SOME TRYING TIMES IN OUR LIVES
These are things that we have had to deal with ,that I wanted to share with you. These are just our experiences and our opinions. We are not doctors and what we say or do doesn't mean it is the best for every child. Thank you for taking the time to read through them. Maybe this will help you realize that you are not alone in your journey, that others have had to deal with similiar things. Thank You!
Surgeries
Surgeries are a big part of our lives. Joshua has had to have 3 major surgeries and at this point he is only 2.5 yrs old.
--- 1st surgery was a feeding tube placement,
--- 2nd surgery was a tracheotomy,
--- 3rd surgery was a hip and hamstring lengthening.
1. Feeding Tube Placement-- Joshua did so well during the 1st yr of his life. He was able to drink from a bottle and keep up with his weight. Until his 1st Birthday, that was spent in the hospital with a bad cough that would not go away. The cough had gone on for a few hours until we got him to a medical facility. There they did chest x-rays, later to find out that Joshua had his 1st BIG bout of pnemonia. He spent 3 days at a local facility until things got under control. During that time Joshua's Pediatrician had told us our options. They were to either let it go, keep feeding him and have him aspirate his food again and get pnemonia like this again or have a feeding tube placed. After great thaught we decided to have the tube placed. Our thaughts were brought back to the day our Neuroligist told us about Joshua's problem....He said that most children with Joshua's disorder die of pnemonia. Thinking that, I was not going to push it. I wanted to do ANYTHING to help my baby live longer. We were then transported down to a specialty hospital that deals more with children and tube placements in children. While there they did a Ph Probe to check for reflux, then eventually sent Joshua home a week later with a Nasal Gastrial Tube. This is a temporary tube that is placed through his nose, down his throat and into his stomach. Then a few weeks after that it was time to have the permanent tube placed in his stomach. This is surgicaly placed by putting Joshua under sedation, running a tube down his throat and out an incision made in his belly. This was one of the most heartbreaking desisions we have had to make, BUT Joshua has been able to maintain his weight and signs of pnemonia have lessened a GREAT deal. Pnemonia is always a factor due to saliva being aspirated or if Joshua gets a cold and it settles in his lungs. We have been quite fortunate lately Joshua has not shown any BIG bouts of pnemonia since the tube placement. I credit that all to the tube and a very glad we had it done!
***NOTE***
If you deside to get the tube placement done, keep this in mind.......Have the permanent tube in the belly placed as soon after the Nasal Gastrial(NG) Tube as possible. The NG tube is a very uncomfortable thing to have! The docs never told me that and asked me if I wanted the permenant tube placed in a few days or wait until after the Christmas and New Year holiday. Well thinking to myself, I could wait until I have my precious little boy going under the knife, than that is what I was going to do. Joshua had the NG Tube in for about 3-4 weeks and it was pure misery for him. SO my advice to anyone is to NOT wait very long after the NG tube until the accual Gastrial Tube (permenant) placement is done. Even going through that I am still very glad we had the feeding tube placed!
2.Tracheotomy--We have always been told that Joshua had a strider when he breathed. Strider was explained to us as "loud" breathing. From the day Joshua was born he had a different breathing noise but it wasn't TOO bad. At age 1yr 10mo. Joshua was experiencing some VERY deep, VERY loud breathing, as though he was out of breath. We then got worried and went to the doctors. They then wanted him checked out by a Pulminary doctor, who then suggested we talk to a ENT (Ear Nose and Troat)Doctor. The doctors all discussed Joshua's situation and then discussed having Joshua get a Tracheotomy done. WOW imagine the fright and sadness we we feeling. Let me back track a bit.... While in the hospital for about 3 days they did all kinds of test to see what was causing his breathing loud and hard like he was. They thaught maybe reflux...NO. They thaught it could be aspiration...NO. They did all kinds of blood test...All Negative. They did Oxygen saturation tests and he was able to keep his Oxygen sats in the normal range. The docs came to the conclusion that Joshua was just working to hard to breath and gave us two choices...1 we could let him go and eventually his working too hard to breath would put a strain on his other organs along with his lungs, mainly his heart OR 2 we could do the tracheotomy. Once again we were very scared but weighed the odds and to make Joshua's quality of life better we got the Tracheotomy done. I failed to mention the surgery was done at a specialty hospital on or around the same time I was at our local hospital giving birth to our 3rd son. Imagine the stress factor there. As far as getting it done. It took me a LONG time to get used to it ,probably 4mo, but he is so much calmer, more relaxed, no "loud" breathing. I am glad we got it done. There is alot to maintain a Trach but it is well worth it.
We clean the trach area everyday with 50/50 water and prioxide. We have to change his trach 1x a week. We have to suck out any mucus that he is unable to cough out on his own. We change the ties as needed. (In our oppinion getting the trach was well worth it)
3.Hip and Hamstring Lenthening--Joshua has what is called Cerebal Palsy this is when the muscle tone is low "tight" We have to give him daily therapy and exercises to keep his muscles as loose as possible. But Joshua's hips and knees were getting too tight. Joshua was unable to straighten his legs out flat and his hips were very tight that changing his diaper became a pretty big task. Once again though it was a progressive tightening of his muscles, so it was almost unnoticeable because it kind of grew with us that we really didn't notice. I just do what ever it takes to care for Joshua and don't ask any questions. Our doctors and therapist mentioned it to us that it seemed as though Joshua was getting tighter. They refered us to a Patholigist and they did an x-ray and noticed that Joshua's hips were comeing out of his joints. Well in turn we were told that he needed surgery to relieve the tention on his abductors(inner thigh by the groin area). At the same time if we wanted to do it we could relieve the tention on his hamstrings. The doctor stress that it has been a very common surgery and that there was"nothing to it!". BUT if we opted to not do it Joshua would start to experience so major pain. Well being told that we felt that we had no other choice. We did not want Joshua to go through any unneccesary pain. So we had that done when Joshua was 2yr 4mo old. The hamstrings were not a neccesary thing to get done but we figured while he was there, we might as well do it. Joshua had to wear some splint/casts for only 10 days and was on a heafty pain reliever because it cause him a great deal of pain. He is now a happy little boy that is able to so a bit more in the sitting position. He has more range of motion in his hips and legs. Diaper changes have been much simplier. As with the other surgeries, we were reluctant to do but weighed the options and seeing the end results are glad that we did it.
