3. Day 3: Grade 1: Brain Hemorrhage on left side. It was resolved by 30 days. They usually progress to more severe (grade 2 to 4) or can continue as is. Boo's disappeared. Grade 1's are mild.4. By the end of first week, he was transferred to the children's hospital to be able to be near the pediatric cardiologists and the operating room. After two weeks, J, one of our primary nurses, convinces the medical team to not transfer Boo back because she liked him. This allowed him to stay under close supervision of cardiology team, which proved very important.5. First full day at the children's hospital, A requests that V be one of his primary nurses. She is the cardiac specialist NICU nurse. Her last primary has just barely gone home. V's unparalleled experience and knowledge helped to properly diagnose de-saturation as either bronchospasms or basic lung prematurity. Some nurses would believe that he was undergoing a tetralogy of fallot spell but V would do other things first like listen to see if the heart murmur was the same and other techniques. J, another NICU nurse, said when a true tet spell occurs "you never forget it and you are running to the operating room." A misdiagnosis of tet spells could have encouraged the doctors to intervene sooner than was reasonable.6. Bronchospasms. Boo had these often but has since overcome them post the shunt. Something in his lungs would seize up and his oxygen levels would desaturate a lot. He frequently need to “be bagged” where the nurse would manually force oxygen and pressure in to his lungs to make him breathe.7. Subglottal stenosis: Boo is extubated (have the ventilator removed) three times but each time he needs to be reintubated because he cannot keep his blood oxygenated. The ventilator gives Boo lung disease by killing the lung cells charged with the responsibility of blood gas exchange due to the ventilator pressures needed to breathe for him. It is suspected that he has tracheal malacia, meaning that his airwaves collapse onto themselves without the ventilator tube present to keep him open. Study shows his subglottal area of the trachea to be heavily scarred and very sensitive (tracheal stenosis). A week later, when he was finally successfully extubated after his shunt surgery, another bronchoscopy showed the damaged area to be completely healed.8. Shunt: Boo had to gain 600 grams before he would even be considered for a corrective surgery. Week of June 24, Boo reached 1400 grams after two months. He had had no reserve for a few days and was on almost 100% Oxygen. Any movements would cause him to quickly drop oxygen levels. Tuesday morning A and I decide to ask our families to fast for Matthew since he was not doing well. At about 8:30, he experiences a "tet spell"where the pulmonary artery "spasms" and blood to his lungs is restricted severely. V, who has Boo at least once a week, was his nurse on this crucial day. Boo is readied for emergency heart surgery to create a shunt to allow blood to his lung and bypass the restricted pulmonary artery. Pediatric cardiovascular surgeon Dr. K consults with us that this is the only option and it is high risk because Boo is only 1.4 kilos. One item of serious concern is the question of whether Dr. K will perform the surgery with Boo on heart and lung bypass or without. The heart and lung bypass machine has the risk of brain hemorrhages (bleeds). He did decide to put him on heart and lung bypass because his oxygen was so unstable. I gave Boo a blessing with Dr. C and felt impressed to state that he would be fine. I also give A a blessing. We were very fortunate to have Dr. C as our attending physician, who was our attending neonatologist twice: when Boo needed the shunt and when we were discharged which we consider another tender mercy. Sister C stays with us during the surgery and provides the best company we could have asked for. Later we found out that Boo was the smallest infant to go on the heart and lung bypass machine at this children's hospital. At the end of the day, the surgery is deemed successful, as far as Dr. K could tell. After surgery, his oxygen saturations are stable for once! Later we confirm there were no complications from surgery. 9. Boo is finally taken off the ventilator and A can now hold him. His ability to regulate temperature stabilizes and he graduates from his isolette to a crib. 10. Boo is diagnosed with urinary tract infection. Further investigation reveals bilateral urinary reflux. There is risk that he would need some corrective urinary surgery and after six months of taking antibiotics it is resolved.11. Boo is discharged from the NICU Aug. 10. A and I notice that we can speak as loud as we want around Boo and we don’t wake him. The early intervention nurse confirms that he is deaf in his left ear. A later audiologist appointment states that it is possible that his deafness is only fluid build up. He later begins to hear and is woken up by the smallest sounds at night.
12. Boo is also diagnosed with kidney stones due to all of his diuretics/lasix. These have never bothered him and they will likely go away on their own.13. Boo’s cry is very hoarse due to being on the ventilator for 2.5 months. Even after he arrives home in Sept he still has a very soft cry. His cry eventually became a normal baby’s cry.
14. Our first cardiology visit after Boo’s NICU discharge, Dr. G tells us to turn Matthew’s oxygen down to ½ from 1.5 ltr/min. This is bold move since we have needed to keep him here in order to keep his oxygen saturations between 65 and 85%. We turn him down and within an hour he is fine on 1/16 of a liter/min.15. Oct.1, Boo undergoes full open heart surgery for his tetralogy of fallot repair. Shunts are generally good for twice the original size of the infant and now he is 3 times his original shunt weight. He is still small for a tetralogy of fallot repair. My brother, D, and I give Boo a blessing and felt to say that we wouldn’t have complications, something that I would forget but A did not ever forget. The surgery takes one to two hours longer than expected. Dr. H reported that he had never performed such a difficult tetralogy of fallot surgery in his 18 yrs of heart surgeries. Tetralogy of Fallot heart surgeries have been performed since the 1940s. Boo’s right ventricle was so thick that he could not see where to sew to patch the hole between Boo’s right and left pumping chambers. The risk is that the electrical conduction lines, which are nearby, may be severed during the sewing of the patch and require Matthew to have a pacemaker for life. Boo had already been on heart/lung bypass for a long time and every minute was putting him in a worse condition of fluid build up and bodily stress. Dr. H decides to sew the patch blindly and he said he did have to pull harder then usual to do the stitches. Dr. H reports that he accomplished everything he set in to do: take down the shunt, open up the pulmonary artery, and sew the VSD. After surgery, his heart needs to be paced with an external pacemaker. Dr. H said that he saw some evidence of his heart’s electrical recovery while still in the operating room so he says that we will wait two weeks before deciding on a permanent pacemaker and says that he has never had to put a pacemaker into a child after a tetralogy of fallot repair.16. A and I learn there is somewhat of a lifestyle impact with a pacemaker including a list of electrical devices that need to be avoided. For several days, his heart needs an external pacemaker and gets worse in fact where he is “in complete heart block” meaning both ventricles and the atria needs to be paced. Almost all of the medical team believes that Boo will need a pacemaker after the first week, but Dr. H and one random cardiologist that A spoke to once still believe it could come back. On the 11th day after surgery Boo’s heart electrical system begins functioning again.
17. After 3 three weeks, he is able to breathe without the ventilator so the lung disease is no longer getting worse, and he is able to breathe with nasal cannula, oxygen levels similar to pre surgery.18. Post surgery, one of his battles was fluid retention from being on the heart and lung bypass machine. Fluid in the lungs decreases his ability to oxygenate himself. At one point he was on five different diuretics to get him to relieve himself of the fluid, which were the most diuretics that anyone ever knew of any child needing. While in the NICU, he had received several lasix/diuretics in order to keep the fluid out of his lungs so he could maintain his oxygen saturations, which made his kidneys fairly unresponsive to the diuretics. These diuretics had side effects like unbalancing his electrolytes, and his body countered by retaining CO2 to maintain a constant pH. It also pounded his kidneys.19. After surgery they transitioned from feeding him through IV to through an NJ tube that was a constant drip feed that bypassed his stomach. They transitioned him later to an NG tube that delivered food to his stomach but brought with it the gastric reflux (spit up). He also had an oral aversion for quite awhile after surgery. When he was released from the hospital he had to receive his food via NG on a continuous drip. Since A and I had seen him pull out his NG tube during a feed and get milk in his lungs before, this was exhausting to make sure that he didn’t pull out his tube on a 24 hr basis during drip feeds. But gradually he was able to transition to a “bolus” feed where he eats once every three hours and it is not a continuous drip.20. Narcotic withdrawals in NICU and at home characterized by severe agitation, fevers, and sweating. The wean schedule on the narcotic was very slow and we were at the end of the wean by giving him only 0.05 ml of methadone when we accidently put 0.5 ml instead of 0.05 ml of narcotic. We pumped Boo’s stomach through his NG. He was upset the next day but we did not dare give him even a small dose of narcotic out of concern that he already had overdosed.21. Flat Head. His head is misshapen to the point where it is flat on the back and somewhat angled due to the time on his back. We finally decide to seek a medical helmet even though insurance wouldn’t cover it and now his head is shaped perfectly after 2 ½ months.
22. A special RSV prevention injection is given to any infant that was premature at birth, has lung disease or heart disease. Boo qualified with all three. His delicate situation required that we quarantine him from large groups of people (church & Walmart) and visitors that may be sick from November through April which is the end of RSV & rotavirus season.
