Friday, March 18, 2011

Another good day!

Bright and early Matthew and I along with our friend, Teresa, headed up to Omaha to meet with the ENT. He asked lots of questions, and answered our questions, and was on board for doing the Botox. He did say that Matthew will need to be in surgery for the procedure, but that the injections actually go in on the outside of the mouth, kind of in the cheek area, but he needs to be able to hold very still, so anesethesia is neccessary. He will have virtually no recovery period from it, only just waking up from anesthesia and 2 needle poke marks on each side of his face (similar to getting shots). This afternoon surgery scheduling called and scheduled for the 8th of April. They will call when it is sooner to give us a time.

Matthew had another fantastic day. He threw up three times; and twice it was because he was throwing a major ATTITUDE and he was not happy about being messed with this morning. He was able to spend some time in his chair playing with his new toys he got from early development, and we went for a walk around the block to get some well needed vitamin D.
I am cherishing each and every good day and hoping the next will be as good.

I was talking today about the fact that I write about how poorly Matthew is doing; how his doctor talks with us (and we had talked prior as a family) that he has been doing so poorly for so long and maybe this is our sign that Matthew is tired, and then he turns around and has GREAT days! While I am not ONE BIT unhappy about our wonderful days, I feel almost like we are crying wolf. He has been so sick on more than one occasion, we get ready for the worst, we prepare our family and Matthew proves that he is still fighting and God shows us "not yet." I don't like drama at all, and don't want any of the people reading thinking we're playing with their emotions. And I know that those of you who know us, know that isn't true; but sometimes I over analyze situations. My friend today told me, "the only thing constant about Matthew, is that he is constantly changing". Boy, isn't that the truth.

I HIGHLY believe in the power of prayer, and believe God has stepped in and intervened, at least for now. He has given us 2 really good days with Matthew, but I know things could swing the other way again in a heart beat; and God will still be in control. I still believe that God hears and answers our prayers, even if his answer would have been "no." Believe me, he surely has told me "no" this week. When you are faced with "making a decision", that is the last thing you as a parent want to do. This week, more than once, I begged God that if this was the end for Matthew, to please take him in his sleep before humans would make me make a decision. I didn't want to be "responsible". We love him too much to choose; but in another way, I knew that we love him ENOUGH that we could make the decision if we had too. That all being said, I don't want to have those thoughts for a long time. And I'm thankful God knows what the future is going to bring, and told me "no" this week. We're going to enjoy as many good days as we get.

Thursday, March 17, 2011

Storming the gates

We're feeling the prayers! Oh my goodness! We are so thankful for all of those we know and those we don't that are praying for Matthew.
Yesterday was a tough day. I debated even sharing anything until we knew for sure that we needed to make a decision. I was so sad yesterday. I needed to process it; and processing is equivilent to writing for me. I hate to get people worried unnessessarily. I don't think we are at an unnessessary point though. It's scary to think you have one more medical option, and "that's it." The idea of having to "choose" what is best for our son is scary. How do we know for sure if we are making the right decision?? What if we're missing something? All those thoughts are swirling through my head. And what on earth will I do without this little guy?? My mind and my thoughts overtook me yesterday. So I wrote. And I'm thankful I did. The outpouring of love we are feeling and the prayers that are storming heavens gates are amazing!!
We talked with his pediatrician late evening and she wanted us to give a dose the medication to help with secrections(Robinol) in the middle of the night. That will mean us getting up every night to give an IV medication, but she wonders if that will help get on top of his secretions. Also, with help from some diastat (that we used to stop the crazy seizures last evening) Matthew slept all night. His nurse was with him today; and I was able to get out of the house. I purposely didn't want to think about what was happening at home. I went and got a hair cut, and a coffee. When I got back around noon, his nurse was happy to report that he had done well for her so far. He had kept his medications down and hadn't gagged at all. They were snuggling and he seemed so much more content. His day continued uneventful. The most UNEVENTFUL day we've had in a LONG time. I took him outside today on a blanket and let him get some fresh air. He's been super content all evening.
Tonight, about 30 minutes before his evening dose of Robinol was due, he started coughing, and sounded really "wet". Within 15 minutes of giving the Robinol, he settled down and was breathing more comfortably. I'm hoping tomorrow that the ENT is completely on board with the Botox. I can't completely guarantee that his good day can be attributed to the extra medication; if fact I would almost guarentee you it was all the prayers that were sent up!
We sure are hoping the good days continue!! We know we have more of a battle, as one day does not make or break it for Matthew, and he is REALLY good at throwing in curve balls, but it's a step in the right direction!! I want a million more days like today! I'll take as many as God gives us!

Wednesday, March 16, 2011

Back at it again

Matthew was home for about 12 hours before the vomiting ensued. He has not kept his meds down for three days and is having numerous yucky seizures. He has now had three where he completely quit breathing for 45 seconds to 1 minute. The poor guy is having a rough go.

We took him to our pediatricians office today for a follow-up from the hospital. We discussed everything we have tried, and what we have left to try. Basically there are two surgeries we could do that would keep his medications down, but they wouldn't stop the retching. Both surgeries Steve and I are unwilling to put Matthew through; because they wouldn't solve the problem and his discomfort of retching. They would merely provide us a way "to keep him alive". Our pediatrician agrees whole-heartedly that that is the best decision for Matthew.

We meet with an ENT on Friday to discuss botox for Matthew's salivary glands. It is a fairly simple procedure that would make his salivary glands not produce saliva. We believe that a good portion of Matthew's issue is that he makes A LOT of saliva, and he has a super sensitive gag reflex. He also has difficulties swallowing his secretions, so when they build up, it gags him and then he can't stop. He is on a medication right now to help dry up his secretions, but it's not enough. We are hoping that this procedure will help Matthew. He will most likely have to be sedated as it includes putting a needle in his mouth; but it is our best chance at giving him happy days.

Right now, for the most part, Matthew's days are not comfortable. He throws up and retches alot, is having horrible seizures, and is generally uncomfortable. Our family has two goals or "must have's" for Matthew. Comfort and happiness. Right now we aren't achieving those. In a tearful conversation with our pediatrician, she discussed that if the botox doesn't help; we don't have any other options to make him comfortable and living. None. We will at that time need to make a decision about what is best for Matthew. Being alive and "living" are two different things. Right now Matthew is alive, but not living. He is having more bad days than good. And I don't want to put him through hell just to keep him on this earth. That is not life. And we are not willing to subject him to that just so he can be "alive".

Would you pray with us as we may have to make some incredibly hard decisions over the next few days and weeks? We love Matthew so much; and we want to do what is best for him and what keeps him the most comfortable.

Monday, March 14, 2011

We're home

Home again, Home again, jiggity jog. We are home. Matthew has his TPN infusing in his port (long term IV) and is doing well. Has been averaging 1-2 pukes a day; which is WAY less than before (40+ times a day). I'm hoping it lasts. Matthew throws lots of curve balls; so I never hold my breath. It feels good to be home!! His home nurse comes tomorrow and I fully intend on getting some cleaning done; but also some relaxing! IS good to be home.

Thursday, March 10, 2011

March 10th

Matthew is (once again) back in the hospital It just continued to escalate everyday with the amount of vomiting he was having; and when we took him to see his pediatrician on Wednesday, he had been just shy of 24 hours with out any urine output. She gave us the "go to jail, go directly to jail, do not pass go, do not collect 200 dollars" pass, straight to Childrens'. We were at least given the option of going by ambulance or car, which I chose to drive him as he wasn't vomiting at the time. (I had turned his feeding pump off 4 hours prior to his appointment, because I couldn't handle listening to him retch one more time).

The plan?? Put Matthew on TPN, which is nutrition that he will get in IV form. He has a port, so we will use that to give him his TPN. They are saying his gut will need a 6 month rest. 6 months is a long time. He gets 1 bag a day, and the cost....wait for it....$1000 a day! Thats some expensive gourmet! They tell me this will allow his gut to rest, and hopefully we can start feedings again after that; very, very slowly, of course. I do know that plans could change a million times between now and then, but that is what they say today.

I miss my kids, the normalcy of what people would call a boring day; you know doing laundry, vacuuming, making supper; that kind of stuff. I am praying for normal (or as close to normal) days soon.

If all goes as planned, we may get to go home sometime around Monday. I would really like to go home Sunday, as my kids are on spring break this week.

Sunday, March 6, 2011

We're home

We came home yesterday. Wednesday night and Thursday he ended up throwing up his meds but not his feedings, and so we weren't able to go home. Friday night and Saturday night he did keep his medications down, so they discharged us. Within 12 hours of being home; he started throwing
up. He did have a better morning this morning, but this afternoon he has constantly been vomiting. I'm not sure what has changed since the hospital. I am giving the same medications, the same formula, the same respiratory treatments. Talk about frustration. I need to be home for awhile, but if he doesn't keep his formula down today, I have a feeling we will be headed back to the hospital.

On a happier note, here is a picture I took from this morning, during his "vest therapy". Matthew loves his siblings. He smiled and looked at Mason through the whole book! It was taken with my cell phone, but it was oh so cute!

Wednesday, March 2, 2011

Still doing good.

Today has been fairly uneventful. We increased his feedings to full rate yesterday. He is still having some discomfort from his port surgery; but we have been giving him tylenol around the clock to help with that. He got an unexplained rash last night, but a dose of benadryl helped immensely; and the rash hasn't returned.

Today has just been a hang out day. We went for a walk; went to the auditorium to play bingo and got a good nap. He has only thrown up twice; and both times were after medications. The doctors feel that if he has a good night, we can go home bright and early tomorrow. Well, actually we will be stopping by at his neurologists office for a regularly scheduled checkup. And we will need to make an appointment with his pediatrician to get a plan into place that allows for a nurse to come into the home to start IV fluids if and when his retching returns.

We are ready to go home. I am in my my full "hospital funk" mode. For me that entails a very sarcastic attitude,not wanting anyone in my room, and keeping the door closed at all times. When it appears, I know we've been here too long. So hopefully, without much difficulty, we will be heading home tomorrow.