I have had alot of new friends that have found our blog in various different ways, so I thought I would do a quick recap of what Rhett has been through.
Rhett was born on October 7, 2005. He was born at 34 1/2 weeks gestation, and was only 4 lbs. After he was born he quickly deteriorated and was sent up to the NICU. Over the next few days we found out that not only did he have a major heart defect he was also born with Trisomy 21. Many of you may know this as Down syndrome.
Rhett spent 4 weeks in the NICU growing and learning to eat so he could come home. We were told that Rhett would need to put on a few lbs before they could do open heart surgery. Like, 10 lbs.
However as Rhett would grow his heart would work harder and harder. He was in congestive heart failure, so by the time he was 4 months old, and only 7 lbs his cardiologist decided that he could no longer wait.
On February 16, 2006 Rhett went in for Open Heart Surgery to repair an AV Canal Defect, a PDA, and upon opening him up they also found that he had severe Pulmonary Stenosis.
We were very unprepared for this surgery, and expected him to come out of the OR and be quickly extubated. We had a very rude awakening when he struggled to come off of the Heart Lung Bypass, and nearly bought his way into the PICU on ECMO. Eventually by leaving his chest open, they were able to get him off of bypass and into the PICU.
He spent 4 days on the ventilator and about 4 weeks in the hospital as he recovered from this surgery. His chest was closed 2 days after his inital surgery.
Rhett stayed on oxygen 24/7 until May of 2005 when we took him off of it during the day. I don't think he has ever been off of it at night. We have had periods where he fought him to keep it on, but now he is cool with it. Which is good because oxygen is the very best thing for Pulmonary Hypertension....which leads me to our next surgery.
Rhett did really well and was hardly sick at all until January of 2007. At this time I noticed that he wasn't acting himself. He spiked a fever and his heartrate shot up to nearly 220 bpm. We rushed him up to the ER at Primary Children's Medical Center. At first they thought he had pnemounia so they did a chest xray. The xray showed that his chest was clear so they were baffled. They decided that since he had a fever and a inner ear infection that the high heart rate was caused by the fever.
They were getting ready to send us home when the attending Dr. came in with a shocked look on his face and a copy of the side view of Rhett's xray. The dr was baffled because it showed that Rhett's intestines were moving up into his chest via a hole in his adomenen.
The thing is, is that this is generally a defect that is present at birth and makes babies very, very ill. However Rhett likes to write his own rules. Fortuantly we were blessed that although the hole was there at birth, (this was confirmed by taking a looksee at all of his previous x-rays) the intestines did not move up into the chest cavity and acutally get stuck until he was 16 months old. Had they been in his chest when he was born, it would have taken him due to his major heart defect. There is no way that with both conditions he would have been able to make it.
This all happened on a Sunday and by Monday we were admitted to the hospital to have surgery on Tuesday. Rhett did very well through the surgery, however there was an accident afterwards that set him back quite a bit. We also found out at this time that Rhett was struggling with Pulmonary Hypertension. This was one of the scariest diagnosis's to date since there is no cure for this disease.
The rest of 2007 was a bit rough. Rhett had quite a few illneses, and was hospitalized for Rotovirus in November of that year. In January of 2008 we found that Rhett had severe sleep apnea and that he would need surgery on his airway to help open up the back of his mouth and throat around the soft palate area.
In March of 2008 we set the date to have this surgery done. The procedure is called a Uvulopalatopharyngoplasty, or a UPPP for short. What the did was take out his tonsils, shave his soft palate, and remove part of his uvula. They also reconstructed his throat muscles and brought them upwards so that they were stronger and not falling back when he slept.
This was another really rough surgery for him. For a while he lost his ability to swallow and kept getting really dehydrated. They put an NG tube in him and taht started our path of tube feedings.
In May of 2008 he contracted RSV which landed him in the hospital for another week with some very scary desaturation issues.
Rhett had his NG tube throughout all of this but they were concerned that he was aspirating, so we stopped trying to feed him orally to get rid of the NG tube. At this point his doctors decided that he not only was aspirating but he had some severe reflux going on as well. In June they scheduled Rhett to have a Nissen and G-tube put in. They also found that the patch from his hernia repair was nearly completley popped so they stitched it down again.
Again he had a rough time at first as he always does with any surgery. It took him a little longer than normal to tolerate feeds and he had some issues with gagging and retching, so bad infact that his little eyes turned black around the outside edges of them from all of the pressure of trying to vomit and not being able to.
Around the time that Rhett was undergoing his airway surgery it was discovered that he also had a tethered spinal cord. So in August of 2008 he went in yet again for another surgery. This time on his spinal cord to release it. This will need careful monitoring as at any given time it could retether and he could need surgery again.
Between all of these major things there has been many many hospital stays. Rhett still has had issues with aspirating. Our family joke is that he aspirates on air. We thought that with the Nissen it would end our aspiration issues, but they have continued to rear their ugly heads over and over again.
A few months back we got a suction machine and since we have been able to suction his secretions 3-6 times a day, he seems to be doing better. We also have started putting him to bed with the mattress elevated and it seems to help alot. I mean, we haven't been in the hospital since November with a pnemounia, and it's nearly the end of January. That's like a miracle in itself.
Between the surgeries and hospitalizations we have also been in for a slew of tests and minor procedures, such as MRI's, Bronchoscopy's, Tubes in the ears, Echo's, Ekg's, Swallow Sudies, all of that type of fun stuff that has kept us so busy.
During one MRI we found that Rhett has a colliod cyst on his brain that has gotten larger over time. It is in the third ventrical, and for now they are watching this to make sure that if it does get bigger they can go in and remove it before it becomes too large.
We have been prepared for this, as well as a possible vavle replacement in his heart. We also know that with the Pulmonary Hypertension he could become very ill. Therefore we take each day that is good and run with it. We love watching Rhett grow and thrive each day that he is here. He embraces each day with a beautiful smile and an amazing sense of peace and love.
Although we have had many trials we also have had so many blessings. The good always outweighs the bad.
5 days ago