frustration

Tuesday I spent most of the day on the cell phone instead of pushing into classes with my students. I was beyond frustrated!

This last weekend I realized Gabriel was going to run out of his Viagra. I went in to get the perscription filled. It just so happened that that one perscription is the one that had 0 refills. GRR.

I called first thing Monday to get the script filled. The nurse called me at 9:30am to tell me that she had called it into our local Walgreens. Monday evening I went to Walgreens to pick the script up and was told that they had never recieved a call and had no idea what I was talking about. I called the doctors office which of course was gone for the day. I called the emergency line because I knew there was not enough medication for Tuesday morning. Gabriel and I waited 45 minutes to hear back from the doctor on call. Gabriel started to get upset with chilling at Walgreens so we decided to head home and wait for the call. The call never came.

Tuesday I again called the doctors office first thing. Gabriel was only able to get half of his regular dose of medication. I spoke with the nurse who called in the script on Monday. She informed me that she left a message on Walgreens pharmacy's answering machiene on monday. I called Walgreens to find out what the heck was going on. They again informed me that they had no idea what i was talking about. I had them call the doctors office to work things out.

I recieved a call from the nurse telling me that she did not know how the function (hint get a new pharmacy) but that they were filling the script as quickly as they could.

I then got a call from the pharmacy saying that they could not fill the script. WHAT??? According to this person they had upped the concentration of the viagra when they filled the last perscription and that we were giving Gabriel a double dose. Ok, filp out time. Why hadn't they told me that they made the concentration stronger? Why hadnt anyone caught it? Will Gabriel be okay? How could I not have known?

I called the doctors office to find out what the heck was going on and what to do about Gabriel's taking extra medication. Come to find out the guy at the pharmacy had no idea what end was up. The concentration was the same and the amount I was giving Gabriel was correct. He was completly wrong.

I called him to inform him he was wrong and to get the perscription filled. I informed him that he needed to call the doctors office again and get his story correct before giving me any infromation. I told him that I wanted a call once he had his information correct and the perscription filled.

I got a call back telling me that he still could not fill the script because my insurance would not pay for it. I informed him that this medication is not a choice and that if he could not figure out the insurance part we would pay for it and I would make calls to the insurance and figure out that part. He then offered to call the insurance and try to figure things out. Goodness.

End of this long story, I was giving Gabriel the correct amount of medication, insurance payed their portion, we got the perscription and we will be using a new pharmacy.

Can you believe it was THAT hard to figure things out. That took me away from my students off and on ALL day. What a waste of good time!

GO STATE

Michigan State is in the final four!!!!!!!!!!

I haven't written in a while due to being ill with a ear infection and a sinus infection. Me, not Gabriel thank goodness!

Gabriel is doing well, we are just worried about his weight. He will get weighed tomorrow and we will see how he is doing. We are crossing our fingers that he is gaining.

I tried to take some pictures of Gabriel tonight but he had a mind of his own. He just wanted to watch his hand so in every photo he has his hand in front of his face. Silly little boy. I will get some pictures another day.

Picture time

mostly good news!!!!!!!!!

We will start with the bad news. Gabriel lost some more weight. He is below 12lbs. We are working on what to do about his weight. He gets to start on getting back to formula today so hopefully adding fat back into his diet will help some!

The cardiologist had mostly good news. The regurgitation is down a lot and so is the pressure in his lung! The doctor was VERY pleased with how things are looking on his end. He was pleasantly surprised with Gabriel's progress! He is so happy that we don't have another appointment with him for two months! The medication Gabriel is on is doing what it has to at this point.

Thank you all for your thoughts and prayers!

nurse update

The home nurse came again today. Gabriel is not gaining weight even though he is taking in more calories than he has to. He is getting tube fed when he begins to sweat and in his sleep. Gabe and I decided that I should take a half day on Wednesday and go with them to the cardiologist. We will see what he has to say. Our nurse has been sending him Gabriel's weights.

I am sorry for the frustrated tube post yesterday. Gabe is an amazing father. He does many things that I hate doing like taking out the dirty diapers from the diaper genie. I was just upset because Gabriel was extra hard to tube yesterday and poor Gabe was catching a few moments of sleep at the time I put the tube down. We are all allowed to be frustrated once in a while.

GO STATE! Sweet 16 baby!

feeding tubes

I HATE feeding tubes! Gabe avoids putting them down, in fact, I don't think he has ever put one down. I have to be the mean one and put that stupid tube down his nose into his stomach at least once a week. Of course Gabriel is very good at pulling the tube out so I have to put it down more often than that. He gets stronger and stronger it is getting harder and harder. GGGGGGGGGGGGGRRRRRRRRRRRRRRRRRRRRR

8 working days until spring break

We have professional developement next friday, 3/27. So I really do have to work but it is not the same as having students. The friday afterward is our first day of spring break:) We have the first whole week in April as spring break.

I can't wait to get some quality time in with Gabriel and Gabe. We have had some amazing help these last three weeks. Gabriel's Grandma Hubert stayed with him the first week, his Great-Aunt Billi the second and his Great-Grandma Mathias the third week. Of course his Grandma and Grandpa Purdy got to see him on a very regular basis in there. It is now our little families time.

Gabriel sees the cardiologist on Wednesday next week. I will not be able to attend this appointment, it is KILLING me. Gabriel will start on his 25% regular formula and 75% portagen diet which he will be on for a week. He will then have a x-ray to see if we can add more formula. We are hoping the pressure in his lungs is down and the right valve is working better after the dosage of viagra being upped over the last few weeks.

Gabriel is still having trouble sweating through his clothing on a regular basis. We are tubing him if he starts to sweat while eating but he sweats even when he is not eating. We are hoping his weight is up because he has been getting "free" caleries. He is getting tubed about three bottles a day. It is hard to tube him when we know he can eat those bottles by mouth but we also know that he needs the caleries without the effort. Boy, I hope this isn't a long time thing. He sure gets grouchy when we are tubing him and he still wants to eat his bottle. I have found that we end up trying to tube him as much as possible while he is sleeping so that he is not so grouchy. He does not like suckies so that doesn't work and is opinionated just like his daddy. I love them both!

The kids are coming back from lunch so I have to run. Hopefully this isn't too crazy. I will read it again when I get home and correct it, hopefully.

almost friday

The weekend is almost here!

almost hit 70 degrees outside

What an amazing day. I was able to get some yard work done and enjoy the weather!

This morning started out a little rough. I was feeding Gabriel when he decided to explode from both ends. I was able to clean both of us up, get the cloths in the washer and make it to work before kids were to be in my classroom. Pretty good, huh?

Gabriel has learned how to hold his own bottle;)



Gabriel this evening- too cute!

great-grandma is here

Great-grandma is here to help with Gabriel this week. I am so excited to see them together! I don't remember any of my great-grandparents. I had a great-grandma still alive until I was two but do not remember her. It is so nice that great-grandma is able to come visit Gabriel, and even help take care of him! Should be a fun week minus the fact that most of my awake hours are spent at work with other people's kids instead of with my own.

Lucky for me the kids I spend my day with need me. They need someone to read to them and some structure in their lives.

Love you all! Have a wonderful week.

silly boy

Gabriel has learned a few new things in the past few days. He learned how to make weird noises with his mouth. One is a "oink" sound and the other is buzzing his lips together. I took a video of him buzzing his lips but the sound does not transfer from my cell phone to this media correctly. I posted the video anyway because it is SUPER cute.

quiet day

We had a wonderful day today. It was amazing outside (in the mid 40's), so we took Gabriel for a walk to enjoy the weather. The weather man (who is often wrong) said that it is to get up to 60 on Tuesday. Boy, do I hope he is right. Before long we will be at the beach enjoying the sunshine!

I hope everyone is having a good weekend!

same same

Today was good in the fact that nothing interesting happened. Gabriel slept most of the day. Poor kiddo!

Another small step back

Gabriel lost some more weight. He also started not feeling good yesterday evening. He has been in sleeping or in tears, the smiles aren't really coming out. I called our home nurse this morning to see what she thought we should do. She called our pediatric doctor to see what his suggestion was. We were in his office a few hours later then in x-ray. On top of losing more weight Gabriel also has brocholitis (inflammation of the airways). We will be back at the doctor Friday to see if the inflammation is down.

On top of all of that I was woken up this morning at 5am to very loud talking coming from outside. Upon further investigation there were cop cars and fire trucks lining the street. A house across the streets basement had caught on fire. Everyone got out safe thank goodness! They are still investigating the exact cause of the fire. The cops and fire fighters have been back several times through out the day.

It has been a crazy day so I am going to cut this short!

a step back

The home nurse came today. Gabriel lost 10oz in the past week. Time for concern. He has been taking everything by mouth, we are recording when and exactly how much he is taking down for the next two days. The nurse will be back Wednesday to see how things are going. He has been getting the correct amount down but is he using too much energy getting the food down that it is hard on his heart? We honestly don't mind the feeding tube but it is nice to have him eating on his own.
Our nurse rocks, she called our cardiologist right away to see what step he wanted next. It is nice to have everyone on the same page.
For every step back we take more forward. So, forward we will go! :)

another week

Back to work. This week is going to be a long week as the second week is each month. For some reason every group I am involved in has meetings the second week of each month. This means I will get home around 5:30 each night. Gabe heads to bed as soon as I get so that he can have some much needed rest before work.

Gabriel is doing amazingly well healing. He is such a strong little man. He is sitting up with very little assistance, before long he will be sitting up on his own. He has been taking down his portagen bottles like a champ, even eating more than the required amount. He hates his medication but takes it. Gabriel grabbed gabe's hand the other day and pushed it away as Gabe was about to administer the medication. It was pretty funny. As Gabriel is getting a little older he is starting to show his spunk. I love seeing it (until he is a teenager of course).

Lunch is almost over so I need to head back to work.

Lovely

Gabriel, Gabe and I had a wonderful day today. Gabe had to work last night so he wasn't awake for a lot of the day but we still got in a little family time. I LOVE getting to see Gabriel when he is wide awake. By the time I get home from work Gabriel is getting close to bed time.

Gabriel has been so talkative lately. He seems to want to talk to everyone and everything. Right now he is laying is play mat talking to himself. The mirror is in his hand and he is literally talking to himself. It must be a good conversation because he is laughing up a storm.

Gabriel has also decided that EVERYONE must see his cute chest scars. He wants to be naked all of the time. If he can't be naked he wants his feet left out so that he can play with them. What a cutie pie!

Gabriel has been completely off pain medication for three days. He is such a strong little guy! He is back to himself in the fact that he doesn't cry unless he wants a bottle or is trying to avoid sleep. Mommy and Daddy love that!

Weekend is here

I finally get to enjoy my little man all weekend! Sadly daddy has to work tonight (his Saturday):( So I only get to enjoy half of my duo.
Off I go to do some more baby talk!

NEW PICS

cardiologist

Well, we had out first appointment with the cardiologist after Gabriel's surgery. He has higher pressure in his right lung and more regurgitation on the right side of his heart than when we left the hospital. We will be upping the sildenafil (Viagra) and waiting three weeks to see if that works. We are in a waiting game at this point. Our cardiologist did remind us that sometimes children require more surgery. One day at a time I guess. Our cardiologist and his office are GREAT. They explained every step of the echo. The cardiologist came in and read the echo in front of us explaining things as he went along.

On the other hand Gabriel has to make it to the 25th of March to begin to stop taking the Portagen. He will add 25% formula for a week (x-ray), 50% for a week (x-ray), 75% for a week (x-ray), then 100% (X-ray). If all x-rays come back clean along the way he will be off Portagen in two months! Course he is eating it on his own now. It is so good to see him eating on his own and not having to "tube" him!

update

Gabriel pulled his feeding tube out while I was at work on Monday. I love Gabe very much but he is not comfortable putting a new tube down. He will do it if he HAS to but if he can find a way to avoid it he will. Instead of putting a new tube down he decided to try to get Gabriel to eat Portagen again. Sure enough out little man sucked it down. WEIRDO! I have not had to put a tube down. He is eating all 120 ml every 4 hours. He is taking his medication and everything by mouth!

Back to work

Well, I went back to work today. I would have lost our insurance if I did not head back today. It was very hard to be away from my little man for so long. I missed a my students. Most of all I missed the staff! They are amazing. I had no idea that so many of my co-workers were following Gabriel's surgery. It was nice to not have to recount what all has gone on. Many people were praying for Gabriel's successful surgery, many more than I even knew about! Makes me come to tears just thinking about it.
To everyone who reads this blog, you may not comment, I don't know who all of you are, and I may not even know you personally, but THANK YOU! Thank you for caring about my little family. They mean the world to me and it is nice to know that we mean something to so many people that they will take time out of their busy days to check on my son and to pray for his successful surgery!

Help is on the way!

Gabe's parents have been helping by watching Gabriel for a few hours here and there. My mother came up to help with the feedings in the middle of the night when I need sleep and mid-day when Gabe needs sleep. It is still going to be a long week but having everyone's help will be amazing!
Gabriel is healing so well! Here are a few pictures of our little man