappointed because I thought we were making some real progress. However, that finally leveled off...but then I woke up around 3 am to Max whimpering and shortly afterwards, he started to vomit. This continued off and on throughout the night. It absolutely breaks my heart to hear him so sad and in such pain.

I almost took him to the emergency room last night because there were some traces of blood in the vomit, but that subsided and he calmed down shortly after. Mom just got him to sleep while I ran to the store for Pedialyte (a kiddo with a gtube is always at risk for dehydration when sick, so you have to stay very on top of the fluid issue) and now I am waiting for my doctor's office to open to see what they want to do.

On top of being scared for Max right now, I am also bummed about the change in our morning plans. We were planning on attending a special needs baby group this morning for the first time...and we were sooo excited. Another mommy and her special needs baby (adorable and amazing Dylan has Down's Syndrome: who I met at Children's attends this group and has been raving about it to me for months. I was so happy that Max seemed stable enough to finally attend...I guess not quite yet! The babies and mommies do the normal "baby group" activities but they also have a PT, OT and speech therapist in attendance who help each child with different skills. So we get an extra dose of therapy while having fun and meeting other babies. Well it will be something to look forward to another time!

So I have another hour to wait until I can talk with the doctor. Tick, tock, tick, tock. I never like talking with the ER or on call doctor because to explain all of Max's issues is way, way, way too frustrating and confusing. I remember the first time I called the on call doc and it was so funny when the nurse called me back. I just assumed she had reviewed Max's file so I am answering questions on and on...then she asks, well has he ever been hospitalized before, any surgeries, any issues, any medications, etc. I told her to get a piece of paper and start writing.

ANYWAY, that's Max's night in a nutshell. I'll try and write later when I know more. Never a dull moment around here! :)


Ruthie said...

Max definitely likes to keep you on your toes! I hope he starts feeling better soon. You would have thought that having the opportunity to play with other kids would have been bribery enough to keep him healthy?! Oh well there is always next time. Hang in there and always remember what a great job you are truly doing with him. Take care-

ang said...

Sorry mighty max you aren't feeling so great. but we all have those days. you will do it in your own time.

Sara B said...

hey lady-
I hope he's feeling better. Give me a call if you want me to come over for awhile so you can rest. me!! Shoot...maybe I should just call you! =)

Dylan (and Kristy) said...

Hi Amy,

Sorry to hear about your bad night! We'll get to the playgroup soon...

Glad to hear that you enjoyed the dog park. I can't wait to bring my puppies along with you sometime. I bet they would have a blast.

Take care and please feel free to call if you need anything!


Kristy, Ray, and Dylan

elle said...

never a dull moment in chargeland hope he gets better soon

Steph said...

What a scary sorry you and Max went through all that. And just when things were going well. Guess this is one of the "valleys"...I'm praying for more "peaks"...actually, I'm praying that the roller coaster levels out!

Love you both,