Wednesday, December 3, 2008

part 3

For part 1 click here
We saw his pediatrician several times, he wanted to go back in to see a set of specialist that came up here in the past (they were from Children's Hospital in L.A.). We set up a couple of appointments, when they finally decided to see him down at there regular office where they would do a round of tests on him (one was a scope down his throat, and another was a biopsy of his intestine/colon).

The appointment went as planned he had the tests done as a outpatient (so we did not have to stay over in the hospital), he had anesthesia and woke up from it in a VERY bad mood. The first set of specialist instantly ruled out some things with us while we were in the meeting room, then the other specialist came in to tell me that his colon was so impacted that she was really not to happy with it, and that the next best thing was to go and do a colostomy bag, so that the colon could be drained properly. Also I had to start doing another tube routine(irrigation's) several times a day. She said we could set up the time for surgery and then we would find out the results then too.

Not to happy, but sort of relieved that possibly this would be the right road for him to function normal.

After a couple of weeks we got word back that the results were not good, it showed that he had no cells in part of his colon, this meant it was dead in this area. They said it was a disease that he was born with, I don't think that it was a result of the disease, I believe it was from the birth defect on his intestine being blocked (WAY to long of a story to explain;)
Well then that was the plan, we set down to have this surgery! AGAIN my mom, Paul, little Paul and I went to be with Phillip as he was operated on once again. This time was a LOT harder then the other times, he was older MORE aware of what was going on:( TO much to explain, without going into TO much here, he was not to eat anything for WAY to long, it was hard on him. He was given a sedative to take him in the operating room, so he was like a drunk kid! That made it a little easier to let him go when he was ready to go in, it was hard to "give" him up to them.... I had to ONCE again put my trust in the hands of MANY Doctors. The surgery took several hours, we paced and waited and finally we were paged and it was time to go in. Phillip was sleeping , but I can tell that he had been crying, his eyes were so puffy and red. I remember hearing him SCREAMING from where I was waiting at the door for what seemed like FOREVER (see the parents can not go in when they are wheeled into recovery, you can see them pass by, then they go in and you have to wait until they get them "settled"). So when we got to him, he was settled on pain meds and sound a sleep. Paul and I sat in recovery for a few hours, while my mom and Paul did there thing:) This always gave us time to talk and reflect on all that was happening. Finally after a while Phillips saturation's were normal and he was waking up so we were moved to a regular room. NOW I had to sit in a wheel chair holding him (which was fine, because by this time he had FULLY woke up and wanted to be held and was upset), WE were wheeled down to our room, but when we got to our room, WHAT a surprise, we were sharing it with THREE other patients (we have never shared before). Not only was it hard to be there, BUT we were there with all of these people, it was crazy. The area where we were at was a lot of rooms and in the center was a huge family area with lots of stuff for kids. So it was nice for little Paul to go and play video games and meet other kids too. Phillip really recovered FAST, he was up and ready to eat in a couple of days, BUT he could not eat until he passed some stuff through the stoma AND it had to measure up:) FINALLY after a day or so more he did "go" and we of course we were thrilled!! We had fun once he was feeling better, we would take him on wagon rides through the hospital, and out by the garden area, AND even to McDonald's (IN the hospital). The hardest part was SLEEPING there, I mean ALL night something was going on in our room AND on the roof (helicopter landing area, RIGHT above us), AND in the hospital! It was crazy, the poor little boy next to us had been hit by a car, and he was real bad because he would cry ALL night long. Then a boy across from us had been hit by a car too, so they had to run test on him, it seemed like all night. We had several different roommates throughout our stay, we stayed the longest, so we met some people and shared horror stories:) But the worst one was this little boy who literally had to be strapped to the bed and caged in his bed with this weird cage thing that they set up so EARLY in the morning (and it was loud). That poor boy, I still think of these kids on a occasion. At this time is when I came to a realization that Little Paul was experiencing some really different stuff at this time in his life, all these children SO sick or hurt, I told him that he was most likely going to grow up and become a Doctor (he agreed).

(being silly before surgery, blowing kisses)

(after colostomy surgery)

(hugs for brother)

(his cracker,wanting to share even though he had not had ANY "food" in days!!)

Right before we left the hospital the nurses schooled me on how to take care of this NEW thing, it was really a challenge for sure. After being showed what to do, they had me do it right there with all of them watching me, WOW and I did it PERFECT YES YEA!! We got to go home:)

At home it was really a disaster, REALLY a disaster... While Phillip was doing excellent (you would have never known he had just had surgery), his sore area was NOT doing good at all, it was VERY scary! I had came to realize that the incisions around the stoma had OPENED, YIKES what a huge pie like cut out.. OH GOD was I freaked out, I was so scared (BUT he was NOT in pain or even acting like anything was wrong). I called down to the hospital, they helped me over the phone and REFUSED to let me go to ANY hospital here. They explained that this type of thing is NOT abnormal, and it could be fixed and it was not to serious (THANK GOD).. They did not want me to go in around here, because they were sure the medical people would not take care of him properly. So my mom and I stood up ALL night long (on a Saturday night) and took the steps that the surgeons explained to me OVER the phone. It was one CRAZY night of screaming at each other (and Phillip screaming too), but WE DID IT.. WE got it taped up with butterfly bandages and cleaned it and got a bag to stick over it (this might be hard to understand, its to much to explain though). THANK MY GOD! We were in church that Sunday and he did great, "it" did great. We were happy that we did not take him to the ER (they would have most likely RE-done the stitching and possibly the stoma area=ANOTHER surgery).
After ONLY a few days, this thing healed up WONDERFULLY (we did have to repeat EACH step after every bag change though, WE WERE PROS by this time). Phillip was doing so great with his little bag:) He was a poopin' king! We had several DISGUSTING but funny stories with this little bag though. One day while in bed (WARNING) he was REALLY REALLY TOO quiet, well guess what, he ripped it off and GUESS what (well you know) it was EVERY WHERE!! After this incident, little Paul was no longer allowed in the crib to play with Phillip (at the morning time when he woke up that was there routine) until I checked EVERYTHING was properly attached!
Although the colostomy was working great and he was functioning great, there was one problem, his lower part of his colon that they stapled off (to be removed at a later time) was fully impacted with poop. They had wanted me to do the irrigation's to make it come out, but to no success, we had to go in for yet another out patient procedure.. SERIOUSLY what a MESS it was! They put him under again, and when he woke up, WOW look out (he was pissed off)! Not only was he mad, he was a filthy little boy, it was like they took him in and let "IT" all out of him, and DID NOT clean my boy up (well by MY standards). SO here I am IN the recovery, pushing ALL nurses around to clean him and make him smell pretty for our four hour drive home, all along he was SCREAMING! They must have thought I was nuts (but you all know my OCD)!

After all was done, he was left alone for about two months, wow, what a time! Phillip started to grow up more and more, changing and becoming a toddler so fast. He actually was standing by this time, holding on to things to pull himself up (his therapist were so proud of this, as I was too). He was signing words, "please, more, me, give it to me". This was all a GREAT thing for him, everyone was so impressed by him.. I was so proud and happy! I was also so happy that he was "going" on his own, even if it was in a bag, he was better...
Now we had to plan for the second and final step to the process to fix him for good, this was the "Pull-through" surgery, where they pull down the normal/healthy part of the colon and they now cut away the damaged bottom part and reconnect the healthy with his rectum area. This was a huge part of the surgery and the hardest part.
We were schooled on what it was going to be like and what we needed to do, and what we needed to have (such as creams for rash when he starts GOING a lot).

The surgery was on November 1st 2006, (10 days before his 2ND birthday). They planned for us to be down there for only about 4-6 days, we were glad to know that he could celebrate his birthday then!

(Here he is getting all cleaned up from the nasty prep)

(prepping for surgery, with the yucky stuff in his nose, he had to sit for over 3 hours)

(not happy trying to recover from pull-through surgery)

AGAIN my mom, Paul, Little Paul and I headed down to Children's Hospital, where we started a really awful preparation for the surgery: First he could have NOTHING to eat starting from when we got there at about 4pm in the evening, they gave him an IV (NIGHTMARE), then they put this tube down his nose/throat that would feed him a NASTY medicine that was to clean him out completely RESULTS= POOP EVERYWHERE, we had TRASH bag attached to his colostomy bag, it was so crazy! I AGAIN took over and showered him (when the mess part was over, about three hours later). He had to have ALL night clean outs (irrigation's) in the stoma to be sure there was nothing left in the area. The doctors came in bright and early that next morning to prep him for surgery, do the exam and run blood and such. They noticed that his lower part of the colon (the one that was damaged/dead and stapled off from the last surgery) was hard as if there was a "stool ball" (that's what they call it), I told them that he had just gone in a while back to have the clean out done as an in patient procedure, they still said it felt hard, so this led to the Surgeon coming to check him (who agreed with them, but said it would be okay for them to proceed). So off to the LONG surgery (it ended up being like 5 hours instead of the short 2-3 hours that they told us it would be), Phillips lower damaged colon was still SO impacted (the HARD "stool ball" that they felt) even after they did the clean out procedure, so they had to cut open a rather large area to remove it:( SO FRUSTRATING! I felt so sad for him, he came out so so so upset and in pain, not sleeping at all! They tried to get him settled BEFORE I came in, but I did NOT wait, I pushed through the "private" doors (like one of those movie scenes:) FIRST of all I AGAIN saw him as they wheeled him into recovery, AND he was so upset when he went in, I could not wait... They did NOT settle him, I did! I just laid myself next to him and held him in the bed, and he finally went to sleep. After a few hours we went into our room, and AGAIN we had to share, but ONLY with one other patient (and it was not to bad, he was gone a lot). This recovery WAS NOT the same as before, he was so sick and in pain. They explained that since his rather large incision, it would be a long recovery, AND he had a cough..SO he would cough and SCREAM and cough and scream (we had to do a suction thing on him after a few hours of this, he just finally would not cough anymore from being so exhausted and in pain). After only a few days, he POOPED all by himself:) BUT he still was not himself, he refused to eat/drink or even be held:( He was really weak, pale AND sick. They told me that he would start to feel better once his incision was healed up, that he was just in pain that was why he was not himself. We took him off morphine and started him on Tylenol, which seemed okay, but he was just so crabby and sad. They decided to send him home since he already was doing what he needed... Off we went home to a NIGHTMARE! He was just so sick and in pain! For a couple of days I tried to keep him happy, but it was not working, he was not eating OR "going".. We took him in and found out that he needed an antibiotic for an infection, they also told me that he was really anemic and that he would possibly need a blood transfusion? They sent me home trusting I would keep in contact with them, and do all I could at home. I did, I pumped him with iron (naturally), and I tried everything I could to get him back to his HAPPY ole' self! It was a success, after a LONG few weeks of him COMPLETELY NOT himself, just really really scary stuff, he was BACK, not completely but WAY better then before!! He was wanting us to hold him again, wanting to play with Paul, and WANTING to eat AND he was "going"!! YEAH!!! We were thrilled as can be, so was the Surgeons and Doctors! He got to celebrate Christmas with us, not feeling PERFECTLY better, but he was on the road to being healthy again. We were so happy to have him feeling good enough to enjoy his toys:) (since at his he was NOT in to it at all). Over the next few weeks we were all so happy to see him doing his regular rolling around and getting up to sit and play, signing for what he wanted and playing and laughing again.. BUT sadly this did not last to long, only about approximately four weeks or so.. then on January 5Th 2007 we headed up to Standford Medical for clinic check up that we were invited to (it had just opened up for children with Down Syndrome), he did well almost all the way up, but he puked at the restaurant right before we got to the clinic (I just thought he was car sick?). The appointment went great, they were SO impressed by him, and at how much he was SO advanced for a child with DS his age. They did question his weight and wanted blood work done (thinking he looked a little unhealthy), I explained that he had just had surgery months ago and he had some infection that was hard on his little body. They understood and told us to just keep up what we were doing and that they were so thrilled and happy with him, he really won them with his personality (shaking there hand, and being all cute).
On our way home he was not doing good, he was really acting sick (puking). He did eat a little, but was still crabby and sick. When we got home he wanted to go to bed, and seemed like he just had the flu (since puking was not a sign with the other infection), so I put him down in his bed and he just slept for a little bit but then just kept on waking to get sick. I eventually brought him in our other room and laid on the floor with him all night. He woke up off and on through the night (which is normal for a flu), and by the EARLY morning he had stopped getting sick and actually started wanting drinks and some toys.. Paul and Little Paul came in and "took over" so I could go sleep. L.Paul and Phillip played a little on the floor, but big Paul said Phillip seemed to weak to want to play a whole lot... With out going into to much detail, after only a couple of hours he just went to "sleep" on the floor...... This was January 6Th at approximately 10am is when God took him from me, I will never understand WHY, and I will always WONDER WHY:( I have been MAD, SAD, SICK, Pissed OFF, FRUSTRATED, GUILTY, feeling like I can NOT go on, disgusted, ALMOST losing my mind, and ALL the above (that you could imagine)... NOTHING can prepare you for this EVER, NO previous deaths in my family have EVER compared to losing my son, I cant even began to explain how I feel, ONLY if you have lost your child would YOU EVER began to understand! I would love to hold him again, touch him again, I MISS HIM SO MUCH!! Everyday I remember little things about him, and I have to be strong and go on with my day... The hardest at times is when Little Paul tells me how he cant wait until he is an angel, "I miss him mom, I want him here with me and Preston, we are ALL brothers".....................

Thank you for all that have been praying for me, I do have the strength of GOD, that is WHY I have the strength! THANK YOU GOD for your arms for me AND for Phillip................


Lady Dorothy said...

Through my tears, I just want to say once again how much I love you and admire your mothering.

You are right, I don't know. But, God does and He's the One that counts. And He is strong enough to handle your feelings. I'm so glad you trust Him with them.

Martiel said...

you have been through so much, and are so strong. You are my encouragement and will to be the best possible mommy to be. I look forard to my baby being born soon. I pray for you and your family. It is a hard time right now with the holidays and him not being around. I love you guys and hope you are doing well. Hang in there day to day. I am so glad you shared your story on your blog, it must have been hard to relive it all as you typed it all out. God is love. He is there everytime through thick and thin. Amen.

Anonymous said...

Love you my Dear. Came on today to see if you had posted. Please know that YOU ARE IN MY PRAYERS!! I hadn't read part 3 until today.
YOU ARE SUCH A GOOD MOMMA. And though none of us understands WHY, I certainly know that God gave Phillip to YOU for a reason!