Saturday, September 26, 2009

3 Hour tour = 2 day hospital stay

So Matt went in Thursday for his MRI. Little did we know our 3 hour tour would become a 2 day stay.....

We went in all good to check in. He wasn't cranky at all and loved playing with the toys. He made a friend there and attempted to play with him but he was a little cranky I'm sure for not being able to eat. We get all checked in which takes forever and a day but we trooped through. They gave him some versed to make him drowsy. Watching a 1 yr old get drugged up, although sad, is hilarious. It was like he was drunk.....and hes a happy and giggly drunk. He made us laugh through a time of worry so it seemed a way for him to say it would be OK. They took him back to the MRI machine and we got to walk back with him. I got to go in the room since I didn't have any metal at all on me and got to be with him while they put the mask on till he was asleep. It made me feel a little better that my face was the last one he got to see. Then we were told to go to the waiting room and they would come and get us when they were done. So we waited....and waited some more....

An hour and half later we see Matt being wheeled by the waiting room and hes on his stomach...his bed is inclined to the sitting position and hes waking up/struggling with them. I couldn't tell if it was Matt or not but realized it was and they were going without us. They told us to wait and they would come and get us when they were ready. So we waiting some more....a few minutes later a nurse came and got us to take us to the recovery room with Matt. He was sleeping and i was so glad to see him and know that he was alive.....and now the journey begins.

While we were waiting for him to come out of his slumber the nurses seemed concerned that his O2 levels weren't at the numbers they would prefer. We got him to wake up to see if that would help but it didn't....it actually seemed to make it worse. While all the other little fellas around us got to come and go here we sat with Matt....still waiting. They decided that since he wasn't getting enough O2 they wanted to take him upstairs for observation just a little longer. So up we went......

To the Ped's unit at Sacred Heart. A cute little place made just for kids. We got to our room and settled in. Around came the nurses and the Dr. who went over Matt's history and mine from the beginning of my pregnancy...his birth....up till now. Everything was put on the table and they were very troubled that a lot of tests had not been done on him that should have been red flags to be done on him.....so the testing stage begins....

They were able to get the MRI results....nothing that indicates why he has a right sided weakness....but when they looked at the MRI the found he has sinunitis, which is a severe sinus infection. Could be the cause for all his runny noses and his inability to kick colds. Although this could explain why he might not be getting enough O2 they wanted to be sure so they took a chest/stomach x-ray. It was pretty cool to see the picture afterwards. Lungs look good but they found a lot of air in his stomach, may be the cause of all his digestive/bowel issues??

By this time Matt was ready for bed and was pretty groggy and had just fallen asleep when the blood guy came in to take some blood. Matt was not happy about being woken up to have his blood taken. He was a trooper though and they were able to bleed him of the blood they needed.

Later that night the nurse was kind enough to let me know that they would need some more blood as 1 vial didn't take but they would come in the early early am to take it. So all through out this Matt is on blow by oxygen. This means that it is not a cannula and its not hooked up to his nose. But he is hooked up to a monitor that shows us his heart rate and his O2 levels. They are in the low 90's which to them is not good...it should be 100. When hes relaxed and sleeping his levels dip down pretty low. When this happens the monitor goes off....so we put the O2 up to his face...mind you he does not like this one bit, but his levels go back up so that's all that matters. They were concerned that he was breathing like this but to us this is his norm. This is Matt....this is just how he is. We have brought this up many times at the Dr. but they just attributed it to his cold....nothing more.

All night is monitor is going off...I'm getting up....the nurse comes in to see if hes OK....i fix his toe so his levels can be read....finally at one point during the night i just gave up and let the nurse come in to fix his toe.....i realized this is her job this is her thing she needs to do it....i just wanted some sleep.
End of day 1

Day 2
Matt is woken up at 5:30 to have his blood drawn again. We sleep a little more then i figure at 7:30- 8 its time to get up since the new nurse will be coming around after shift change. She comes in check on him takes his vitals. The Dr. comes in to talk to us after this. He explains that the blood work came back OK....all his levels look good...nothing in the danger zone to be worried about. We are scheduled to have another test done...his Cystic Fibrosis test which we have been wanting done since he was born but his Dr.did not see any reason to test for it. I was so glad to finally be having this done as well. They stimulate his muscle in his arm to sweat then stick a wristwatch type thing around his arm tight that collects the sweat....he did great and sweated good for them. Enough that the collection guy was rather enthusiastic about it. A nutritionist also came in to see him as well since hes having such a problem eating more solid food rather than pureed food. She gave us some ideas until he can go in to be evaluated in November. So much for a little guy...geesh....but were not over yet. That concluded our afternoon....nothing else for them to do really but wait for him to be discharged. Finally around 2ish they decide to let us go but Matt is taking a much needed nap and i wasn't about ready to wake him up to go as much as i want to leave. Finally around 4 we were able to break out of the place and be on our way.

Many questions were answered but even more were added for use to wonder and pray about even more. I'm glad we got the answers we did and am patiently waiting for some that are to come. My little man has been through so much, nothing compared to others pain and grief and suffering but it is ours just the same. Thanks for all of those who prayed for us and kept us in your thoughts. I know it was not life threatening but its still scary to be told your baby has to stay in the hospital for further evaluation. Many things race through your head....prayers are said and you just hope for the best.




Sunday, September 20, 2009

My poor baby

My poor baby. I just don't know how else to explain that. It makes me so sad to even begin to explain what is happening or what could possibly be wrong with my baby. When Matt was born we all noticed that his right eye didn't open all the way. To us it was nothing unusually just that he would prefer to keep that eye closed. As he got older we noticed that he did have a droopy eye. He has been going to the eye Dr in Spokane and she sees him every 3-4 months to make sure that that eye is making the progress that it should. Nothing unusual. Well when he went in for his 9month check up i brought up that when Matt stood up he would turn his foot outward. I didn't want him to keep walking like this and end up having surgery later when he was older. So he was sent to a physical therapist for this. Well good bless her soul, she is the one who noticed that Matt's whole right side is week. From the way he crawls to the way he stands he has more strength in his left side that he did his right. She said this would be something worth looking into. We went back to her a few times and Matt got an x-ray of his hip to make sure there was nothing wrong with his hip. He was meeting all the milestones that he should be so i wasn't too worried. That is until his 1 yr appt.

Yet again it was brought up that his whole right side is week. His Dr. explained that this should not happen in a young person and that she would like to have him go to Spokane to have an MRI of his head done. That and the fact that he is very underweight, he has yet to meet a handful of milestones that he should have meet a long time ago and that he still is having problems eating and with his acid reflux. Being so shocked but not surprised i did not ask what she thought his problem might be and being the curious person i am i turned to the Internet. Wrong thing to do when you have a sick kid. I know i shouldent think into this too much but it is all just so scary. The 4 possibilities that i found...and they are very logical possibilities given his circumstances are 1) He had a stoke in utero 2) a very mild form of Cerebral Palsy 3) Brain tumor and 4) nothing at all. I want there to be nothing wrong with my baby. I don't want him to be sick. I don't want him to have anything wrong with him. I just want my baby to grow old and lead a good like and be healthy. But i know in my heart that sometimes we are given challenges and he just might be my challenge in life.

So off to Spokane we go to have an MRI. It was scheduled for Sept 17. No food after midnight and clear liquids till 6:30....my baby was going to starve and be very very cranky. So we get to the Pediatric Surgery Center and check in. They weight him...take his vitals and show us to his room for the time being. They give him a gown to wear and his bracelet to make sure its him. Then they realize how stuffy of a nose he has...well DUH!!! I told you this all yesterday when you called me to get his history. They explained that with the sedation it makes your nose even runnier and the fact that his nose was already runny he has a high chance of choking and making it go from bad to worse. Our wonderful nurse knew that we drove all the way to get this done so she tried pulling some strings to do something different but it was a no go. No anesthesiologist were available.....so no MRI.

Now i have to wait a whole week till NEXT Thur the 24th to find out what is wrong with my baby. I'm praying with all my might that nothing is wrong and this is all just a fluke....but its hard to throw out my mothers intuition.

On the way home though we stopped at Cabelas and couldnt resist getting his pic taken in this awesome chair that i just know he wasnts for christmas.


1st Birthday!!!

Matt officially turned 1!!!

and he did it all right before my eyes. Its hard to imagine one year ago he was just a newborn in my arms and i was completely oblivious to the love i would be able to give to such a tiny little person. He is my miracle...my one and only special person in my life. i never thought i would be able to love someone as much as i love him and to be able to be so selfless and give everything i have to him.



Matt was soo sick on his birthday but it went on. He was at the tail end of his sickness so i figured we would just go ahead with it as planned since everything was already planned and ready. That morning we tried to to pictures but that just didnt work. We got a few good ones but not what either of us wanted. He was just not a happy camper at all. So were gonna reschedule....hopefully soon but we'll see. He slept most of the day and was a little happy when all the people came but for the most part he was pretty whinny and just wanted to be held. I knew he didnt feel good so we didnt pressure him into anything. The BBQ was a hit though and at the end all the food was gone and there were no leftovers....darn that midnight snack anyways.





More weddings

My does time fly by...where do I even begin. The month of August went by so fast and here half of September is already over. Towards the end of August myself, Matt and Ryan went to Ryan's sister Chelsea's wedding at Lochsa Lodge. I recomend anyone to go. It was the perfect place and so much to see and do along the way if your up for a nice long drive. Matt got to experience his first time in a Hot Spring and boy did he like that. It was like a big bathtub for him. The weekend went by way too fast thats for sure. On the way back we stopped in Moscow to visit some of Ryans college friends and it was nice to visit and they could see how much Matt has grown. The last time i think they saw Matt he was only a few months old and now he's almost 1!!!!


Matt being his usual goofball self


Enjoying the springs


Bathing with Mom