Sunday, March 29, 2009

Review of the battles that Boo has won

We have both wanted to give a review of some of the battles Boo has won because it helps us to remember the great things that God has done for us which are inexplicably easily forgotten when Boo faces any ongoing or new hurdles of lesser severity.1. April 30, 2008. A didn’t feel Boo move during the day. It was such a minor thing that we didn’t want to go to the doctor and after praying about it we decided to call the on-call doctor who then directed us to go to the hospital for a checkup. Boo had irregular heart rate decelerations and A was diagnosed with severe preclampsia which is life threatening untreated. University doctors chose to deliver him immediately without waiting the 24-48 hrs to give him steroids/surfactant to be able to lubricate and prepare his lungs for their new role. The surgeon and I gave A a blessing. He was 3 months early and weighed 1 lb 13 oz (810 grams). His heart rate resolved itself once delivered. We felt that God inspired us to get to the hospital and that He was clearly in control of the events.

2. Day 2: Diagnosis of Tetralogy of Fallot, serious heart condition that would eventually require "intervention," (being surgery). The earliest that this intervention could occur was estimated to be at 1400 grams. Everyone’s primary objective and our prayers were to advance him to that target weight and beyond before he had a severe tetralogy of fallot spell.

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.

Friday, March 20, 2009

Getting Stuff Done

Warning: This post is extraordinarly long! I don't know what happened, but just so you know, I did not mean for it to be this way! :)

So basically this picture has nothing to do with the title. I just looked at our blog the other day and realized how sadly pictureless it is! So here is a picture of Boo saying: "Just because you give me a spoon to play with doesn't mean I will eat!" In answer to the big question, no, he is still not eating. It has gotten to the point that our occupational therapist told us to not even try to put anything to his mouth at all until Monday. Wow... Who knew that eating could be such a rough topic?! I guess as long as we are on the topic of eating: Boo has been getting 24 ounces a day of regular breast milk, via the tubey. Due to his inexplicable, yet consistent and excessive weight gain, our pediatrician recommended that we feed him roughly 21 ounces of breast milk per day and 3 ounces of pedialyte! We are doing anything we can to get him to lose weight (or at least to stop gaining), as it seems to be making his breathing worse. He is now back on his original amount of oxygen that he was on when he came home from the hospital in November, which is disappointing. So that makes three of us Steeds who are currently on diets, varying in our levels of commitment thereto.

Now to the title of the post. My life has completely changed! Little Boo now takes 1-2 naps for 3-5 hours per day! WOO HOO!!! (He used to just do twenty minute cat naps and stay up late and wake up early, all of which made for a somewhat less happy me.) One might ask what I do with these extra hours of me-time. I...GET THINGS DONE!! It has been awhile since I have been able to get much done. It was all I could do to make the bed and get dinner on the table, in between all of the things I was doing with or for Boo.

Here are some of the things I have gotten/am getting done.

1. Tonight I pruned the rose bushes. When we were in the process of buying our house, the previous owner mentioned to us that her rose bushes were "the talk of the neighborhood." Personally, I have heard no such talk, but certainly if the neighbors were inclined to talk about these sorts of things, they would not be mentioning OUR rose bushes! Last year we did not get around to pruning or taking care of them and they ran wild. I really wish I had taken a picture, as they were really quite embarassing. At one point, S made a half-baked attempt at pruning them in the fall, but it really was still a mess. Now, they are all at knee-height (just like I learned in my yardwork class). I was glad to have accomplished this at night, when I at least cannot see the spiders. (What I can't see can't hurt me, right?)

2. The other day I organized one of our cupboards (the one that has the cups and bowls and plates in it). I guess S and I have been miscommunicating all this time about this cupboard. Since sometimes he puts the dishes away and sometimes I do, things got disorganized really quickly. After awhile, S started thinking to himself: "I wonder when A is going to organize this cupboard; it looks terrible." I was thinking: "If I thought it would make any difference, I would organize this cupboard. But S puts things in the strangest places, and it would not stay organized long enough for me to justify the effort." Well the other day, S suggested to me that maybe we could organize the cupboard. I told him that I always want to organize the cupboards and I hate having them be so disorganized, but that he puts things in such random places... Anyway, he claimed to have put things in random places because they were so disorganized. And I claimed that things were so disorganized because he put things in random places. It's hard to know which came first, but needless to say, the cupboard nearest the sink is now organized and has remained that way even to this very moment.

3. Yesterday I cleaned the main floor. This did not take me quite as long as I had anticipated. It involved transferring a bunch of stuff (namely, the baby bathtub, the activity gym, and the pack and play) to Boo's room upstairs. He now gets to nap in there. (He took a three hour nap in there today and I shut the door and he slept so well! It was great!) Soon we will move him into it entirely, but we are waiting for Samuel's schoolwork to slow down a little first. Then I vacuumed (while Boo was mad, since it usually calms him). I put away a bunch of papers, organized our little baskets full of stuff, mopped the kitchen floor and cleaned all the surfaces of the kitchen (I usually do a decent job of keeping the kitchen clean. It is one area that really demotivates me if it is dirty). It took all my me-time, but it was worth it for the way Samuel and I have felt in a clean house.

4. I have finally started attacking the office. My goal is to get everything in all the rooms in order so that when my mom comes we will not feel compelled to do that kind of stuff. And we need to be able to fit a couple of beds in them! The office, I am sorry to report, looks even worse than before I started to mess with it. There are just too many papers!! S has put up a fight about getting rid of all his old engineering homework, random mission things and such, which has made my clean up fairly difficult. I have done a fine job of getting rid of his old love letters and the like. :) Certainly I have my own things that are a mess as well, but I am having an easier time parting with them. For now, I believe my only option to be huge containers with labels such as: "S - Engineering; S - Mission; A - College Notebooks (which I cannot seem to part with); A - Mission; etc. I hope that we can fit all this stuff in our crawl space so we don't have to see it ever unless we are looking for it! :)

5. I also got the upstairs bedrooms in working order. As I previously mentioned, Boo will be moving to his room soon, which has many of his things in it already. Our future daughter's room (no, this is not an announcement) looks GREAT! There is no random stuff in there anymore and the bed is made and the curtains are up. Now for the master bedroom (aka the clean clothes room, being where we dump out all our laundry baskets on the bed)... that will not be an easy or a quick one!

6. I have also finished filing all our papers. Well, except for the ones that have come in the mail in the past two weeks. It seems like papers just keep coming and never stop and never get thrown away either. Hopefully at some point here we will stop getting so many bills and statements, etc. All this filing has been driving me nuts! So it has been nice to have it pretty much done.

7. Lastly, yesterday and today I have been raking. Our yard is not that big really (0.19 acres), but for some reason it is completely SMASHED! If anyone has a good explanation as to why our yard is entirely smashed and everyone else's yard in our neighborhood looks normal, I would be happy to know of it. My current strategy is to rake, just like I did last year. It takes forever, but it is a decent workout (moreso last year when I was pregnant) and fun enough. I usually just take Boo for a little walk and he falls asleep, so I park his stroller in our driveway in the shade and I rake. Like I said, I actually kind of enjoy raking, but I just can't imagine why our yard is the only smashed one around!

It seems like there are always plenty of things for me to be doing. I suppose that will always be the case, which is actually a good thing. What would I do during Boo's naptime if nothing needed to get done? (I mean, besides read a book in a warm bubble bath, like I did for awhile this morning... Hmm, can relaxing be considered part of being productive? :) I will say this: it is SOOOO much fun to be a wife and mom and full-time homemaker!!!!!! It is so satisfying to get things done, no matter how big or small the task. Seeing progress is awesome. Being with Boo all day and hearing his little laugh and watching his eyes light up when he smiles and laughing at him when he jumps in his jumperoo (insert photos), and talking to him in a squeaky voice is the best! Having S to talk to every evening is also great. He is a wonderful husband and we always have good, interesting, and often humorous conversation. I wouldn't trade my life for anything!