Wednesday, May 18, 2005

Part 3 to Joshua's story

You will see as my story goes on, and by different pictures just how much he has changed in the last 6 years. He has had 3 Cranial Reconstructions done so far, and we will have to go for number 4 next year.



I am not going to put every little detail of the years of Joshua's life just a little of lots of things. So we talked to his Craniofacial Surgeon and chose him as I said last entry. Josh was in the hospital for two months the first time he came home for the first time ever on Dec. 19, 1998 and was only home for 24 hours and got readmitted with pneumonia and was again there for another month. The first year of his life was spent like this. He was never home longer then a week. When he was about 3 days old, we had a social worker from Childrens request to meet with us. She wanted to know how his father and I were doing and handling everything. I will never ever forget what she said to us " That our son was either going to make or break us, there would be no middle ground."  I did not take this as an insult but really did not like hearing that. But trust me over the last 6 years I learned quickly what she meant by that. The feelings of sadness, anger, resent, confusion, hopelessness, pain, anticipation, happiness, and more all can really get to you and make it very hard to stay on the same page with your loved one! We swore to each other that we would never get so lost we could not find our way back to one another and its been tough but we are still going! Joshua is extremely lucky to have Bill as his father you should see the two of them together! Man does he love his daddy! Almost from the beginning it seemed everytime we turned around there was something else wrong with our son. It seemed everytime they tested something it was bad news. After about a month of that I broke down one night worse then I had ever I seem to recall and was almost afraid to see his doctors everyday because I was so afraid it was going to be more bad news. We were told "IF" he did make it that he would never do anything, like walk, talk, see, hear, I could not believe that and did not want to believe that. In the first fewmonths I will name some of the things that were told to us by doctors by different tests done. We were told that he was almost all the way deaf, that he could only hear a whisper in one ear, and nothing in the other. We were told he was partially blind. We were told he had a hole in his heart, we were told that he was aspirating his own bodily fluids and was getting pneumonia as a cause of it (sometimes so bad hislungs would be completely whited out, and they would have to intubate him for different periods of times), as a resultof this we were told he would not be able to eat by mouth and put a G-tube in his stomach to feed him, they also sat us down one day and told us they wanted to do a Trach on him, neither I nor his father were okay with that. Call it parents instinct but we did not believe it needed to be done. And this was the first time we challenged what a doctor said needed to be done. They were not real happy with us. We did research and found out all we could about it and still agreed we would not let them do that. So we ended up doing a Nissen Fundoplication, which is when they wrap the top portion of your stomache around your esophagus.Click here for a much better explanation and images

After they did this surgery he seemed to do much better as far as the reflux went, but there were still some hard times. As a result of the Nissen he will never be able to vomit (if his body absolutely needed to he could as far as I have understood) he wretches instead. Jumping way ahead in time now 6 years later I am SO glad I did not let them do the Tracheostomy because he would have had it for the rest of his life and there would have been nothing we could have done about it, and we were right he did not need it! One of the times that Josh was home for almost a week he got really sick again. When he was at home he was on a routine that was repeated about every hour and a half period 24 hours a day, with the neb treatments, the apnea monitor, the G-tube feedings, the meds (man there were so many). Well his father took him to the emergency room around 10 PM and I'm not sure what happened exactly but my guess would be the doctor in the ER that night was new and not familar with our son. His father told them if they did not admit him we would be back in the morning and he would be way worse then he was now. Well the ER doc at Childrens seemed to believe he should go home and not be admitted. So they came home, neither one of us slept, his apnea monitor was dropping low all night so in the morning, I dropped Bill off at work and had made a call to Joshua's regular doctor and was told to bring him in at 9, I dropped Bill off, then dropped my daughter off at grandmas and headed downtown toChildrens, I got into the clinic and his peds doctor was just getting in and looked at Josh, and went right back to the nurse and told her to get him right away back and to check his oxygen level and pulse (which I found out later). Well we sat there for what seemed like forever it was about 25 minutes and I kept rubbing Joshua's face and talking to him. He was all bundled up in his infant seat. I could see tho that his breathing was getting shallow looking. Well this nurse FINALLY calls us back and we took him out of his car seat and she panicked she put him on the monitor to check his oxygen level and it was so low his body was in the process of shutting down, she ran out of our room and banged on his dr's door to come quick, and that moment I knew this situation was really bad! Well in the midst of the nurses panic she stopped and asked me "Do you want to revive your son? I was pissed! I looked at her and said "Do we REALLY have the time to be talking about this?" I have not spent months doing everything I can in order for my son to survive and be okay for it to be taken away from me in an instant when we REALLY DO NOT have even 1 extra minute right now to be talking!" Well once they had him in the ER again and intubated and I called his father and grandma, grandma decided to call the heads of Childrens to talk to them about what had happened that day. They sent a few different people randomly thru out the day to talk to us and apparently my sons doctor asked this nurse "If Josh had been a normal looking child would you have taken the time out to ask if he should be revived?" and her answer was "no"! She tried to come and talk to his father and I later on in the afternoon and apologized repeatedly but my son was laying in critical condition in the Intensive Care I really did not care what she had to say. The whole situation was scary and horrible! I wondered for weeks, "Was is my fault?" "Could I have done something different?" After talking to all my family I accepted that I did everything I should have and handled the whole thing just right.I don't know all of this was so new to me, I had never in my life been trained to know how you would or would not or the do's and the don't at a time like that. Needless to say it was thatday that we decided yes Childrens Hospital is a wonderful hospital for certain children but our son was not one of them. They were not experienced enough to handle him, and it seemed at times when they really should have said "we do not know, we will send you to someone that is better qualified" they never did. Instead they took text book guesses and mislead us in so many ways. Once my son was strong enough to travel we headed to Washington DC for his first Cranial Reconstruction. My mother, and Bills mother and sister, and Josh's godfather and his girlfriend and another family friend all flew out there to support Joshua and us. This was the scariest thing I have ever experienced, I have never felt so helpless in my life! The night before my sons surgery we all went out to eat, and them came back to our extended stay hotel we were staying at and we got a call at 9:30 at night from Josh's cranio surgeon. He was calling us from his home. He started by saying "I have never made a call like this in all my years of being a doctor, but I had to call you two and tell you that I have the experience as a surgeon to do exactly what needs to be done. But the rest is in gods hands." He was worried if Josh was strong enough to make it thru such a severe surgery. We respected him for the honesty, but let me tell you hearing that the night 6 hours before we were due to be at Georgetown made it even harder!  I will end this entry now and pick it up again later on tonight it is ohhhh so long ;)

1 comment:

carolsixpac said...

ok, looking for part 4