As our world turns

I am passing time in Matthew's hospital room, so I thought I would post an update on him...
Friday he woke up with a little cough and sneezing, by Saturday his cough had progressively gotten worse and he was wheezing. I always start Albuterol breathing treatments as soon as he shows any signs of a cold. I also give him an inhaled steroid as well. I had been giving him his regular doses of all his breathing treatments and they just didn't seem to be working. I put him to bed Friday night and he just wouldn't go to sleep. So not like him as all, he usually grabs his blankie rolls over and is out. Finally at about 1 am I went into his room and his breathing was very labored. His respirations were pretty normal for him, he was just working really hard to breath. So I decided to take him in to the ER.

I tried to go to bed on Friday to hopefully get a little sleep. That didn't work out so well. Finn woke up screaming so I took him into the spare bed with me. He coughed and coughed and was running a slight fever. Then a short while later Matthew was up. So needless to say this mommy did not get any sleep last night.

We got to the ER( side note...The Childrens ER is now open at the hospital we take him to CHOC...Children's Hospital Orange County. It was very nice to have an all pediatric team and all the rooms are private. A big plus from having to go to the main hospital ER and possibly be in a shared room with big people and them not knowing how to take care of kids.) He was seen right away and they started breathing treatments immediately and gave him an oral steroid. He was sounding more clear, but his breathing just was not improving. So they made the decision to put him on a high flow nasal cannula. Also since they put him on high flow O2 he needed to be admitted and had to go to the PICU. We got settled into our room at about 6am. Poor baby had been awake all night. Daddy came to relieve me at about 10:30 this morning and he walked into a very agitated baby. Daddy was able to get the doctors to give him some Ativan to help calm him and he got some much needed sleep. They put him on a continuous albuterol treatment and it seems to be helping a little. They also started chest percussion. Basically they use little foam like cups and beat on his chest and back. Looks pretty brutal, but it isn't. It really helps to loosen things up so he can cough the crud up. He is doing ok so far. He keeps telling me tonight that he wants to go bye bye and outside. I know sweet baby, me too. :(

I am staying the night with him so I am looking forward to another night of not sleeping. I just hope both my boys are feeling better soon. I feel so terrible that they both need mommy and I can only be in one place at a time. Nothing like mommy when you are sick. Even though daddy is great and he tries really hard they just do not respond to him the same way when they are sick.

I am praying for health for my family and for it to stick around for awhile. I loath you cold/flu season and CDH.

Mommy

Happy 1/2 Birthday!!!

My baby boy is 1 1/2 today. I can not believe what a ride it has been. I wouldn't change it for the world, but it has not been the easiest thing I have ever done either.

 Matthew came home in December at two months old from the NICU. We pretty much stayed home bound for the rest of the winter, then we were kind of thrown for a loop and had to make a very difficult decision. We had to move for my husbands job. We up and moved away from all of our family and friends. We have done this before without kids and it was a lot easier then.

 Everything was going good with the move and adjusting until about September/October when Matthew started to regress pretty rapidly. Until this point he had been almost sitting up unassisted, could hold his head up, roll over form front to back and back to front, could stand with assistance for a minute or so, and was taking bites of food. Well, ALL of that changed. He could no longer sit up or even hold his head up. He could not roll any longer and he was not making any progress forward in therapy. This was very concerning to myself and his therapists. We were all at a complete loss as to WHY he was doing this. In the meantime I had been trying to find a pediatrician that would be comfortable taking care of Matthew. I finally found one and took him for his 1 year appointment and she measured his head and it was really big. He is only in the 20-25% for his height and weight, his head was off the charts big. She referred me to a neurologist so I called to make an appointment. The first appointment they had for an "urgent" request was 2 months out. So we kept the appointment and just kept a watch on him. We continued to go to his pediatrician for his RSV (Synagis) shots and she would measure his head everytime and it just kept getting bigger. She finally told me to take him to the ER. This was in December.

 So I waited a couple days and took him. I had Finn with me and my husband was in town, but in LA which without traffic is a good hour away from the hospital. With traffic it can be hours away, well that was the case this day. The boys and I get to the ER and I tell them I wanted a CT scan for Matthew per my pediatricians request. We got into a room very quickly and within 10 minutes we had seen the ER doctor and within 30 minutes we had been taken to get a head CT. We were waiting for the results, which they claim take 45-60 minutes to come back. Not the case with us that day. We had the results back within 20 minutes of the scan. We had a confirmed diagnosis of Severe Hydrocephalus (water on the brain). A Neuroseurgeon PA came in within an hour and had stuck a BIG needle into Matthew head to draw out CSF fluid from his brain to check for any infection. I was then told that he was going in for surgery to place a shunt immediately. The only thing we had to wait for from that point was the results of the fluid. No infection, so surgery was a GO. Well from the time we stepped foot into the ER until he was being wheeled into surgery it was less then 4 hours. Now remember I told you my husband was in LA, well he did not make it to the hospital in time for surgery. One, because he was taken to surgery so fast and two, traffic was awful that day. SO I had Finn with me the whole time. He had to sit in with the nurses while I went into recovery with Matthew. Not the most ideal situation, but we made it work. Jim finally showed up while Matthew was still in recovery. So Finn did not need to be with the nurses any longer. Matthew was then admitted to the PICU for the next 6 days. (Needless to say we never saw the neurologist, we are strictly followed by a neurosurgeon now.)

We went to the neurosurgeon for a follow up on December 21st. Well to my surprise once again we were told we were getting admitted back to the hospital, due to an infection in Matthew abdomin.  So again I had Finn with me, since we do not have any family here to leave him with for appointments. We get to the hospital and Matthew is wheeled back into surgery to externalize his shunt for a few days and then go back into surgery to re-internalize it. We ended up spending our Christmas in the hospital. Which the year before we made it out of the NICU right before.

Since that last surgery Matthew has made great progress forward. He was able to hold his head up almost immediately after. He can sit up is rolling over again and is starting to put some weight on his legs. Still not even close to standing on them, but will bear weight with assistance. He is talking up a storm. He has about 15-20 words he says all the time and he will try to say anything. It has been quite reassuring to see.

Feeding is a different story. He has a LONG LONG way to go there. That is our biggest battle right now. Hopefully one day we can get him to put some kind of food or drink in his mouth without gagging or retching. Until then we will just keep up with his feeding therapy and hope for the best.

Now that I wrote a novel, the whole point of it is to say that we do not have to go back to the neurosurgeon for a WHOLE Year. So after the last few month of pure craziness this makes me very happy. It makes my heart very happy to know that my boy is making such great progress. He will overcome all the things thrown at him. He is one strong little boy. Not only is he strong he is the sweetest little guy, with a bit of onery starting to come through, which is a welcome sight.

So Happy Half Birthday to my little stinky guy. Mama loves you to pieces.

Light at the end of the tunnel...

Today we went to the Pulmonologist for our regular 2-3 month check up. We have the possibility to see a different Doctor each time we go, because they call it a clinic and you never know which Doctor you will get. We have had the same Doctor for most of our visits. So today was no different we saw a new Doctor, which I ended up really liking, so I hope we can see him again. He was VERY happy with what he saw in Matthew. ( a little back up first...) Last visit they decided to keep Matthew on oxygen until his respiration rate slowed down. He has always had a faster then "normal" respiration rate.
Well today Matthew's respiration rate was great and has been. The new doctor was very impressed considering Matthew has been fighting a cold. He said that the fact he had a cold and it didn't really bother him was a great thing. So he ordered a sleep study to see if we can get rid of the oxygen. YAY!!! I am not at all nervous about this, as each time he has been in the hospital lately he takes his oxygen off and still saturates at 98-100%. I know the sleep study is a lot more involved, but if they are looking if his saturation levels drop I can tell them that they do not. So I don't want to get my hopes too high, but this did excite me quite a bit. Wow, what would it be like to NOT have to haul around oxygen? I am pretty sure Matthew understood the doctor, because since we left there I can not keep his oxygen on him. Little Turkey...We are tentatively scheduled for a nighttime 10 hour sleep study, but the doctor was telling me he wanted a nap study, which is done during the day at nap time. So we will see which one it is for sure. Then we go back in June and they will decide if he can come of oxygen or not. So we have a few more months with it, but I think I finally see that light at the end of the tunnel.

Other then that things have been pretty quite around here. Matthew did great in his last surgery and was able to come home that day. He has recovered really well, all except for his cold. He seems to be getting over that now. We all had it, but ours was only about a 4-5 day thing. After several breathing treatments and steroids we managed his cold at home. Thank the Lord.

We just have all of our regular routine visits coming in the next few months and I am hoping it stays that way.
Even though the new Children's Hospital is opening section by section, I don't really need to go see it. I can see it from the outside as we drive by going to doctors. I am totally okay with that.

Here's to hoping June brings GREAT News,
Jaime

What's up?

I thought is was time for an update:

Matthew has been doing great. He has been making great progress in therapy. He is almost sitting unassisted...he can sit for about 30-45 seconds without falling. He has started talking and doing some baby sign language. He says about 10-15 words, which I didn't think he would do for awhile due to him not using his mouth to eat. I have heard you need to use all the muscles needed to eat to talk. So I was a little surprised he is talking as much as he is. As stated above he is still not taking anything by mouth. He goes to OT twice a week and we work on feeding him, but he has no interest in food. He will put ANYTHING else in his mouth, but not food. I am hoping that it will just click with him one of these days. He has started drinking water out of a cup so that is great progress. He only takes about 5-10 mls at a time, but at least it is something.

A few weeks ago I was changing his diaper and noticed that his left testie was looking very swollen, so we took a trip to the pediatrician and she said he had an inguinal hernia. Of course he did. Why wouldn't he. Everything that seems to go wrong with his results in a "hernia". So we scheduled an appointment with a urologist and found out he needs surgery to fix it. With that being said surgery is scheduled for this coming Tuesday February 26th. I am hoping and praying it will be an outpatient procedure, but they are making sure he has a room in the ICU just in case. Since he has not done anything in life normally they do not want to take any chances. I am hoping that this does not set him back any at all. I just want to see him keep making great strides in his development.

After we went back to therapy after the first of the year, they reevaluated him and gave him goals. He is already reaching his goals for OT and he is making progress towards his goals for PT. I am so proud of all the progress that he has made. All of his hospital stays and illnesses set him back quite a bit. It was very hard to watch him regress on all of the things he was doing. I am keeping a very positive outlook on all of this and treating it as a learning experience. I just hope there is not a next time for needing any of this information.

I will update after his surgery..

J

A good start to 2013

So far it has been a good start to 2013. No hospital visits for almost a month. That is a new record for the last few months. About three weeks ago we saw his pulmonologist and he thought he was looking good considering everything he had been through. He discontinued all of his oral medications that day. Yay! He is still on oxygen and will continue to be until his respiration rate is more normal. He still hangs out in the 40-50bpm range. Still faster then "normal". I was ok with this am
Nd knowing what the future plans are make it easier to deal with. It is the not knowing plan that I don't like very much.  His Physical Therapist says he should be off  once he starts sitting up and gaining more strength. She says that alone should help his breathing.

Speaking of therapy, he has been making great progress. He is able to hold his head up again and can almost sit up unassisted again. He still does not like tummy time at all, but that doesn't stop any of us from putting him on it. He still protests a lot in therapy, but now we know it is just protesting and not something wrong with him. His OT is going ok. (This is his feeding therapy) we can get him to take a bite or two but he is refusing to swallow things. He likes to let it just pool in his mouth. This will be a very long road getting him to eat and gain confidence in his swallowing abilities. You can tell he is not confident he can do it. He has had a swallow study and passed it, so we know he can swallow properly.

Today we had our cardiology and GI follow ups...
Cardiology went well said he was very happy with his progress and feels we are ready to drag our appointments further out. So now we go every 6 months instead of every 3. Yay for forward progress. He also said his pulmonary hypertension looks the same, which last time he said it was very mild to gone. He said at this age you can not say for 100% certainty it is gone, but he is pretty confident it is at the very worst very very mild. Yay again. The PH monster can go away and never come back and it would be too soon.

His GI was happy with him as well. She saw him shortly after his last hospital stay and could not believe everything he had been through. He had lost some weight, but was given a pass due to his hospitalizations. Since his last visit 3 weeks ago he has gained almost 2 lbs. I know that doesn't sound like much , but for a 100% tube fed and CDH kiddo this is great. CDH kiddos seem to not like to gain weight. She took him off of infant formula and put him on pediasure. I sure hope he tolerates it. He has been kind of sensitive to new formulas. I have been told insurance should cover it due to him being tube fed, so I sure hope that is true in our case.

Over all his doctors appointments went really well. We have is neurosurgeon follow up tomorrow and I hope that goes as well. His incisions are still pretty pink and the doctor he not liked that in that past so fingers crossed Matthew passes inspection tomorrow.

Matthew has just gotten better and better everyday. He is so much more mobile and vocal then he was about 3 months ago. It is so nice to have my baby back.he rolls around and sits up and plays with toys all the time and absolutely loves playing with his brother. It is so much fun to sit and watch   them.

We have managed to stay healthy this cold and flu season. I just hope and pray it stays that way. That is the last thing Matthew needs right now. We have been being very careful, but it is hard when you have so many Dr appts. And therapies to go to each week. We will just keep staying inside and avoiding busy "people" areas and hopefully we can make it through the rest of the cold/flu season without any of it.

I think that catches us up for now, I will keep posting when I have any information to share.

Here we go Again!!!

Here is a little back story as to Why Matthew had surgery again.

When he was in the hospital a month ago he missed his 1 year appointment with his pediatrician. So I rescheduled it for 2 days after he was discharged. During her routine assessment she discovered his head was really big. Like off the charts big. He head was in the 25% for all his other visits, so this was quite alarming to her. She immediately told me to get into contact with a neurologist. I called and talked to them and they did what they do and I ended up getting an Appt for December 21st. I called the neurologist office to see if I needed a CT scan or MRI before his visit and they basically just blew it off and said they would decide at his visit. They then told me they needed some extra paperwork from my Pediatrician. So I took her the paperwork that she needed and she wanted to re-measure Matthew's head. It was bigger from 2 1/2 weeks ago when he was in there getting his Synagis shot. So she suggested we take him to the ER. So that is what I did.
I got up yesterday morning and got Finn off to a friends house and Matthew and I headed to the ER. We arrived at about 10:20am and by 10:30am I had seen the Doctor and by 10:50am we had had a CT scan. CT results came back about 10 minutes later and is was determined that Matthew had severe Hydrocephalus. Needless to say they said Surgery would be today and was scheduled for 2:00pm. GULP!!! Another Surgery???? The neuro surgeons PA came in and did a procedure on Matthew in the ER. He stuck a decent sized needle in Matthew's soft spot and drew out some of the fluid. They need to make sure it was not infected before they knew which procedure they were going to do. About 30 minutes after that was done we were rolled down to pre-op and he went into surgery at about 1:30. He did not have an infection so they ended up placing a shunt into his head. (I will do my best to try and explain this below). The surgery itself took about 30-40 minutes but he was in recovery for quite awhile before I was able to go back with him. He did great during the surgery. This one seems to be a bit tougher on him then even the previous one. Seems to be in more pain. Which is totally understandable.

What is Hydrocephalus?
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002538/

What is a shunt?
So what they told me is that they take a straw type of a tube and run that from the head to behind the ear and connect it to a valve behind his ear.From the valve they place another tube from the valve and run it down his neck, chest and into his stomach and the fluid can drain into it. The valve it electronic and completely programmable. So the Doctor can adjust it as needed. We hope he doesn't have to have this replaced, but it is a very real possibility that he will need the shunt replaced several times in his life.

My poor baby boy has been through so much in his short little life. I just hope he can catch a break soon. It terrifies me beyond belief every time he goes into the hospital. I never know what will happen.I try not to worry too much, but it is impossible. And the stress that you endure while your child is in the Hospital/Surgery is unlike any other stress I have experienced. It is not a healthy stress for me. It is a stress that makes me not want to eat, drink or sleep. All these things you need to be there for your baby and I can not seem to MAKE myself do any of them. I am usually the opposite with "normal" stress I want to eat ALL the time. I am hopeful this will be a short hospital stay and he will feel SOOO much better after this. All I want is my happy baby boy back. He has been miserable for about two months now and it just breaks my heart knowing that we could have had this taken care of sooner, if I hadn't waited on the neurologist clinic. I have learned a lesson and that is to ALWAYS trust my gut and Mommy instinct.

We just added one more thing to have to worry about all the time now. But I am forever greatfull to have my little boy here with us. So many CDH families are not as lucky as us. I do not take a single day with Matthew of Finn for that matter for granted. I cherish every moment I have with them, because you never know when you won't have another one.

Have I ever said that I HATE CDH.. Well I do. It is an evil awful defect that doesn't just get fixed with the repair surgery. It is a life long problem for a lot of kids and Matthew is showing that this might be the case for him. I urge you all to help raise awareness ANY way you can. Matthew and SOOOOO many other babies need it. I wish no other families had to go through what we have. Sadly there is a baby born every 10 minutes with CDH and 50% of them DO NOT make it. I know I have said this before and I will DEFINITELY say it again. My efforts for raising awareness are far from over, they may have just started.

Thank you for reading,
Jaime

Another Surgery

Here is the story of what happened to Matthew:

He woke up Tuesday morning at about 2 a.m. crying and as I picked him up he started to retch. ( What I mean by retching is gagging-dry heaving. He can not throw up due to a previous surgery.) So I got a bottle and let his G-tube vent into the bottle and what was coming out was not the right color. It had a brown tinge to it. Just knowing what to look for in CDH kiddos I knew brown was not good. He continued to retch 8 times in an hour. So I woke Jim up and we decided to take him into the ER. So we got Finn up at 3 a.m and we all got in the car and drove to the ER. We spent about 7 hours total in the ER with a 3 year old. Thankfully he did amazing. While in the ER they did an x-ray and blood work. X-ray showed what looked like a reherniation, so they immediately called surgery. They came down and said they were confident he had reherniated. They finally admitted him and then they did an upper GI on him to make sure what they were going to find when they got in there. Well the upper GI showed he had a esphoageal hernia. So his stomach had herniated into his esophagus. Needless to he definitely needed surgery AGAIN. Thank goodness it was not a rehernation of the diaphragm.  So he was scheduled for surgery on Wednesday at 9 a.m. They got him in to surgery at about 10:30 and he was in recovery by 12:30. The surgeon said " He was a tough case and had lots of scar tissue" He said he was a mess in there, which we already knew that from the surgeon who preformed his other surgeries. The next day was the worst for pain for him and the poor little guy was just miserable. They were giving him pain meds, but they didn't seem to really be working as well as we would have liked. They gave him some different meds the next day and he has seemed to be a lot more comfortable since then. Each day he is improving and feeling better. He passed some gas today so we are hoping they will start feeds tomorrow. Once feeds start and go through his system and he poos then we can go home. The said he is not a typical surgery case of need to make sure he can tolerate feeds, because we already know he can tolerate them since he has been for months already. 

So the procedure the surgeon is the same thing that Matthew had on a previous surgery. He had to go in and completely undo his Nissen Fundoplication and then redo it. Here is a link to what a nissen is again.

http://en.wikipedia.org/wiki/Nissen_fundoplication

He said instead of stitching on one side he stitched it to his own tissue and then stitched it on both sides in hopes that it will never have to be redone. I sure hope so too.

I just hope that this surgery fixes everything with his stomach. It has been a very active organ. It has been up next to his heart, then it traveled to adhere itself to his patch and now it wanted to see his esophagus. I am hoping that it has decided to behave itself. I don't want ANY MORE surgeries. I know that this is the future we face with having a CDH kid. You never know when something like this will happen. There are so many different scenerios that can happen, you just hope that they won't. It is not the most fun to have to always worry if they get sick or start acting a little off. It always make you think the worst. With Finn if he gets sick and is a little off you just chalk it up to him being sick. Matthew is a different story all together. He gets a cold and I worry he will end up in the hospital. He throws up and I worry he has a bowel obstruction, reherniated, or something else all together. I hate to say I live in constant worry, but I kind of do. It is not something I really enjoy, but it is our normal and I have embraced it for all it is worth and I have learned to know my boy inside and out and I know when something is not right. 

He had been acting a little off the last couple of months and I just could not put my finger on it. Now I know I need to trust my gut and when something is not quite right. I am thankful they got it figured out and he is on the mend now.

Thank you for all your thoughts and prayers they mean a lot to us.

Jaime