Friday, October 10, 2008

Home at last.

It feels so good to be home, even though home is all boxed up.


The whole hospital thing was a little scary for me. Here are the pictures of Ford getting his EEG, which measured his brain waves. This is the test that he didn’t mind much. Putting all those wires on his head actually put him to sleep. Every other test usually involved putting something up his nose and was torture. I never thought I would be one of those moms paranoid about germs, but now I am. At least for this season or until my little man gets a little resilient to a simple cold.


All ready to go home. Getting better is exhausting!

Meeting the Cousins

This is a little late but here are a couple picures from our trip to Oak City.

Here are all Ford's cousins on the Finlinson side (there is one more that isn't quite here yet). It sure was hard to get everyone to look at the camera at the same time.
Ford loves his Grandma and Grandpa!

Wednesday, October 8, 2008

Atrial Septal Defect

Test results are all back and things look pretty good. Ford didn’t have any of the dangerous viruses that are out there, he only has a nasty version of the rhinovirus so either he is going to turn into a rhinoceros soon or he just has a plane old cold. The congestion is still causing him to have low oxygen levels and since they know we will be moving they are going to keep us here until he can go home without oxygen. We are fine with that since our house is all boxed up anyway.

Since we were here anyway they have done quite a few tests to see if they could determine the cause of Ford’s purple pass-outs. Our ENT doc did the bronchoscopy and based on the results believes Ford has laryngomalasia or his larynx is closing off when he gets worked up due to swelling caused by reflux. (Can you tell I’ve learned all sorts of new vocabulary words since we have been here?) He is being treated for that with reflux medicine. Our attending, on the other hand, isn’t convinced that’s the problem so she ran several other test., none of which proved to explain his passing out so she believes the pass-outs are a result of breath-holding spells more common in older children. Either way, we’re glad to know it’s not a problem with his brain or heart.

While in search of the cause of these mysterious pass-outs the doctors came across and incidental finding. Our little man has a hole between the upper chambers of his heart. It’s not life threatening or even really dangerous, it’s just another thing for his momma to worry about

This morning everything looks great. Ford passed the “room air challenge” this morning when they took him off oxygen for an hour then permanently (we hope). If things keep going so well we should be heading home by dinner time!

Monday, October 6, 2008

Still Here

Hello All. We are still here at The Children’s Hospital where we have been receiving excellent care. Ford has a crush on all of his nurses, who have been so good to him and mommy is learning lots of handy tricks to take care of him.

Yesterday my baby boy woke up happy and smiley. He had an EEG done in the morning to measure his brain waives. This was done to determine if he was having small seizures when he was mad, causing him to stop breathing. He never got so mad that he turned purple and passed out, so I’m not sure that they got all the information that they needed. He actually kind of enjoyed the process of getting the EEG. He loves it when people mess with his head and EEG involved attaching lots of little wires via wax and tape to his head. He was sound asleep by the time he was all hooked up. We tried to get him mad so they could get the information they needed but he didn’t get mad enough, it only worked him up for the rest of the day making him quite fussy. They also tried to do an echo cardiogram but by then Ford was too worked up and wanted nothing to do with it. Having cold jelly squirted on his chest for an ultrasound wasn’t quite as nice as the head rub he had received earlier. We’ll be trying again today.

He spent most of the day wide awake just wanting to be held by his mommy. By the end of the day I was starving and exhausted, luckily he knows his bedtime is 6:00 and finally went to bed so his mommy could get a few things done.

We really appreciate all of the love and prayers of friends and family and are very grateful for the “angels” who have come to visit and take care of us here in the hospital. As I listened to Elder Holland’s talk the other day I realized that I knew quite a few angels. THANK YOU

I apologize to everyone that has called to check on us but I haven’t called back. My free time comes in the late hours of the night or the wee hours of the morning as I pump milk for my little guy’s next meal. I am hoping we’ll be out of here soon and life will settle into a more normal pace. The cold that got him in here in the first place is much better and I think we can go home as soon as he is off his oxygen.

We love you all!

Saturday, October 4, 2008

Purple

Besides the vicious cold that put us here in the first place, Ford, has since birth, turned purple and stopped breathing after a really hard inconsolable cry. This has worried me from the start so I talked to his pediatrician about it at several of his first few appointments. I also talked to his ENT doc (Dr. Yoon) about it when we went in to get his ears and uvula checked. The response I continually got was that small children quite frequently do this. It is a way for them to control there environment when they are really upset. He would grow out of it and I shouldn’t worry. I tried not to worry, but no mom likes to see her sweet baby turn that color and stop breathing so when the doctor mentioned low oxygen saturation levels I again brought up the fact that my little man holds his breath when he gets really mad. This time we got a lot more attention. While in the ER we got to see a different ENT doc who was concerned enough to do a laryngoscopy, which involved putting a little camera through his nose and down his throat to take a peek at his larynx. She believed the problem was related to reflux which was causing the tissue above the larynx to swell and cut off Ford’s air supply when he was trying to breath really hard. She prescribed some reflux medicine and told us it may get worse before it gets better but to check back in 2 weeks.

When Dr. Yoon found out we had checked into the hospital yesterday she decided to take the opportunity to check a little further down his airway to rule out other problems. So yesterday my little guy got a bronchoscopy, which involved a small camera going through his mouth and down his throat, past his larynx and into his bronchi to make sure everything down there was okay.

This time my little man had to go to the OR and be put under anesthesia for a little bit, which really made me nervous. That combined with little sleep made me a little sensitive yesterday. Luckily Children’s Hospital it right next to University Hospital where I had been working in the Professional Risk management department. Julie, the Risk Manager over surgery and anesthesia among other things, came and stood by while little Ford went in for his procedure. She explained things to me and asked the doctors all the right questions and helped me feel a lot better about this really scary thing I was about to do. I waited in the lobby for a very nervous 30 minutes until the doctor came out to talk to us. She ruled out several other possibilities and is pretty confident about her first diagnosis. Before the surgery Dr. Yoon talked to us about maybe trimming the tissue above the larynx to prevent it from closing up and cutting off Ford’s air supply, fortunately she did not have to do that. It will take a little while for the swelling to go down but we are hoping the reflux medicine will do the trick. My little guy is a little horse and has a very soar throat after all of that, but he came through just fine. Eating seems to be a little harder for him now but that should bet better as his throat heals from this procedure as well as his cold. We are still battling the cold by the way. While he is on oxygen he has been doing very well. He had a couple episodes yesterday when his saturation levels became quite low and they have taken some tests that wont be back until the end of the day on Saturday, so we are here for at least one more night, maybe more.

Friday, October 3, 2008

Plans Change

I guess it’s time for a blog update. I was hoping to post about how we were all packed and ready to move to California with a few stops in Idaho and Utah on the way, but that has been postponed. This morning before we went to pick up our rental truck we took Ford to his 8 week check up (hopefully to get the all clear before heading to the land of no insurance coverage).

Our little man has had a little cold but we were unconcerned because we knew he would get one sooner or later. Because of the cold, his pediatrician decided to check the oxygen saturation in his blood before giving him all sorts of shots. On the plus side we never made it to those nasty immunization shots. His oxygen levels were a little low so his doctor recommended that we take him to the Emergency Room. Not what we had planned for the day, but our lives revolved around our cute little guy so we headed straight for the ER. He spent several hours under observation and was finally admitted to the NICU late last night. He should be okay but we have been told to plan to stay at least until Saturday.