September 30, 2009

Pray for Kate

I have posted about Kate before, but I think it's very important to post the link to er blog again. Kate is 5 years old and has a very aggressive brain tumor. She started her third round of a very strong chemo treatment early this morning. They found out a couple of weeks ago that the tumor had "significally decreased in size." Please pray that this round of chemo eliminates it completely.

This link is a photo shoot that was done for the family from a cancer survivor who heard of Kate's story from someone elses blog. These pictures are absolutely beautiful and capture Kate being a 5 year old little girl rather than a little girl fighting for her life.

Please pray for Kate.

September 25, 2009

Open Fetal Surgery Picture

Below is the picture of Max from the open fetal surgery we had on February 13, 2008. He was 22 weeks 5 days gestation when this picture was taken. To me it isn't very graffic, but to some it could be. To me, it is the most amazing picture I have ever seen. This is my son before he was born. This is my son in his first appearance. This is my son on the day his life was saved by Dr. Crombleholme. To me it's proof that miracles do happen. What a beautiful thing.

Thank you Jessica for making it so that I could post it.

Please Vote

Please vote every day for Cincinnati Children's Hospital Medical Center to win a game room. They are in 7th place right now and need to be in at least 3rd place to get the game room. You can vote 10 times a day. The website for voting is

You do have to register, but please don't let that scare you off. It's a free contest. These children need this gameroom. Please vote, if not for the hospital itself, for the children who are stuck within it's scary walls.

Thank you,

Tim, Beth and Max

September 24, 2009

Bored... and scared.

"Bored" is the best way that I can describe our no longer going to the hospital several times a week. We're bored and I refuse to take Max out of the house unless absolutely necessary because of the swine flu outbreak in our area. So... we're bored. We miss our doctors and nurses. I miss sitting there in my rocking chair chatting with other adults. Granted, we have had to go to the hospital twice this week for other appointments, but it's just not the same. I can't joke around with other departments like I can the dialysis unit. We miss you ladies :o(

Onto the results from all of the tests and appointments Max has had over the past month. The sleep study came back better than the one before. Max has a mild case of sleep apnea (which we knew), but it's fixed with his 1/4 liter of oxygen. The doctors think he will out grow it within a year or two. With that said, pulmonology doesn't need to see us for another 3-6 months. So basically right before the transplant.

As far as Max's renal (kidney) ultrasound goes... I didn't ask for the results because I forgot and Dr. Alam didn't say anything negative about it, so that was good enough for me. BUT... I was reminded once again about how dangerous and high risks Max's next two surgeries are going to be. I am petrified of the outcome. I can't help but think about the chance that Max may not make it through all of it. It kills me to think that everything that he has been through and the one thing that we have work so hard on could take him from us. I just hate being reminded every three months that Max isn't out of the woods yet. Needless to say I have been very down since his appointment yesterday. All of this rain, swine flu cases and robberies going on in our area aren't helping at all. I am just so scared. To top it all off, we were really hoping that both surgeries would be over in 2010, but Dr. Alam told us that he would preferably not perform the reconstruction until a year post transplant, which means we move into 2011. I just want this to all be over so that we can move on with building our new house, extending our family and go on a very long and very far away vacation. I just want it all to be over.

I ran into another transplant patient, Peyton, in the lab and her mother was willing to answer some of my questions regarding the bladder reconstruction. She told me that it is very scary but that the end result is much better than before the surgery. She also told me that Peyton's surgery lasted 16 hours. That is not a typo. I knew that particular surgery was a long one, but 16 HOURS!!! Oh my goodness!!!!! I am going to go insane.

On a more positive note, I have heard from a little birdie who knows another little birdie that Dr. Sheldon is in remission. Thank you God. Dr. Alam (this is not who told me) informed me that there is a chance that Dr. Sheldon could be back by the time Max's transplant is scheduled on the spring. He did say that he probably wouldn't be the one performing it, but he would probably sit in on it. This, of course, makes me feel a whole lot better. Please pray that this is the case and that he will be there to watch over Max during these two very difficult operations.

I have to put this out there because I am so thrilled to have seen it. Our RCNIC nurses are doing a presentation in Texas on Max's PD. They sent me the presentation in PDF form. You'll never believe this, but there is a picture of Max back when he was delivered partially at 22 weeks during the open fetal surgery. As soon as I saw it I starting sobbing. I have been wanting to see these pictures since the surgery and to my surprise there it was. His tiny little leg resting against the surgeons hand as he put a little hole in his belly. UNBELIEVABLE! The file was in PDF form so I have no way of copying and pasting it into the blog. I am trying to get my hand on the rest of the pictures so that I can show them off. It's absolutely amazing!!!!

Anyway I am going to end this with prayer requests. We need you to please pray for Max and for Tim and I as we prepare for the upcoming surgeries. 2010 and 2011 are going to be two very rough years for us. We need as many prayers as we can get. Most importantly though, we need you to pray that Max pulls through both surgeries without any major complications (infection being the biggest concern for the transplant). Please pray for our strength.

Please pray.

September 17, 2009

Milestones over the past 4 days...

Ever since Max pulled his catheter out this past Saturday it seems to be that he is on a learning kick. He has learned to do sign "want", "more" and "all done." He started combing his hair tonight after I gave him a bath, brushed his hair and handed him the comb. He learned where his head is on Tuesday in the course of a few minutes. He got himself into a sit from laying on the floor today with Mr. Dan (physical therapist). Now of course he wouldn't do it for Tim and I this evening, buy I am still considering it a milestone partially accomplished.

Oh yeah! Did I mention that he pointed out most of the animals that we asked him to identify on his flash cards? No? Well he did. That's right ladies and gentlemen, my 16 month old ESRD little boy knew his animals!!! That was a proud mama moment!!!

Max has also started saying "mama" and "nana" again. He had these at one point but dropped them. Well I am very happy to say that they're back.

Update on Max's Medical Status:

Max is doing FANTASTIC!!! We had our first PD clinic appointment on Wednesday and all went great. His labs looked wonderful (after not having hemo for 5 days). This means that he is doing very well on only doing PD. They got a length on him and he grew 1.8 centimeters in the course of one month. His head also grew a great amount, so much that the doctors wanted the dietitian to recheck it. We do have to add another shot to our medication list. We have to give him his red blood cell producing medication in a shot form every Friday on top of his growth hormone injection that we do every night :o( Poor guy. He doesn't even flinch with the growth hormone, so hopefully we get the same result with this new one.

We have our pulmonary follow up (sleep study results) on Monday and a urology appointment on Wednesday (we meet our new doctor since Dr. Sheldon is still out). We also have to go back to the PD clinic for more labs and of course to see our second family (we miss you guys already). I'll post next week on how everything goes.

That's all folks. I have absolutely no bad news to report today :o)

Enjoy your gorgeous weekend!!!

September 12, 2009

"uh oh"

This is exactly what Max said when the nurse walked into our ER room this evening. Yes, you heard that correctly. We spent the evening at the CCHMC ER. Let's rewind a bit...

Tim was playing in a softball tournament all day today, so Max and I went to see him play for a few hours. I then brought Max back home for his afternoon nap and I started to clean up around the house. I heard Max waking up from his nap around 5:00pm. I went to get him a few minutes later. I disconnected his feeding tube and was about to get him out of bed when I realized something was bunched up under his shirt. I immediately thought that it was the gauze that we put around his gtube to keep it from leaking since that was off and had to be replaced. NOPE.... it was his hemo catheter... dressing and all. I frantically started searching to see if it was completely out, which it was not. At this point I am in total and complete panic mode. I started getting things to redress it but quickly realized that it takes three people in the dialysis unit to do this and I was alone. My mind was racing for an idea on how to get this usually sterile area that was now exposed redressed. The only thing that I could think of doing was to put a bandage over it and call the nephrology fellow on call. I called Tim first so that he could start heading home since I knew we were headed to the ER. I then called the main hospital number to get the fellow on call paged. 15 minutes later I was still on hold and on page number two. The experience we have had with the fellow that was on has always been very good, so it was unlike her to not answer her pager. When they paged her for the third time I immediately thought that they must have had the wrong number. Anyway, we ended up talking to the attending and she told us to head to the ER.

So I packed Max's bag just in case they decided to keep him and we headed over. Miraculously we got taken back right away. There we waited for 15 minutes to have Max weighed and then got put into a room and met with another nurse. And then another nurse. And then a PCA. All asked the same questions. 30 minutes later a resident came in and for the fifth time we went over what happened and why were were there and what Max's history is and what surgeries has Max had and what/if any meds Max is on. YADDA YADDA YADDA!!! I should note that at this point I have told everyone of these people that NEPHROLOGY AND SURGERY NEEDED TO BE PAGED!!! About 30 minutes later the same resident came in and said that she needed to look at Max's catheter to see what kind he had. So she walks over to him, pulls his shirt up and starts trying to take the Tegaderm dressing off that I put on to secure it so that it wouldn't fall out. I didn't really realize what she was doing at first, but when I did I asked her why she was taking his dressing off. I went on to say (in a not so friendly way) that his site was suppose to be sterile and that if she took it off it would get pulled out. Tim jumped in and said, "Max is strictly under nephrology care and we would like for them to be paged before anyone touches this catheter." Then... are you ready for this... SHE FREAKING ROLLED HER EYES AT US!!!! OH MY GOSH I about jumped her shit (sorry for the french).
I yelled..."DO NOT ROLL YOUR EYES AT ME. I have asked 5 people to page nephrology... has it been done yet?"
Resident: "Well no I was going to go do it now."
Me: Well then I would suggest you do that so that we can figure out what they want to do with this before you go taking the dressing off."
Resident: "Okay I was just trying to help."
Me: "Well I understand that, but I would really like for his primary doctors to be contacted first."

Are you ready for this... SHE FREAKING ROLLED HER EYES AT ME AGAIN!!!! I about jumped her shit again!!! (sorry for the french, again) I was so freaking fired up at this point I was almost in tears.

So she left and must have paged the attending because the attending then came in to talk to us. I was still ticked off at this point so I started going off on her telling her that nephrology and surgery needed to be paged now so that we could figure out what we needed to do about this catheter that is falling out. I then felt so guilty, because she said in the sweetest voice that everyone had been paged and that they were waiting to hear back. Talk about feeling awful. Anyway, they got everything figured out and the surgery resident came in to let us know that he was there and that he was going to be taking care of Max. When he walked out I immediately thought, "Oh great. Another resident." Anyway, surgery came back in and said that the nephrology attending said to pull it. I should also note that the surgery resident ended up being fantastic. He was very sweet to Max and kept him entertained for the 15 minutes that he had to hold pressure on the site. Max was loving it.

Within minutes our security blanket was pulled and thrown in the garbage. It was a very bittersweet moment to see that thing thrown away. I love it because it's one less thing that could cause infection. I hate it because it was our security blanket. If Max had a bad PD (peritoneal dialysis) night we could always fall back on hemo. I hate it because for the past 16 months I have gone to that hospital 7 days a week, to 4 days a week, to three, and then two. Now... I don't at all except for his monthly visits. Granted, I am sure they will want to see him once a week for a little while just to be sure he is tolerating only being on PD rather than both, but still. What am I suppose to do with all of my time? I wasn't expecting this, so we didn't get to celebrate our last hemo treatment. We didn't get to say "goodbye" to our nurses. I have been wanting that thing out for so long, but now that it's out I am kind of sad. I am scared of this new chapter.

Please pray that Max doesn't get any kind of infection from the catheter being exposed and pulled out. Right now, that is my biggest concern. Needless to say, I have already taken his temperature twice and we've only been home for an hour and a half.

***Sorry I just reread that and it is all over the place***

On a positive note... Max is down to only having 2 tubes rather than 3. So yah for that!

Hoping for a quiet Sunday. Enjoy the beautiful weekend everyone!

I feel the need to post this

Below is a link to a Dateline segment on Open Fetal Surgery. Unfortunately, I have not seen the pictures and/or video that were taken during Max's fetal surgery so this helped put it all into perspective on how they did it. This clip really hit home for me.

Warning: I needed a tissue.

What a miracle.

(I can't figure out how to make it a clickable link so you will have to copy and paste it, sorry.)


September 9, 2009

Sleep Study was Awful

We got to the hospital around 5:00 last night, ate some dinner, got signed in and were admitted to the Sleep Study lab on A3 South. Max started crying as soon as we walked into his room because he knows that something isn't right. He calmed down after a few minutes though. We then had to go through the typical routine of having a million of the same questions that we have answered time and time again, got check out by the nurse practitioner and waited. Around 8:00 the guy performing the sleep study came in to start getting things ready and attached to Max. Max cried from the time the first probe was placed until about a half hour after the last probe was placed. He finally calmed down around 9pm, but never slept for longer than a half hour until around 11:00. Starting around midnight, the guy came in about every 30-45 minutes to readjust the nasal cannula that was put on crooked and kept coming out of Max's nose. Of course this meant that Max was woken up. He cried from the moment that guy walked in and for about 5 minutes after he left. This took place until about 3-3:30am. At this point I got up and readjusted how Max was positioned and placed the nasal cannula back in his nose. Max finally fell into a deep sleep around 3:45-4:00. The guy came back in at 6:15am to unhook everything. I have absolutely no idea if they got enough information since they get most of it when he is in the deepest sleep (REM sleep). All I can say is that I am never doing that again. It's all Tim the next time around.

We got out of the sleep lab around 7:15 or so, went down and got some breakfast and then went to sign in for Max's ultrasound. They told us that they couldn't get him in early, so we sat and waited for 2 hours before we were called back. Max wouldn't sit still enough for the tech to get any pictures so I ended up having to lay on the bed with Max laying on my chest. He eventually fell asleep and she was able to get some good shots. She said that things are looking stable compared to his previous ultrasound from April.

Needless to say, both Max and I were exhausted by the time we left the hospital at 10am. We got home at 10:30 and we were both asleep by 11am. We woke up when Tim got home around 4:15pm.

What a way to celebrate our third wedding anniversary!

September 8, 2009

Sleep Study Tonight

Please say a little prayer that everything goes well and that Max is able to sleep with all of the wires attached to him.

I don't think I'll have the results until September 21st when I meet with the pulmonology doctors. I will keep you all posted when I get more information.

Thank you everyone!

September 2, 2009

CT Results

Max did great for his CT yesterday. I got to sooth him while they put him to sleep with the gas mask. That was absolutely heartbreaking. Thankfully they didn't have to put in an IV or intubate him. Tim ended up working the night before and got off in time to be there with us. Max's radiology nurse told us that he would probably be very cranky and sleepy for 24 hours. So we got home around 2:00pm hoping for a good nap so that Tim could get a nap in as well. OH NO. Not Max. The little booger was up and playing until 6:00pm. He never does anything the way that they're suppose to happen. Oh well... I am just glad that he tolerated it very well and never had any side effects from it.

On with the results.... after making us wait until 4:00 this afternoon his pulmonologist called with the results. He said that nothing unexpected was found. There are from marks the pneumonia he had. They can also see signs that he was intubated quite a few times. We were all expecting this. With that said, the reason we did this test was to see if there was any damage from aspiration and there is not. So we don't have to worry about Max and his eating. He also said that Max's right lung is a good deal bigger than the left. He said that this is because his left lung is more underdeveloped so the right lung has grown to compensate for that. Now onto the biggest and greatest news, they are anticipating that Max will outgrow is lung problem!!! This is HUGE!!!! Of course, he said they can't see into the future (duh!) but they are expecting that as he grows his lungs will grow with him. So for now, Tim and I are checking the lung condition off our list of things to worry about. Not that he still doesn't need your prayers in the lung department, but now we put all of our focus on the kidney condition.

You all have a great rest of the week! We have another sleep study next Tuesday night and a kidney/bladder ultrasound on Wednesday morning (shoot me). I'll keep you posted on how all of that goes next week. Enjoy your weekend.