Rockstar

Hudson is now 14 weeks old and well over 12 pounds! Hudson had another bronchoscopy last week to reevaluate his airway and the ENT surgeon and cardiothoracic surgeon decided that overall they were pleased with his airway and they wanted to try and treat the remaining granuloma/scar tissue with nebulized steroids and IV steroids and reevaluate in 1-2 weeks. Since the bronchoscopy Hudson has proved once again that he can overcome anything! He weaned completly off all IV meds and escaped ICU this past Monday!!

This week Hudson has made more progress than anyone could have anticipated!! He is off his methadone and diuretics and in the process of weaning valium with no problems...chest xray looks remarkable and he is also tolerating his feeds in his stomach extremely well and is taking a little more from the bottle each and every day!!! As of yesterday..he is completely breathing on his own..NO more oxygen is attached to his littel face!!! Amazing!!! He is holding steady and breathing with ease. Mommy, Daddy and all the family are so very proud of our Hudson...then the surgeons got word of how well he has done this week and they did not believe the news.....the exact words were, "that little boy is a Rockstar!"

The current plan is for Hudson to have his 10th bronchoscopy next Wednesday to look in the airway a final time prior to discharge and address any areas of concern at that time. In the meantime, Hudson is working hard at trying to feed from the bottle, receiving his immunizations and sleeping and pooping! AND....if all goes as planned we should be set free from Children's Medical Center of Dallas late next week...

Tough Cookie

Hudson is now 3 months old and still fighting! Last week he had another bronchoscopy to reevaluate the airway. The trachea looked nice and open (no evidence of granuloma/scar tissue)...so that is some good news!! On the other hand, they are still concerned with the healing in the distal airway (at the carina) where a patch was used to widen his right main stem bronchus..the patch is floppy and causing some obstruction..so they used a balloon to try and dilate this area and will look back in the airway tomorrow to reevaluate with the cardiothoracic surgeon. Hudson is still weaning off IV narcotics and 5 liters of oxygen but doing well with all the changes. The feeding tube is in his stomach now and he is tolerating his feeds pretty well with slow changes every couple of days. Hudson has now tried to suck from a bottle 4 or 5 times and this has been quite a challenge for him. He has never taken milk/formula by mouth and the swallowing phase of eating is going to take some time and work. Speech therapy feels that he has the sucking skills he just doesn't know what to do once there is something to swallow and it frightens him. Mommy and daddy are trying to work with him but know that this will be a slow process and it is highly likely that we will go home with a feeding tube but that is ok...Hudson will do it when he is ready!! He is growing well...weighing about 11 1/2 lbs now and continuing to get stronger! More to come after bronchoscopy today.

Bye Bye Granuloma

Mr. Hudson can finally breathe!!! As you all know the past week has been rather rough on the little big guy! After the bronchoscopy last Wednesday he was reintubated and breathing with the help of the ventilator again....but was extubated on Saturday morning. He tried to cry but nothing came out...poor thing..his vocal cords have been through soo very much....but he was breathing fine on his own with the help of vapotherm again....this time all the way up to 16 liters! Sunday he started to have a lot of trouble breathing again and the ICU team considered putting him back on the ventilator...but after going to 20 liters per minute (the maximum) on the vapotherm and starting IV steroids Hudson seemed stable enough to wait it out till Monday evening when he was scheduled for another bronchoscopy to address the granuloma obstructing 90% of his airway. Hudson is such a tolerable baby..he went without food for 16 hours Monday..then bravely went to the OR for another bronchoscopy. The ENT surgeon, Dr. Johnson, was able to debride almost all of the granuloma in the trachea and some of the scar tissue deep down at the carina (where the trachea splits to each lung). Dr. Johnson felt very confident about the results and feels that the remainder scar tissue should be managable through nebulized breathing treatments and future bronchoscopies. Therefore, Hudson is receiving respiratory treatments every 6 hours consisting of steroids, antibiotics and bronchodilators, etc. Dr. Johnson will then do another bronchoscopy later this week or early next week. As of today, Hudson is still on IV steroids and vapotherm but has been able to get back down to a vapotherm level of 8!! Now we just have to keep moving forward! More progress to come!!!

Future Boxer

More hurdles

Hudson is now 10 weeks old and holding strong in the CVICU. The past week has been one of the tougher weeks during his long journey to recovery. Last week his feeding tube was pulled to his stomach for the first time. This was quite an adjustment for Hudson and after several changes to his feeding regimen, a visit from the gastrointestinal team and time he began to tolerate his feeds. Over the weekend his valium was lowered more and he was down to a vapotherm level of 3...all huge steps!! Monday we met with the ICU physician and had scheduled a care conference to meet with all the physicians, nurses, therapists, surgeons...etc..to come up with a plan to move him up to the recovery floor. Then came monday evening. Hudson became very agitated, unconsolable and began to show signs of respiratory distress.....mommy started to notice that he seemed to be gasping for air. Yesterday morning..after a long 2 days of trying to keep Hudson comfortable the ICU team, ENT surgeons and cardiothoracic surgeons felt that it was urgent for Hudson to go back into the OR for a bronchoscopy to see what was going on within his airway. After 2 hours in the OR, Hudson returned to his ICU room intubated once again (on the ventilator). The ENT surgeon found a granuloma (mass of scar tissue) obstructing 90% of Hudson's trachea. He was surprised by the size of the granuloma and said that he has never quite seen a case like Hudson's before... After long discussion with the ENT surgeon as well as the ICU team, it was decided that the safer option for Hudson was to leave him intubated to rest his airway. Yesterday was a hard day...not only did Hudson have to go back to the OR.....but he was stuck over 10 times for IV access and extremely uncomfortable and scared. He was hit with multiple narcotics once again which did not seem to work as effectively as in the past. Sweet boy!!! This morning Hudson lost his IV due to all the kicking and irritability overnight (his IV was in his foot because this was the only place they could get one in)...his central line was pulled over a week ago so he had no IV access... Currently, Hudson is intubated, on IV steroids and narcotics and scheduled to go back in for a new PICC line (IV) in the morning..uugghh They have also pushed his feeding tube back into his small intestine...no more stomach feeding for now..and the ICU team plans to try and extubate him tomorrow afternoon. It is amazing what a strong little boy Hudson has proved to be and his mommy and daddy are so very proud of all the hurdles and challenges he has overcome...he is such a fighter!!! Please keep Hudson in your thoughts and prayes as he continues to push through these difficult times. More to come.

I love my hoodie!

More Improvement

Hudson continues to get bigger and stronger each and every day. He is currently still weaning off narcotics and his vapotherm at very slow rates...and tolerating the changes!! They have tried weaning him several different ways...but slow is the the only way he continues to improve... He is now on clonidine for opiate withdrawal to try and help him have a more comfortable transition to life without methadone and valium...won't that be nice! He has been on heavy narcotics his whole life so it has been quite a challenge. Also, he is now on the lowest level of vapotherm (5 liters per minute..and we started on 12). He has been on vapotherm for almost 3 weeks and once he proves that he can breathe without distress on 5 they will pull the vapotherm and start a regular oxygen nasal cannula with is a lot less flow. This will be a huge transition! He did have some pulmonary edema show up (fluid in the lungs)but with extra diuretics we have seen much improvement...whew! Mommy and Daddy were so very thankful that it was only fluid...his chest xray had been worsening for a couple of days and we were very concerned it could be a perfusion problem (blood flow to lungs)and he would need a cardiac catherization....but so far that is not neccessary. Since he is nine weeks old this week and has never seen life outside the CVICU we have tried to make his life as normal as we can. He probably has the coolest ICU room ever at this point...of course the safari animals...we call it the "Safari Suite"....his one of a kind giraffe swing with the best surround sound noise maker ever...and all sorts of cute toys/eye candy for him to stare at and develop good eye coordination! Oh..and I almost forgot..we now have his own bathtub in his room and we have given him a real bath for the past 3 nights before bed to try and get him on some sort of a routine for when we get to go home. He's not too sure about bath time but always chills out for a couple of hours after his bath and just stares at his toys....so I think he really likes to feel clean.....not to mention the only time he wakes up crying the past couple of nights is when he has dirty pants....smart boy!!! He likes to be clean!! And...if all goes well this week and he can successfully get off the vapotherm then we will be moved up to the recovery floor....yeah!!!!