Friday, February 19, 2010

Day +325: Under One Roof!

A quick update on day +325 for Max (day +5 for Matt in the hospital)...Matt came home this afternoon and is doing well!!! The procedure to remove the stone this morning was a success, thanks to the anesthia and he was able to eat some solid foods for the first time in 5+ days so, the doctor let him come home! We are thrilled to be back together under one roof again and hope it stays this way until Max goes to college!

Max continues to do well too. He is still coughing, somewhat congested and a bit more tired than usual but, up to most of his usual tricks around here. ;)

Thanks, again for all your love and support. Our journey continues...more soon.

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Thursday, February 18, 2010

Day +323: Progress

It's day +323 for Max (day +4 in the hospital for Matt) and things are progressing for both of them, slowly but surely. It's been another long week with a few surprises, as usual but, we are beginning to see the light at the end of the tunnel for Matt and that really helps.

Max is doing well. He is still coughing a little bit here and there but, has no fevers and is running around like a wild-man, playing basketball everyday and generally up to his old tricks around here! You can tell pretty quickly when Max really isn't feeling well because he doesn't shoot hoops about once every 1/2 hour like he does on a normal day. Since about Monday afternoon, he has been back to regular rounds of dunking and horse with Alex!

Matt is still in the hospital. They have found a gallstone in the duct outside the gallbladder that is causing digestive juices to back up and inflame both the liver and the pancreas. They tried a procedure under "conscious sedation" on Tuesday afternoon to remove the stone and, unfortunately, it did not go well. Matt ended up not breathing for a bit as a result of the medication that they were using to sedate him and they had to stop the procedure and reverse the medications to get him breathing again. Just a little scary, to say the least! His dad and I were waiting outside the procedure area for his doctor to come out when it was over and all of a sudden, we heard "FAST team to the Diagnostic Center STAT" repeated twice over the hospital intercom. We both froze and looked at each other, not knowing what the FAST team was but, fearing it was for Matt. Sure enough, about 10 minutes later, the doctor came out looking a bit flustered and told us that he had to stop the procedure because Matt had struggled with the medication and stopped breathing for a bit. One of the nurses later said that he was "purple on the table and they had to turn him over to bag him". Lovely. Just what we needed, huh? Once I heard that, I lost it. I asked to speak to the doctor and I kind of let loose on him for a bit. He listened and assured me that he would not let it happen again. He wanted Matt to rest for a few days after that incident before they tried the procedure again. So, the plan is for Matt to have the procedure to get the stone done again tomorrow under general anesthesia with an anesthesiologist right there with him the whole time. If this second try is successful and Matt can eat some solid food tomorrow afterwards and keep it down, he may be able to come home tomorrow. Of course, we would ALL love that...especially Matt!

Matt is in good spirits and actually has felt better late yesterday and this morning than he had in a while. But, he had nothing to eat until yesterday and that was just clear liquids so, he is very weak and still a bit dizzy from the pain medicine. He also has a stomach ache this afternoon which may be from two antibiotics they are giving him to prevent infection. Overall, now that we know what is going on, we realize that it is resolvable and, with time, Matt will be feeling much better again. There are more stones in his gallbladder so eventually, he will have his gallbladder removed too but, not for at least a few weeks. They want his digestive system to continue cooling down before that takes place. We have been told by a couple of different people at the hospital that they had never seen someone's liver and pancreas numbers that high before so, it will likely take some recovery time before Matt is really feeling well again.

We are relieved that Matt's issues seem to be relatively easy to repair and that Max is once again healthy and feeling good but, we are again exhausted. Tuesday was another one of those totally exhausting days - in every way - mentally, physically, emotionally and spiritually. Sitting next to Matt while he recovered from the "procedure gone wrong" was scary and I experienced a wealth of emotions. I realized how much we have been through together this past 13 months and what a partnership we have forged as a result. We were a strong couple we are even stronger. He is my love, my best friend, my partner and I couldn't imagine not having him here with me. We make a great team - he always pulls me up when I need it and I do the same for him. He is a fabulous husband and dad and we all love him.

We have just had too many of these kinds of days this past 13 months. We long for the days when our biggest worries were how we would get the kids to school on time and get all their homework done admist our work schedules and their extra-curricular activities. We know that we will get back to that place eventually but, we also know that through the experiences we have had over the last 13 months, good and bad, we are forever changed. Our perspectives on life are not the same...our fears and worries are completely different....our eyes have been opened in ways we never expected or even imagined. While we long for the fun days to return, we know we always want to remember these tough ones...they will make the fun times even better and more memorable.

We have been overwhelmed once again by the love and support of our fabulous community - our families, friends, neighbors and church. Yet again you all have shown us how much you care. Thank you for shoveling and snowblowing our driveway, for yummy meals, for gifts, flowers, cards and calls...and for your thoughts and prayers.

I want to leave you on a positive note today. Last Sunday, for Valentines day, Max and I woke up at Children's Hospital, once again. But, thanks to Max's Meals, there was a bit of excitement in the air! There were signs posted in the parent lounge in the BMT Unit and on the Hem/Oc Unit that a Valentine's lunch would be provided by Max's Meals that day. Much to our surprise, we got to be recipients, once again, of the generosity of our support community and got to see first hand how you all are brightening tough days for lots of families. My parents friends, the Cummins family, very generously donated the luncheon from their Lee's Famous Recipe Chicken business. The families of A5 got to enjoy chicken, mashed potatoes, cole slaw, green beans and biscuits, along with homemade cupcakes prepared by my mom. It was all a hit and if you look in the comments from my last post, you will see that one of the families near and dear to us that is still in the BMT unit down there with their precious son, Brayton, really enjoyed the meal once again. Thank you to all of you that have supported Max's Meals and especially to the Cummins family for making this Valentine's luncheon possible!!

More soon....

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Monday, February 15, 2010

Day +320: Quite a Journey!

It's day +320 for Maxer (day +1 in the hospital for Matt :) ) and I thought I'd just give everybody a quick update. As Sarah reported for you all yesterday, we've had quite a journey the last few days! I'm exhausted so, I'll be brief and add more details in later.

The great news is that Max is home and doing well. We were discharged from Children's on Sunday afternoon and he is continuing to show improvement. He seems to be beating the RSV now, thanks to the help the doctors gave him down there. They loaded him up with more antibodies through an extra dose of IVIG Saturday night and into the wee hours of Sunday morning and three rounds of IV antibiotics. He did have some bronchitis developing so, they wanted to knock that out to prevent any pneumonia. Their intervention seems to have worked and it was definitely necessary that he stay down there Saturday night to be monitored, etc. The four hours in the ER and every 15 minute interruptions throughout the night were worth it!

Unfortunately, Matt remains in the hospital tonight and will likely be there for some time yet. He is at Anderson Mercy (thank God), which is only about 5 minutes away so, I was able to get up there twice today to spend some time with him and talk with his doctor and nurses (we have had about 10 inches of snow in Cincinnati today, just to add to the fun around here). He is now under the care of the GI group at Mercy and saw Dr. Ionna today. I was there when he came in to check Matt out and chat with him. At this point, he is strongly suspecting that a gallstone has become lodged in a precarious place where it is causing the ducts that lead to the gallbladder/liver and the pancreas to back up, thus causing inflammation of the liver and the pancreas. Matt's liver and pancreas blood levels are through the roof so, they are trying to determine what is causing this inflammation and stop it. However, they can't do a whole lot until things calm down a bit in his gut. So, at this point, they are keeping him on IV fluids and pain meds, along with some antibiotics and buying some time so that his gut can cool off some. They are planning to do a scope down his throat tomorrow to look for the source of the problem (possibly a stone) and did a CT today as well, looking for the culprit. We are hoping they will have more answers tomorrow and that a bit more of a plan will be developed from there. Matt is more comfortable tonight than he was last night by far. He remains lethargic and a bit disoriented/spacy from the pain meds but, even that is improved from last night in the ER.

I have been here the last two nights with the kids and able to spend some good quality time with them. They are concerned about their daddy but, they understand why he is in the hospital and don't seem scared. My parents have been a HUGE help with them throughout the past few days, as usual. Don't know what I would have ever done this past year without them! Thanks, Mama and Papi - you're the best!

My only complaint is that I am SICK of hospitals!! I would have never imagined that I would know them so well!!! UGH!!! They are no fun, no fun at all! But, this past few days has absolutely reminded me again how precious each day is and how much we need to appreciate each one. Never, ever take your health and happiness for granted. Count your blessings. Celebrate the good stuff. Live in the moment.

More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Sunday, February 14, 2010

Another Bump on The Recovery Roller Coaster

Two hospital visits for the Meyer's in less than 24 hours :( Please keep the Meyer's in your prayers.

The first was Max. On Saturday he was feeling tired, had a bad cough and ended up running a fever in the late afternoon. A fever = automatic trip to the hospital so Kristi quickly packed a bag and headed down to Children's with Max. He was treated at the hospital for RSV, a virus that is typically only common in babies. He stayed overnight and came home late afternoon today (Sunday). His impromptu trip to the hospital ruined his NBA Slam Dunk party he had planned Saturday night with his cousins. As you recall, Max had requested to attend the NBA All Star Game this year as part of his Make A Wish, but was not able to attend due to NBA rules and timing with his recovery. So this party was going to be his own little NBA All Star Jam celebration. He was really bummed he had to miss it, as we all were.

The second was Matt. Shortly after Max arrived home this afternoon, Monica, Matt's sister, took Matt to the ER. From previous posts, you might remember that Matt has had several attacks of abdominal pain in the past month or so and no tests have been able to uncover the source causing these attacks. The pain was severe and debilitating today, so Monica took him to the ER. He has been admitted to treat pancreatitis. He's on IV fluids and antibiotics now and we're not sure yet when he will be released or what the next step is, but we'll keep you updated. We just ask for your prayers for Matt too. I am sure it is difficult for him to relax and not stress now, but we know that is what is best for him. Please pray that Matt will be recovered soon and home with his family and that Max will soon be off the recovery roller coaster and enjoying a healthy 8 year old life, free of trips to Children's!

Aunt Sarah (standing in for the very talented writer Kristi, and Matt, Max, Alex, Ellee and spud)

Wednesday, February 10, 2010

Day +315: Continued Good News

It's day +315 for Max and I have been meaning to do an update for some time now but, haven't been able to get to the computer until today! Last Friday we had a good visit with Dr. Davies down at the Day Hospital. We got continued good news along with a few surprises. Max's progress thus far remains positive and we are at a point where he can do a bit more, very cautiously. Dr. Davies indicated that Max's immune system is working now, although not in "top notch" fashion. Thus, he does have some ability to fight off germs and infection, coupled with his continued monthly infusions of IVIG (the IV immuno-globulins from donors which help bolster his immune system). With all this in mind, she told us that she thought it was safe for Max to cautiously venture out a bit more without his mask! For example, she said that he could accompany me to stores during the week as long as we avoided anyone that was coughing or appeared to be ill and practiced good hand washing. She recommended keeping his mask handy in my purse just in case and really just staying away from people as much as possible. Great news! Max and I were smiling ear to ear!

We have been putting Dr. Davies advice to the test the past few days and I have to tell you, it has been stressful. While Max has enjoyed getting out a bit more, it is so hard to know whether we are protecting him enough, especially during this cold and flu season. We all went to church together last Sunday, for example, as Max REALLY wanted to go (thus the picture above). It was wonderful to be able to be there together and, while we all enjoyed it, Matt and I have already been debating about trying it again. There were a few people coughing and, although we sat in the back row and had Max wear his mask in and out and during communion and really not touch anyone else, it was still worrisome for us. Even Max cast a few worried glances at me as we heard people cough during the service. We all SOOOOO want to be able to do these things again but, I think we are realizing that it's not worth the risk quite yet. We need to continue to be patient and find those things that we can do that are truly safe and will keep Max healthy.

On this note, I just got off the phone with one of the Nurse Practitioners we have been working with at Children's. Unfortunately, she was calling us to let us know that Max's engraftment percentage from last Friday has fallen to 87.8%. It has only been lower than this once this past year and, while she said that Dr. Davies is not too excited about the drop, she does want Max's level to be checked again in two weeks so that they can monitor it and decide if intervention is necessary. Of course, I called Matt as soon as I hung up and we are both concerned. We have been here before and everything had worked out just fine for Max but, I tell you, the worry never seems to end. Just when you think you are getting somewhere in this process, you are told that you aren't.

I also discussed Dr. Davies latest advice with our Nurse Practitioner and asked her to follow up with her for more clarification regarding what is safe for Max to do at this point. However, as the two of us discussed it and I heard her opinions, I was reminded to be patient and to take our time with getting Max out in the real world again...especially at this time of year. Her words that are sticking with me were, "I think I know you well enough to know that you don't want to have any regrets." EXACTLY!!!

So, we are searching for ways that we can safely get Max out a bit and keep him happy. He is SO ready for more and deserves a chance to celebrate a bit and have some 8-year old fun. With that said, I am planning to take he and Alex, along with cousin Ben to Max's favorite indoor skatepark tomorrow afternoon - Ollie's! Max and Alex have not been in well over a year and they are totally psyched about the trip! I think it should be safe there. Generally, it is an older crowd with most of the kids being in High School. In addition, we are going to go right when it opens, when it is typically pretty empty. Finally, Max really doesn't get near any of the other kids while riding his scooter. I'll be sure to take lots of pictures and share the excitement of this trip with all of you soon.

Along with everything I've shared with you so far, we did get two other pieces of somewhat surprising news at our visit last Friday. The first was that Max will have to avoid all public pools through the summer. Unfortunately, this means that we will miss-out again this summer on the fun times we typically enjoy at our swim club. However, we are adjusting, as usual, and already planning other fun water related things we can do around home here - potentially involving a new Banzai (for those of you that don't know what that is it's a GIANT inflatable water slide)! Max will also need to avoid the public pools in Florida when we go with Make A Wish however, he will be able to swim in my Grandma's pool while we visit her and can swim in neighbors pools this summer, as long as we know that no one sick has been in them.

The other surprise last Friday was that Max will remain on his Cyclosporine quite a bit longer than we had originally thought. At the start of the BMT process, Dr. Davies had told us that he would be on the immune suppression (Cyclosporine) for probably 6 months post transplant. At the 6 month mark, she told us a year post transplant. Now, as we near the year mark, she is saying that he may be on it until the end of 2010 or possibly even longer. Her reasoning for this is to protect Ellee's graft. She feels that Max's Cyclosporine level is safe at this point and that there is no rush to wean him from it. By keeping him somewhat immune suppressed, she is protecting his remaining marrow from gaining strength while buying Ellee's marrow time to grow and flourish so that when she does wean the Cyclosporine, Ellee's marrow will be sure to take over and "win" the tug-of-war. We have come to terms with this surprise and accept it for the most part, although it does cause us some continued worry. The insert that comes with every bottle of Cyclosporine warns that it can cause Lymphoma so, that tends to make you a little concerned. However, we are reminded that people who receive organ transplants remain on Cyclosporine for the rest of their lives to protect them from rejecting the transplanted organ.

You can probably sense from reading this post where we are...we continue to feel blessed that Max is doing as well as he is and yet, we continue to worry, worry, worry. This is a LONG process and we have again been reminded that we need to be patient. We do believe that remaining patient now and keeping Max healthy and protected will enable us to get to the end of this road more smoothly and will pay-off for him in the long run. It is just a struggle to continue to be patient. We would LOVE to just be able to do what we want as a family and not have the worries that we do.

When we begin to be overcome with worry, we try to remember where we have been and how far Max has come and we try to follow the same advice that we have lived by the past 13 months: live in the moment, making the most of each day with the ones we love and being sure that they know it. Max's time will come, the time will come for all of us to be out and about again without worry. We just have to trust and pray and take things one day at a time.

More soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)