Tuesday, February 22, 2011

Thanks to all for your kind words and thoughtfulness!! I have just a quick minute and wanted to let everybody know that the pathology report came back NEGATIVE for PTLD or any kind of lymphoma..... whewhh!!! I cannot tell you how blessed we feel and how relieved we are to know that we will not be fighting that battle any time soon.

Matthew gets better every day. We had some rough nights, but thankfully Matt had President's Day weekend off so he was around to tag team. The ENT sent us home from the hospital with oxygen because Matthew keeps de-sating into the low 70's but comes back up to a normal oxygen saturation percentage with oxygen. The transplant team told us that another transplant patient who had the same surgery done did the same thing after surgery. We are trying to control his pain and enjoy his extra snuggles as he recovers. My Dad had his hip replaced a few weeks ago and when he came over yesterday to visit Matthew, Matthew wrapped Grandpa up in his favorite blue blanket and gave him hugs telling him to feel better. What a sweet boy! He is so in tune to other's needs and discomforts and tries to make everybody around him comfortable and happy. I love that little guy.

Joshua had a big week last week as well. He participated in his school's patriotic program- the biggest program of the year at his school put on by the fifth graders. He did awesome!! He also received his Webelos badge which he has worked so hard to earn. Luke got up on skiis for the first time and did great. Luke has a fun personality and makes us laugh so often in our home.

One of the biggest challenges during all of Matthew's medical issues has been juggling the needs of all my children and making sure they all feel loved and important. I know we mostly talk about Matthew in this blog, we started it to update everybody on the happenings with him during his transplant. I feel very blessed to be mother to of each one of my son's. I love all of them SO much!!

Monday, February 14, 2011

So..... the ENT doctor is where I last left off. I should know by now that I should never take ANY doctor's appointment for granted or think that I know what is going to happen at our visits. If I ever assume I know what is going on- things usually end up happening quite differently than expected. This was the case with the ENT! He did agree that Matthew had sinusitis and that Matthew needed tubes in his ears. However, he also told me that Matthew's adenoid needed to be removed because it is the size of a golf ball. He also told me that Matthew's tonsils are huge and need to be removed. He's not treating the sinus infection because he believes that the golf ball adenoid is holding bacterial infection in his sinuses that cannot be cured until the adenoid is removed. But here's the clencher: he asked me if I had ever heard of PTLD which I remember vaguely being told about when we met with social workers and transplant coordinaters prior to Matthew's transplant going over volumes of paperwork and signing page after page indicating that we acknowledged the risks involved with transplant. PTLD is post transplant lymphoproliferative disorder. Basically, when you are on high dose steroids there's always a risk that you are shuting off your body's ability to fight off good cancer fighting agents as well. The ENT told us that with transplant kids he often times sees lymphoma present initially in enlarged adenoids and tonsils. Really?? Come on- give me a break! I think that cancer scares will be an ongoing pre-diagnosis for every doctor Matthew sees because of his history. I'm not going to believe anything from now on until I see the pathology report!! I was reassured last week at my appointment with cardiology that Dr. Everitt does not think Matthew has lymphoma. I sure hope she's right!!!

So, Matthew's surgery is this Friday the 18th and he'll stay at the hospital over night. The doctors are a little bit concerned about bleeding because he's been on Aspirin basically his whole life. But, we've stopped the Aspirin and things should be just fine. Once again I'm pleading for everybody's prayers. Many miracles on Matthew's behalf have taken place before and I know they can occur once again. Matthew is a fighter. He is an unbelievable child who has taught me so many things in his lifetime. We appreciate your ongoing love and support. It's been 9 months since Matthew's transplant but really 3 years of many ups and downs. We truly have the most amazing support system. We could never handle the things thrown before us without all of you! Much love to all of you on Valentine's Day!!!

Thursday, February 3, 2011

I thought I should update our blog before it hits the 2 month mark since our last post... sorry!!
Winter has never bothered me much before this winter. I actually look forward to each season. However, the germs of winter this year are killing me! This year has actually been one of our healthiest- for Joshua and Luke that is. Whatever luck we have experienced with Joshua and Luke has been counteracted by Matthew. Remember the little cold Matthew was getting over about 2 months ago??? He's still getting over it! Matthew's pediatrician treated him for a chronic ear infection as a result of this cold with 4 rounds of antibiotics. Matthew has had a fever for over a month and has been extra sleepy. We were told Matthew may have developed luekemia which is a common cancer seen amoung transplant recipients because of the steriods they have to take to avoid rejection. We went to see an infectious disease doctor and he told me to take a huge sigh of relief because Matthew did not have luekemia, however; he suspected Matthew was in rejection. I MUST be insance because I immediately felt a lot of relief. What is wrong with me??? We ended up in cardiology doing lots of bloodwork and an echo, but everything looked good there. Echo's are not completely reliable in ruling out rejection, but cardiology wanted to explore every option before rushing in to do a heart biopspy when everything else looked good. More relief. Last week we spent 4 out of 5 days at the hospital or in doctor's offices. This week we got a CT scan of Matthew's head and discovered that he has severe sinusitis and horrible ear infections. I'll take it over leukemia or rejection! Matthew's transplant cardiologist told us that she really wanted to get on top of this because sinus infection can enter children's brain in immune suppressed patients- so we have an appointment with an ear, nose, and throat doctor tommorrow. Why not?? We haven't seen an ENT specialist with Matthew yet. They are planning to scope him to see what kind of infection he has so we can treat it approriately because obviously it hasn't gone away given the 40 plus days of antibiotics he's already been on. Matthew will probably get tubes in his ears as well.

So, in a nutshell, this is how my last two months have been spent. I really want to get all of this resolved because any time Matthew has sickness that imitates the signs of rejection I always worry that he could be in rejection, but his sickness masks it. That's what happened a year ago when Matthew was sick and his sickness was covering up the fact that he was actually in heart failure needing to be put on the transplant list. Tommorrow we will get more answers and hopefully a gameplan to get Matthew better.

I think my new best friend is Punxsutawney Phil- the groundhog who did not see his shadow yesterday therefore, predicting an early Spring. :) Let's all pray he's right!