Monday, April 22, 2013

Good Things to Come

Another week, another milestone! So much has happened in the past week, I am not even sure where to start. Let me try to go in order starting with last week. It seemed to sneak up on us, but by Wednesday of last week, Hayden sounded horrible. He was coughing, congested, struggling to feed, and throwing up more frequent than he had previously. After reaching an "all-time" high weight of 4,400g (9lbs, 11oz) on Tuesday, we started a steady drop the rest of the week. With Hayden struggling with his cough, congestion, and vomiting, he didn't stand a chance. He dropped a 1/2 pound (which is huge considering how difficult it is for him to put weight on), but not atypical of a sick was just disheartening to see him do so well with weight gain, only to have a big setback like that.

On top of it, Kelsea came down with something herself at the beginning of the week. She was running a fever and vomiting herself, so she was quarantined to the basement! Hayden was struggling, but we couldn't risk him getting even sicker. My parents were gracious enough (it really didn't take that much convincing!!!) to come over during the days and watch Hayden while Kelsea rested downstairs. Hayden had his "1-month" out of the NICU check up with Dr. Warner on Friday which was actually 2 months out due to our frequent visits to Children's. This also means that Hayden turned 3 months old last Thursday as well! Well, late Thursday night, Kelsea's fever returned and we had to scramble to make alternate plans for Friday. Again, my parents were there to help us out. Dad drove down and I was able to ride with Hayden in the back. Again, it didn't take much twisting of dad's arm to get him to go down! Luckily, I was able to be in the back because Hayden decided he wanted to throw up half way down to St. Louis!

His dr. visit went well.....if you take out the vomit he had as the nurse came in to talk to us. Of course, it had blood in it again, but I'm certain this was due to him coughing so much last week. I even didn't feed him before we went back to the room (even though he was getting hungry) because I didn't want him to puke while the doctors were "messing" with him. He showed usual!

Dr. Warner and Dr. Fialkowski were great, as usual. He said things are looking and going better than he could have ever expected. He again talked about how great Hayden's "O" looks and was talking about how he was able to get it all temporarily pushed back into his abdomen during his hernia surgery. Sidenote: I had mentioned before that he was able to push everything back in, but I forgot to mention that everything came back out due to the hole in his abdominal wall.....things won't stay inside until they have the closure surgery and are able to cover his organs with muscle or mesh.

As he was talking about his organs, Hayden was crying because he was hungry. Dr. Warner was still amazed at how well it looked and even seemed excited that we were progressing so quickly. He said he didn't want to push on things this time because he was already upset, but before he finished his sentence, he was doing it anyways! ABSOLUTELY CRAZY AND AMAZING to see everything from the outside be pushed back in to the inside. I was able to see my son with a flat stomach and he wasn't in pain. Yes, he was crying and fussing, but he was doing this before because he was hungry and had thrown up. His demeanor did not change one bit when they started literally shoving everything back inside! It was such a great and emotional thing to see. 

We set up our next appointment for June 14th and at this appointment, we will set up the date for closure surgery!!! We are looking at possibly July or August. Hopefully he will only need one surgery, but they never really know exactly what the surgery will entail or what exact method they will use for closure until they get in there. More to come on that as we get closer to the date.

All weekend we pumped the boy full of medicine and did breathing treatments to battle Croup. Saturday, Hayden was able to get his first bath in two weeks (due to his surgery) and he was a little timid at first, but calmed down and enjoyed it. Yesterday, we finally changed directions after having a long downhill slide the previous 5 days. His weight was up yesterday (and today) and he was sounding, breathing, and eating much better.

Last night, he held on to a rattle for the first time. I know it is something little, but it was such a great thing to see! Today, Kelsea said he continued to do it and was even putting stuff in to his mouth! I know, I know.... we will eventually be telling him to stop putting things in his mouth...but for now....he can do it!

Good things are happening around us. We feel like we may have turned a corner (even though I know there will be more "mountains" to come) and we see some good things ahead. Kelsea and I (both Special Education teachers) were on the other side of the IEP table today. Ok, not an IEP, but an IFP. He has been evaluated by Child and Family Services to get continued therapy services due to his needs for physical supports. After meeting with a physical therapist and developmental therapist, we sat down with the two of them and a case manager and developed an IFP...individualized family plan that outlines the path that will be taken to keep him on track to reaching milestones/goals!

Despite our rough week last week, good things (as I have mentioned) continue to happen to us. I have a feeling there is some more in the near future, but only time will tell. Last week, Kelsea and I were completely floored and humbled by what students, staff, and families at QHS and QJHS did for Hayden. Two former students, Julian and Jordan, spearheaded a fundraising campaign to help offset medical expenses. When Jordan contacted me in January asking for permission to do something like this, I had no clue what the two of them would be up to. Two crazy, fun, creative sophomores wanting to "give back" to me was a little scary! As Jordan told me, they are "only a couple of kids" but what they did was far beyond their years. It was a remarkable showing of what really is happening in the Quincy Public Schools. There were literally thousands of students, families, and staff who put their wants and needs behind ours and for that, we are truly humbled, grateful, and amazed.

No comments:

Post a Comment