Wednesday, September 23, 2009

Scary couple of days!

I'm going to try to make a long story a little shorter than I would normally tell it. LOL

Paige was born with Laryngo malachia. Basically it is a "floppy airway." It is also known as stridor. It causes Paige to be very squeeky when she is breathing and causes her to sound like she is breathing very hard because it is a tightening of the airways. I basically call it "baby asthma" but it doesn't go away throughout the day as asthma would. It is always with her and she can be heard easily without a stethoscope. When she is sleeping, she is peaceful and you can not hear her breathing like this. Paige does sleep with her crib at a 30 degree angle so that helps her to not breath so loud and keeps the air way open.

Well, yesterday she was not acting right. She is usually really easy to take care of but for the past couple of days she was cranky and not wanting to eat. We just started her on Zantac last week for reflux and so we assumed that it was not her reflux and was simply that she might be getting a cold. So I watched her all day until she was sleeping in her bouncer and just couldn't sleep. She was really restless and kept waking up crying. She never does this. I figured she wanted to eat but she refused most of the day to eat more than 1 1/2-2 ounces of formula/breastmilk. This started to worry me. I asked Hal to come and take a look at her breathing as she was clearly breathing REALLY hard when she was trying to sleep. Which I mentioned, she never does. He looked at her, got out his stethoscope (it's good to have that handy) and told me to call the doctor, she needed to be seen soon. I knew what this meant so I called her ped and asked if I should bring her in or take her to the ER. With all her medical conditions, I would rather a doctor see her that is familiar with her or our family, so I opted to take her to her Ped in Meadville.

So I headed in with just Paige and had her seen. The doctor listen to her and told me that he believed she aspirated. OMG! I was trying not to flip out but just to give you an idea of meant...hospitalization, spinal tap, IV antibiotics, chest x rays, etc. Not a good thing at all. Oh and plus, if you don't get it out in time, she could die. So I was doing my best to hold it together as we always know that she can easily aspirate with her condition. So they sent me to the XRAY dept for chest x rays. At this point, Hal had to bring Maddie to the hospital with me because he HAD to go to clinical rotations. He is not allowed to miss and he might already miss a day for her surgery. So here I am, a wreck already, with a cranky baby and crazy three year old. I held it together and just did what I had to do sitting and waiting for the results.

Results came about 2 hours later. It was such a long and tiresome wait with Maddie all over the place. It's hard for a 3 year old to sit still that long when there is nothing to do. The good news was...she DID NOT aspirate. However, the doctor believe it was an obstruction in her throat or larynx. As I have mentioned before, I instantly thought "cleft larynx." He then told me that he wanted to show me her x rays. This scared me. Her lungs were completely clear but because she is having such difficulty breathing, her lungs are actually starting to grow in a "pear shape." She is using the muscles on the sides of her rib cage to breath, causing them to grow out of shape. Is it reversable, apparantly YES but we have to wait and see. The doctor recommended that we take her to Children's to be evaluated by her ENT today. We already had a NAM adjustment scheduled so I called Matt early this morning and set up the ENT appt.

We got to Children's after dropping Maddie off at daycare and Owen at school. Regina (nurse practioner) listened to Paige and told us she is having a lot of problems breathing and that they were not going to be a NAM adjustment this week. We honestly were a little disappointed as she was suppose to get her nose shunt this week. :( But we agreed it might be a better idea not to do it until we had more answers.

ENT appt: Dr. Alper saw Paige and told us that she didn't sound much worse to him but that he thinks that her reflux is really bad. Her Zantac hasn't really started to work. What is happening is that the stomach content is rising in her throat, irrating it, and then causing her throat to swell more. On top of the Laryngo malachia, she is having some trouble. But he wasn't too worried about it as long as she didn't start to turn blue. He said we need to thicken her feedings and see if that helps her from having the reflux. We are then going to be doing the scope on October 8th with her tubes as planned.

So plan is to thicken feedings, continue Zantac, keep scope operation scheduled with tubes, and watch for increased problems. If it gets worse again, they will take us in to get the scope done earlier. Hoping that is not the case and we can just make it till the scheduled date.

Thanks for all who took the time to pray for Paige today. It was very frightening to watch my one month old having extremely hard time breathing. She is sleeping sound now and doing much better. Pray it continues.


Jenny said...

Oh gosh, that sounds scary Mandy! I am glad she is doing better. Poor baby :(

Steph said...

OMG, I can't believe how much that poor kid had been through already! I think you are right when you said that Paige will be the one to show you your purpose. It will be very exciting to see what will happen in the next few years with Paige!!

Dorothy said...

Just know, my thoughts and prayers are with you all.
I cannot imagine how scary all this is for you guys. You are so committed to your family, and probably feeling a bit overwhelmed.
You are involved with THE BEST medical team possible, and Paige is with the best parents ever.
Just keep on keeping on, and when you feel like you need a bit of support... CALL AND ASK!!

Rosalie said...

Oh my gosh that is so scary, Mandy! I'm glad she is ok for now. Paige is always in my thoughts!

Laila said...

Zantac is amazing... relieves my lil cupcakes heartburn, hope I can also take it to relieve my heartache! LOL Got it online at

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